Fear of tx failure?

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Fear of tx failure?

Postby Thumps » Sat Mar 31, 2018 6:51 pm

Hey folks, long time no speak (just moderating!).

I'm coming up to ten years post tx and everything is fine - in fact I've just been bumped down to a twice yearly checkup instead of quarterly and I find that a little bit scary!

What's really messing with my head though is that I was always taught (and most of the websites still say) that the average lifespan of a graft like mine is 15 years... it's got stuck in my head to the point where I keep thinking "I've only got 5 years left" which is doing my mental health no good at all. :( I'm well aware that the average here is a median and that we have members here who've reached 40 years and beyond but I don't seem to be able to shake it and it's making me quite nihilistic! It also feels awful when there's so many others who haven't even been as lucky as I have.

Has anyone else ever felt this? What did you do to get past it?
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Thumps
 
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Location: London, England

Re: Fear of tx failure?

Postby wagolynn » Sat Mar 31, 2018 7:34 pm

Hi Trumps,

Think of it this way, can you do anything to prevent this happening, I am assuming you are following the transplant’s team guidance, and we will ignore the wild stuff on the net.

The honest answer is no, like the mythical bus , it is beyond our control, worrying or not. :shock:

If the worst happens, you will be on dialysis until a replacement is available, and you have done that, and probably still have the T shirt.
I know it is easy to say but try to stop worrying , it just not make any difference. :D

Best wishes.
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Re: Fear of tx failure?

Postby rheaybou » Mon Apr 02, 2018 1:40 pm

Having the same niggling thoughts at the back of my mind. Sat here with my daughter playing and thinking how would she be without her dad three mornings a week, or sleeping all weekend. How would we cope with our finances? Would I be lucky enough to get a second transplant.

The whole 10 year life expectancy on dialysis and 15 year graft survival are skewed by a number of factors, fortunately age of the majority of Renal patients is one that skews the number. Relax and enjoy, if you really need help then CBT via Renal team helps(it did me)
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
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Re: Fear of tx failure?

Postby Thumps » Mon Apr 02, 2018 5:54 pm

Yeah, I'm gonna call the renal team this week and see about catching up with the Renal Psychologists. Thanks x
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Thumps
 
Posts: 1191
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: Fear of tx failure?

Postby AmandaClare » Tue Apr 03, 2018 2:30 pm

Hi Thumps

I wonder the uncertainty itself is one of the problems? if so maybe you could speak to your specialists at the next appointment.

They're not going to promise anything. But I reckon they know which kidneys look set for the long term and which will fizzle out in the medium term.Though of course you'd need to be sure that you want the truth even if it's not what you want to hear - and he or she might just refuse to be drawn.

One of my docs said a few years in that mine would last many years.

My current neph hasn't said anything. I can tell though that he currently thinks it's more likely that I'll suffer a complication (heart disease, cancer) than that the kidney will pack in.

All the best, hope you find some peace soon.

Amanda
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
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Re: Fear of tx failure?

Postby Thumps » Sat Apr 07, 2018 2:47 pm

Thanks Amanda, that's a really good idea.
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Thumps
 
Posts: 1191
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: Fear of tx failure?

Postby keithmckd2 » Thu Jul 11, 2019 12:36 pm

This is an interesting subject.

I have a 1/6 match living donation and at the time of transplant the implication seemed to be that it should be good for about 7 years or more.

This has been shown to be true. In two months time it will be my 15year transplantiversary... and my creatinine is still heat at 93 (was around 100 after tx).

So if it helps, for a healthy living donation kidney it’s certainly possible to get to 15 years, at the very least.

I had a chat with the docs about their perspective on likely longevity and the answer was pretty honest. They don’t really know for living donations (they implied that one person with a living donation at my unit is already over 25 years).

It’s obviously all very encouraging but in some ways it’s a bit weird as you kinda never know .. and so long term decision making is kinda reduced to ‘do it now’ (just in case).

Anyway, hope this helps.
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Re: Fear of tx failure?

Postby Thumps » Fri Jul 12, 2019 12:47 pm

keithmckd2 wrote:It’s obviously all very encouraging but in some ways it’s a bit weird as you kinda never know .. and so long term decision making is kinda reduced to ‘do it now’ (just in case).

Yes! Exactly this.
I had a massive party to celebrate the 10 year anniversary in the end, and raised about a grand in cash to go to the ward/hospital that kept me alive. I'm just going to carry on as long as I can now. 15 years is a good next target. :)
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Thumps
 
Posts: 1191
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England


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