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gilders
12-30-2017, 04:33 AM
Hello friends. Hope you've all had a good Christmas.
I started the thread "Dialysis choices" 20 months ago when it looked like I would be needing dialysis within a couple of months. That thread evolved into more transplant related discussion than dialysis, so I have now started this transplant thread.

So, after a long 19 month wait I finally got the call to say say that the donor's (my dad) tissue was a close enough match, but due to many previous blood transfusions, I had many antibodies, some of which were "attacking" my dad's blood.
The test was repeated and 1/2 hour ago I got the results..........It's all go for transplant!!!! My antibodies against my dad must have settled down enough.
There should now be a 2-3 weeks wait to see the Multidisciplinary Team at St. James in Leeds and the transplant itself 3-4 weeks later.

My wife is SO excited. I know I should be, but I'm a bit in shock and also very nervous, due to the bleeding problems I have, which have not been resolved.

I'll continue to update my progress so others who end up in my situation have an idea of what to expect.

NatriceRomeo
12-30-2017, 09:13 AM
Iím glad you got a kidney match thatís great! Iím nervous for you! I will be thinking of you & hoping everything goes great.


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Lilly
12-30-2017, 08:35 PM
Its really fantastic that you have a match! It does seem that here is always a little hiccup along with the good, that makes you a bit uncertain to get too excited....But stay strong, and keep us posted. Blessings to you and your family.

Alysia
12-31-2017, 05:20 AM
Wow ! Thank you, Pete, for sharing with us the wonderful news. Praise The Lord. You have waited so long....

I know few people with kidney transplant: 3 weggies on facebook and another fb friend with lupus. Also my accountant did it. All of them are doing great.

Keeping you in my thoughts and prayers and waiting for your coming updates.

drz
01-01-2018, 02:50 AM
Wishing you luck and better kidney function for the New Year:hug3:

Debbie C
01-03-2018, 08:30 AM
I am also sooooooo happy for you. Please keep us posted as the time gets closer. I will keep you in my prayers. What a way to start the New Year.

gilders
01-04-2018, 12:10 PM
Thank you all for your messages of support.
The main headlines for the news in the UK today were all about the NHS and how the head of NHS England has told drs to cancel all operations that aren't immediately life saving (NHS is very understaffed) until after January.
I'm thinking that this may postpone my kidney transplant as the ones booked in for January will be moved to February (the month I expected mine to happen).
Every time we make progress, we then take 2 steps back. :thumbdn:

Lilly
01-06-2018, 02:46 AM
Dear Gliders, I am so disappointed for you....I know you are very frustrated!! I will be keeping you in my thoughts and prayers. Blessings and hope....

gilders
04-01-2018, 07:10 AM
Just in case anyone was wondering how the kidney transplant went, well it STILL hasn't happened. My cardiologist is concerned that due to having vasculitis for over 20 years, my arteries may have hardened and the operation may be too risky. I had another echocardiogram a couple of weeks ago and next week I need to have 2 Myocardial Perfusion scans over 2 days.
I met up with my local transplant Dr at the beginning of the week. He has said that I am now his priority and so long as the heart results come back good, I'll be on the operating table between 3 - 6 months. He did say that that although the repeated immunology tests showed that I am compatible with my dad, it is classed as High Risk compatible. I asked if my dad was still the best option to donate due to it being high risk. He said it was as I have MANY antibodies, so finding a match would be very hard with anyone else.
I will need to take twice as many anti-rejection meds as "regular" patients. Not really happy about that, especially as I'm currently in drug free remission and feel much better for it (except for zero energy, which is to be expected with my poor kidney function).

NatriceRomeo
04-01-2018, 07:56 AM
Just in case anyone was wondering how the kidney transplant went, well it STILL hasn't happened. My cardiologist is concerned that due to having vasculitis for over 20 years, my arteries may have hardened and the operation may be too risky. I had another echocardiogram a couple of weeks ago and next week I need to have 2 Myocardial Perfusion scans over 2 days.
I met up with my local transplant Dr at the beginning of the week. He has said that I am now his priority and so long as the heart results come back good, I'll be on the operating table between 3 - 6 months. He did say that that although the repeated immunology tests showed that I am compatible with my dad, it is classed as High Risk compatible. I asked if my dad was still the best option to donate due to it being high risk. He said it was as I have MANY antibodies, so finding a match would be very hard with anyone else.
I will need to take twice as many anti-rejection meds as "regular" patients. Not really happy about that, especially as I'm currently in drug free remission and feel much better for it (except for zero energy, which is to be expected with my poor kidney function).

Iím sorry about the delay, I can image you are anxious.
I was wondering about the anti-rejection drugs. Do you know what they will prescribe? Iím just wondering because I know imuran is sometimes used & it would be nice (though I understand that it sucks since your in a drug free remission right now) to ďkill two birds with one stoneĒ as they say?? I will keep you in my thoughts & hope all the cardiology tests come back normal & you have a speedy recovery.
Natty


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mishb
04-04-2018, 09:59 PM
Well that sure does suck :crying:

My fingers will be crossed for you to have an amazing 2018 with everything finally falling in place

gilders
04-07-2018, 06:40 AM
I was wondering about the anti-rejection drugs. Do you know what they will prescribe? Iím just wondering because I know imuran is sometimes used & it would be nice (though I understand that it sucks since your in a drug free remission right now) to ďkill two birds with one stoneĒ as they say??

Thanks Natty.
Azathioprine was a great drug for me for many years. I couldn't tolerate Cyclophosphamide when I was first diagnosed and as I had kidney failure Methotrexate wasn't an option. There wasn't any of the newer drugs like Rituximab over 20 years ago. I achieved remission with Aza and pred. For about 20 years I managed all my relapses with pred and Aza, but about 4 years ago Aza stopped working as well as it used to. Not only that, but I had immature, odd shaped, red blood cells which some of the drs blamed the many years use of Aza.

I have been told that I will be having Tracolimus and pred, but as I'm a high risk match, I'll also be having mycophenolate. I've not had mycophenolate, but know others have had this for treatment of Wegener's.

NatriceRomeo
04-08-2018, 08:01 AM
Thanks Natty.
Azathioprine was a great drug for me for many years. I couldn't tolerate Cyclophosphamide when I was first diagnosed and as I had kidney failure Methotrexate wasn't an option. There wasn't any of the newer drugs like Rituximab over 20 years ago. I achieved remission with Aza and pred. For about 20 years I managed all my relapses with pred and Aza, but about 4 years ago Aza stopped working as well as it used to. Not only that, but I had immature, odd shaped, red blood cells which some of the drs blamed the many years use of Aza.

I have been told that I will be having Tracolimus and pred, but as I'm a high risk match, I'll also be having mycophenolate. I've not had mycophenolate, but know others have had this for treatment of Wegener's.

Thank you Gliders,
I truely hope the transplant medications work as well as control WG. I was on Aza and it stopped working for me as well. I tried mycophenolate but it never worked. I hope it does wonders for you! Good luck!
Natty


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Alysia
04-08-2018, 11:34 PM
Thanks for the update, Pete. That's a long long time of waiting.... All you can do is breath deeply and pray. You are in God's hands and he loves you.
I know few weggies who are on cellcept, which should be as good as aza or mtx.
Hang in there and please update us. I keep you allways in my thoughts and prayers ❤

Jaha
04-19-2018, 06:17 AM
I'm wishing you all the best for a speedy and successful transplant.��

gilders
05-03-2018, 06:38 AM
I'm back again with another update and as usual, it's not good news :mad1:
I was told in December that the transplant would happen around the end of January. Then last month I was told it would be around July.
All my investigative work and my father's (the donor) was sent to the hospital that would be performing the procedure, in preparation for the July date. The transplant team at this hospital has said that due to me having antibodies against my father they don't want to do the transplant at this point. They want my father to offer his kidney for the paired/pooled kidney exchange program (he would swap his kidney for someone who is a better match for me). The matching takes place 4 times a year (July, October, January, April). They want to have 4 attempts and if I don't get a match by July 2019, they will look at a straight donation from my father.

I agree that a close match is the preferred option and that is why when I found out that I had antibodies against my father (at the end of last year), I asked if it would be best to join the paired/pooled exchange program. My local transplant dr said that a straight donation from my dad was the best choice as I have so many antibodies (due to previous blood transfusions) that finding a match with someone on the paired/pooled program would be virtually impossible.

I do not know if the drs at the hospital where I am due to have the operation have considered my situation fully. My kidney function looks quite stable at the moment and this is a reason they are using for having me wait 15 months, but my function tends to have dramatic drops, rather than a steady deterioration. The next dramatic drop could be at anytime.
Not only that, but if my Wegener's flares up during this 15 month wait, then the transplant will get cancelled until 2 years after achieving remission.

If they have taken everything in to consideration and still believe that having 4 attempts at a swap will be the best option, then I'm happy with that (although I wish they would have done this 2 years ago when this journey first began).

My wife has also offered to join the paired/pooled swap. We went today to get her signed up and double my chances.
The crazy thing is that after been told 2 years ago that we were blood group incompatible, they are now looking at working around this and having her donate direct to me. This is still unlikely though as I need to have a close matching tissue type and no antibodies against her.

I will now be getting my hopes up every 3 months in case there's a match.

I can't wait until the day that I can write an update with positive news.
At least if anyone else on the forum has questions about the transplant process I'm now in a position to answer questions, as I seem to have gone done every different route towards gaining a transplant.:rolleyes1:

NatriceRomeo
05-03-2018, 09:59 AM
I'm back again with another update and as usual, it's not good news :mad1:
I was told in December that the transplant would happen around the end of January. Then last month I was told it would be around July.
All my investigative work and my father's (the donor) was sent to the hospital that would be performing the procedure, in preparation for the July date. The transplant team at this hospital has said that due to me having antibodies against my father they don't want to do the transplant at this point. They want my father to offer his kidney for the paired/pooled kidney exchange program (he would swap his kidney for someone who is a better match for me). The matching takes place 4 times a year (July, October, January, April). They want to have 4 attempts and if I don't get a match by July 2019, they will look at a straight donation from my father.

I agree that a close match is the preferred option and that is why when I found out that I had antibodies against my father (at the end of last year), I asked if it would be best to join the paired/pooled exchange program. My local transplant dr said that a straight donation from my dad was the best choice as I have so many antibodies (due to previous blood transfusions) that finding a match with someone on the paired/pooled program would be virtually impossible.

I do not know if the drs at the hospital where I am due to have the operation have considered my situation fully. My kidney function looks quite stable at the moment and this is a reason they are using for having me wait 15 months, but my function tends to have dramatic drops, rather than a steady deterioration. The next dramatic drop could be at anytime.
Not only that, but if my Wegener's flares up during this 15 month wait, then the transplant will get cancelled until 2 years after achieving remission.

If they have taken everything in to consideration and still believe that having 4 attempts at a swap will be the best option, then I'm happy with that (although I wish they would have done this 2 years ago when this journey first began).

My wife has also offered to join the paired/pooled swap. We went today to get her signed up and double my chances.
The crazy thing is that after been told 2 years ago that we were blood group incompatible, they are now looking at working around this and having her donate direct to me. This is still unlikely though as I need to have a close matching tissue type and no antibodies against her.

I will now be getting my hopes up every 3 months in case there's a match.

I can't wait until the day that I can write an update with positive news.
At least if anyone else on the forum has questions about the transplant process I'm now in a position to answer questions, as I seem to have gone done every different route towards gaining a transplant.:rolleyes1:

Oh Gliders! Iím so sorry! I will be thinking of you and hoping for a speedy match.
Natty


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drz
05-03-2018, 03:43 PM
It sounds like a difficult and frustrating procedure. I have read about people getting transplants from pigs and also the progress on artificail kidneys seems closer every day. I know one person who had several organs done in one transplant and is doing fine years later. I have friends that do the home dialysis every night at home and they have had no problems yet.

Sorry, you are having to deal with this stress and hope some good resolutions appears for you shortly.

Masha
05-03-2018, 04:35 PM
Gilders, I am putting you on my prayer list. You are going through such an ordeal and so much time waiting for answers. This sounds like stress added to stress. I worked with a girl who was years in the waiting for her transplant, but finally it happened and now twenty years after the fact and she is doing great! This is what I wish for you. Keep your chin up and stay positive. Masha

Jaha
05-04-2018, 12:45 PM
Gliders,
I'm so sorry that it has been such a
grueling process, for you. I don't know what I would do in your situation. Please take good care of yourself and I pray that they come up with a good transplant plan soon!💜

Alysia
05-05-2018, 03:04 PM
Dear Pete,
I am sorry it takes SO long. Stay strong. I think that they do it this way in order to make sure that they afford you the best possibility. Time will tell. Is there a way to publish your search for a kidney ? In newspapers or on the internet or maybe in a TV show ? We have a weggie friend on facebook from UK who was in the TV show "a year later" first with her bad saddle nose and then with her new nose. I can ask her if you will want me to, to see if she can help through that TV show or similar.
Keeping you in my daily prayers. Dr. Phil is also praying for you from his good place in the presence of Our Lord ❤

gilders
05-07-2018, 02:14 AM
Hi Alysia,
I saw the TV episode about the lady with the new nose. It's available on ITV's catch up service in the UK. Others may be able to watch it if using a VPN.
I'm not looking for a deceased donor, at least for the time being. There is only one paired/pooled organ donor exchange scheme in the UK, so if there are other people in my situation, they'll already be on the scheme.
I can increase my chances of getting a match by having more people offer their kidney for a swap. But I can't bring myself to ask anyone. My friends and family know I need a kidney, so if they wanted to offer me one, they would have already. I don't want to put people in a position where they feel awkward saying "no" or say "yes" when they'd rather not want to.
I could try and "advertise" my need for a kidney, but I'm no more special or deserving of one than all the other people waiting.

If l finally give in and start dialysis (like some of the drs think I should), I may have a different view and try harder for transplantation.

Alysia
05-07-2018, 01:39 PM
Hi Alysia,
I saw the TV episode about the lady with the new nose. It's available on ITV's catch up service in the UK. Others may be able to watch it if using a VPN.
I'm not looking for a deceased donor, at least for the time being. There is only one paired/pooled organ donor exchange scheme in the UK, so if there are other people in my situation, they'll already be on the scheme.
I can increase my chances of getting a match by having more people offer their kidney for a swap. But I can't bring myself to ask anyone. My friends and family know I need a kidney, so if they wanted to offer me one, they would have already. I don't want to put people in a position where they feel awkward saying "no" or say "yes" when they'd rather not want to.
I could try and "advertise" my need for a kidney, but I'm no more special or deserving of one than all the other people waiting.

