Transplant questions

[dyannalw]

This is for those of you who have had a transplant.  What all is involved in the process of getting a transplant and also how many meds do you have to take during and after having a transplant? Up to this point I have not really been interested in getting a transplant but I am reconsidering it. I just wondered what to look forward to. Thank you in advance for your replies.

[LarryG]

This my opinion and mine only. I am just about two weeks into having had my transplant and so far it is the best thing that has happen to me. I was having such a difficult time on dialysis from the physical effects and dealing with the people from the in house clinic I was going to I was just so unhappy. Since my transplant my life and how I feel even though I am still in recovery has been so different and for the better. The process even though somewhat challenging has not been anywhere like I thought it would be. I feel like a free man who has been let out of prison. No more food and liquid restrictions(within reason) no more a slave to the machine and no longer that washed out after effects of dialysis and those needles. If you r able to get a transplant I suggest you look into it.

[jbeany]

Well, you have to be prepared to jump through a lot of hoops to even get wait listed.  It's a bit easier if you have a living donor, but there are still a lot of hurdles.  The hospital's priorities are skewed as much toward your health (can you survive the operation) as they are toward insurance (can you pay for the operation and the meds after).  The transplant team wants to know if there is any reason you wouldn't be a good candidate.  Have you been "compliant" and shown that you can follow directions from your medical team?  Are you mentally capable of dealing with the stress?  Are you mentally sound at all? Do you have the financial and social support you are going to need during recovery?  Are you suffering from any medical conditions that are going to be affected by the transplant meds that lower your immune system?  Cancer patients in particular have big issues getting listed - it's too easy for the cancer to return, and then you have to go off the immuno-suppressants.  Is the cause of your kidney failure going to reoccur with the transplanted kidney?  What is your current weight?  Many centers have set weight limits that you must be below, because they claim the surgery is too risky for obese patients.

After the transplant, you will be on a number of drugs with some serious side effects.   Some hospitals are using steroids, some aren't.  Steroids can cause weight gain, changes in your physical appearance, especially what they call "moon face" and some drastic changes in mood and personality for some people.
The other drugs, like tacro and myfortic have some drastic effects as well.  You become more prone to every germ and bug that passes by.  In order to stay healthy, you have to turn in a bit of a germophobic. 

It's also a surgery, of course, and all surgeries come with risks of complications, both for you and any possible donor. Infection, surgical error, anesthetic allergies....all the risks that come with going under the knife for anything are still there for transplants.   I was in the hospital for 2 months, and almost didn't make it out.  I had to relearn to walk, and I still have more surgery to come to repair the damage and put my intestines back where they belong.  It's not a decision to make lightly.

Still, I'd choose to do it again in a heart beat.  It's soooooo much better living with my transplant than it was for me on dialysis.

You have to decide for yourself, but do so by getting as much information as possible!

[jeannea]

I loved my transplant. The surgery had some pain but by the next morning I felt great. I took around 35 pills a day but that can vary based on your disease. You need regular blood tests forever. But I don't want to discourage you. I felt good for many years. The pills were mainly an annoyance. I could go where I wanted. I worked full time. An infection finally did me in after 11 years but those years were pretty healthy. You can send me a message if you have specific questions that you want answered.

[Sugarlump]

A transplant can change your life for the better OR be your worse nightmare.
You need to be prepared to deal with the emotional  roller coaster of a transplant, particularly when things go wrong as they often do, rejection, infection and stuff. That can be very tough unless you have support.
I am on second transplant, first one failed from 3 months and this one is struggling now 4months.
Don't think for a moment transplants are a guaranteed cure. They can cause a lot of problems and the drug regime is difficult. Side effects to the drugs very common, ranging from irritating to life-threatening. My health still has a long way to go to full recovery.

Good luck with your decision.

[lou]

i had my transplant just over a year ago now and so far only have amazing things to say about it. i know problems can happen at any time but so far (fingers crossed!) all is going really well. i really feel like i have my old life back again. i am now down to taking 5 pills a day and feel the same as i did before i started dialysis - actually i feel a lot better because i think i appreciate everything so much more.

i know people can have good and bad experiences of a transplant but i would advise anyone to have one, if it is an option for them.

really hope things go well for you whatever you decide x x

[RichardMEL]

You have to remember that transplant is a form of treatment for CHK - **NOT** a cure. So like dialysis it has its own pros and cons. Again, like dialysis, some people do well with transplants, and others do not - for any number of reasons both within our control and without.

