Do I want a transplant?

[gothiclovemonkey]

The more close I become to the goal weight, I fear more things about transplanting. Do I really want to even try??
Ive lost all this weight, they say I am now small enough, but my dr still doubts they will even put me on a list. He has me as non compliant, and he says with my mental problems, he doesnt think i could get one... BUT if he is wrong, and I can... Do i want it? what if it doesnt work? what if fsgs fails it as well? wasted.... i would feel so terrible. What if i forget to take my meds, like i do sooo often already?? (surprisingly getting a little bit better at that tho!) Do i really even want to waste time going to find out, only to be told i cant get one because i am too crazy?
this really sucks... I mean, I would love to get back to semi-normal lol It would be sooo much better for my son... and for me im sure, but idk.... so many doubts.

[peleroja]

For about five years I was perfectly happy with my PD and never even considered a transplant.  Then when my numbers tanked (only because I was doing the Adequest wrong), I went through all the tests to get on the list.  UCLA told me I had to lose down to 160 before they would put me on the list.  Well, I got down to 173 and it all hit the fan.  I got peritonitis and had to have my catheter removed and go on hemo for 6 months.  Then as soon as I got my new catheter my weight ballooned again.  I finally told UCLA to just put me on hold. 

I think the bottom line is it's a decision only you can make.  My friend, who is a 6 year transplant recipient, says it was the best thing that ever happened to her.  If you think it will make your life better, go for it.

[bette1]

It took a long time for me to get ready to have a transplant.  I was doing really well on dialysis, so I didn't want to rock the boat.  I finally got my first transplant because I wanted to try to be a mom.  It's really individual.  You have to weigh the risks and realize that a transplant is not a cure, just a treatment.  I understand why people who are doing well on dialysis stay on dialysisi.

[MooseMom]

May I ask...what exactly is the nature of your mental problems?  Do you have a specific diagnosis?  If so, what exactly is your treatment regimen?  All of your questions are valid, but let's start by addressing just one of them at a time.

I think perhaps the thing to keep in mind is that you do not HAVE to have a transplant if you do not want one.  Even if you go through all of the evaluation process, you still can just say no at any time.  But it might not be a bad idea to at least start down that path and decide as you get deeper into the process.  It's about giving yourself options.

[paris]

I think we can all relate to some of your feelings.  Even when you make a decision, you will question it a thousand times.   And your neph isn't the one who evaluates you and he shouldn't say anything about about if he thinks they will accept you.   How discouraging his words are.

I also have FSGS and it reaccuring is a huge worry.  Actually, last week I put myself in a tail spin, because I kept worrying about why this kidney didn't go to someone younger or sicker.  And what if FSGS comes back?      I had made peace with the fact that I wasn't going to get a transplant after my 5 year evaluation.  So, when I was sitting in the ER going through last minute tests again, I kept asking myself "can I do this" "can I take all those meds forever" "Will it be worth it?"   So, even right before surgery, I had doubts running through my head.  (haven't admitted that to anyone yet).    You are young with a son.  I can understand you wanting your life back.

Bette is so right. It is just another treatment, not a cure. But it is a good treatment and gives you more freedom.   The meds have to be taken 12 hour apart, on time, every time or you risk rejection.  But, you can do that!  I have a little alarm that goes off twice a day and it is a life saver.  I am so new to this, but I think the routine will get easier every week.   

I would suggest talking with the transplant center. The first thing I had to do was go to an information session. It was great and gave me so much info.  After that, you can decide to take the next step.  The doctors kept telling me that they weren't trying to rule me out, just helping me in the best shape for surgery.  Even the social worker is there to help, not reject you.   

Congratulations on the weight lose!  That is quite an accomplishment.           Take things slowly.  When you get listed (not if!) you always have the last voice on the matter and can always say "I am not ready" if you get the call.  Many do that.   It is a very hard decision.  My thoughts and prayers are with you as you struggle with a decision.         

[gothiclovemonkey]

Mental problems lol lets see... i am currently diagnosed as having Borderline Personality Disorder, Chronic Depression, Post Tramatic Stress Disorder, and I have started seeing a psychiatrist again after a few year  break, so perhaps that may change? Ive been in therapy since I was 11 years old, I have an addiction to harming myself (nothing major, and i havent in over a year..) It is a struggle every day, but Since i had my son, I have tried not to do it, only done it 3 or 4 times since I had him. Ive been doing it since i was 11 years old, mostly on a daily basis, so im quite proud that im recovering from that... even if i do have alot of trouble with it some days.
Its kind of strange that i just said that, where tons of people could comment............... 

