It’s great to hear from you, Pete!! Here’s hoping you and your Dad recover quickly and uneventfully!!
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It’s great to hear from you, Pete!! Here’s hoping you and your Dad recover quickly and uneventfully!!
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!
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.
Hoping they get the infection knocked down fast and that your Dad is recovering well.
Oh no! Please get better soon! Thinking of you!
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Thanks for letting us know. Continuing to hope and pray for the best for you and your dad.
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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.
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:
Hoping that infection is knocked out very quickly. Healing thoughts and prayers coming your way.
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.
Thanks for the update, Pete. Glad to hear you’re improving and that your Dad is doing well!!
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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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:
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!
So glad things are going better. It is a relief you are doing better. I’m still thinking of you!
Natty
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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
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.
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:
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.
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.
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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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.
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.
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!
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:
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.
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.
How are you doing so far, @gilders ? Keeping you in my thoughts & prayers ❤
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.
@gilders
I think you’re rightly concerned to be concerned about a sudden change in your vision. I’m glad the specialist didn’t 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 doesn’t, glasses, contact lenses, or laser refractive surgery could be good options.
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.
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.
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.
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!
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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Wow, gilders, you have become such an expert on kidney's transplant. There are so many issues related. Thanks for sharing all that info.
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.
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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Oh no! I’m so sad to hear this. I’m 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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@gilders
Rats!! I thought the stars were aligned in your favor on this. Hope they get the problem solved muy pronto!!
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?
@gilders
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?
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.
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.
Oh Gilders,
I ditto what Pete and Alysia said. One day or one hour at a time. My prayers continue.
Masha
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:
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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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!
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.
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%!
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
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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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:
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:
@gilders
Any chance the procedure can be done under “twilight” anesthetic? When I had my colonoscopy, that’s what they gave me. It was two drugs, one of which was fentanyl. I was kind of awake, but didn’t feel or remember anything about the procedure.
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".
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.
@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...
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.
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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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.
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.
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.
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.
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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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.
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.
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
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.
@gilders
Seems like two steps forward and one step back...
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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Now it seems that we have to rely on what got you this far, prayer and positive thinking.
Masha
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.
Great news, Pete!! Normal is a good thing!!
Normal! Yippee! Yippee! Yippie!
More power to you, Pete!
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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.
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:
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.
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!
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.
@gilders
I’m glad to see the good news keeps on coming!!!
So happy that you have good news finally! Still thinking of you everyday & follow your recovery.
Natty
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Blood tests today showed kidney function still stable at 42%, so looks like whatever caused the previous dip is in the past now. :thumbup:
Some excellent news for a happy dance here Pete
:hug3::hug3::lol::hug3::hug3::lol:
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.
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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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.
I am wishing you all the best for better results. Please take care of yourself!
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?
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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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.