Transplant failing

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MandyA
Posts: 185
Joined: Tue Dec 21, 2010 6:45 pm

Re: Transplant failing

Post by MandyA »

Hi Andy,

I'm really sorry to hear your news.
I enjoyed reading your transplant blog and hope Roberto Cacciola might do my transplant when the time comes.
Hope you are feeling better soon...

Mandy
alishe
Posts: 166
Joined: Wed Apr 11, 2007 8:01 pm
Location: Manchester

Re: Transplant failing

Post by alishe »

Hi Andy,
just wanted to say I'm really sorry about your transplant failing and hope you feel better soon, I wish you well, I have read your comments on this web site for along time.
regards,
alishe
cazpi
Posts: 427
Joined: Sun Aug 15, 2010 2:05 pm

Re: Transplant failing

Post by cazpi »

bigbuzzard wrote: 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.
I now take 6 bicarbs a day, and feel way better for it. Used to be two per day, and I noticed the improvement within days of the increase in dosage.
Last edited by bigbuzzard on Tue Jun 07, 2011 5:17 pm, edited 2 times in total.
Reason: Corrected formatting
dkjane
Posts: 309
Joined: Fri Dec 08, 2006 8:20 pm
Location: USA

Re: Transplant failing

Post by dkjane »

So sorry to hear you might be losing your kidney function.
As a transplant patient myself.. did they try to to turn things around?..change medications, prednisone?

Best Wishes, Jane
Thumps
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Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: Transplant failing

Post by Thumps »

Dosage for a lot of stuff is on a per KG weight basis (particularly tac, if I recall) so it's really hard to equate one person's dose with another.... still interesting to know, though.
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
MandyV
Posts: 1717
Joined: Mon Apr 10, 2006 10:17 am
Location: Fulham

Re: Transplant failing

Post by MandyV »

I don't think tacro is on per kg, I think it starts that way and then they measure your FK level to keep it in range - I was on a working group with a paedeatric neph and she couldn't believe how little tacro I was on (less than some of her kids she said) - and I am on steroid free, tacro only regime ....
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bigbuzzard
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Re: Transplant failing

Post by bigbuzzard »

Just a quick update. From feeling constantly crap a few weeks ago, I'm now heading back towards something more of a functioning human. My creatinine level has been heading back in the right direction, from a high of 485, back to 324 on Monday - and hopefully still improving!

Still feeling delicate, and easily tired, but optimistic for the short term at least - and planning to be back in the saddle playing music again very soon.

One interesting thing is that my partner emailed a bunch of friends last week, inviting them to join her every morning at 9am 'visualising my kidney' with all its nephrons and glomeruli doing their thing in a pink and healthy way. It was a beautiful email, including pictures of a kidney and how they work. Whatever you think of such things (I'm intrigued and open minded) it's certainly a great way to focus on the positive things in life - which can only be a good thing I think.
sanela
Posts: 422
Joined: Wed Jul 16, 2008 10:22 pm
Location: London

Re: Transplant failing

Post by sanela »

Andy

that is really good news. It just shows there is no definite and absolute when it comes to transplants. The situation changes from day to day, we all hope for the better.
I keep my fingers crossed for you and I'll join your partners group at 9am for the positive thought visualisation session. I have done this before for my own kidney when I had some rejection early on and I still "talk to him" as and when. We all have coping mechanisms and that is mine.

Best, Sanela
Walter, 15 september 2009
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bigbuzzard
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Re: Transplant failing

Post by bigbuzzard »

Hi Keith

It's quite a complicated mix of things that have been happening - so it's difficult to trace any precise causes and effects.

The thing that kicked it all off, was getting dehydrated from having diarrhoea - should really have been getting checked out sooner once that started happening, even though I thought I was drinking plenty. So, the rehydration certainly helped.

What it brought to a head was the ongoing malabsorption problems I'd been having since last August - which have caused me to lose around 20kg in less than a year. Having finally decided that this wasn't caused by Coeliac disease, the theory was that it was an effect of tacro and sirolimus (not) working together. So, I changed from Sirolimus to Myfortic (ie MMF). That has its own gastric side effects which were blamed for the fact that 2 weeks later I still wasn't 'solid and regular'. So drugs were changed again to Azathioprine+inc Pred+dec tacro. After a week of that, plus a strong antibiotic (Metranidozole) to clear out the gut bacteria, i finally seemed to be absorbing food more normally - though my appetite was shot, due to the bad taste of high urea. But - gradually, it's been returning, I've been eating better, the guts are behaving, and I've now started on a course of 'VSL #3' - really strong probiotics. Plus - drink plenty of water.

So that's the medical side. I had an interesting session last week with a 'channelling healer' (special introductory offer! - my baby daughter picked up her flyer and just held onto it and looked at it - so I trusted the wisdom of an innocent) who 'saw' lots of compassionate helpers around me while I spent an hour lying on her couch, and who bottled my 'essence' (into a sealed half litre of Coop mineral water). Plus people have been thinking positively for me - which you could call praying, or meditating, or sending vibes, or whatever you like, I think. I just try to keep smiling and thinking it's all good, returning the good vibes - and being extremely grateful that I'm not in the much worse situation that I know so may others are.
jenjen
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Location: Leicester

Re: Transplant failing

Post by jenjen »

Really chuffed to hear there is a glimmer of hope :D
Lorna
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Location: Aberdeenshire, Scotland

Re: Transplant failing

Post by Lorna »

Andy,

Great to hear things are improving for you - and long may it continue, really pleased for you

xx
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JMan
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Re: Transplant failing

Post by JMan »

Bit of a late reply Andy, I've been offlineish for a while. Hope things do improve for you & the kidney :)
J
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cazpi
Posts: 427
Joined: Sun Aug 15, 2010 2:05 pm

Re: Transplant failing

Post by cazpi »

Good news.

I'll send the odd vibe to your kidney as well from time to time. (prob whilst driving!) Can't hurt!
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bigbuzzard
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Re: Transplant failing

Post by bigbuzzard »

I love odd vibes :-) - like Roy Ayers in the Sunshine or Lionel Hampton
AmitChouhan
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Re: Transplant failing

Post by AmitChouhan »

Thinking of you and your family and I really hope things continue to improve.
Best Wishes, Amit
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