If l finally give in and start dialysis (like some of the drs think I should), I may have a different view and try harder for transplantation.

I understand what you mean and I admire your courage and strength. Hang in there. You are embraced by many prayers.

gilders
05-27-2018, 04:52 AM
UPDATE
I finally got to see the transplant dr at ST. James, Leeds UK (where the actual operation will take place) on Thursday. I was expecting this to be his opportunity to tell me why they decided to cancel the straight donation with my dad and try and get a match in the paired/pooled donation scheme.
I was ready prepared with my concerns over waiting for a match that was highly unlikely to happen. I didn't have to voice my concerns though as the dr has decided that my dad can directly donate to me after all :w00t::thumbsup::)
The dr explained that the antibodies I have against my dad shouldn't be too much of a problem. They were very surprised when my blood was mixed with my dad's and there was a severe reaction. But, apparently, they hadn't realised I had had Rituximab. The team now believes that the reaction was caused by Rituximab and not my antibodies that I have. Therefore the transplant can go ahead. I would have been given a date there and then for the operation for the end of July, but they just want haematology to do a final check on my bleeding problem, but the transplant would be completed before the end of summer.
The news just kept getting better and better.... they aimed to have my dad in and out of hospital within 24hrs and me within 5 days! One of the best pieces of news was that I wouldn't need to be on long term steroids after the operation, which I was expecting.

Less than 24 hours later EVERYTHING changed.
I had an appointment the next morning at another hospital that deals with my vasculitis. This hospital has the best experts for most things, but especially vasculitis and drugs such as Rituximab. The Dr at this hospital said that as the tissue match test was performed more than 3 months (almost 12) after my last RTX infusion, there is no way that RTX could be "killing" my dad's cells. I.e. the reason the other hospital gave for allowing the transplant to go ahead, is invalid. :predrage:
My only hope now is that the hospital in Leeds tried to simplify things, or did a bad job of describing the issue with Rituximab "killing" my dad's cells. But it really doesn't look like the transplant will be going ahead. I'm just going to have to wait AGAIN to find out if it's happening again.

As if things couldn't get any worse, the Dr isn't sure if I may be at the start of another relapse. I have to have been in remission for at least 2 years before I can have a transplant, so realistically, if I'm relapsing, it will be at least 3 years before I could look at getting a transplant. Not only that, but another relapse will completely finish my kidney function. I've been refusing dialysis for over a year now, but any further drop in function and I'll have to give in.

The dr explained that most patients that have a few doses of RTX don't start producing B cells again for over 2 years. Apparently my blood tests from last December (less than 12 months from last RTX infusion) already showed B cells.
My ANCA is negative, but my nose is bad at the moment.

NatriceRomeo
05-27-2018, 05:03 AM
UPDATE
I finally got to see the transplant dr at ST. James, Leeds UK (where the actual operation will take place) on Thursday. I was expecting this to be his opportunity to tell me why they decided to cancel the straight donation with my dad and try and get a match in the paired/pooled donation scheme.
I was ready prepared with my concerns over waiting for a match that was highly unlikely to happen. I didn't have to voice my concerns though as the dr has decided that my dad can directly donate to me after all :w00t::thumbsup::)
The dr explained that the antibodies I have against my dad shouldn't be too much of a problem. They were very surprised when my blood was mixed with my dad's and there was a severe reaction. But, apparently, they hadn't realised I had had Rituximab. The team now believes that the reaction was caused by Rituximab and not my antibodies that I have. Therefore the transplant can go ahead. I would have been given a date there and then for the operation for the end of July, but they just want haematology to do a final check on my bleeding problem, but the transplant would be completed before the end of summer.
The news just kept getting better and better.... they aimed to have my dad in and out of hospital within 24hrs and me within 5 days! One of the best pieces of news was that I wouldn't need to be on long term steroids after the operation, which I was expecting.

Less than 24 hours later EVERYTHING changed.
I had an appointment the next morning at another hospital that deals with my vasculitis. This hospital has the best experts for most things, but especially vasculitis and drugs such as Rituximab. The Dr at this hospital said that as the tissue match test was performed more than 3 months (almost 12) after my last RTX infusion, there is no way that RTX could be "killing" my dad's cells. I.e. the reason the other hospital gave for allowing the transplant to go ahead, is invalid. :predrage:
My only hope now is that the hospital in Leeds tried to simplify things, or did a bad job of describing the issue with Rituximab "killing" my dad's cells. But it really doesn't look like the transplant will be going ahead. I'm just going to have to wait AGAIN to find out if it's happening again.

As if things couldn't get any worse, the Dr isn't sure if I may be at the start of another relapse. I have to have been in remission for at least 2 years before I can have a transplant, so realistically, if I'm relapsing, it will be at least 3 years before I could look at getting a transplant. Not only that, but another relapse will completely finish my kidney function. I've been refusing dialysis for over a year now, but any further drop in function and I'll have to give in.

The dr explained that most patients that have a few doses of RTX don't start producing B cells again for over 2 years. Apparently my blood tests from last December (less than 12 months from last RTX infusion) already showed B cells.
My ANCA is negative, but my nose is bad at the moment.

Oh Gliders,I am so sorry! As I was reading your thread I felt excitement for you then sadness and heartache. I truely hope you are not relapsing and maybe your sinus issues are a change in the weather? I will be thinking of you and sending you virtual hugs and positive thoughts!
Natty


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gilders
05-27-2018, 06:10 AM
Hi Natty and thanks.
I think the nose problems are probably permanent vasculitis damage and perhaps a bit of an infection. I can usually "feel" it when I'm having a relapse quite early on.

I just hope that there was some sort of misunderstanding with the explanation of why my dad's cells were being killed by RTX rather than my antibodies.

Keith
05-27-2018, 06:52 AM
Hi Natty and thanks.
I think the nose problems are probably permanent vasculitis damage and perhaps a bit of an infection. I can usually "feel" it when I'm having a relapse quite early on.

I just hope that there was some sort of misunderstanding with the explanation of why my dad's cells were being killed by RTX rather than my antibodies.

Hard news. Hopefully is misunderstanding.


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Pete
05-27-2018, 07:36 AM
Hi Pete,

Words have escaped me as I read your post. I’m sorry and saddened. I hope it will all be better in time.

drz
05-27-2018, 12:58 PM
I am sorry and sad about your situation.

BenHornsby
05-27-2018, 07:12 PM
Gilders thoughts are with you, it's so tough having the excitement of a solution that does not work out the way you intended.

Ben

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Masha
05-28-2018, 03:59 PM
Gilders, I cannot put into words how sorry I am that you are going through this treacherous roller coaster ride. Such positive hopeful news to be followed with a major let down had to be a hard pill to swallow. My husband and I are wishing, hoping and praying that somehow there will be a more expeditious way to solve your situation. Please, keep all of us posted on your status.
Masha

Lilly
05-29-2018, 06:09 AM
Gliders, my heart is broken for you. I'm so sorry, and sending thoughts and prayers....miracles still happen, I'm praying for one for you. Blessings, Lilly

Alysia
05-30-2018, 04:38 AM
Dear Pete,
My heart is going out to you... keep on fighting in all ways.
Can the 2 clinics make a consultation about you, maybe together with some experts who understand how rtx works, in order to come to agreement what would be the best for you ?
How is your nose so far ?
Keeping you allways in my prayers ❤

gilders
05-30-2018, 09:20 AM
Hi Alysia,
The RTX experts are consulting with their transplant team. Then hopefully, they'll contact my transplant team and decide what is now happening.

I was prescribed some antibiotics and my nose is a little better :smile1: I'm quite certain that it's a slight infection on an already delicate, permanently damaged nose, rather than a relapse. I think the reoccurrence of B cells is RTX losing it's effectiveness quicker than expected, rather than me relapsing.

Hope you are well.

Masha
06-27-2018, 02:20 PM
Hey Gilders,
Haven’t had an update from you in a while. Hope this means no news is good news. You are in my prayers.
Masha

gilders
06-28-2018, 08:35 AM
Hi Masha,

As far as the slight worry that I maybe relapsing, I'm certain there's no relapse.

I haven't done an update as nobody is telling me what is happening. I'm hoping my phone calls to the various hospitals have got them talking to each other.

I did get the results from the latest cross match and it was the same, i.e. my antibodies attacking my dad. But on the results it mentioned that the reaction could be to do with something external. I presume the "something external " is Rituximab, but the other hospital doesn't see how it would effect the results, now 18 months since my last RTX infusion.

I now think it's highly unlikely to happen with my dad.
I'm also thinking that I won't be able to refuse dialysis for much longer, each day is getting harder to just get out of bed.
It's frustrating that one hospital first brought up transplant and dialysis in October 2015, it took 13 months to get an appointment with the transplant team, a further 13 months to say the transplant will be going ahead and a further 6 months of yes/no decisions about it.

Pete
06-28-2018, 09:34 AM
gilders

Hang in there buddy!! There’s gotta be a good way forward for you!!

Masha
06-29-2018, 06:36 PM
Oh, geez, Gilders, I don’t know what is worse your physical weakness or emotional frustration. You have been through so much for so long. I have no right to complain about my Wegeners when I know what is going on in your life. I will continue to pray that everything reaches a positive resolution for you very soon.
Masha

gilders
07-06-2018, 10:49 AM
The transplant looks like it's still on!
I had a phone call today to say that at the latest meeting, they have decided that I can have the kidney direct from my dad. I checked with the transplant nurse that they had reassessed their thinking that it was Rituximab which was causing the rejection problem. They do now agree with me and my vasculitis specialists that RTX wouldn't be effecting the tissue match tests so long after my last RTX infusion .I.e. it is MY antibodies causing the rejection.
When they first saw that I had antibodies against my dad they said that they wanted to try and find a swap for a better match, rather than direct from my dad.

I asked the nurse why they've changed their mind and she said that all she knows is that at the latest meeting they've decided it's worth the risk and I will be having twice as many antirejection drugs.

I'm a bit in shock. I'm so happy it's happening soon, but have concerns as every tissue match has come back positive for rejection and they previously suggested trying to find a better match.

I can only pressume they've considered my dad's age, the unlikelyhood of me being able to avoid dialysis and the odds of finding a match in 12 months so slim, that they're really delaying the inevitable direct transplant for no likely gain.

I really need to try and be positive, but the risks do worry me and after repeatedly getting told it's going to happen then not, I won't believe it until I wake up with 3 kidneys.

Pete
07-06-2018, 11:00 AM
gilders

Hope all goes well for you and your Dad. Am I correctly understanding that they’re not going to remove your kidneys?

gilders
07-06-2018, 11:09 AM
Thanks Pete.
That's correct. They won't remove either of my kidneys. They usually don't remove kidneys unless they are cancerous, you have polycystic kidney disease, or you already have multiple kidneys from previous transplant.

Masha
07-06-2018, 02:26 PM
Hey Gilders, This sounds like you are moving along. Only on this site could we all understand what you are saying about the Rituxan, antibiodies, etc. Positive thoughts are being sent your way. Keep us posted.

Alysia
07-07-2018, 03:59 AM
The transplant looks like it's still on!
I had a phone call today to say that at the latest meeting, they have decided that I can have the kidney direct from my dad. I checked with the transplant nurse that they had reassessed their thinking that it was Rituximab which was causing the rejection problem. They do now agree with me and my vasculitis specialists that RTX wouldn't be effecting the tissue match tests so long after my last RTX infusion .I.e. it is MY antibodies causing the rejection.
When they first saw that I had antibodies against my dad they said that they wanted to try and find a swap for a better match, rather than direct from my dad.

I asked the nurse why they've changed their mind and she said that all she knows is that at the latest meeting they've decided it's worth the risk and I will be having twice as many antirejection drugs.

I'm a bit in shock. I'm so happy it's happening soon, but have concerns as every tissue match has come back positive for rejection and they previously suggested trying to find a better match.

I can only pressume they've considered my dad's age, the unlikelyhood of me being able to avoid dialysis and the odds of finding a match in 12 months so slim, that they're really delaying the inevitable direct transplant for no likely gain.

I really need to try and be positive, but the risks do worry me and after repeatedly getting told it's going to happen then not, I won't believe it until I wake up with 3 kidneys.

Great news. Thank you for sharing. Sounds like your docs have done some serious consultations and thinking, and are going on the best option.

You must be SO excited :)

Happy Birthday to your wife tomorrow, wishing her the best of gifts, a new kidney for you :)

gilders
07-07-2018, 04:16 AM
Great news. Thank you for sharing. Sounds like your docs have done some serious consultations and thinking, and are going on the best option.

You must be SO excited :)

Happy Birthday to your wife tomorrow, wishing her the best of gifts, a new kidney for you :)

WOW, you have a great memory, it is my wife's birthday tomorrow!
She is very happy about the transplant being back on. She's still having the tests that had already been booked, to check that she is fit enough to donate. We've been told too many times before that it's happening, only for them to change their mind.

Alysia
07-07-2018, 04:26 AM
WOW, you have a great memory, it is my wife's birthday tomorrow!
She is very happy about the transplant being back on. She's still having the tests that had already been booked, to check that she is fit enough to donate. We've been told too many times before that it's happening, only for them to change their mind.

Do you mean that your wife might be able to donate you a kidney instead of your father ?

I remember her birthday as it is the same day as my sweetie's. Thank you for remembering his.

gilders
07-07-2018, 08:41 AM
Do you mean that your wife might be able to donate you a kidney instead of your father ?

I remember her birthday as it is the same day as my sweetie's. Thank you for remembering his.

We have incompatible blood groups and were originally told that the only option would be for my wife to join the paired/pooled swap scheme. She still needs all the same tests as a direct donor would need. During these tests they've discovered that I don't have many antibodies against her. I still have incompatible blood group, of course, but they can try to work around that if everything else is a good match. But this would be as a last resort as incompatible blood donations aren't as successful.

So as it stands at the moment, my dad is the one that will be donating directly. If this doesn't happen for any reason then my dad and wife will join the pooled donation swap scheme. If no matches/swaps are found for me, then they would look at direct donation from either my dad or wife.

I am unsure what is riskier as far as rejection - receiving a kidney from my dad who I've already shown antibodies against or my wife who I have less antibodies against, but incompatible blood group??

It's not a nice consideration, but they have mentioned before than with multiple donors it's often best to chose the oldest donor first as I'll have a better chance of receiving another kidney in the future as there's more of a chance the oldest person would not be fit enough (or passed away) by the time the original kidney I receive has stopped working.

Alysia
07-07-2018, 07:30 PM
We have incompatible blood groups and were originally told that the only option would be for my wife to join the paired/pooled swap scheme. She still needs all the same tests as a direct donor would need. During these tests they've discovered that I don't have many antibodies against her. I still have incompatible blood group, of course, but they can try to work around that if everything else is a good match. But this would be as a last resort as incompatible blood donations aren't as successful.