I know its ultimately my decision, but... I would feel really terrible if i got one and it didnt work out... Also afraid of the surgery! and the testing!

Id love to have more energy and time for my son, HD knocks me silly, and i feel like crap all the time... If transplant could change that, then id do it, just for him... but it seems like it might not? i need to do alot more research.... i dont really know much about it. I had talked myself down from wanting one, since my dr made it clear hed never refer me... but now that ive lost this  weight, and if i can quit smoking, then... maybe.. idk. my dr is a jerk lol

[MooseMom]

glm, I have fsgs, too, so I understand the worry about recurrence.  A lot of transplant patients have fsgs, so it's not like no one with fsgs can ever hope to have a successful transplant.  There are new strategies to better prepare an fsgs patient for transplant and then to protect the new kidney.  There are never any guarantees.  That's the thing I've found hardest to cope with...there are never any guarantees.  But even so, you can't just surrender to inertia forever.

I don't think the transplant center cares all that much about your psychiatric problems as long as you take your meds.  All they can do is to treat your body with a new kidney, and they will want to make sure that you will not work against them, that you will work with them to keep a new kidney safe, and that means taking your meds and keeping your appts and doing whatever else they say needs doing.  I doubt that there has NEVER been a transplant patient who has been under the care of a psychiatrist.  But you will have to be honest with them and with yourself and decide whether or not you can truly keep up your end of the bargain.  But I'd guess that if you have been able to get yourself to D, then you could certainly adhere to a pill-taking schedule!

I suspect that ultimately you'll get so bloody sick of D that you will want to explore transplantation.  But it's a process.  You don't seem ready to go that route just yet, but I think you soon may.  You've already exhibited great courage; you may be selling yourself short.

[cariad]

You should be proud, GLM! I am not a cutter, but have spoken to many in my work on crisis lines and it is a rough addiction to break from everything I've heard. Brave of you to write this out, you should also be proud for that.

my dr is a jerk

Supreme understatement there, in my opinion.

I can appreciate that you would feel bad if something happened to the transplant, but that is one of the risks of the procedure for anyone. I would be devastated if my transplant failed after everything my husband (donor) went through to do this for me, but it was take a risk or spend the rest of my days apologising to my kids for not being able to fully participate in their lives. I know that I tolerate transplant extremely well, so for me, there was little question what to do.

Transplant doctors discriminate against people with mental illness shamelessly. I think if you can show a significant record of keeping your mental illness controlled, they should let you have a place on the list. Addiction is a lifelong illness as well, but they do let former alcoholics and drug addicts get transplants so long as they show willing.

Oh, and please, switch nephrologists. (Just a bit of advice, worth every cent you paid for it. )

[MooseMom]

I agree with cariad...your doctors historically have not served you very well, judging from your posts.  Is there any way you can change nephs?  Do you have to have a referral from your current neph to even phone the transplant center just to get some basic info?  Have you even thought about which center you'd like to go to?  If so, could you contact them just to ask a few basic questions?

[RichardMEL]

*hugs*

As a FSGSer I can absolutely relate to your feelings of worry about that - as Paris has said a number of us share that concern. Really the decision should probably come down to if you feel the benefits, or potential benefits to you of a transplant outweigh the cons - and that's a hard one for anyone to answer.

Perhaps what you should do though is not concentrate on the transplanet aspect at this point, but work on the other things that are concerning you (and perhaps your jerk doc) at this point - like finding ways to take your meds when you need to - like a pill box, phone alarms, whatever. As we all know taking meds post transplant are *critical* to its survival, so this is a very real concern for anyone - but specially you if you know you have trouble taking your meds as it is. So, why don't you set yourself a goal to get the meds under control over say 3 months or so, and then demonstrate that you can be confident with that aspect of things.. and work on anything else that might be an issue, like attending dialysis, and whatever else you might be considered noncomplaint for... then perhaps you will feel in a better place and more confident to tackle the transplant question.

I think for a young lady in your situation the benefits of life with a transplant would be enormous - more time and energy to spend on yourself and your son, ability to work and stuff(hopefully) and a more positive outlook. That's got to be worth a lot to offset the cons of dealing with the meds, worry about FSGS/rejection/failure.

