Regrets

[Thelma]

I appreciate this may be a bit taboo, but does anyone ever think their transplant was a mistake? I'm really struggling to cope with these feelings at the moment. I know in the long run I'll be much better off, but it's not much comfort right now. Pre-tx I was happy, doing really well, in good shape and very much on top of things. Now I feel tired, run down, the medication is making me anaemic (looks like I might need EPO) and I feel I've taken a massive leap backwards.

[rheaybou]

I have not experienced anything like you have...but hope to soon. Maybe take the view of short term pain for long term gain?

Does your unit offer counselling or even the chance to talk to other TX patients face to face to share experiences/fears etc?

I hope you get through this little rough period and can get on enjoying your life

[Otherstarfish]

Thelma, no not taboo something very important that needs more discussion! something not really covered in the glossy encouragement brochure is how you will be after - how hard the immunos are. if you are pre emptive its worse, then multiply this by anything that causes it not to work.

its tough - you are trading death, but being kept alive by a machine with being alive on drugs that are really nasty for awhile until they settle down. (above is my very harsh simplistic view and sorry I can't sugar coat it). You are trading one set of symptoms for another set of less risky ones. ( i am no expert and not a recipient and in good health, but this is how i see it). The pre-emptive i think has the toughest route of all, since they are fine one day and then on immunos the next.

i think my sister went through a lot of challenges in the first year and no way would she would have wanted the tx. But as we move through the second, they have altered her meds, things have got better, alot better.... now i sometimes wonder if they fitted her with duracell batteries on some days.

so my advice is hang in there - the brochure wasn't honest - but then did you really expect it to be? it will get easier. Take each days as it comes. talk, scream etc. whatever works.... talk and talk again to the, amke sure things like weight changes are factored into meds levels.

kind regards Gary

[MidgeMan90]

Thelma, I wouldn't say you are alone in these feelings. Although I haven't experienced them myself, I have spoken to post transplant patients at clinic and they have claimed they wish they hadn't had a transplant as they felt they were better on dialysis or if they never got onto dialysis they felt they were better before anyway. Like some one above said, I think it is short term pain for long term gain. Just do what you can to get through this difficult period.

Best wishes,

Dan.

[Thelma]

Thanks folks. I know it's better for me in the long run, and on good days I am very optimistic and content. I've had a hard day today, leaving me with a lot of complicated feelings which are compounded with guilt.

I was on immune-suppression before (azathioprine) but the regime now is quite different.

[dkjane]

Hi Thelma,

You are a fairly new transplant patient, I can see.
It took me a good 6 month to get everything under control. Did have Epo for 4 mo. post tx. My new kidney was a sleepy one!
After about 10 month, I was full of energy. Today, I still am energetic and sometimes hyperactive, which is properly anxiety.
I am glad I got a transplant. Though, I have good day and bad days, I can still sail though life with comfort.

Give your new kidney in your "old body" some time.

Good luck! Jane

[Thelma]

Thanks Jane.

I really really hope I don't need EPO at all, but it's good to know I won't necessarily be stuck on it forever. It's just so annoying because I was fine without EPO before the tx. The doctor did say I can refuse it if I want, but I'm not convinced that's a sensible option either.

[jan4alan]

EPO is fab! I love it! Don't get angsty about it. You will feel so much better just like naughty athletes do.
Jan

[Thumps]

Take the EPO if it's offered, I'd say - it's bloody brilliant. I can see why athletes use it

In all seriousness, yes I think a fair number of people get the regret thing, especially if they were stable pre-tx and especially if (like me) it was a pre-emptive live donation. I felt shit for months afterwards and was pretty angry about it for a while. Things DO settle though, and once your regime of drugs gets to an even keel and your hospital visits drop to monthly or less you'll feel much better about it all. Hang in there, and shout about it here as much as you want. I found that my friends n family didn't get it at all.

[dirverd]

Another thing is that for the first few months after Op, you're on a lot of drugs.

As you function settles and the risk of rejection lowers you'll be on less.

So far I've gone from 25mg Pred to 5mg (which they're talking about lowering again.)

7.5mg Tacro to 6mg.

And they've halved my MMF, all of which have helped me feel normal again.

I do quite a lot of exercise, so I notice the tiniest changes in my body. I'm 5 months post Op and still a while away from what I'd call full fitness. But hold in there, it takes time but you should definitely feel better...

Each week I feel a bit better.

[Thelma]

Thank you all so much. It's very encouraging to read your posts.

If anything I'm on fewer drugs than pre-tx, but there have been so many changes. I've four more weeks of the valganciclovir, and hope to come off the septrin soonish too. I have now been switched from prograf to advagraf, which is a relief. It was driving me potty trying to time the prograf right all the time. I wonder why they don't give everyone advagraf. Is it much more expensive? I can live with a 5mg prednisolone dose because I'm side effect free at that dose.

I'm sure I will take the EPO if I need it. I just hope I don't need it!

[Tibbs]

I can really see where you're coming from Thelma. Whilst I'm not feeling great right now, everything is manageable and I have a routine that works for me.

Transplant is a big step into the unknown, and it does feel that sometimes you're being sold a pup - you're told everything will be great and you'll feel so much better by people you trust (the doctors & care staff) and yet the reality from people on here is that for the first few months at least things are much worse for people who are pre-dialysis.

I really hope that things improve for you - hang in there!

(It's nice to have a place to rant sometimes, where people understand first hand what you're going through )

[Thelma]

I'm finding the guilt quite difficult to talk about. I feel I should be feeling better and happier about this amazing gift, that maybe someone else would have been a better recipient. It's all so complicated and unexpected.

[Thumps]

I feel I should be feeling better and happier about this amazing gift, that maybe someone else would have been a better recipient. It's all so complicated and unexpected.

I hear that. They really don't prepare you very well for it!
The conversational arcs here about "the rollercoaster" are common because they're genuine. I think they kinda have to pursue the positives for tx though, because it (for the vast majority of people) IS the best treatment for a long and healthy life.

and yet the reality from people on here is that for the first few months at least things are much worse for people who are pre-dialysis.

I've highlighted a bit of your post. There's SO MUCH going on in the early weeks that it's hard to know which way is up, or at least it was for me. BUT - within a reasonably short time I really did feel so much better than I had in absolutely years, and more importantly with a MUCH better long term future in prospect.

I know just saying "hang in there" sounds a bit trite, but it's really true! I look back at the period before and after my Tx now with a certain amount of pride - it was an incredible time in my life and I actually feel really fortunate in many ways to have had such a unique experience.

[Cath]

I was on dialysis for nearly 3 years prior to my recent transplant and although I don't yet feel much better, I don't feel worse now than I did before the transplant(apart from having real problems sleeping). I was getting more and more tired the longer I was on dialysis so, for me, it does feel like a transplant is the best option. It must be very hard to deal with feeling you've taken a backward step. Having a transplant is such an emotional ride as it is, without experiencing the feelings you have.

I think we all hear stories of how amazing people feel afterwards. I felt worse for the first month! I'm not very good at taking it easy and expected things to improve more quickly. The transplant nurse at clinic on Monday gave me a bit of a lecture (in a really nice way) telling me to stop being so hard on myself, that I'm not slacking but I need to give myself time to properly recover, as it is a major operation and strong drugs. The hospital are very good and sensible about my recovery, which does help. Coming on this forum though is a lifeline and it is so good to hear how others are doing so I don't feel alone.

I hope that in time things improve for you. I measure my progress in weeks rather than day to day which I find more helpful.

Take care

Cath