So as it stands at the moment, my dad is the one that will be donating directly. If this doesn't happen for any reason then my dad and wife will join the pooled donation swap scheme. If no matches/swaps are found for me, then they would look at direct donation from either my dad or wife.

I am unsure what is riskier as far as rejection - receiving a kidney from my dad who I've already shown antibodies against or my wife who I have less antibodies against, but incompatible blood group??

It's not a nice consideration, but they have mentioned before than with multiple donors it's often best to chose the oldest donor first as I'll have a better chance of receiving another kidney in the future as there's more of a chance the oldest person would not be fit enough (or passed away) by the time the original kidney I receive has stopped working.

Thank you for explaining, Pete. You have become an expert in kidneys and transplants. I am glad that it might also work with your wife, giving you another option, plan B or so. Praying it will work for the best, this way or another.

I guess you will soon need to have your suitcase ready....

Jaha
07-10-2018, 10:43 AM
Gilders,
I'm happy for you that your transplant is coming soon. Both of your options sound very complicated. You are a true warrior! May God cover you in this!

gilders
07-27-2018, 10:46 PM
I am due to have a scan (August 18th) around the pelvis area to choose as suitable site for the new kidney. But, as always with me, there's a bit of a problem. The dye used for the scan has a risk of causing damage to kidneys. Usually this isn't a problem as it's a low risk (for healthy kidneys), or people are already on dialysis (the dye will be dialysed out), but for people with very poor function it's risky. I spoke to the radiologist who suggested I check with the dr who requested it, but warned that it may be necessary for the transplant to go ahead.
My latest blood tests have also shown a drop in function from 13% to 11%.

Alysia
07-28-2018, 03:24 AM
I am due to have a scan (August 18th) around the pelvis area to choose as suitable site for the new kidney. But, as always with me, there's a bit of a problem. The dye used for the scan has a risk of causing damage to kidneys. Usually this isn't a problem as it's a low risk (for healthy kidneys), or people are already on dialysis (the dye will be dialysed out), but for people with very poor function it's risky. I spoke to the radiologist who suggested I check with the dr who requested it, but warned that it may be necessary for the transplant to go ahead.
My latest blood tests have also shown a drop in function from 13% to 11%.

Thanks for the update, Pete. Such a roller coaster... I hope they can find a way to scan you without any risk....
I keep you allways in my thoughts and prayers ❤

Mattieus
08-29-2018, 12:29 AM
I am due to have a scan (August 18th) around the pelvis area to choose as suitable site for the new kidney. But, as always with me, there's a bit of a problem. The dye used for the scan has a risk of causing damage to kidneys. Usually this isn't a problem as it's a low risk (for healthy kidneys), or people are already on dialysis (the dye will be dialysed out), but for people with very poor function it's risky. I spoke to the radiologist who suggested I check with the dr who requested it, but warned that it may be necessary for the transplant to go ahead.
My latest blood tests have also shown a drop in function from 13% to 11%.


Ok, I am not going to lie: The ups and downs of this post had me clicking to the next page as quickly as possible just to see what happened next. I really do truly wish the best for you. I hope all goes well and it can all be worked out.

Good on you for keeping the conversation going and fighting the fight as well as you have!

-Matt

gilders
08-29-2018, 08:46 AM
Ok, I am not going to lie: The ups and downs of this post had me clicking to the next page as quickly as possible just to see what happened next. I really do truly wish the best for you. I hope all goes well and it can all be worked out.

Good on you for keeping the conversation going and fighting the fight as well as you have!
.
-Matt
Thanks Matt.
I can't wait for the day that I can update this saga with the words "Surgery went well and I'm already feeling like I have more energy"

gilders
12-20-2018, 11:59 PM
I had a Cardio-Pulmonary Exercise Test last week and alpha fetoprotein blood test.
Got a phone call yesterday saying that all tests are now complete and transplant can go ahead. I will have one final Multi Discipline Team meeting within the next few weeks where I will be given an actual date for the transplant. The transplant itself will be done end of Feb/beginning of March!
I've been told similar before and delays have happened, but I'm quite certain that it will go ahead this time.

Pete
12-21-2018, 02:09 AM
Merry Christmas, Pete!! The best gift ever!! Hoping all goes well with the surgery and speedy recovery!!

drz
12-21-2018, 07:08 AM
Best wishes for the Holidays and a successful operation.

NatriceRomeo
12-21-2018, 10:48 AM
Yay! Congratulations! Best Christmas present ever!!


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Debbie C
12-21-2018, 01:56 PM
I haven't been on here for a long time,but had to read up on whats been happening with you. Soooo glad the transplant is on and will keep you in my prayers that there are no further delays and all goes great... Merry Christmas

mishb
12-21-2018, 08:53 PM
Pete this sounds amazing :hug3:
Bring on 2019 and a successful transplant.

I hope all goes well

gilders
12-21-2018, 09:46 PM
Thank you all for your positive comments.
After all the set backs and delays, I think I'll only really believe it's going to happen once they've give me an actual date when I see them within a few weeks.

I'll update as soon as I get a date.

Masha
12-22-2018, 05:44 PM
Sounds like it is a GO! Weggies around the world are cheering you on. I am sending positive thoughts and prayers that this time it happens.
Masha

Alysia
12-23-2018, 01:37 AM
Congratulations, Pete. Best Christmas gift ever indeed.
You are embraced by many prayers, thought and much love from all around the globe, even from heaven - dr. Phil is also praying for you.
Make your bag ready, find some ways to make the time goes faster and keep on writing here if it helps. We are all holding your hand and waiting with you.... ❤

Merry Christmas :hug3:

gilders
12-23-2018, 02:10 AM
Just received a letter for an appointment for surgical out-patients on 28th January 2019. I think this will be the appointment where they will give me the actual date of the transplant.

annekat
12-29-2018, 02:25 PM
Just received a letter for an appointment for surgical out-patients on 28th January 2019. I think this will be the appointment where they will give me the actual date of the transplant.Wow, Pete! It appears I have missed out on almost a whole year of this drama! I guess that's what I get for reading the forum on my phone via Tapatalk. It's not as easy to keep up with new posts. Anyway, I am happy that it looks like it's going to happen! I hope everything goes perfectly for you and your dad, if he's indeed going to be the donor. Let's hope there will be no more changes to the plan..That has to have been exceedingly stressful! I guess in about a month we will be hearing of the date they will set for the surgery! We are all pulling for you!

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gilders
01-29-2019, 04:58 AM
Had the appointment with the transplant surgeon today and have been booked in for Tuesday 5th March for the operation. Both me and my dad (the donor) will stay in hospital the night before the operation. My dad will have his kidney removed from about 8.30am and I will have it transplanted about 11.30am. I probably won't see my dad again until I get home (around a week later), as he will be taken to either the kidney ward, or surgical ward, but I'll have to initially go on to High Dependency ward due to my sleep apnoea. By the time I'm due to return to kidney ward, my dad will be home as he is expected to return home the day after his operation.

Masha
01-29-2019, 06:02 AM
Wow! Prayers across the water. Your decades long story is moving and heart wrenching. How beautiful that your father is your donor. Your surgical date is on my calendar. Blessings.
Masha

Pete
01-29-2019, 08:27 AM
Great news, Pete!! Hope all goes well for you and your Dad!!

annekat
01-29-2019, 11:53 AM
So happy to hear this, Pete! You and your dad will be in my thoughts, and best wishes for a smooth transition. We'll be anxiously awaiting the news that it is done and you are both safe at home.

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Alysia
01-30-2019, 10:35 PM
Great news :hug3:

More prayers from my point on the globe. You are embraced from all over the world, Pete.

Hang in there. Only a bit more to wait.

NatriceRomeo
02-01-2019, 12:24 PM
Thinking of you! Hope all goes well!


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gilders
02-09-2019, 12:21 AM
Grrrrr!
After waiting 3 years for a transplant date, they have postponed it for a further 2 weeks (now March 19th).
The surgeons have decided that due to my increased risks (mostly from bleeding) they are doing the operation at the same time for me and my father. It was originally planned for my dad to go to theatre in the morning and for me to go around lunchtime. But as I am at increased risk of not being able to receive my dad's kidney, they want to begin by cutting me open and if all seems well, they will begin to operate on my dad. Therefore they need 2 operating theatres and 2 surgical teams and the soonest date is a further 2 weeks away.

Pete
02-09-2019, 01:55 AM
Hoping the surgeonsí new plan works well. I canít imagine how frustrating this new delay must be for you and your Dad.

Alysia
02-09-2019, 02:23 AM
Sorry for the delay, although the new plan sounds better, more safe. Praying it will all turn out for good. Hang in there, we are waiting with you and praying.

gilders
02-09-2019, 02:25 AM
Thanks Pete,
This delay makes it more likely I'll need a couple of dialysis sessions before the transplant, which I hoped to avoid. Plus my wife, 2 sons and son-in-law have all booked time off to help with looking after the dog, taking wife to and from hospital, me home from hospital etc. Plus there's various banking issues we had to rearrange while my wife took a month of unpaid leave from work. So yes, very frustrating.

At least they haven't cancelled it, or delayed it for an even longer period.

gilders
02-09-2019, 02:31 AM
Sorry for the delay, although the new plan sounds better, more safe. Praying it will all turn out for good. Hang in there, we are waiting with you and praying.

Hi Alysia,
It probably is for the best, I just hate messing people about, especially when they're trying to help me out. I know it's not my fault or choice, but I still feel guilty.
My dad has already said that if I can't have his kidney, he's happy for it to go to someone else (therefore the original date could be kept IMO), but the transplant coordinators said that even though my dad is happy to give to someone else, their main concern is getting the kidney to the original recipient and passing it on to someone else is done as a last option.

drz
02-09-2019, 05:14 AM
Good luck and best wishes for having a successful transplant with out any more delays or extra stress.

Masha
02-09-2019, 01:36 PM
Oh Gilders,
This is just one more wait to tolerate. No one could say they couldnít stand it, because what choice do you have. I was going to start calculating US EST for 9 am England, March 5th. Iíll just reset the clock. I canít think of anything good to say about this change, but it will give me a couple more weeks to pray for you.
Masha

Masha
03-05-2019, 02:22 PM
Hi Gilders,
Are you still set for March 19?

gilders
03-05-2019, 08:48 PM
Hi Masha,
Yes it's still set for March 19. As you're probably aware, at this precise moment of me writing, my dad should have been on his way to surgery and I would be due down around 4 hours later.

Me and my father will both have some final blood tests, ECG and chest xray this Thursday and we're still due to be admitted on Monday 18th, ready for surgery on Tuesday 19th.

Alysia
03-06-2019, 04:11 AM
Soon... 2 weeks from today.. we pray for you, Pete.
How are you holding up meantime ?

gilders
03-06-2019, 04:26 AM
Hi Alysia,
I'm still very worried, mostly that 2-3 days after surgery my bleeding will be uncontrollable.
I have been writing messages to be given to loved ones if I don't survive. It is silly really as hopefully (and more than likely) I will survive and really everything in the notes should be things that I should have already said face to face to my loved ones, even if I was not having surgery.
I do not have an official will, so legally everything will become my wife's. I am writing a list of which possessions I want handed to various people and know my wife will follow my wishes.

I hope you are feeling well at the moment.

Masha
03-06-2019, 07:47 AM
Gilders,
From my crazy point of view everything you are doing is normal. I would be doing the same thing. Just remember they are going in to fix you.
Yes, we do not say everything to loved ones when we should. But this is not goodbye. This is just clearing the deck. You will come out of this feeling like a hurtin’ frog, but happy as a pig in mud. You will start life anew. Yes, there will be follow up, but the worst will be behind you. You have grand things to look forward to. Life will be an adventure, not a waiting game.
I am now officially asking everyone who reads this post to send good thoughts your way on March 19. If you pray, please pray, if you don’t then look at the sky and make a wish on Gilders behalf.
It could be any one of us. Wouldn’t y’all want the world to join together for hands across the water for you? Mark your calendars. There is strength in numbers.

GO GILDERS GO!

Masha

gilders
03-06-2019, 08:16 AM
Thank you so much Masha.
It will certainly help knowing people are there in spirit with me!

I promise to update as soon as possible after the operation to let you know how it went. I might start a new thread reporting on what happens the days after transplant. Might be useful to anyone else who ends up needing a transplant.

Alysia
03-06-2019, 05:29 PM
Hi Alysia,
I'm still very worried, mostly that 2-3 days after surgery my bleeding will be uncontrollable.
I have been writing messages to be given to loved ones if I don't survive. It is silly really as hopefully (and more than likely) I will survive and really everything in the notes should be things that I should have already said face to face to my loved ones, even if I was not having surgery.
I do not have an official will, so legally everything will become my wife's. I am writing a list of which possessions I want handed to various people and know my wife will follow my wishes.

I hope you are feeling well at the moment.

I guess many of us can relate.
Being a weggie who almost died on 2008, then watching my beautiful Phil passing on 2014, made me think often about my death. I have prepared everything I can for it, like my will, what I want to write on my grave etc. I am not afraid of death. When my time will come, Phil will come to pick me up like he did in Regina's airport, to live eternally in the presence of Our Lord.

Anyway, like Masha wrote above, you are going to be fixed, Pete, to start a much better life. It reminds me of how when I delievered my youngest son, the pain was so bad that I told the nurse: "I am dying". She said: "you are not dying, you are giving birth."

Pete, you are one of the strongest weggies ever, strong in body and spirit. You are embraced by family support and so much love. You can make it and you will. You are and will be surrounded by so many prayers from us. Stay peaceful. We love you.

RiverJoy
03-10-2019, 02:45 PM
Just marked my calendar! Will be praying for you daily! Believing that surgery on the 19th is going to go super smooth and a quick recovery afterwards!!

richard052018
03-12-2019, 03:50 AM
Gilders,

Just want to let you know that I'll be thinking about you on the 19th and pulling for you. Is it possible for a close relative or friend to update the board on your progress if you are out of it for a few days? Your kindness jumps off the computer screen, and everything you do around here is appreciated by us all.


Richard

gilders
03-12-2019, 04:56 AM
Riverjoy and Richard,
Thank you very much. This time next week I'll be in hospital!
Richard, I'm not sure if I'll be able to arrange for someone to take over my "Transplant" thread, but promise to update as soon as I'm able to!
My wife isn't great on computers. If I'm not well enough to update this thread, I won't be well enough to explain to her how to do it, without pulling my hair out :lol:

annekat
03-12-2019, 05:24 AM
Pete, everyone above has said it all, and I can only add that I just now marked the 19th on my calendar, and I know you have what it takes to get through this and you will come out of it better than new. Best wishes to you and your wonderful, generous dad, and your wife and kids, if you have them, who will be going through some anxious hours, no doubt. I'm so looking forward to hearing it is done and you are resting comfortably at home.