 

[gothiclovemonkey]

switch nephrologists?? I tried........ the one i tried to, said he respected my dr to much to take me on as his patient... whatever that means....
Luckily, My psychiatrist, and another dr i know, has offered to refer me if they can... Thats why im even thinking about it lol knowing my dr wont, but they said they would so.. i thought id think about it. For so long ive been talking myself out of it because of Dr. Jerk.
Infact, my psychiatrist thinks half of my problems are caused by my kidney failure in some way (for example my dr being a... jerk. lol and the feelings i have about D...etc) She said she would stand up for me, if they bring up my mental stuff... so thats awesomeness.
also...im kind of... a bit freaked out by the thought of someone elses organ being inside me

[paris]

Richard, you always say things so well.  The three month goal is an excellent idea. 

Also, this whole process is based on hope.  Hope you are listed, hope you get a kidney, and hope it lasts for years.   Gothic, we are all here for you, to listen and encourage.  Keep asking questions.  There will always be someone here who has gone through the same thing already. They are paving the path to make your journey easier.   A friend once told me "don't cross that bridge until you come to it, God isn't finished building it yet".  So take care of today-- working on goals you can accomplish now.  Then, go on to the next goal.  We will be your cheerleaders     And we are all proud of what you have already accomplished.  You have shown you can do anything you set your mind to.    Sending you lots warm, loving hugs.       

Also, I am slowly getting use to the idea of someone's kidney in me.  I got to see it right before surgery. And then Tuesday I got to see it on the monitor when they took the stent out. It was pretty and pink. I am talking to someone about the donor and family. I knew that would be hard, so I seeked help right away ( my pastor and a psycologist at the transplant clinic).   I respect what the donor family did so much and it makes me do everything I can to take care of the kidney.   

[RichardMEL]

Strangely enough the thought of having another organ in me, or another person's I mean, isn't one I've really thought about, though as my brother's potential donation progresses (at a snail's pace) I actually think it would be weirder for me to have someone I KNOW's kidney in me, than a stranger. I know that seems a bit odd, but I guess the whole situation is pretty unique to those of us having, or had, transplants.

I know one thing - I do *NOT* want to see it before oR after!!! I am such a wuss! 

[cariad]

switch nephrologists?? I tried........ the one i tried to, said he respected my dr to much to take me on as his patient... whatever that means....
Luckily, My psychiatrist, and another dr i know, has offered to refer me if they can... Thats why im even thinking about it lol knowing my dr wont, but they said they would so.. i thought id think about it. For so long ive been talking myself out of it because of Dr. Jerk.
Infact, my psychiatrist thinks half of my problems are caused by my kidney failure in some way (for example my dr being a... jerk. lol and the feelings i have about D...etc) She said she would stand up for me, if they bring up my mental stuff... so thats awesomeness.
also...im kind of... a bit freaked out by the thought of someone elses organ being inside me

Pregnancy freaked me out way more than transplant. I know most women consider it a transcendent experience, but a person living inside my body? I had to put that part out of my mind.

I honestly don't think about it with transplant, same as I do not care about receiving someone else's blood, but we all have our own hangups. Gee, GLM, the nephrologists in your area really give me the creeps. Are you in the US? HMO by any chance? If you are HMO, you do need a referral, but I know I got mine from my GP when I was HMO so it does not specifically need to be a nephrologist. Every PPO I've ever had allowed self-referrals, so I just called the transplant centres direct. I can tell how hesitant you are, but like MooseMom said, no harm in getting on the list and keeping your options open. For a young person such as yourself, you'll probably just need a renal ultrasound, some heart tests, blood work, and a pap. Maybe not even that much. Are you afraid of the tests because of pain concerns or because of what they might find?

[Riki]

I think to get on the list here, I had to have a chest x-ray, echo cardiogram, mammogram, and pap.  The pap and mammogram need to be done every 2 years to stay on the list, and I have an ECG done every time I go away.  I'm also tested for Hep and HIV every 6 months.  I don't think there's a huge age difference between me and GLM...

I'm sure you've heard this before, but life's a crap shoot, you don't know what's going to happen.  There's nothing wrong with getting on the list, and if you should get the call, it's still up to you whether you take it or not.  I can tell you from experience, it really is a brand new you, even if it doesn't last.  My last kidney lasted only 3 years, but I did things in those 3 years that would have been a heck of a lot harder to do, if I'd be able to do them at all, on dialysis.

In the end, you have to weigh the pros and the cons, and do what's right for you

[gothiclovemonkey]

I didnt really know what the testing involves, but that doesnt sound so bad. I am afraid they would find something though...

I dont even really like to be touched by other people most of the time, like random touch.. ew... so thats probably why the idea of having an organ from someone else grosses me out.

i agree, having 3 years to live life would be better than nothing

im on medicare and medicaid, in the US...

Thank you all so much, it is so helpful to hear all of this