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annekat
09-23-2019, 08:53 AM
We'll take that as good news, I think, Pete!

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Alysia
09-30-2019, 12:16 AM
We'll take that as good news, I think, Pete!

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I think so, too. Keeping you in my prayers.

Happy New Hebrew Year (starting tonight, Israel time), may it be a year of good health and good news !

NatriceRomeo
10-04-2019, 12:14 AM
Gliders,
I will take the news as good about the antibodies. I am sorry about the kidney function. How are you feeling? Do you feel better, worse or same since the transplant? How is your Dad feeling? Still thinking of you and your family.
Natty


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gilders
10-04-2019, 06:57 PM
I think so, too. Keeping you in my prayers.

Happy New Hebrew Year (starting tonight, Israel time), may it be a year of good health and good news !

Happy New Year to you! Sorry I'm a bit late.

gilders
10-04-2019, 07:20 PM
Gliders,
I will take the news as good about the antibodies. I am sorry about the kidney function. How are you feeling? Do you feel better, worse or same since the transplant? How is your Dad feeling? Still thinking of you and your family.
Natty

Hi Natty,
It's good to hear from you. My dad is doing great! He had a tough time on the operating table, losing a lot of blood, but 24hrs later he was very well and within 2 weeks he was completely back to how he was before the transplant.

As for me, I'm slightly better than before transplant, but not much. I always feel bad not being able to tell the Dr's that I feel great now, thanks to their ability to give me a new kidney and the drugs to keep it working. I'm sure most other kidney transplant recepients have a massive improvement and return to a normal, healthy life. But I have many more illnesses, so it was never going to cure those. But there is a slight improvement and the main thing is that I don't have to be on dialysis. I had it for a month or two 25 years ago and I really can't see how I could live like that long term.

I'm so grateful to my dad and always try and make out I'm doing better than I am to him. I know he'd never regret offering his kidney, even if there had been no improvement, but I still like him to think it was a bit more life changing then it has been.

I'll never know exactly how many extra years of life this kidney has given me, be I know it will be substantial, with many of those being dialysis free.

NatriceRomeo
10-04-2019, 11:25 PM
Gliders,
I can empathise with you. It is so frustrating when things do not go your way. Do the Drs think your kidney function will increase or is a kidney function in the 30s going to be your normal?
I am sure your father will never regret giving you a kidney. There is no love like a parents love, as I know you know.
Im still thinking of you & hoping your kidney starts acting appropriately. [emoji23]
Natty


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Alysia
10-05-2019, 04:28 PM
Hi Natty,
It's good to hear from you. My dad is doing great! He had a tough time on the operating table, losing a lot of blood, but 24hrs later he was very well and within 2 weeks he was completely back to how he was before the transplant.

As for me, I'm slightly better than before transplant, but not much. I always feel bad not being able to tell the Dr's that I feel great now, thanks to their ability to give me a new kidney and the drugs to keep it working. I'm sure most other kidney transplant recepients have a massive improvement and return to a normal, healthy life. But I have many more illnesses, so it was never going to cure those. But there is a slight improvement and the main thing is that I don't have to be on dialysis. I had it for a month or two 25 years ago and I really can't see how I could live like that long term.

I'm so grateful to my dad and always try and make out I'm doing better than I am to him. I know he'd never regret offering his kidney, even if there had been no improvement, but I still like him to think it was a bit more life changing then it has been.

I'll never know exactly how many extra years of life this kidney has given me, be I know it will be substantial, with many of those being dialysis free.

Pete, it is very sweet of you to show yourself in a better way then you really are to your father. And I am also sure that he would give you the whole world if he only could. This is what parents are for.

I think the point of camparison should be yourself before the transplant and not other transplant patients, considering your other diseases. And if I understand correctly then you are doing better compared to how you felt before the transplsnt, right ?

I keep you in my thoughts and prayers. Keep on fighting.

gilders
10-05-2019, 11:31 PM
My latest blood results are back and it's great news!! My kidney function has increased from 36-42%. I'm so pleased that I didn't get worried the last month where my function had dropped from 40%-36%. It is now the highest it has been since the May 1st.
My liver test has been rising and is now higher than the normal range, so that needs keeping an eye on.
My appointments have now been changed from fortnightly to monthly, so the drs must be happy with how things look.

I did get some bad news though. A month or so after my transplant I met an elderly patient and it just so happened that he had his transplant the same time as me, but was in the room next door, he was also from the same town as me. I hadn't seen him in clinic for a couple of months, so it was good to see him and have a catch up. He had had a scan on his kidney (routine) and they noticed a slight mark. They biopsied this mark and there was a cancerous cell in the sample they took. They offered to remove the kidney, but he declined as he would be on dialysis for the rest of his life (he's too old for a transplant now and was only allowed this transplant as they count the age at which you joined the transplant list). They will be keeping an eye on it and as soon as it begins to effect his his kidney function more severely they will remove it. I am just very worried that the cancer may spread and he will lose the kidney soon, or even worse, the cancer will spread to other parts of his body. He's such a friendly man and you'd never expect that he is going through this stressful period. I always offer him a lift home, but he never accepts and uses public transport along with quite a long walk.