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Alysia
03-18-2019, 03:54 PM
More prayers for the surgery tomorrow and for perfect recovery, Pete, for you and for your father. Much love :wub:

Masha
03-18-2019, 04:19 PM
More prayers for the surgery tomorrow and for perfect recovery, Pete, for you and for your father. Much love :wub:

I am with Alysia on this. Prayers across the ocean for one of our own and his wonderful dad.:flapper:

gilders
03-18-2019, 09:02 PM
My son will be here in a couple of hours to take me to hospital.
So long as there's not a bed shortage, everything is all set for tomorrow morning.

This will probably be the last time I'll update this thread until after surgery, so once again I would like to thank you all for your wonderful support especially during these last few weeks.

I will aim to update tomorrow evening, but please don't worry if you hear nothing. I really don't know quite how I'll feel, or even if I'll have access to my phone/tablet while in the High Dependency Unit.

NatriceRomeo
03-19-2019, 12:42 AM
I am thinking of you!!


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annekat
03-19-2019, 03:59 AM
I am thinking of you!!


Sent from my iPhone using TapatalkMe, too!

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Pete
03-19-2019, 05:56 AM
Hope all goes well for you and your Dad tomorrow!!

gilders
03-19-2019, 06:15 PM
It's 6.15 am, I'm all showered and scrubbed, cannula in place and just about to receive my platelets ready for surgery. My dad us on another ward, but I think we're walking to theatre together . I'll update asap.

mishb
03-19-2019, 10:41 PM
Sending prayers and quick healing vibes your way.

All the best Pete for a safe operation and a speedy recovery for you and your dad.
I also hope that your recovery is pain free, and with free flowing wee :hug2:

gilders
03-20-2019, 09:47 AM
Just a quick update, I'll be more thorough tomorrow. Surgery went well, but I'm in a lot of pain. I am in a tangle of wires, tubes, etc
They had prepared for my bleeding problems, but no one knew that my dad would have bleeding problems, he's never spent the night in hospital, nevermind surgery! They put us both to sleep about 8.30am, but couldn't operate on me until 3.30pm as my dad was bleeding bad. So I was put under for around 9 hours. I spoke to my dad on thephone, he's groggy, tired and in pain,but he's making a safe recovery thankfully.

NatriceRomeo
03-20-2019, 10:02 AM
Iím thinking & praying for you & your dad. I hope they give you plenty of pain meds! You have been on my mind all day.


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Alysia
03-20-2019, 04:11 PM
So glad to read your update, Pete, and that surgery went well after all. Praise The Lord. Prayers continue for perfect pain free recovery for you and for your father.

Masha
03-20-2019, 05:41 PM
Oh, thank you so much for the update. Like everyone else, I have been keeping you and your dad in my prayers. Bet your wife is breathing easier too. Thoughts and prayers continue.
Masha

annekat
03-20-2019, 07:19 PM
So great to hear from you so soon after the surgery.. your dad is a hero and you are a fighter... Keep it up, get past the pain, recover quickly, and both of you get safely home for a good rest!

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Pete
03-21-2019, 12:40 AM
Itís great to hear from you, Pete!! Hereís hoping you and your Dad recover quickly and uneventfully!!

Jaha
03-21-2019, 12:20 PM
Pete,
I am so happy that you are doing okay. I know that it has been a long road to get here and you did it. I pray that you and your Dad, get home soon and recover quickly. Please take good care of yourself!

gilders
03-22-2019, 10:15 PM
Sorry for no further updates, I've not been well. Have at least one infection. I'll update when I'm more up to it.

Pete
03-23-2019, 12:40 AM
Hoping they get the infection knocked down fast and that your Dad is recovering well.

NatriceRomeo
03-23-2019, 01:30 AM
Oh no! Please get better soon! Thinking of you!


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annekat
03-23-2019, 02:17 AM
Thanks for letting us know. Continuing to hope and pray for the best for you and your dad.

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Masha
03-23-2019, 02:36 AM
I know it is hard, but stay strong and tell that infection to take a hike. You’ve got things to do and places to be. Prayers continue.

Alysia
03-23-2019, 03:02 AM
Hang in there, Pete, you are a strong warrior and embraced by prayers from all around the world. God loves you and so are we :hug1:

BookNut
03-23-2019, 03:43 PM
Hoping that infection is knocked out very quickly. Healing thoughts and prayers coming your way.

gilders
03-24-2019, 09:37 AM
My dad went home on Wednesday (a day later than planned), but is doing well. I'm still fighting this infection, but there has been some improvement the last 24hrs. I really wanted to do a day by day account to help anyone else who ends up needing a transplant, but I've been to unwell. The surgery went excellent. My kidney function has stabilised around 40%. I have too much of one of the anti-rejection meds in my blood and when that is in range and infection has gone, there's a chance my function will continue to increase. I had my wound drain removed today and catheter tomorrow. I've been reduced to 3 bags/day of IV antibiotics and antibiotic tablets aswell, which will continue until Monday morning at earliest.

Pete
03-24-2019, 09:50 AM
Thanks for the update, Pete. Glad to hear youíre improving and that your Dad is doing well!!

annekat
03-24-2019, 10:12 AM
Great to hear from you! Any improvement in fighting the infection is a very good sign. Glad to hear the new kidney is doing well. And glad to hear your dad has gone home. Don't worry about us, we are glad for any news, but you can only do what you can only do! More power to you!

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Masha
03-24-2019, 10:16 AM
Pete,
We are just so glad to hear from you. When you are feeling 100% then we all want to hear about it. Until then your number one job is to get healthy. I am not surprised you are weak. So glad to hear your dad is home. It is hard to believe that after the long wait and all the changes, it is behind you. I bet there are dozens of things you want to do when your strength returns..all in good time.
Are you eating solid foods yet?
I pray for you every day, throughout the day. And yes, you are a young man. Young enough to be my son. You have so very much to look forward to. I have been in those hospital beds with needles and tubes stuck every which way and it can wear you down. But it is like having a baby, once it is over you forget about the pain and enjoy your new life. So now you can make your wife laugh and tell her some crazy southern lady told you having a kidney transplant is like giving birth!
Anything to put a smile on your face. :tongue1:

gilders
03-24-2019, 10:55 AM
Masha, funny you should ask about if I'm on solids yet.
I ate a small amount of solids a few hours after surgery. The dietician came to see me once I had been transferred from High Dependancy to Renal ward. She was shocked when I told her and she said that no one can manage solids on HD. She was suprised they even had sandwiches to give me. But once the infection started I really struggled to eat.
Even with the infection, I beat my dad to the first bowel movement - a big release after almost 4 days. The antibiotics have been the best laxatives!

Pete
03-24-2019, 11:01 AM
I beat my dad to the first bowel movement - a big release after almost 4 days. The antibiotics have been the best laxatives!

Me thinks that ‘s too much information! ������ Glad you’re making progress!!!

NatriceRomeo
03-24-2019, 11:04 AM
So glad things are going better. It is a relief you are doing better. Iím still thinking of you!
Natty


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Debbie C
03-25-2019, 12:43 PM
Gilders, I haven't been on here for awhile, I have been thinking about you having your transplant. Soooooo glad to hear it is finally over and you are on the mend and your dad is fine. Hope they are able to get the infection gone soon and you can be back home to enjoy your new life. Sending you prayers and love

Alysia
03-25-2019, 03:42 PM
Thanks for the updates, Pete. I am so glad that you are getting better, Thanks be to God. What a joy to see your kidneys' functions at 40 percent already ! Also so glad your father is at home already. He is amazing.
You will tell us all about it when you will feel better. Its so kind of you even now to think about the others. God bless you. Prayers continued.

Alysia
03-25-2019, 03:43 PM
Me thinks that ‘s too much information! ������ Glad you’re making progress!!!

Never too much info, the little joys of a good recovery :hug3:

mishb
03-27-2019, 11:03 PM
Gosh, antibiotics never work as a laxative for me :blink:

I'm glad you managed to keep your sense of humor throughout these past few years, even when things got really rough for you.
I'm also glad that your dad was able to go home, and things are starting to improve for you.

Come on new kidney, you have lots of work to do :hug2:

gilders
03-28-2019, 06:02 AM
I was discharged last night and finally got to sleep in a bed that wasn't hot and sticky.
Well, I say sleep, but between midnight and 7am I had to go pee 5 times (passed 3lts/over 100 fluid ounce). Then it was straight back to hospital for my first post - transplant appointment (I now go 3 times/week). Even with little sleep and recovring from surgery , I still feel more "awake" than after a full night's sleep pre - transplant!
With this new lease of life, I decided to walk from the carpark to the hospital and back. 3 days ago I still needed the nurses to help me from my bed to the toilet. But I must have pushed too hard. Once I got back to the car I was exhausted and weak and 5 hours later I'm still worn out.

I look forward to the kidney settling down as I have to drink 500ml/17fl.oz more than what I peed the previous day. So I'm having to get through 6000ml/200+fl.oz of drinks/day.

Thank you all for your messages whilst I was in hospital.

gilders
03-28-2019, 06:11 AM
Forgot to let you all know how my dad is getting on.
He caught the bus to town with my mum. They had lunch and my dad stayed behind, reading a newspaper, while my mum did a few jobs. They then met back up and caught bus home. He said it was tiring but he managed fine and said next time he'll accompany my mum around town.

At my appointment, it was the surgeon that had operated on my dad that held my appointment.

annekat
03-28-2019, 07:02 AM
Wow, how thrilling that you're back home, except for appointments, and that everything is going according to plan. Also that your dad is doing well and getting around and about. Before you know it, things will be completely back to normal, before your kidney issues. Congratulations on making it through this after all the delays and anxiety! I look forward to hearing more about progress being made.

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mishb
03-29-2019, 11:06 PM
Oh my, I will never take pee'ing for granted again.

I'm so glad that you are home and that both you and your dad are recovering well.

The difference in posts is absolutely amazing.

gilders
03-31-2019, 03:13 AM
I wrote the following on a kidney forum and thought I'd share here. It's quite long and some of the information will be things I've already posted on this forum, so hopefully not too boring -

This is my transplant story from the day before surgery until 11 days after surgery. It's quite long, hopefully not too boring.


I was due to be admitted into hospital the night before surgery, but due to my bleeding risks, I was admitted at lunchtime so that coagulation tests could be done. I was admitted to the renal ward and due to lack of beds, my dad (the donor) was admitted to a general surgery ward.
I didn't sleep well, but think this was more due to the waterproof mattress and pillows and high room temperature, rather than nerves (not that I wasn't nervous).
Awoke early to have a shower (with the surgical scrub I'd been using for the last 5 days) and to have my first of many cannulas. I then received some platelets, due to my bleeding issues.
I was then, surprisingly, asked if I would prefer an epidural and stay awake during the procedure. I politely declined that offer!
My dad and I, had been told that we would be walking to theatre on the day together, but on the day, I was wheeled on a bed to theatre. I was put in an holding area and a few minutes later my dad was also wheeled in. I was pleased to be able to see and speak to my dad before surgery.


Whereas usually the donor's kidney is removed first and then the recipient is "opened up", the plan for us was different. I was due to be worked on first and if I didn't begin to bleed too bad, they would then operate on my dad.
The surgery went as follows -
I was anaesthetised and worked on until the very final stage before the new kidney was connected. This is when things didn't go to plan. My dad's surgical team began to operate on him and whereas everyone was aware of my bleeding issues and precautions had been taken, no one knew that my dad would begin to bleed bad. It took my dad's team around 6 hours to remove his kidney safely, while my surgeon just had to stand around waiting for it. I was finally sewn up 9 hours after being anaesthetised.


My dad was taken back to general surgery ward and I was taken to High Dependency. My dad had been given the option of a catheter and he chose not to have one, but he awoke with one in. I presume this was because surgery was such a long time his bladder would need emptying (which you can't do when asleep). My dad was due be discharged the following day, but they ended up keeping him in an extra day. I was due to return to renal ward the day after, but I picked up an awful infection and was kept on HD until almost midnight on the 2nd or 3rd day after surgery (I really wasn't well so can't remember which day).


My kidney began working immediately and at a crazy rate. It is beginning to settle a little now, but it still produces up to 8500ml and on average 6000ml. I have been needing to match these figures with the amount of fluid I drink. From yesterday, I've been told to drink 5000ml, hoping to persuade the kidney to slow down a little. If my kidney continues to produce 6000 - 8500ml then I'll have to increase my fluid intake again.


My first bowel movement was on the evening I was transferred back to renal ward. It was very painful. Many patients don't empty their bowels for a good few longer than I did. Since that first bowel movement I've had diarrhoea. The nurses think it could be due to mycophenolate and have now split my dose 3 times a day and make sure I take it with food.


I was due to be discharged on the 5th day after surgery. But as I was still needing IV antibiotics 3 tiime/day, I was kept in for a further 2 days.
I had 8 cannulas whilst an inpatient. My veins have always struggled with cannulas and this inpatient stay was no different.
On the 5th day after surgery my catheter was removed. It had caused a cut/tear inside my penis 2 days after surgery. This meant removing it was very painful and the next few times I emptied my bladder it stung real bad. But it was from this point where I made massive progress until I was discharged 2 days later.


Since returning home I feel my progress is slowing down since those last 3 days in hospital. The post transplant nurses think I'm being harsh on myself. They've said that I probably don't realise how little you do in hospital and how much extra you do at home (walking up and stairs, not having nurses doing most things for you, etc).
The pain in the location of surgery has begun to increase. The post transplant nurses told be that after the initial pain from surgery, the pain gets a little less each day. Then becomes a point where your nerves begin to reconnect and this can be very painful (this is the stage I'm at, 11 days after surgery)


I'm struggling to sleep mainly due to my frequent toilet visits and pain at surgery site. It is much harder to get out of my own bed without pain. In hospital I would leave one set of bed rails up so that I could grab it and pull myself up.


For anyone worrying about transplant, I wouldn't worry too much. My 2 main issues were the infection and back pain (I have a bad back and never usually sleep on my back which I had to do after surgery). These 2 things are problems that won't exist for most people.


If anyone has any questions please don't hesitate to ask.

Jaha
03-31-2019, 07:45 AM
Thank you for sharing your experience, this will be beneficial to others. It sounds like you and your Dad, had a lot on you and made it on thru to the rest and healing process. Please take good care of yourself and your new Kidney. Sending prayers for you healing!

mishb
03-31-2019, 05:45 PM
That is amazing Pete, thanks for sharing your results here.

