nervous about re-eval

[gothiclovemonkey]

I have my re-eval coming up for tx...
i am so nervous i can barely stand it. i mean, i really would like a chance to have a transplant... because dialysis is horrible for me. otherwise, i think id just stay on it...
is that a jerk thing to say? i hate that my mind feels this way...
i guess it is because im so used to this lifestyle that i fear the change, and the uncertainty of it all...
say i do get lucky and get one, and it works out great... i have no real education, passed high school, and no idea what id do with myself, as far as a career...
or say i get one, it works a short time, but then poops out too? i know this happens with what I have, so that terrifies me. I know myself well enough to know that would devastate me... to have that freedom from the machine, only to be right back on it. i dont think i could handle that either.
or worse, ive seen a few people get transplants and die shortly after due to complications- i reject simple stitches and catheters, how is my body going to handle a new kidney??? AND prednisone and I are mortal enemies... it literally makes me a nut job!

I feel like such a jerk for even feeling this way, I know there are many people who would kill for the chance at a kidney, and here i am, not sure if thats what i even want... If dialysis wasnt so horrible for me, i wouldnt mind living the rest of my life like that... but treatments are bad, the clinic sucks, so does my dr, so i really DO want to be free of them, if only for a while...
My GP told me that its crazy for me to fear a tx, when what i should be fearing is spending the rest of my life on dialysis... i suppose he is right, but it doesnt change the fact that transplant scares me to death. I hate that im so complacent. ive always feared change, and i like having my life on a schedule that i know whats going on and when and how. i dont like not knowing.... im sure most people have that issue... so how do i combat it?

Another thing i just thought about, since the last time i was there, ive had 3 blood transfusions, doesnt that effect something to do with how you are matched? (i think thats what i was told?) ive also had heart issues, nothing major but im sure thats a mark against it too... is that like a huge factor, or something that can be 'fixed'? I know theres that thing, not sure what its called... but you do something similar to, what, chemo, or something? to make ur body more like ur donors (something like that anyway lol sheesh sometimes im an idiot with all this medical stuff!) but honestly, i feel like crap enough as it is... (due to other medical issues) Speaking of which, is there a list of disorders/diseases that effect whether or not you can get a tx??? Ive been diagnosed with some new things since my last re-eval....

of course, i intend to mention all these concerns at the appointment, but im scared.

I feel like im being selfish....
not only for others who truly want a transplant, but also for my family, who has to deal with me being crappy so often. but if things dont go well if i had a transplant, they would be much worse off anyway, so theres another fear... becoming an even bigger burden on them than i already am.
AHHHHHHHHHHHHHHHHHHHHH
 

[Ninanna]

Don't feel bad about fearing change, everyone does,  whenever I've gotten a new job, I am always super excited until the morning of my first day. Then I feel so sick and I'm like, "omg I can't do this, what was I thinking!"  But sometimes you have to just jump and fake it till you make it.

Everyone here who has a transplant always has it in the back of their mind, "when is this going to stop working?"  It's a hard thing to deal with and it isn't always easy, but then again neither is dialysis.

I would try not to worry about if your sensitized or not and about other things that may keep you from a tax until you talk to your team. After that if they are an issue, we can trouble shoot them. No sense in worry about things that might not even be an issue.

 

[obsidianom]

I have my re-eval coming up for tx...
i am so nervous i can barely stand it. i mean, i really would like a chance to have a transplant... because dialysis is horrible for me. otherwise, i think id just stay on it...
is that a jerk thing to say? i hate that my mind feels this way...
i guess it is because im so used to this lifestyle that i fear the change, and the uncertainty of it all...
say i do get lucky and get one, and it works out great... i have no real education, passed high school, and no idea what id do with myself, as far as a career...
or say i get one, it works a short time, but then poops out too? i know this happens with what I have, so that terrifies me. I know myself well enough to know that would devastate me... to have that freedom from the machine, only to be right back on it. i dont think i could handle that either.
or worse, ive seen a few people get transplants and die shortly after due to complications- i reject simple stitches and catheters, how is my body going to handle a new kidney??? AND prednisone and I are mortal enemies... it literally makes me a nut job!