And to answer Alysia's last question, Yes I do feel a bit better than a year ago and a lot better than the few weeks before transplant (I really should have been on dialysis then). At yesterday's appointment I again mentioned about fatigue and the dr said that most patients feel most of the benefit of a new kidney from month 6 until month 12. I'm just past month 6, so hopefully I'll see more improvement soon.

drz
10-09-2019, 04:45 PM
I think just staying off dialysis would be a big win. Hope things continue to work out well for you. All of us in various stages of kidney disease can empathize with your ordeal.

gilders
12-24-2019, 12:17 AM
Just a brief update on the kidneys.
For the last 3 months my function has been very stable at 39-41%, so it looks like 40% is going to be my long term level, which I'm very happy with so long as it remains stable.

Hope you all have a Happy and Healthy Christmas and New Year.

drz
12-24-2019, 12:43 AM
Sounds like good news for you. My kidney doctor says we can function OK at that level.


Just a brief update on the kidneys.
For the last 3 months my function has been very stable at 39-41%, so it looks like 40% is going to be my long term level, which I'm very happy with so long as it remains stable.

Hope you all have a Happy and Healthy Christmas and New Year.

Pete
12-24-2019, 04:06 AM
gilders

Merry Christmas, Pete!! Im glad to hear your kidney continues to be effective. Hope that continues into the new year and beyond!!

mishb
12-24-2019, 08:49 PM
40% sounds like a good results.
Keep on fighting the odds Pete :thumbsup:

May your Christmas holiday season be a wonderful "pain free" one

Jaha
12-26-2019, 02:50 AM
Great numbers! Merry Christmas my friend!

Alysia
12-28-2019, 05:17 AM
Thanks for the great update ! Merry Christmas and blessed new year !

annekat
12-30-2019, 07:44 PM
Pete, I am also very thankful for your update, as we hadn't heard from you for awhile. I was beginning to worry. I was going to ask Alysia, because she knows everything! ha, ha. I'm very happy to hear that your kidney is stable and you feel fine about the numbers. Such good news to start 2020 on an auspicious note. Happy New Year!!!

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MikeG-2012
01-09-2020, 12:47 AM
Good to hear that you are doing well Pete!

Have a Safe, Healthy and Happy New Year!

gilders
01-28-2020, 03:36 AM
Another quick update.
Kidney function is still fairly stable. It's dropped from 40% to 38%, but so long as it doesn't drop below 35% I'm happy.

I've also had my appointment at Addenbrooke's with the vasculitis team. I have been suffering with more joint pain and severe back pain. My blood results look good (i.e. no inflammation), so it's looking like permanent damage to joints rather than any Wegener's activity (according to the Dr). I have been asked to try Hydroxychloroquine. As my joints aren't hurting due to inflammation it's unlikely to help and I haven't felt any improvement yet, but I'll give it a few more weeks.

Alysia
01-31-2020, 05:03 AM
Another quick update.
Kidney function is still fairly stable. It's dropped from 40% to 38%, but so long as it doesn't drop below 35% I'm happy.

I've also had my appointment at Addenbrooke's with the vasculitis team. I have been suffering with more joint pain and severe back pain. My blood results look good (i.e. no inflammation), so it's looking like permanent damage to joints rather than any Wegener's activity (according to the Dr). I have been asked to try Hydroxychloroquine. As my joints aren't hurting due to inflammation it's unlikely to help and I haven't felt any improvement yet, but I'll give it a few more weeks.

Thanks for the update, Pete. I am glad your kidney is stable after all, and I keep you in my prayers.

I've found out that lack of vitamin C can also cause joints pains. Can you check your vitamin C in your blood ? Are you allowed to take vitamin C supplement ?

Also I wonder if the rainy days and all that humidity are also responsible for the aching joints.

NatriceRomeo
03-11-2020, 06:41 AM
Hi gliders,
So glad your kidney function has stabilised! It is a relief! Heres hoping you continue to grow stronger every day!
Nattt


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gilders
03-12-2020, 12:55 AM
Thanks Natty.
I did another update a couple of weeks ago, but it doesn't seem to be showing.
My latest bloods show kidney function at 37%. A slight drop since the month before, but still within my 35-40% "Happy zone"
The Hydroxychloroquine maybe helping my joints a tiny bit, but no difference to back pain. I had an MRI scan on my lower back on Sunday, so hopefully will get some answers (pinched nerve was a possible diagnosis).

gilders
03-28-2020, 06:23 AM
I'm due my monthly transplant clinic appointment next week, but due to COVID, it will now be a telephone appointment. Therefore I went for blood tests (nobody else waiting thankfully) and immediately left the hospital.
For those following my updates, you may recall that my last few blood tests have shown my kidney function drop from 40% to 38% to 37%. Although I said that I was not concerned of the drops so long as my function remained in the 35-40% range, I was more concerned about having 3 recurrent drops, however small.
Thankfully I can report that my kidney function jumped to 43%:thumbsup:

Unfortunately, one of my liver tests (ALT) has dramatically jumped far beyond healthy range (10-50) to 117. Another strange result is my blood glucose has dropped below the healthy range (3.5-7) to 3.1. Not greatly below range, but considering this is usually high in transplant patients, maybe it's a bit misleading and realistically much lower than it should be.