They seriously asked you if you want to be awake :blink::blink:

I hope your pain is getting less each day, and I hope you dad is feeling okay

Take it as easy as possible, and remember, you are allowed to ask for help, I'm sure your family wont mind. :hug2:

Alysia
04-01-2019, 03:19 AM
Wow, totally amazing and fascinating :hug2: Thank you for sharing, Pete. You are a great fighter. It was a tough journey but you have made it :thumbsup:

Do you still have diarrhea from the cellcept or was it the result of the antibiotics ? Are you still on antibiotics ? Do you take pain meds ? Can you feel that you have a new kidney, and if you do - in what way can you feel it ?

Sending more prayers to you and to your wonderful father, God bless you.

gilders
04-01-2019, 03:54 AM
Hi Alysia,

I'll answer your questions.

Cellcept seems to be the main cause of my diarrhea. Splitting the dose in to 3 times/day and taking with food hasn't seemed to make much difference yet.
I finished the day IV course of antibiotics on the last day in hospital. I still take co-trimoxazole once/day and will do for 6months post transplant.
As for pain killers, I'm only taking paracetamol which doesn't really help. I stopped codeine because I constantly need to increase the dose to keep it's effectiveness, plus it gives my chronic headaches once the initial pain numbing wears off.
It's definitely too tender at the moment to actually feel that there is a new kidney there.

I'm sure that in the coming weeks I'll feel a massive benefit. But this recovery period is a bit worse than I was expecting. My dad is doing well and gets a little better everyday. Whereas I seem to be making progress then getting worse. I guess the biggest difference between me and my dad is all the drugs I'm on and the multitude of other illnesses and conditions I have.

Alysia
04-09-2019, 01:44 PM
How are you doing so far, gilders ? Keeping you in my thoughts & prayers ❤

gilders
04-10-2019, 12:24 AM
Hi Alysia,

Thanks for asking how I'm doing.

I've had quite a few blood tests that have been well out of range, but everything now seems to be heading in the right direction.
I'm walking further and quicker each day. Stir in quite a bit of discomfort, but nothing too bad except for the occasional sharp pain (mostly getting out of bed).
I'm passing around 3.5 - 4 litres of fluid/day, so kidney is working well and all the numbers associated with my kidney have been great from the start.

My main concern (except for the stent removal, due in a couple of weeks) is my vision. Before surgery my eye sight was excellent. Then around 5 days post transplant I was struggling to fill in my fluid balance chart as it was very blurry. Since then my near sight is very poor. The last couple of days I've noticed my longer vision is slightly worse also.
I saw the eye specialist at the hospital yesterday. He did scans and had a good look in my eyes. He could not see anything wrong in my eyes. He had me read the chart at distance and whereas I previously could read the bottom line, I could only read the third line up.
He said that, for my age, my eyesight is normal and suggested I just buy a pair of reading glasses. In his opinion it is just age related vision loss. I totally disagreed with this and he said that because of everything I've been through with surgery that I'm probably being over sensitive to everything and just hadn't previously realised how my eyesight was deteriorating. I think this is crazy, I now struggle to read which is something I couldn't have just not realised before the surgery, I read every night in bed.
I'm not sure what to do. I believe that physically my eye looks good, so think that if someone else has a look they won't be able to make a different diagnosis.

Pete
04-10-2019, 01:35 AM
gilders

I think youíre rightly concerned to be concerned about a sudden change in your vision. Iím glad the specialist didnít see anything wrong. Perhaps a second opinion by another specialist (preferably an ophthalmologist) would be in order. Perhaps, as your healing progresses, this issue will resolve spontaneously. If it doesnít, glasses, contact lenses, or laser refractive surgery could be good options.

gilders
04-10-2019, 02:16 AM
Hi Pete,
I think the eye specialist was a ophthalmologist (I'd just forgot what they were called:confused1:).
I'm also hopeful that my eyesight may return to normal once everything settles down.
It does seem to vary at different times of the day, which leads me to believe that no permanent damage must have occurred as I wouldn't expect to have periods improvements.
I have previously tried my wife's glasses on, just for fun, and everything was very blurry. Since my eyesight has deteriorated I have tried them on again and they help immensely with reading. So it's good that I know my vision can be corrected with glasses, but I'd still prefer to have my pre-surgery vision.

Alysia
04-10-2019, 03:57 AM
Thanks for the update, gliders. I am so glad your new kidney is working well and that you are recovering :hug1:

As for your eye sight: have you been on high pred in the surgery and after ? It might be related.
You need an eye dr.'s Check to see if there is a cataract. Mine grew after periods of high pred. Also it can be temporary side effect of the pred or of another med. I also had deteriorating vision when my nutrition was very bad because of diarrhea.

Please update us.

drz
04-10-2019, 06:00 AM
Hi Pete,
I think the eye specialist was a ophthalmologist (I'd just forgot what they were called:confused1:).
I'm also hopeful that my eyesight may return to normal once everything settles down.
It does seem to vary at different times of the day, which leads me to believe that no permanent damage must have occurred as I wouldn't expect to have periods improvements.
I have previously tried my wife's glasses on, just for fun, and everything was very blurry. Since my eyesight has deteriorated I have tried them on again and they help immensely with reading. So it's good that I know my vision can be corrected with glasses, but I'd still prefer to have my pre-surgery vision.

I don't know if this pertinent or applicable, but when my blood sugars are off, my vision is worse. One optometrist recognized this and had me do vision tests three times to try correct my vision to what it was with my average BG levels. You state you still have some abnormal labs yet while in recovery from surgery. Maybe some of them are related to something that affects your vision like blood glucose levels. The opthamologist should be aware of this but it might be good to ask the specific question in case they forgot to check this area.

gilders
04-10-2019, 07:37 AM
Alysia - One of the reasons I liked the hospital that was doing the surgery and after care is that they don't continue with pred for the life of the kidney (my body has had enough pred and I get bad side effects now). I did have one IV bag of pred immediately after surgery, but the eye issues started about 5 days later, plus I never have eye problems after the pred I receive with Rituximab infusions. But I don't know what dose, so if it was especially high, then there's a slight possibility it could be related.
I did already have a sub-capsular cataract. He did spot this (without me telling him about it), but said that it was minor and for someone my age, was normal. He did not have previous results from other hospital to compare, but estimated that it must not have got worse as it was very mild and shouldn't effect my vision, except for night vision, which has been a little poor even before surgery.
My stools are very soft, but I wouldn't quite class them as diarrhoea and I'm eating well, so don't think it's nutrition related.
My main anti-rejection med does list vision disorders. The ophthalmologist seemed to dismiss, saying that drug companies list almost every side effect to cover their backs. Although there are other anti-rejection meds, this is the best one for me. I would only start to request to change this drug if my eyesight becomes any worse as I don't want to put this kidney in jeopardy.

Drz - It is appropriate that you should mention blood sugar/glucose levels. Many patients do acquire diabetes after transplant (think it is due to drugs). Mine has consistently been climbing very slowly and is still in range - 5.6 mmol/l (range is 3.5-7), so shouldn't be effecting my vision. The ophthalmologist did think of this along with what happens with many renal transplant patients - before transplant most do not produce enough urine, so their body's are overloaded with fluid. This happens in the eye also. So after transplant when they begin to pass plenty of water, their eyes shrink a tiny amount and this is enough to alter the lens and consequently their vision. I was fortunate enough that pre-transplant I passed plenty of water (it just wasn't getting filtered), so this scenario doesn't apply to me.

Thanks for all your advice!

annekat
04-10-2019, 12:45 PM
I'm just glad the transplant is done and you seem to be doing pretty well. I hope you get the vision issues sorted out or they go away on their own as your body adjusts to what it has been through.

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Alysia
04-11-2019, 02:25 AM
Wow, gilders, you have become such an expert on kidney's transplant. There are so many issues related. Thanks for sharing all that info.

gilders
04-13-2019, 02:37 AM
This post is not a very positive one I'm afraid.

It is looking like I am rejecting the new kidney.:crying:

My blood results have shown a decline the last 3 times from 47%-36%. I need to return tomorrow morning for repeat blood tests. If my function has not improved, I will be having a scan (it has already been booked) and I will be admitted to the ward. Usually a biopsy would be used to confirm rejection, but due to it being the weekend and the fact that they are so sure it's a rejection that's occurring, they'll begin treating me for rejection. I'm not sure how long they'll keep me in for, maybe it will be until blood results show my kidney is stabilising.

I was so pleased when I found out that this hospital doesn't use prednisolone long term after transplant (my body doesn't do well on pred) and now it looks like I'll be on high dose pred for 6 months.

I'll keep you all updated. Please keep the positive vibes heading my way. I think I'm going to need them these next few days.

annekat
04-13-2019, 02:46 AM
Oh, no, Pete. I will be thinking of you, praying, in my way, and sending positive vibes, as much as I can, and fervently hoping for a solution or resolution to this problem. I hope you can avoid going on high dose pred, as that sounds just awful for you. Just know there are many here that will hold you in their thoughts and prayers and will be sending unlimited positive vibes! We love you!

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NatriceRomeo
04-13-2019, 03:34 AM
Oh no! Iím so sad to hear this. Iím hoping for positive news to come. My thoughts are with you. Please keep us updated. We are all cheering for you!


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Pete
04-13-2019, 06:45 AM
gilders

Rats!! I thought the stars were aligned in your favor on this. Hope they get the problem solved muy pronto!!

gilders
04-15-2019, 02:11 AM
From what I understand -
There's 2 types of acute rejection, acute cellular rejection and antibody-mediated acute rejection. The acute cellular rejection responds well to steroids and the the antibody one is much trickier to control.
Unfortunately as they already knew before my transplant that I have 1 antibody against the donor, it looks extremely likely that I have the complicated one.
I had IV steroids yesterday and today and my function has dropped very slightly again. I had a ultra sound scan yesterday which showed that I have good blood flow through the kidney, no blood clot and no massive lesions or anything that would cause these symptoms. This was good news as I don't think physical damage to kidney can be treated.
I will be having a biopsy tomorrow that should give some clearer answers. I am concerned that my original illness (vasculitis) may be relapsing as I'm showing some signs and this could cause permanent damage to the kidney. It is unlikely though as some of the anti-rejection meds are the same as those used for vasculitis, but it can't be ruled out until I've had the biopsy.

If it is my antibody attacking my kidney (which I think is the most likely scenario) there is ways to combat this with plasma exchange and various strong drugs that will completely deplete my immune system. The problem is they can't keep my immune system so drastically suppressed for long (I would need to live in a bubble). So I think the plan will be to lower the immuno-suppresion and hope when my antibodies begin to build back up, they don't detect the new kidney. I really don't know what my chances are for that?

Pete
04-15-2019, 02:35 AM
@gilders (https://www.wegeners-granulomatosis.com/forum/member.php?u=7952)

You’ve had several miracles to get this far. I hope there’s another one in the offing for you.

How is your Dad doing?

Alysia
04-15-2019, 03:09 AM
Thanks for the updates, gilders. I am so sorry you are going through all these and I pray that your kidney will settle down with no more issues. If it will demand the pred, so be it. We will provide you "a pred support group".

Why do you think that your wg might be active ? Since you are on cellcept it should work for the wg as well. I've noticed that when I am stressed, even when my body is full of rtx at its best working time, I still get some wg symptoms (nose bleedings, ears and joints pains) which disapear when the stress is gone. Maybe this is your case now too, because of the stress. Try to calm yourself as much as you can. You are a fighter and have the best docs and treatments. You are in the hands of Our Lord who loves you more then you can ever imagine. You are embraced by many prayers from all around the world, even from heaven, by pberggren1. Relax, breath, smile and keep on fighting.

gilders
04-15-2019, 03:52 AM
Hi Pete - Dad is still doing great. He's just worried about me at the moment. He jokingly said just after the transplant (when things were going well) "I've looked after that kidney for over 66 years, now you've got to do the same". I totally understand that this rejection is not my fault, I've done everything the drs have asked of me and taken my many meds exactly how I'm meant to, but I still fel really guilty that my dad had to go through quite an ordeal during surgery and now I'm rejecting it.

Hi Aysia - The reason I think there's a slight chance of Wegener's being active is that I was struggling walking yesterday, my throat has become more hoarse and my hips were realy hurting all night with pain radiating down my legs to the knees. I'd managed to avoid taking anything stronger than paracetamol the last few days in hospital and since I've been home, but I had to take codeine through the night. It's usually my knees, feet, hands and other small joints rather than my hips when I'm relapsing, so it might be connected to the increased walking I've been trying to do?
I am stressed at the moment. I wanted to feel somewhat better after surgery (once I'd initially recovered), but feel that steroids will make me feel worse than before the operation.
I think when I know exactly what is happening and what to expect, I'll be able to be strong and get on with however good or bad it maybe.

If the kidney can't be saved I won't be able to avoid dialysis. My wife has offered me her kidney. We know from some early rounds of the matching process that she has incompatible blood, but there is ways to try and resolve this (but I would be again at an enhanced risk of rejection), I don't have antibodies against her, which is one big positive. We didn't get as far as the tissue matching test, but the odds are never good without a blood relative. Therefore it would be most likely that my wife would swap her kidney with another (or a chain of) people in the same situation as us. My main concern is that I have many antibodies due to previous blood transfusions and finding the right blood group and tissue match would become very tricky once my antibodies are thrown in to the mix.

I really thought I'd get a good 10 years or more from this kidney and the prospect of maybe having to go through the stress of waiting for a match and going through the surgery relatively soon, makes it hard to keep my spirits up.
The one thing I won't do is refuse dialysis (even though it's tempting) and accept the inevitable - death. I will fight even if the awful steroid mood swings try to tell me otherwise.

Masha
04-15-2019, 05:09 AM
Oh Gilders,
I ditto what Pete and Alysia said. One day or one hour at a time. My prayers continue.
Masha

gilders
04-15-2019, 05:30 AM
I don't want to come across as being a negative person and want to reiterate that even with some of the Wegeners relapse symptoms, I still feel physically better, at the moment, then before transplant.
Also I'm pretty certain my eyesight is slowly returning to it's pre-transplant excellent vision. :smile1:

annekat
04-15-2019, 06:36 AM
I'm glad to hear it's not all bad and some things, like your vision, have improved. As Alysia said earlier, all your descriptions of what you are going through show how much you've learned about the whole process, and you are giving us a great education, in case it ever happens to us! Best wishes for better news soon.!

