Fear of tx failure?

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Thumps
Posts: 1254
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Fear of tx failure?

Post by Thumps »

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!
wagolynn
Posts: 1326
Joined: Thu May 23, 2013 2:49 pm

Re: Fear of tx failure?

Post by wagolynn »

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.
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Fear of tx failure?

Post by rheaybou »

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.
Thumps
Posts: 1254
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: Fear of tx failure?

Post by Thumps »

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!
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: Fear of tx failure?

Post by AmandaClare »

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
Thumps
Posts: 1254
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: Fear of tx failure?

Post by Thumps »

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!
keithmckd2
Posts: 6
Joined: Sun Aug 12, 2018 12:23 pm

Re: Fear of tx failure?

Post by keithmckd2 »

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.
Thumps
Posts: 1254
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: Fear of tx failure?

Post by Thumps »

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!
keithmckd2
Posts: 6
Joined: Sun Aug 12, 2018 12:23 pm

Re: Fear of tx failure?

Post by keithmckd2 »

Hi again,

I’ve been wondering about whether to post this as it may be a bit alarmist and might be something which is specific to me rather than anyone else.

As I mentioned before, I’m a 1/6 (living donation) match (which NHSBT states to be unacceptable as a match quality) and am 15+ years post transplant with continuing excellent kidney function.

In my case however, on Friday 13th Sep this year (the exact date of my 15th transplantiversary) I was diagnosed with stage 4 cancer. Haemotology and Oncology were totally on top of it and I’m half way through my chemo ‘chops’ with the results looking and feeling pretty good so far. The cancer specialist team have confirmed it was almost certainly caused by the combo of meds I’ve been on (tac+pred+aza for the last 10+ years) but they are very optimistic that it can be cleared up (given its nature) but the current or slightly extended chemo programme.

After a bit of research it turns out that the 3% risk of cancer from transplant meds only really applies to the better grade matches. In fact for 0,1,2 /6 matches the risk is stated to be in the 20-30% area. Obviously no-one told me this (or that 1/6 was an ‘unacceptable’ match) at the decision point for going ahead with the transplant!

The reason for mentioning this is that I’m obviously not the only person (in the Uk or elsewhere) who’s been given a higher risk transplant (even though the transplant itself continues to perform excellently throughout the chemo..so far) and so I’m just offering a note of caution that while this might be very specific to me there may be some info here that others with lower quality matches weren’t aware of.

I suspect that had I become aware of the risks prior to a stage 4 cancer diagnosis, I would have been having some persistent dialogue with my nephrology team about risks and options for mitigation in my case.

Anyway, many apologies if this is perceived to be alarmist, it’s definitely not meant that way.
Thumps
Posts: 1254
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: Fear of tx failure?

Post by Thumps »

HI there

I don't think it's alarmist at all, just your own personal experience. Thank you for sharing it. I'm glad the chemo is going well, wish you all the best.

I am also a 1/6, which at the time they explained away saying that the drugs are so much better so it would be fine, and it has been - I've been on a Tacro/Mycophenolate/Pred regime since half way through the first year. I recall being told that one of the most common causes of death in renal transplant patients is heart failure and thinking "well that's the same as the rest of the population". :) There may be an increased risk of some things but at the same time our ways of reducing them are broadly the same as the rest of the population as well!

Feeling less fatalistic than I was this time last year, which is good. :)
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
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