Overall I'm feeling very well and grateful to be over a recent virus, especially as I had COVID symptoms, but was refused a COVID test as only hospital patients are tested in the UK.

annekat
03-28-2020, 07:13 AM
Pete, great news about the kidney numbers! Not so great about the other two tests, especially the liver. I hope this is somehow temporary and they can figure out the cause. Thanks for keeping us updated, and I'm wishing for the best for you.
Anne

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Alysia
03-28-2020, 07:49 PM
I'm due my monthly transplant clinic appointment next week, but due to COVID, it will now be a telephone appointment. Therefore I went for blood tests (nobody else waiting thankfully) and immediately left the hospital.
For those following my updates, you may recall that my last few blood tests have shown my kidney function drop from 40% to 38% to 37%. Although I said that I was not concerned of the drops so long as my function remained in the 35-40% range, I was more concerned about having 3 recurrent drops, however small.
Thankfully I can report that my kidney function jumped to 43%:thumbsup:

Unfortunately, one of my liver tests (ALT) has dramatically jumped far beyond healthy range (10-50) to 117. Another strange result is my blood glucose has dropped below the healthy range (3.5-7) to 3.1. Not greatly below range, but considering this is usually high in transplant patients, maybe it's a bit misleading and realistically much lower than it should be.

Overall I'm feeling very well and grateful to be over a recent virus, especially as I had COVID symptoms, but was refused a COVID test as only hospital patients are tested in the UK.

I am glad your numbers are much better. Thank God. Praying your ALT will be better too.

What covid19 symptoms did you have ?

gilders
03-29-2020, 01:36 AM
Hi Alysia,
My COVID-19 symptoms were fairly high temperature (37.6C/99.68F), shivering/shaking uncontrollably, severe headache, severe fatigue and generally feeling awful. Didn't have a new persistent dry cough and breathlessness was no worse than usual. I also

Had a nice surprise today. I received a government food parcel as I'm classed as Extremely Vulnerable due to being a transplant patient. I'm not allowed to leave home (garden is allowed), unless receiving medical treatment. We had stocked up somewhat a couple of weeks ago, so my wife dropped some of the items that we had a few of with an elderly neighbour.
Even the High Risk group are allowed out for a few reasons such as to shop for essentials (as infrequently as possible) and once a day for exercise by yourself, or with other household members. But I'm in complete isolation. My wife is here too. She's also taken 12 weeks off from work (unfortunately unpaid) as she works in a supermarket which are the busiest places in the whole UK, so the risk of infection is extreme.

Alysia
04-03-2020, 03:09 AM
Hi Alysia,
My COVID-19 symptoms were fairly high temperature (37.6C/99.68F), shivering/shaking uncontrollably, severe headache, severe fatigue and generally feeling awful. Didn't have a new persistent dry cough and breathlessness was no worse than usual. I also

Had a nice surprise today. I received a government food parcel as I'm classed as Extremely Vulnerable due to being a transplant patient. I'm not allowed to leave home (garden is allowed), unless receiving medical treatment. We had stocked up somewhat a couple of weeks ago, so my wife dropped some of the items that we had a few of with an elderly neighbour.
Even the High Risk group are allowed out for a few reasons such as to shop for essentials (as infrequently as possible) and once a day for exercise by yourself, or with other household members. But I'm in complete isolation. My wife is here too. She's also taken 12 weeks off from work (unfortunately unpaid) as she works in a supermarket which are the busiest places in the whole UK, so the risk of infection is extreme.

Maybe your symptoms were not covid19 ? They don't sound like it, as far as I understand.

I am glad you are safe.

gilders
04-03-2020, 05:02 AM
Update after my recent (telephone) appointment.
The lead transplant nurse is concerned about the ALT liver test so check with the head transplant Dr to see if I could wait until my next routine blood tests to have it rechecked. The Dr said that weighing up the risks of COVID-19 and the risk of having ALT further increasing, he still thinks I need to come in sooner for a repeat ALT test. They will also be doing a CMV (Cytomegalovirus) test as my symptoms from my virus are similar to this virus and it's quite common in transplant periods.

COVID-19 has been a real concern for me, so this added worry of my liver and/or CMV is not helping.