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gilders
04-16-2019, 04:41 AM
I had my third and final steroid infusion today.
Biopsy did not occur today as I'd expected for 2 reasons - 1. I had been told to cease warfarin on Saturday, but carry on with heparin jabs. I followed this plan, but was told today that the heparin has to cease the night before the biopsy (I had taken my heparin jab at 6pm yesterday) 2. The main reason - The biopsy had not even been booked.


As a day/outpatient the earliest they could book me in for biopsy would be Thursday. The problem with this is that biopsy results are ready the next day, except weekends and bank holidays. This Friday is Good Friday and results wouldn't be ready until next Tuesday, i.e. after Easter Monday. This is leaving it too long in my and the dr's opinion.
As an inpatient you can jump the queue as an urgent case. I was due to be admitted tonight ready for biopsy on Tuesday, or Wednesday at the latest. BUT there is definitely no beds available on the renal ward. They are trying to get me on a general surgery ward, but as it stands there's is no bed available for me and unlikely that one will become available by tonight. This is a bit of a national crisis within the UK's NHS and has been going on for a few years now. I don't want to come across as anti-immigration and can't say for a fact that any of the beds are been taken up by immigrants, but realistically it is putting a massive strain on the NHS.
They have even said that a bed can't be guaranteed for me tomorrow.


I hate spending the night in hospital, especially when it's just to "jump the queue", but I really need this biopsy doing before Thursday, so appropriate treatment can commence this week, not from Tuesday next week!


My kidney function has been stable at 35% (it had dropped from 46% within 5 days) since I started IV steroids (500mg) each day for the last 3 days, but from tomorrow I will be on oral steroids at a MUCH lower dose. I don't know if this lower dose will keep my kidney function stable, or if it will begin to rapidly decline again.


If only there was an available bed and a slot for my biopsy, I would feel much safer!


Thank you for showing interest and wanting updates. It helps as a release to report what I'm going through and hope it helps anyone else in a similar situation now or in the future.
I'm still happy that I chose to have a transplant and hope my story doesn't put people off. I am a complicated case and most patients won't go through these difficulties. Even if the worse happens and I have to go on dialysis, I will know that I gave transplant my best shot!

Masha
04-16-2019, 05:01 AM
You are definitely giving everything your best shot. I wish I could say and do more than to tell you my husband and I keep you close to our hearts and in our prayers.
Masha

gilders
04-16-2019, 05:14 AM
You are definitely giving everything your best shot. I wish I could say and do more than to tell you my husband and I keep you close to our hearts and in our prayers.
Masha

The prayers help thank you.
I'm being included in the weekly prayer list at our local church. I'd only just told them on Thursday how well I was doing and then the day after I found out it was likely that I'm rejecting the kidney.
Perhaps it's all the prayers that is currently helping to keep my kidney stable and hopefully buying enough time for the treatment to fully begin and become effective.

gilders
04-18-2019, 05:27 PM
Some EXCELLENT news!

Went in for biopsy on new kidney yesterday. They did bloods to check my coagulation level and all the other bloods they usually take 3 times/week.
Amazingly my kidney function had shot up to 51% from 36%. I haven't had a function that high for many years. I hate the side effects of steroids, but if the last 3 days of IV steroids is the reason for this improvement, I'll have to stop seeing them as the devil's pills.

I asked if the biopsy was now necessary as the treatment seemed to be working. They still wanted to do it to get answers and confirm it was a rejection episode. If there's no sign of rejection, then steroids can stop, but I can't see what else it could have been.

The biopsy itself was much better than the previous ones I had in my back, on my original kidneys. But for 10mins to 2 hrs after, I was in a lot of pain. After lying flat on my back for 7 hours they let my wife bring me home at 10pm last night.

I just hope my function remains around 50%!

Masha
04-18-2019, 05:39 PM
Sounds all good. When we didn’t hear from you for a day, I was ready to put an all out alert in search of our hero. Use keep the prayers coming your way.
Masha

annekat
04-19-2019, 03:17 AM
Sounds like very good news, Pete ! What a roller coaster ride you have been on! We hope and pray that you continue to have great news for us! Maybe you can tolerate a more moderate, or eventually low dose of pred, or better yet, none at all! Best of luck and thanks for keeping us posted!

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mishb
04-19-2019, 09:48 PM
I'm just catching up on here Pete.
I hope you now have some good news on your kidney, and that the improvement is still happening.

I agree that pred is evil, but like most of us, I wouldn't be here without it.

Sending healing prayers and more pain free days, to you.

Keep on functioning little kidney, you can do it :hug2:

gilders
04-19-2019, 11:19 PM
Unfortunately the biopsy results hadn't come through by yesterday, so they won't be ready until after Easter now. After the surprising improvement of my kidney function, I'm not too worried about the delay as things seem to be heading in the right direction.

My pain level is completely manageable. I'm a little concerned that I'm still struggling to walk up stairs and up hill without feeling breathless. Just having a shower leaves me worn out. But I guess recovery from major surgery may knock you back a bit, before you start to feel the full improvements.

But mentally I'm SO much better. I wake up feeling like I've actually had some sleep and I want to get out of bed. I've not felt like that for a very long time now. My brain has been so "foggy" and tired 24 hrs/day and now I actually feel "awake".

I think the worse thing to come will be my stent removal. I received the appointment letter yesterday for April 30th. The stent is in place between the ureter and bladder. I will have a cystoscope (with some sort of grabbing tool) inserted through my urethra, through my prostate, then bladder. Then the stent will be grabbed and dragged back through. Apparently it is more uncomfortable for males as the urethra in both men and women can be numbed with anaesthetic, but it doesn't reach the prostate :ohmy:

Pete
04-19-2019, 11:45 PM
gilders

Any chance the procedure can be done under ďtwilightĒ anesthetic? When I had my colonoscopy, thatís what they gave me. It was two drugs, one of which was fentanyl. I was kind of awake, but didnít feel or remember anything about the procedure.

gilders
04-20-2019, 12:02 AM
Hi Pete,
I could ask about that, but in truth I'll probably just "man up" and let them get on with it. I hate making a fuss :biggrin1:

I had a sigmoidoscopy a couple of years ago and before the procedure, I was offered a choice of an injection of some sort of pain relief/relaxant, or some gas/air mix. I lied on my side and the nurse asked which I'd prefer. I said "gas/air", the dr said "he'll be ok, he doesn't need anything". The nurse responded "but he's requested gas/air", the dr still went ahead without me having any sort of pain relief.
So I wouldn't be surprised if I asked for anything beyond the local anaesthetic gel, that I'd get told "you'll be fine with the gel".

gilders
04-21-2019, 12:22 AM
Just got today's blood results through my eGFR has dropped 9% to 42%. Bit gutted, I was so pleased when it had jumped to 51% after 3 days of IV pred. I'm only on 20mg oral pred/day now. I wonder if if my kidney is needing a stronger dose to keep it happy?

Hope there's no delay on biopsy results.

Pete
04-21-2019, 01:10 AM
gilders

Did your doctor say anything about how long it would take for you to recover from the transplant itself? Was anything said about how much your bloods might fluctuate during recovery? I surely hope this result is a short-term anomaly...

gilders
04-21-2019, 09:25 PM
@gilders (https://www.wegeners-granulomatosis.com/forum/member.php?u=7952)

Did your doctor say anything about how long it would take for you to recover from the transplant itself? Was anything said about how much your bloods might fluctuate during recovery? I surely hope this result is a short-term anomaly...

I haven't been given any time frame for how long it should take to recover. I have mentioned on a couple of occasions that I expected to be physically fitter sooner, but the drs and nurses have repeatedly reassured me that I am making good progress (before the likely rejection episode) and that I need to realise that I have had major surgery and my body is having to get used to some drugs that are very hard on your body.

A few days after surgery my eGFR was around 45%. The surgeon was hopeful that it would improve after I'd got rid of the post-surgery infection and once my anti-rejection meds had stabilised. I didn't really improve from 45%, but I was more than happy with that function, so long as it didn't decline.

I asked the post-translant specialist nurse if 45% function was good, bad, or average after transplant. She said that they consider anything from 20%-80% as successful and as I was in the middle of those figures, I should be very pleased. She explained that rather concentrating on how high the function is, what's important is how stable that function is.

To be honest, I feel the lowest I've felt since the transplant. When my function dropped 11% a week ago I was obviously concerned, but action was taken straight away (3 days of IV steroids). The treatment immediately stopped the decline in function and after the 3rd day of steroid infusions I had a nice surprise of a good jump in function.
It has been very worrying since then. The results from the biopsy I had on Wednesday hadn't come through by Thursday, so it will be next Tuesday at the earliest when someone will actually look at the biopsy. Within 3 days of dropping down from 500mg/day IV steroids to 20mg/day oral, my function has dropped 9%. This is why I'm feeling a bit low at the moment. I'm sat at home feeling like my kidney is rejecting at a rapid rate and beyond taking 20mg pred, NOTHING is being done due to Easter and I have to just wait and hope that this rate of rejection slows down, otherwise I can see my kidney function dropping so low before the biopsy results are back that it will be beyond saving. I can phone up and pester a registrar dr, but I'm sure all they will be able to do is say we don't know the most appropriate route of treatment until the biopsy result comes through.

Keith
04-22-2019, 02:59 AM
I am an IT leader in a plant. We ALWAYS have work to do on holidays and take turns providing coverage. What I do is much less important than improving health or saving lives. Sad state of your results are delayed due to resource constraints.


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Masha
04-22-2019, 03:11 AM
Please everybody don’t jump all over me. But I am wondering, Pete, if it would be safe for you to increase your oral prednisone until you talk to a doctor. Boy, Keith is right on! Even our grocery and retail stores are open. Shame on the doctors.

gilders
04-22-2019, 03:16 AM
Keith, I'm struggling not to go on a mad rant, but, I'm really not happy that, at least in the UK, hospitals (except A&E) grind to a complete halt during weekends and especially bank holidays. How they can morally expect patients who are in precarious positions to receive no care from Good Friday to the following Tuesday is beyond me. My wife works at a supermarket and she has to work bank holidays, yet people who have others lives in their hands can just say "no thanks, I fancy taking 4 days off in a row". They should of course not lose these bank holiday days, but should have them spread out throughout the year so that there is some limited cover for bank holidays.
Saturday is not actually a bank holiday in the UK, so surely if they're getting Good Friday, Easter Sunday and Easter Monday off, they could put a shift in on Saturday.

Over the years I've learnt to cope and "wait and see" while giving treatment chance to work, but just sat around feeling like my kidney is rejecting at a rapid rate and nothing beyond 20mg of pred is being done, is very hard to stomach.

gilders
04-22-2019, 03:40 AM
Please everybody don’t jump all over me. But I am wondering, Pete, if it would be safe for you to increase your oral prednisone until you talk to a doctor. Boy, Keith is right on! Even our grocery and retail stores are open. Shame on the doctors.

It's a tricky one. It's really not the "done thing" in UK. Unless we have specifically been told that we self regulate a medication (usually painkillers and things you can buy over the counter), you're not expected to alter doses of any prescribed medication. Obviously if you feel your life is in danger then to hell with "the done thing". I am presuming it was the IV steroids that helped last week, but nobody really knows what's going on with my kidney, until the biopsy result.

I am tempted to ask a dr tonight or tomorrow, but think it will just be a registrar, who tend to not change things without checking with the regular drs. Chances are I'll wait until Tuesday morning and speak to a fully experienced dr. If I speak to a registrar I probably won't feel much more relaxed and may end up not speaking to an experienced dr on Tuesday, worried that I may be coming across as someone who constantly pesters drs everyday.

Thanks for your advice. I certainly won't jump all over you! You make good sense and probably is the best choice, but I don't want to lose the good relationship with the drs that I have.

Alysia
04-23-2019, 03:12 AM
Wow, such a crazy roller coaster :scared: Hold tight, Pete.

I totally understand the resentment over the health system taking their break :predrage:

I am also with Masha, 20mg pred might not be enough. I took on my own even 30mg pred when I felt that I needed it, but Israelis are rude and not as polite as the brits are, right ? :wink1:

Tuesday is over the corner so you will soon get more answers. You deserve to get them so please insist.

I have no doubt that our prayers are holding you, our prayers are powerful - because nothing is impossible with God.

Will continue to pray and will wait for your updates.

annekat
04-23-2019, 11:52 AM
I can only echo the above sentiments, and now it's almost Tuesday here, and it is for you, in the wee hours. I hope you get some satisfactory answers, and some insight into whether more pred would make a difference. I have a hunch it would. Looking forward to hearing the biopsy results. Good luck, hoping it's good news.

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drz
04-23-2019, 02:37 PM
I have no idea as to what steroid dosage is appropriate for treating a patient after a transplant. But to me 20 MG doesn't seem like much. I had a boost to 15 mg from my usual maintenance of 5mg this winter just to deal with some increased flare symptoms and it really helped. But when I was in the ICU units knocking hard on death's door nine years ago I got 1000 units of Solumedrol which equals 1650 units of prednisone. Of course such large dosage have great side effects but it was probably an essential part of why I survived and didn't lose my kidneys totally. My follow up for next year from a taper down from 80 to 20 mg pf pred and then from 20 to 5mg the next year after I switched from CTX to AZA for maintenance.

Your situation also care also makes me appreciate the quality of care I received and my present treatment team. The only time I had anything like a three day wait were the times I tried getting care at the"world's best largest famous treatment center" in Minnesota. And my experiences may have been unusual and not typical of the care most patients receive there. And I was able to get good quality care at other facilities right away.

gilders
04-24-2019, 01:25 AM
I phoned earlier today.
The biopsy result still hasn't come through. The dr is happy for me to continue on 20mg pred. It obviously wouldn't be enough by itself, but I am on 2 other anti-rejection/immunosuppressants (Tracolimus and Mycophenolate).
I will be having blood tests tomorrow and just hope that my kidney function hasn't declined further.

I think tomorrow will be the day when I start getting answers (after blood and biopsy results come through) and a plan will be put in place.
Except for this Easter period, I have been very happy with the care. They have kept a close eye on me and responded rapidly. I'm just happy this bank holiday period is over.

mishb
04-24-2019, 09:46 PM
Pete, you are actually sounding a lot better, within yourself.
I hope this is also true for your kidney

Good luck with tomorrows bloods, and hopefully the biopsy results will also come through

gilders
04-25-2019, 01:51 AM
I have some potentially excellent news!