For mine, 4 and a half months in, I am pretty happy with where I am at. Yes, I have had hiccups, and worries and all the rest, but now that it is stabalising things feel more "normal" for me than they have in such a long time. Of course not "normal" compared to a healthy person, but much better than dialysis that's for sure.

Yes, there are more/different meds than what I had on dialysis, but those are slowly coming down and being managed. Again some have side effects (the shaking is the fun one - not!) but even those are mostly under control as the doses of some of the more evil meds like prednisolone(steroid) and cyclosporin(immunosupressant) are reduced to closer to maintenance doses.

I thank every day my selfless donor who gave of thsmevles for my chance, and I know that my time with this transplant is, more likely than not, limited - but what that limit is - who can say? So I try and live as best I can, honour the memory of that donor, and enjoy the (relative) freedom this transplant is giving me.

The decision to choose transplant is a difficult one, and everyone's circumstances are different. All I can say is that for now mine is working well and I am happy. Next week something may go askew, and I may not be so happy. This is the risk we take - for me, the benefits - which hopefully will last for years - outweigh the risks. That may not be the case for everyone and I totally respect and support anyone who decides to not go there.

If you do decide to go down the transplant path just understand that while the technology, drugs, procedures and experiences are getting better every single day leading to better outcomes for everyone - it is still a complicated and not risk free journey - and you have to be aware that things can go wrong, and there will almost certainly be bumps along the way.

With that in mind - I consider the experience no worse than dealing with dialysis's ups and downs - it's just a different set of things to consider and worry about.

[Sugarlump]

With respect Richard, you've been lucky 

[RichardMEL]

Yes, you're right. So far I have been lucky and I absolutely appreciate that - not that it's all been plain sailing - I did get thrown into the ward with little notice back in January when they feared I might be rejecting or something and it turned out to be.. well nothing but yes, compared to some folks so far I am doing pretty well - doesn't mean it couldn't go south tomorrow (but hopefully not!!). I'm not trying to crow or even suggest all transplants are stress free and wonderful - far from it - but for every person we have on here who have had problems, rejections and of course failed transplants, there are those that have had organs last for years, even decades - and that gives people like me, and hopefully those considering transplant, hope that their journey can be just as good - specially given that medical science and experience with transplantation, and improvements in treatment/drug protocols in theory should help that outcome.

All I'm trying to stress is to be aware that it can work out wonderfull or be a rocky road. Me, I'm staying positive as much as I can - I do firmly believe that while it is important to be realistic in one's outlook and understand potential risks and issues that can come up, it's also important the attitude you take in and go with - and that applies to dialysis just as much as transplant in my view.

I just wish everyone's transplants could go o smoothly!!!

[Sugarlump]

i don't necesssarily think my attitude had any effect on last transplant failure. I believed it would all be fine last time and I trusted the docs blindly never dreamed it would crash and burn so quickly. Never thought I would fail, but it did regardless and in difficult circumstances.
This time, I have a lot less faith because it shook me to the core last time. I just don't believe so much, in fate, luck or the docs... that fear always lurks around the corner of your mind.
I have seen other people have transplants and treat them so casually, smoking , drinking etc and they don't have any problems... that is hard to balance out in your mind...
I don't wish to put anyone off having a transplant but I would have preferred  a more realistic idea of what was coming first time around. I hit the ground clueless after operation.

[Ang]

as a newbie to this transplant gig(7+ ) months old,personally i would advocate transplants for  should everyone.for me i've been through the ringer over the last 7 months, and would'nt change a thing,this transplant has basically switched the lights back on.
as to the pills i was on some 20 or so tabs a day,when filling the pill box these past days i was happy when i realised its pretty much 9-10 pills a day
 i am fully aware that this tx won't last forever, but i hope by me doing what i need to do everyday it should last for a few years to come(20 yrs ) is a good start