Transplant failing

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bigbuzzard
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Transplant failing

Post by bigbuzzard »

Well, the dice haven't rolled well for me this time.

I had a transplant from a living donor in Aug 2007. Ever since then, I've known that there was underlying chronic rejection going on, due I think to drug toxicity from the immunosuppressants. Then things seemed stable (at a creatinine level around 220-250) for a long time, until the last few months. I've had some sort of ongoing gastric thing going on since last August, that caused me to lose around 20kg. After a few months this was diagnosed as Coeliac disease, but recent tests don't support that. I've had some bouts in the last couple months of even worse diarrhoea - which I later discovered causes increased absorption of tacrolimus, so yet more toxicity - on top of the dehydration that I tried my best to avoid.

So I've spent the last several weeks feeling various versions of crap - on the edge of nausea - no energy - horrible taste in my mouth - no appetite.
I'm getting to know the staff in the Exeter renal unit a lot better, having spent a week as an inpatient a couple weeks ago, and seem to be up there nearly every other day. Creatinine up in the 400s, and urea really high (apparently the source of the bad taste), and have been through every combination of TX drugs under the sun.

Yesterday, the doc was talking about perhaps starting dialysis in the next few days, but hoping to hold off for a couple of months, depending on results.

If I were another TX patient reading this, I'd want to know more about the gastric issue that's been going on for 10 months. The consultant now believes that the initial problem last August was caused or exacerbated by a 'side effect multiplier' effect of Tacrolimus and Sirolimus being taken together. This caused the gut flora to get out of balance, and they've never got sorted out. To counter this, they've given me a strong antibiotic (Metronidazole) which should clear everything out, with a plan to take some powerful probiotics to repopulate the gut with good stuff. Still in the middle of this...

Another thing my neph said that people who have had a tx can be 'more symptomatic' at a lower creatinine level than when you going through kidney failure for the first time. That certainly seems to be the case. When I started dialysis back in 2006, my creatinine was 960, and I never felt as bad as this. I know everyone's different - I'm in that classic state of being invisibly ill. People keep saying how great I look, especially cos I'm now not overweight for the first time in my adult life!

Haven't posted that much here recently - thought I'd post this update in case it's any use to anybody.
Jonny B
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Joined: Tue May 02, 2006 12:29 pm
Location: Stockport, Cheshire

Re: Transplant failing

Post by Jonny B »

Sorry to hear that. Have you tried reducing your protein intake. My urea level dropped by more than half after I went on an almost vegie diet. Went from feeling like death to reasonably normal in a few of months. Might not be for everyone but has worked well for me so far. Hope you start feeling abit better soon.

Jon
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bigbuzzard
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Re: Transplant failing

Post by bigbuzzard »

Thanks Jon. I've been wondering about doing exactly that - your experience is great to hear.

Even within a veggie diet, is there anything that you find particularly good/bad? eg pulses, dark greens (kale etc).

Cheers

Andy
amanda in CA
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Re: Transplant failing

Post by amanda in CA »

I am so sorry to hear that this is happening to you, you have such a great attitude and I have a great deal of respect for you. I am sure that your posting on here will be of benefit to someone down the line. Can you attach some tags to it or something so that anyone suffering from the same or similar can find this when searching, and hopefully get the right intervention before this happens to their transplant? Anyway, i wish you all the best and hope that they can slow down the decline. One thing that I would say, is that if you have any potential future donors in mind, do not let them stop your immunosuppressants too soon. I maintain that it was due to them stopping the immunosuppressants on me that allowed my PRA level to shoot up from below 16% to 99% once there wasn't anything to suppress it.
jenjen
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Joined: Thu Jul 28, 2005 12:28 pm
Location: Leicester

Re: Transplant failing

Post by jenjen »

Andy, I don't have anything useful to say, but I wanted to post as I'm so very very sorry to hear this :(
Dialysis might be scary, but hopefully it'll make you feel heaps better.
J
Thumps
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Joined: Thu Sep 14, 2006 3:50 pm
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Re: Transplant failing

Post by Thumps »

Oh Andy, I'm really sorry :( Hope you n your team at Exeter can find ways to get you back in working order as soon as possible.

Hugs,
Thumps x
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Rik
Posts: 1742
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Re: Transplant failing

Post by Rik »

Hi Andy ...
like the others who have posted ...
I am so sorry to hear that your transplant is fading ...
I do hope your unit gets on top of all the issues causing you to feel like crap and that you are feeling better ASAP ...
Nothing I can offer on any diet suggestions ... its only recently I found out I shouldnt have been eating so many banana's whilst on dialysis ... I wont mention my love of a English breakfast with lots of fried tomatoes and mushrooms either!! :oops:
all the best to you Andy and hope you post more regularly to keep us up to date with how you are doing
cindywoolley
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Re: Transplant failing

Post by cindywoolley »

Hi Andy
I am sorry that I don't have any suggestions for your plight but justed wanted to wish you well and I do hope that the team you are under can find some way to make you feel better than you obviously have been feeling.
Thinking of you
Transplanted 23/9/9 St. George's Hospital
Fabrette
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Location: East Yorkshire

Re: Transplant failing

Post by Fabrette »

Hi Andy,

I'm sorry to hear you're feeling so poorly. I'm so sorry to hear your kidney is failing. I am pre-dialysis myself with a GFR of 10% at the mo- just starting to feel the nausea too which is horrible. I hope they can do something to help you soon.

take care

:) xxx
My one life added to my cat's nine make a perfect ten.
Jonny B
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Location: Stockport, Cheshire