The biopsy result is back and shows NO signs of rejection!!!
But, as always, with me, things are never quite so simple.
The surgeon was very pleased to inform me that there was no signs of rejection. He said there was some slight signs of damage to the tubules in the kidney, but this is quite common due to the trauma that the kidney goes through during the transplant process and there's a good chance function will improve again.
So all was looking great until he asked how long I'd been on steroids. He then realised that I'd started treatment for rejection (i.e. the IV steroids) before the biopsy. Therefore there is a chance that I WAS suffering from rejection and the steroids worked quickly and by the time I had the biopsy, signs of rejection had disappeared. I was originally told that if the biopsy shows no sigh of rejection I would not need the steroids and could cease them, but now that the biopsy can't be 100% relied upon, he wants me to continue steroids until he's discussed it with the rest of the team of transplant drs.

The only way for the biopsy to show for certain what was going on was to have it BEFORE any treatment. I do not have an issue with the dr who decided to commence treatment before the biopsy for the following reason - I had to wait 5 days for biopsy and due to Easter I had to wait a further 7 days for the results. If treatment had of being held off until I had the biopsy, I believe too much damage could have been done to my kidney. In an ideal world I would have had the biopsy done the same day as rejection was suspected, but that was never going to happen with the NHS.

My blood test results have usually been accessible online by now, but I guess there's a backlog due to Easter break. If my kidney function has improved since Saturday, that would strongly suggest there was no rejection and my kidney is recovering. If my kidney function has deteriorated further, then it could be that the IV steroids before the biopsy were working against a rejection episode and the 20mg oral steroids I've been on since aren't strong enough.
So I'm still hoping for some positive blood results, otherwise we still won't be certain about the rejection, or what should be the best course of treatment.

Pete
04-25-2019, 03:02 AM
gilders

Seems like two steps forward and one step back...

gilders
04-25-2019, 03:03 AM
@gilders (https://www.wegeners-granulomatosis.com/forum/member.php?u=7952)

Seems like two steps forward and one step back...
Better than one step forward and two steps back :thumbsup:

annekat
04-25-2019, 03:36 AM
What a complicated and convoluted time period this has been for you! Thoughts will be with you until, and beyond, the time everything has been declared normal and you can resume your life as before. You have shown the patience of a saint during this whole ordeal. Best of luck to you!!!

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Masha
04-25-2019, 04:54 AM
Now it seems that we have to rely on what got you this far, prayer and positive thinking.
Masha

gilders
04-25-2019, 06:00 AM
The blood results finally came through.
I said earlier that an improvement in function would almost certainly confirm that I haven't been suffering from rejection and a decrease in function could suggest that I am suffering from rejection and the only reason the biopsy looked clear would be due to me starting treatment before the biopsy.

Well, as usual with me, there's never a simple answer as my function has neither increased or declined. Although this doesn't give me a clear answer to what's going on, I think stability in function strongly suggest that there's NO rejection, either because there never was any rejection (just post transplant blip) or the 20mg steroids are stopping rejection.

The main thing is that currently my new kidney is NOT declining in function. So overall I'm very happy.

My function only went above 50% once post transplant. It mainly fluctuated 1-2% around 45%. So my current level of 42% is fairly reasonable. I have been eating more since on steroids and an increased intake of meat can increase your creatinine levels, which in turn can effect your estimated function percentage.

I'll definitely sleep easier tonight. But can imagine I'm going to be nervous before every blood test for a while to come. :scared:

The surgeon has also said that he's happy for me to come to clinic on a weekly basis now, instead of 3 times/week. So he must be confident that things are good!

Thank you all for being there for during these last few weeks. It almost feels like I've got a team of people around the world holding my hand and giving me support. I just hope that from now on things will be smoother and I can relax and enjoy getting my fittness back and generally enjoying life without worrying too much.

Pete
04-25-2019, 06:18 AM
​Great news, Pete!! Normal is a good thing!!

Masha
04-25-2019, 07:29 AM
Normal! Yippee! Yippee! Yippie!

annekat
04-25-2019, 09:38 AM
More power to you, Pete!

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Alysia
04-25-2019, 02:21 PM
Great news, Pete, our prayers are heard - Praise The Lord, happy dance :hug3:

I love to read how you explain the results' meanings and analyze them. This thread is a treasure for anyone with kidneys' involvement.

Will you need to stay on the 20mg pred then ? For how long ? How do you feel with it ?

Prayers continued, with much love.

mishb
04-25-2019, 09:56 PM
Gosh you have been on that never ending Wegener's roller coaster over the last few days

Fantastic news for you now :hug3:

Thank you for writing it all up for us, in a way that we can understand.

Keep on working little kidney

Hey, do you have a name for it yet? Tom, Barry ?? :lol:

gilders
04-26-2019, 12:37 AM
Hey, do you have a name for it yet? Tom, Barry ?? :lol:

Well, I received it from my 66 year dad, so maybe I should call it "Old faithful"

Pensioners get various benefits and discounts. As at least part of me is of a pensionable age, maybe I should start applying? :lol:

gilders
04-26-2019, 12:46 AM
.

Will you need to stay on the 20mg pred then ? For how long ? How do you feel with it ?



Just received phone call. The surgeon spoke to transplant drs and it has been decided that I can reduced pred from 20mg to 10mg from tomorrow. I think they will monitor kidney function and so long as it doesn't begin to decline as the pred is lowered, I will slowly taper off it.
The side effects aren't bad at the moment, they tend to start after about a month with me. They are making me extremely hungry though, but I'm being sensible with food. Hopefully I'll get below 5mg before the more serious side effects kick in (I usually tolerate 5mg or less).

I just need this stent removing on Tuesday, then that should be the worst of it over with. I'll only be going to hospital once a week and can start living a normal life. The rejection drugs will hopefully help keep my Wegener's in check too.

Jaha
04-26-2019, 02:01 PM
Pete,
I am so happy for you and pray for continued improvements everyday. You are a true Warrior! You have been quite brave and patient with all that you have been through. I am wishing you all the best with your taper. Thanks for keeping us updated, it has educated all us about the transplant procedure. Keep on keep'n on!

Pete
04-26-2019, 11:40 PM
Well, I received it from my 66 year dad, so maybe I should call it "Old faithful"

Pensioners get various benefits and discounts. As at least part of me is of a pensionable age, maybe I should start applying? :lol:

Your sense of humor is outrageous!! Glad to see it!! Lol

gilders
05-01-2019, 03:34 AM
The stent came out earlier today. :thumbsup:
I watched the video feed while the nurse "fished around" for the stent. It was a bit tricky to grab as the stent had managed to to lie completely flat against my bladder wall. Therefore she struggled to grab the stent without grabbing my bladder wall.
If anything, even with the slight difficulties, it wasn't quite as bad as I was expecting.

So happy that that should be the last of the invasive procedures.

I'll be back at hospital tomorrow for my, now weekly, check-up. So long as my kidney function is stable/improved, I think things should go very well from now on.

More good news, my INR was in range, so after 7 weeks of injecting my stomach with heparin, I no longer need them. Also, after 6 weeks of wearing compression stockings, I no longer need them.

Pete
05-01-2019, 05:32 AM
gilders

Iím glad to see the good news keeps on coming!!!

annekat
05-01-2019, 10:27 AM
gilders

Iím glad to see the good news keeps on coming!!!Me, too!

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NatriceRomeo
05-01-2019, 12:29 PM
So happy that you have good news finally! Still thinking of you everyday & follow your recovery.
Natty


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gilders
05-02-2019, 07:07 AM
Blood tests today showed kidney function still stable at 42%, so looks like whatever caused the previous dip is in the past now. :thumbup:

mishb
05-03-2019, 10:13 PM
Some excellent news for a happy dance here Pete

:hug3::hug3::lol::hug3::hug3::lol:

gilders
05-10-2019, 03:06 AM
Had my weekly appointment yesterday.
The good news is that I can drop pred from 10mg/day to 7.5mg.
I won't call the other news "bad news" as it's only a small drop in kidney function (42 - 40) and small changes can be due to many reasons (how hydrated you are, what you ate the day before, etc). It does make next week's blood test quite important. A further drop could suggest all is not well. I wouldn't normally be concerned, but as my function has twice dropped rapidly since the transplant, I am little more concerned.

annekat
05-10-2019, 04:07 AM
It's understandable that you would be concerned about next weeks test. We will keep our fingers crossed and knock on wood, along with praying and positive vibes. I hope the result is favorable. Great news that you get to drop the pred! That must show that your docs think you are doing pretty well. Best wishes, and keep up the positive attitude!

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Alysia
05-12-2019, 01:17 AM
We continue to pray, Pete.
Can this change be related to the decrease in the pred ? And if so, would more pred help ?

gilders
05-12-2019, 07:38 PM
We continue to pray, Pete.
Can this change be related to the decrease in the pred ? And if so, would more pred help ?

I don't think the decrease in pred is directly related to the decline in function. But if the decline in function is due to rejection, then the pred would have been helping to stop the rejection and reducing the pred could have started the rejection process again, which in turn could be seen as the decrease in pred contributing to reduction in kidney function. (Hope that made sense).

I still believe that this slight decline in function is just what anyone of us could see in our blood results. All should be more clear on Wednesday when I get my next lot of bloods done.

Jaha
05-15-2019, 12:15 AM
I am wishing you all the best for better results. Please take care of yourself!

gilders
05-24-2019, 02:29 AM
Just a quick update.

My blood results showed a tiny 1% reduction in kidney function last week. Not happy that it's another drop in function, but it was so small drs aren't concerned. In fact I've been moved from weekly appointments to fortnightly. Unfortunately this clashes with my vasculitis appointment at Addenbrooke's, so I'm now back at the transplant clinic on 3rd June (almost 3 weeks). This seems a bit too long for me especially has things haven't gone too smoothly.

Well as it now turns out, I'll be back in clinic tomorrow. I awoke this morning with discomfort around my new kidney area. This often happens and I think it's because I tend to sleep on my side or front, putting pressure on the kidney. But this morning I had a swelling (about the size of a large fist) approximately 10cm above my kidney (just to the left of my belly button). I contacted the transplant nurses who liaised with the surgeon and they asked me to get an emergency appointment with my GP (average wait times are about 4 weeks+ for routine appointments) and it was suspected that I have an abdominal hernia (not uncommon after kidney transplant surgery). My GP agreed that I was swollen and there's tenderness and discomfort, but couldn't diagnose a hernia as it didn't move when I cough. She contacted the transplant team for advice and I need to go tomorrow morning for blood tests, an ultrasound and for the surgeon to examine me.

I still believe that it's most likely an hernia. Although it doesn't move when I cough, it seems to when I sneeze. I was told "no heavy lifting for 6months". I think I may have overdone it. My wife has been back at work for a couple of weeks and I can't just leave all the housework for her. I didn't think that I'd lifted anything heavy, but maybe doing thing like picking up a basket of freshly washed clothes is enough to cause hernia?

annekat
05-24-2019, 07:26 AM
Thanks for the update, Pete... I'd been wondering a little. It seems like there's no end to the possible complications, even if not serious but still troubling. If the docs think you are generally doing OK, that's a plus. Good luck with that possible hernia, I hope it can be dealt with easily. Will be thinking of you and sending healing vibes across the ocean.

Anne

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drz
05-25-2019, 05:07 AM
i hope they get it sorted out quickly and that it turns out to be an easy fix for you. It must be hard dealing with all the uncertainty about what is going on in your body while hoping for a good outcome to all of it. Best wishes to you.

Alysia
05-30-2019, 04:30 AM
Just a quick update.

My blood results showed a tiny 1% reduction in kidney function last week. Not happy that it's another drop in function, but it was so small drs aren't concerned. In fact I've been moved from weekly appointments to fortnightly. Unfortunately this clashes with my vasculitis appointment at Addenbrooke's, so I'm now back at the transplant clinic on 3rd June (almost 3 weeks). This seems a bit too long for me especially has things haven't gone too smoothly.

Well as it now turns out, I'll be back in clinic tomorrow. I awoke this morning with discomfort around my new kidney area. This often happens and I think it's because I tend to sleep on my side or front, putting pressure on the kidney. But this morning I had a swelling (about the size of a large fist) approximately 10cm above my kidney (just to the left of my belly button). I contacted the transplant nurses who liaised with the surgeon and they asked me to get an emergency appointment with my GP (average wait times are about 4 weeks+ for routine appointments) and it was suspected that I have an abdominal hernia (not uncommon after kidney transplant surgery). My GP agreed that I was swollen and there's tenderness and discomfort, but couldn't diagnose a hernia as it didn't move when I cough. She contacted the transplant team for advice and I need to go tomorrow morning for blood tests, an ultrasound and for the surgeon to examine me.

I still believe that it's most likely an hernia. Although it doesn't move when I cough, it seems to when I sneeze. I was told "no heavy lifting for 6months". I think I may have overdone it. My wife has been back at work for a couple of weeks and I can't just leave all the housework for her. I didn't think that I'd lifted anything heavy, but maybe doing thing like picking up a basket of freshly washed clothes is enough to cause hernia?

Any news, Pete ? Praing for you. Please let us know how are you doing....

gilders
05-30-2019, 05:36 AM
Hi Alysia,
I thought I'd wrote an update, but mustn't have (must be the Pred playing it's mind tricks).

The Ultrasound showed good blood flow in kidney and bladder was good. The area where the swelling is didn't show an obvious hernia, but the nurse/technician performing the scan admitted that there's other scans that would be best used for hernias.

The blood tests were fairly good/stable. Kidney function has dropped yet again, but only by one percent. I found out that this is to be expected while you are recovering. The kidney function percentage (eGRF) is calculated mostly from creatinine. As creatinine is a waste product that comes from the normal wear and tear on muscles of the body, the more you exercise and consume meat, the more creatinine you'll have in your blood no matter how well your kidneys are functioning. I have been exercising more each week as I slowly feel up to it and as the first few weeks I hardly moved (i.e. didn't use muscles) it is expected for the kidney function to look like it's dropping, when it actually isn't.

Back to the swelling. It just so happened that the swelling had gone down a lot since the previous day. After blood tests and scan I was seen by one of the surgeons (the only one that I'm not too keen on). He tried to convince me that what I was feeling was my new kidney. I told him that I could feel the location of my kidney much lower down, near my scar. He said that what I was feeling near my scar was the fluid that occurs after surgery, that then hardens. I still didn't agree with him, but sometimes it's hard to argue with the professional. I stupidly didn't think to mention that when I had the scan about an hour earlier, the nurse/technician talked me through it and the kidney was near my scar on the scan!
The result was to keep an eye on it and if it becomes larger or painful, to tell them. Although not the best result I understood why the surgeon seemed happy with it, as the swelling wasn't very large and had decreased in size by a lot in less than 24 hours. The blood results and scan showed nothing sinister either.

I'm at Addenbrooke's on Friday (Vasculitis) and back to St. Jame's, Leeds on Monday to see transplant Dr. I'll mention it to both and see if they have any ideas what it could be.

Alysia
05-30-2019, 10:02 PM
Thanks for the update.

Thanks God the swelling had decreased. I am glad that after all you are doing better, even exercising.

That's interesting what you wrote about how the creatinine is affected by exercises and eating meat. What I've noticed is that the creatinine can be falsly high if I am dehydrated.

Keep on getting better. Keeping you in my thoughts and prayers.

Pete
05-30-2019, 10:19 PM
Thanks for the update.

Thanks God the swelling had decreased. I am glad that after all you are doing better, even exercising.

That's interesting what you wrote about how the creatinine is affected by exercises and eating meat. What I've noticed is that the creatinine can be falsly high if I am dehydrated.

Keep on getting better. Keeping you in my thoughts and prayers.

I’ve noticed the same thing. Last year, my heart catheterization was delayed for several hours because my creatinine was too high. It took awhile to hydrate me to the point where my creatinine dropped into the normal range. My creatinine runs a little high most of the time. I eat red meat daily and probably don't drink enough water. (I guess beer doesn't count...)

gilders
05-31-2019, 04:39 AM
I suspect that many results may be falsely high if you're dehydrated. After all less water in your body/blood will lead to higher concentration of most things.

My swelling went down a lot on the day the surgeon examined me, but from the day after it was quite large again, although not as large as the first day. I'm still not overly concerned, I just like to know what's going on in my body.

Alysia
06-20-2019, 02:30 AM
How are you doing so far, gilders ?

gilders
06-20-2019, 03:07 AM
Hi Alysia,
My kidney function has continued to decline 1-2% evey couple of weeks. I've also had much less energy last week or so.

I saw one of the specialists today and they think that it's due to the amount of Tacrolimus (antirejection drug) in me, that's causing the problems. I'm having my dose reduced and hopefully I'll begin to feel better and my kidney function should improve. If it doesn't they'll look for other reasons.

My function was 36% 2 weeks ago. The results for today haven't come through yet. The dr warned me that she expected my tacrolimus level (in my blood) will have risen since last time and consequently my function will look like it's dropped.

NatriceRomeo
06-28-2019, 09:14 AM
Iím sorry gliders! I was hoping and praying that you would be recovered by now & dancing on tables! Iím still thinking of you


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annekat
06-29-2019, 03:53 AM
I've been wondering, Pete. Using Tapatalk I am not always informed of new posts. This journey of yours just keeps getting more complicated! Dang. It sounds like the docs are well on top of the ins and outs and the reasons why. I hope that an adjustment of your meds will indeed make a difference! And how is your dad doing? I'm assuming he's fine, but want to make sure.


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Alysia
06-30-2019, 04:33 AM
Keeping you in my thoughts and prayers, Pete.
I hope the fluctuations in the kidneys functions are not significant and that your docs know how to treat it. Please update us when you can.

drz
07-01-2019, 02:31 AM
Sorry to hear about the fluctuations in kidney function and extra stress it causes. Hope things get better soon.

Alysia
07-03-2019, 02:55 AM
I've started to be worried about gilders. His last update is June 19. He usually comes to update more often, right ? Praying..

annekat
07-03-2019, 08:13 AM
Good question, Alysia. I had thought he had Liked something I wrote on the 28th, but just looked, and it was the other Pete. I know his username is Gilders. So now I'm a little worried, too. I hope we hear from him soon .

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gilders
07-05-2019, 03:29 AM
I'm sorry for any worry caused by not updating as frequently as usually. My blood results from the last day I updated (June 19th) showed still no improvement of kidney function, but thankfully, no deterioration.
I had more tests last Friday and the day after I went on a short vacation with my wife, returning last night (one of the reasons I've not updated recently).

The good news is that when I checked my blood results from last Friday, the kidney function has increased to 40%, from 36%. This is the first increase since April 17th, with the majority of my previous 10 blood tests showing a decline in function.

It looks like the reduction in my main anti-rejection drugs has helped my kidney. I also managed to walk further than usual on most of the days during our vacation, so I'm hopeful that things are heading in the right direction.

I noticed that Anne asked about my dad. He's still doing really well. He really is proof that donating a kidney does not effect your health negatively.

Alysia
07-06-2019, 04:21 AM
Thanks for the update. I am so glad that the kidney's numbers are better after all. I wonder if the small fluctuations are not a natural mistake of scales in the lab. I think that with some tests it can happen. So glad that you are doing better and had a good vacation.

Thank you for "wearing" the bathorse avatar in memory of my Batman and our dear Barbara, whose birthdays are coming soon, on July 7.

Happy Birthday to your wife as well, who has birthday also on July 7. In Hebrew we say: may she be different for long good life.

annekat
07-06-2019, 06:29 AM
Thanks, Pete, for the update, and I'm pleased to hear that your kidney numbers are now improving. Also that your dad is doing well, and that you took a vacation with your wife. Keep up the good news, and have a great summer with your new kidney.

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NatriceRomeo
07-07-2019, 02:20 AM
Gliders,
So relieved things are a little better and you are able to walk further. I am also very relieved that you dad is doing well! Hopefully things will continue to improve.


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mishb
07-07-2019, 10:43 PM
Great news Pete :thumbup:
I hope you went somewhere nice for your vacation, you certainly deserved some R&R

Fingers crossed for lots more improvement in the coming months

Jaha
07-08-2019, 04:42 AM
I'm so happy that you and your wife went on vacation to get away for a bit. It helps to reset your mind and body. I hope things keep getting better day by day for you! Take care!

gilders
07-13-2019, 07:06 AM
As mentioned in my last post, after weeks and weeks of a slow decline in kidney function, I eventually had a 4% increase, which we thought was due to a change in dose of my anti-rejection drug.

I had a routine blood test on Wednesday and my function has dropped 5%. I was gutted after finally thinking things had turned the corner, the decline in function has started to reverse, only to see the good result disappear and a further reduction.
I got a call the next day requesting that I return today (Friday) for repeat blood test. My results aren't showing yet online, which is unusual, so hopefully they'll be available tomorrow and show some improvement.

Pete
07-13-2019, 08:13 AM
Oh snap!! Címon kidney!! Do your thing!!

annekat
07-13-2019, 12:27 PM
Oh, rats! I'm sorry to read that. Hoping and praying things turn around for the better again. You must have the patience of a saint, putting up with these inconsistent results. Hang in there!

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Alysia
07-13-2019, 02:48 PM
As mentioned in my last post, after weeks and weeks of a slow decline in kidney function, I eventually had a 4% increase, which we thought was due to a change in dose of my anti-rejection drug.

I had a routine blood test on Wednesday and my function has dropped 5%. I was gutted after finally thinking things had turned the corner, the decline in function has started to reverse, only to see the good result disappear and a further reduction.
I got a call the next day requesting that I return today (Friday) for repeat blood test. My results aren't showing yet online, which is unusual, so hopefully they'll be available tomorrow and show some improvement.

So sorry the numbers declined again. Thank you for the update.

I wonder, when the numbers are down do you also feel a change or is it only the numbers which tell about it ?


Stay strong. We pray for you.

gilders
07-14-2019, 02:51 AM
So sorry the numbers declined again. Thank you for the update.

I wonder, when the numbers are down do you also feel a change or is it only the numbers which tell about it ?


Stay strong. We pray for you.

It's hard to say. I'm still having good days where I definitely have more energy than before the transplant. But my bad days seem even worse than before transplant.
There is the possibility that my bad days aren't actually worse than before transplant, but as I now have some good days to compare them with (pre-transplant I didn't really have good days), it makes them seem much worse.

I think my main concern (except for declining kidney function), is that for the first 2 months after transplant, I slept much better, woke up early, wanted to actually get out of bed and enjoy the day, plus I also had much more energy. Now I feel the mornings are almost the same as before transplant (i.e. the opposite of all the positives I've just mentioned).

Alysia
07-14-2019, 03:11 AM
for the first 2 months after transplant, I slept much better, woke up early, wanted to actually get out of bed and enjoy the day, plus I also had much more energy. Now I feel the mornings are almost the same as before transplant (i.e. the opposite of all the positives I've just mentioned).

Can it be related to the amount of pred that you take ? Or to stress because of the decline in the numbers ?

May your numbers be higher, May your kidney behave good, May your days feel good, May you feel energetic and joyful. We pray for a perfect recovery.

mishb
07-14-2019, 07:25 PM
C'mon little kidney, you know you can do it :hug2:

Jaha
07-16-2019, 10:41 AM
I'm praying that all will level out for you and you will feel better soon! Please take good care of yourself!

gilders
07-19-2019, 12:04 AM
Just a quick update.
There was a delay in receiving my latest blood test results, but I'm happy to report my kidney function has improved slightly (by 1%, to 36%). It's not a big improvement, but with so many results showing a decline in function, any results that shows the slightest improvement is reassuring.

annekat
07-19-2019, 04:07 AM
Well, I wish it was more of an improvement, but agree that it is worth being happy about in the face of all the previous ups and downs. I guess it's just going to be that way for awhile. Thanks for the update, and looking forward to the next one, which we can hope will be good. The stress of waiting for results must be hard on you, and I hope you've found ways to relieve that stress. All the best to you!!!

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Alysia
07-21-2019, 01:02 AM
Thanks for the update, Pete. We are happy with every percent of improvement. Take good care of yourself.
I keep you in my thoughts and prayers and I am looking forward for more updates.

gilders
07-28-2019, 04:37 AM
Latest results show kidney function has stayed the same at 36%. I'm happy with that, as on the odd occasion when I've had an improvement (like the last result), the following test result has shown a decline.

My bowels have been improving since moving from Mycophenolate Mofetil to Mycophenolate acid. So if there's anyone on this forum taking Myco Mofetil and suffer with their bowels, ask to change to Myco acid.

The whole area around my new kidney and left side of bladder area, has been more uncomfortable and painful when pressed. The Dr examined and he wasn't overly concerned, but said he wanted to keep a close eye on it. He added quite a few more blood tests to the usual ones and is considering another ultrasound, or another biopsy.

Away from medical issues, I had a good couple of days this week as we went to my son's graduation. It was nice to leave the house for something fun, rather than hospital appointments, or shopping.

Masha
07-31-2019, 04:36 AM
Congratulations on your son’s graduation. That would be a happy outing.
You are always in my prayers. When I read that things aren’t going too well for you, I just don’t know what to say.
So I’ll just tell that kidney and everything along with it to get cracking and make Pete’s life better.
Masha

gilders
08-11-2019, 06:24 PM
Latest blood results were really good. Kidney function has risen 2% to 38%.
From mid April I had constant declining kidney function for 3 months and was concerned I maybe rejecting my kidney. But for the last month my results have either been stable, or slightly improving. :thumbsup:

Pete
08-11-2019, 10:48 PM
gilders

Great news, Pete. Hoping the progress continues.

annekat
08-12-2019, 04:46 AM
That is wonderful news, Pete! I'm looking forward to more excellent results posted in the future.

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Jaha
08-14-2019, 05:53 AM
Good News my friend, keep up the good work!!!:thumbup:

NatriceRomeo
08-16-2019, 11:34 AM
Gliders,
Congratulations on the graduation of your son! Iím so pleased there is finally some good news for you. I still think of you every day!


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gilders
08-24-2019, 11:14 PM
My month of positive blood results has carried on and two weeks after my last test which showed a 2% increase in kidney function, it's increased by another 2% to 40%. :rolleyes1:

Pete
08-25-2019, 01:44 PM
gilders

Great news, Pete!!

annekat
09-01-2019, 09:44 AM
It's great to hear you are firmly on the upswing, Pete! After all this time...you have been so patient! And your family, including your dad, of course, must be quite happy about this!

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Jaha
09-02-2019, 11:59 AM
This is some wonderful news Pete, I hope it keeps going up and up!

gilders
09-08-2019, 01:16 AM
Bit of a disappointment with latest blood results. All the kidney function I'd gained over the last 6 weeks or so, has been lost and I'm back down to 36%. I won't let it worry me too much.

Masha
09-08-2019, 02:03 AM
Is the up and down to be expected?

gilders
09-08-2019, 02:33 AM
Is the up and down to be expected?

The ups and downs are expected, but there's been many more downs than ups. From a high of 51% in mid April, it's dropped to 36%.
Admittedly, the 51% seemed a bit of an anomaly as the next result was 42%. So it's really more like a 6% drop in almost 5 months, rather than a 15% drop.

drz
09-08-2019, 11:21 AM
The ups and downs are expected, but there's been many more downs than ups. From a high of 51% in mid April, it's dropped to 36%.
Admittedly, the 51% seemed a bit of an anomaly as the next result was 42%. So it's really more like a 6% drop in almost 5 months, rather than a 15% drop.

The trend is what is disturbing. Other wise my readings of kidney function usually fluctuate from test to test and my doctors are not concern over changes of a few points as long as they go both up and down. They tell me that changes of 5 or 10 points can often be due to levels of hydration or other factors.

The long term trend is what they emphasize is important. What is the norm for most transplant cases? Doctors should be familiar of what readings are consider normal but maybe there are too many variables to make such an assessment?

annekat
09-08-2019, 01:28 PM
Darn it, Pete. I guess we shouldn't get too excited when you have a good trend.
But you are the important one here, and I'm glad you aren't worrying much yet. Perhaps the tests aren't perfectly accurate over time or hydration has been a factor, as drz suggested. We will just have to wait patiently for the next results, and we are all hoping for another improvement. Best of luck with that!

Anne

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Alysia
09-16-2019, 02:54 AM
Bit of a disappointment with latest blood results. All the kidney function I'd gained over the last 6 weeks or so, has been lost and I'm back down to 36%. I won't let it worry me too much.

So sorry the numbers are down again. Is there any explanation the docs give to the fluctuations ?
Praying for you always, Pete, please update us how are you doing.

gilders
09-16-2019, 03:03 AM
My tacrolimus level was raised a little when I had blood tests done, which can have some effect on kidney function. Dr phoned me and asked me to reduce my dose, so we'll see if that has helped next Friday.

Alysia
09-16-2019, 03:59 AM
My tacrolimus level was raised a little when I had blood tests done, which can have some effect on kidney function. Dr phoned me and asked me to reduce my dose, so we'll see if that has helped next Friday.

Thanks for the update. I googled tacrolimus and found out its an immune suppresed med to help with transplants.

Praying it can give an explanation and that the change will improve the kidneys' numbers.

Sound like you have a good dr. Who really cares.

gilders
09-23-2019, 06:27 AM
Latest blood results showed no change in kidney function. I'll look on the positive side, at least it didn't drop.
There was some good news though. During the pre-transplant assessment I had a low level of antibodies against the donor (my dad). But for the last 2 months there is no sign of this antibody which means I'm less likely to have a rejection episode.