Re: Transplant failing

Post by Jonny B »

I'm pre-dialysis, on the list though with gfr approx 10%. My urea was over 40 when I felt dreadful and was being prepared for dialysis. Luckily I don't seem to have any problem with potassium/phosphate and so my diet now consists of lots of potatoes, broccoli, cauliflower, peas, crisp butties for lunch ( :shock: ) and cakes, biscuits etc for calories. As I say it might not be suitable for alot of people and a chat with the renal dietician is most definitely sensible! But my urea dropped from 45 to about 20 and even my creatinine has dropped a fair bit. If I have a high protein meal now I can guarantee I will feel dreadful the following day. High urea really is a killer in that respect.
sanela
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Location: London

Re: Transplant failing

Post by sanela »

Andy, it really saddens me to hear this. It must be so disappointing having to be at the point of dialysis again.
I remember way back when you went on dialysis, then your transplant, and your kind and very helpful insights into all things related. I can echo Amanda’s posting, you are always so upbeat and positive and I too have great respect for you and all that you have done to promote organ donation.
I hope you get all the help you need from your renal team, friends and family.

Regarding diet, Jon is right in saying to reduce your protein intake but that includes vegetable protein as well, beans and pulses being quite high in protein. Still, you need some to keep energy levels up, some carbs and fats too to help absorb all the essential vitamins and minerals. I would advise a chat with a renal dietician as you really need a good balance of food stuff.

When my kidneys were failing the one thing that always made me feel better was a large glass of water with the juice of half or a whole lemon. I used to have at least one a day sometimes 2-3.

Wishing you all the best, Sanela
Walter, 15 september 2009
cazpi
Posts: 427
Joined: Sun Aug 15, 2010 2:05 pm

Re: Transplant failing

Post by cazpi »

Hi Andy,

Terribly sorry to hear this, your transplant blog was very inspiring, and has made me less fearful for my upcoming transplant. (I met your surgeon Roberto the other day - he also raised my confidence).

I have been concerned that my own ongoing gastric issues must be affecting my drug absorption levels and also my hydration. I will raise this at my next appointment. There are so many things going on for renal patients that it's hard to seperate what is kidney or drug related, from the things which you would probably have anyway.

Hopefully this will teach us all a lesson to take note of any unusual symptoms.

Anyway - I wish you all the best and hope that you are soon feeling better, once the drug levels and/or dialysis get settled.
Lorna
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Location: Aberdeenshire, Scotland

Re: Transplant failing

Post by Lorna »

Hi Andy,
Today's the first I've looked on here for a long, long time - really sorry to hear your transplant's failing, but I know exactly what you're going through. My transplant failed at the end of last year, I was on PD for about 6 months and started haemo dialysis about 5 weeks ago now, finally admitting defeat and facing up to my biggest fears (fistualas, haemodialysis and all the crap that goes with it) after it became apparent the PD wasn't working for me. I've never been or felt so ill in my life as I did until I started the haemo, I certainly don't remember feeling anywhere near as bad with the kidney failure first time round!

So, really I'm just saying I'm thinking of you, and hoping you get your gastric problems sorted soon, I've no advice there I'm sorry. Hope your doctors can stabilise things a bit for you kidney wise and keep you off dialysis as long as possible.

Take care

Lorna
xx
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Sue
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Re: Transplant failing

Post by Sue »

Hi Andy, I don't have anything helpful I can add, just really to say thinking of you, and so sorry you are feeling so unwell. Sending hugs

Sue
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bigbuzzard
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Re: Transplant failing

Post by bigbuzzard »

Thank you all for your kind words - I really appreciate ALL the replies here.

@cazpi - good luck with your transplant, and give my regards to the big Italian.

@sanela - thanks for the suggestion, will give that a try.

@Jonny B - wow, 40 sounds huge. Mine peaked at 29.8 a few weeks ago, but is now around 20, and this feels crap.

@keith - sorry to hear about the pain. That's not something that's affecting me at the moment - it's more just the constant discomfort/bad taste. I've been prescribed VSL #3 - a strong probiotic, to start once I stop taking the antibiotics. AS for steroids, I've always been on 5mg prednisolone, and that's just been upped to 7.5mg to go with Azothiaprine and 1 + 0.5mg tacro. For a few weeks I was on Myfortic - but that wasn't doing anything to help settle the diarrhoea, so as this didn't improve after a few weeks, it got changed to Azothiaprine - as a final attempt, it seems, to find a combo that doesn't disagree with me. I'm not aware of ever having suffered any side effects from pred - though I'm not sure about long term effects.

Had a long chat with a dietitian today. My potassium levels are fine, so no need to take special care there. Phosphate a bit high. My problem right now is finding anything I can bear to eat. Seems like everything just tastes sickly sweet.

Was introduced to my Bicarbonate level today (HCO3 on renal patient view). I've never looked at that before, but looking back it's always been low, showing that my blood has always been more acidic than is ideal. A couple weeks ago, the consultant said I should start drinking water with bicarb in it, morning and night. Then a few days ago, they prescribed odium bicarb tablets - can/t help feeling I should have been doing something about this ages ago, as my muscles do seem to be wasting away! I'd always thought that was part of the general weight loss that's happening.

As for dialysis - I'm torn. Sure I could do without the hassle, but if it makes me feel better, then bring it on! At the moment I can hardly bear to pick up a sax, never mind jump around on stage. We had an Organ Grinders outing at our local Blues Festival A week ago on Saturday, and it nearly wiped me out completely.
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