I feel like such a jerk for even feeling this way, I know there are many people who would kill for the chance at a kidney, and here i am, not sure if thats what i even want... If dialysis wasnt so horrible for me, i wouldnt mind living the rest of my life like that... but treatments are bad, the clinic sucks, so does my dr, so i really DO want to be free of them, if only for a while...
My GP told me that its crazy for me to fear a tx, when what i should be fearing is spending the rest of my life on dialysis... i suppose he is right, but it doesnt change the fact that transplant scares me to death. I hate that im so complacent. ive always feared change, and i like having my life on a schedule that i know whats going on and when and how. i dont like not knowing.... im sure most people have that issue... so how do i combat it?

Another thing i just thought about, since the last time i was there, ive had 3 blood transfusions, doesnt that effect something to do with how you are matched? (i think thats what i was told?) ive also had heart issues, nothing major but im sure thats a mark against it too... is that like a huge factor, or something that can be 'fixed'? I know theres that thing, not sure what its called... but you do something similar to, what, chemo, or something? to make ur body more like ur donors (something like that anyway lol sheesh sometimes im an idiot with all this medical stuff!) but honestly, i feel like crap enough as it is... (due to other medical issues) Speaking of which, is there a list of disorders/diseases that effect whether or not you can get a tx??? Ive been diagnosed with some new things since my last re-eval....

of course, i intend to mention all these concerns at the appointment, but im scared.

I feel like im being selfish....
not only for others who truly want a transplant, but also for my family, who has to deal with me being crappy so often. but if things dont go well if i had a transplant, they would be much worse off anyway, so theres another fear... becoming an even bigger burden on them than i already am.
AHHHHHHHHHHHHHHHHHHHHH
 

You are an ideal candidate to think about home dialysis. You hate the clinic and going there and need stablity and life on a schedule. Home dialysis would allow you to do that. You could set up your own schedule and hours and be more comfortable. You would also feel better as virtually evryone switching from in center 3 day per week standard dialysis to home dilaysis tends to feel a lot better. Many of us here do it and can help you through it. Even if you are going to think about a transplant this could help you in the meantime and perhaps make you healthier. Having control of your dialysis make help some of your depression.

[jeannea]

Ok. Deep breath.

It's completely normal to feel ambivalent about a transplant. There are a lot of unknowns and a lot of possibilities. Yes, it's possible you could get a transplant and feel great and it's possible you could get a transplant and end up worse than you are now. But the same is true with staying on dialysis. My opinion is you should try to stay on the list with all the problems you've been having with dialysis. On the other hand no one has to listen to me.

Blood transfusions can raise your antibody levels and make it harder to get a match. I was at 97% which means only 3% of the population could be a match. I had a previous transplant and a number of transfusions. When they lower your antibody levels, they can do a few things. They can do plasmapharesis which works like dialysis but is a different system for "cleaning" your blood. They can give you IvIg which is a blood product derived from a thousand donors. I don't know exactly how it works. They can give you Rituximab which is a chemo product. They told me that the antibody procedure only works for about 6 months and then they have to repeat it so they don't do it til you're close to the top of the list. I was supposed to get at least one of those done eventually but my kidney came sooner so they gave me an infusion every day for 4 days after my transplant. I wish I remembered the name of the medicine. As far as worries about chemo, Rituximab doses like this do not put you into menopause or take away all your hair and many people just do plasmapharesis.

Each hospital decides if you have to take prednisone. If you have a really difficult history they may say no to it. I can't say how your other medical conditions will affect your chances of a transplant. Hopefully you have an honest doctor who will tell you your chances of a successful transplant. I know I prefer when they're honest with me. I had had a bad problem with Prograf and I thought we couldn't use it again. They told me what they had discussed and my chances of having a problem again. So far so good.

I can understand the fear of being declared healthy and not knowing what to do for work, etc. Right now I am trying to stay on disability. I had PRES which ruined so much of my intellectual capacity. I'm working on proof of that. It could be that with your other medical problems you could still stay on disability even with a transplant. Most centers have a social worker you could talk to. I also agree with you on feeling devastated to just end up back on dialysis. I have told my family I will not do that. But I don't have a child like you do. I guess I would say this. The doctors want your transplant to succeed. They will do everything they can to help you. You end up having to trust that. It's all you can do.

If you're on the list and they call you and you feel the timing is wrong, you can say no. If you're not on the list though, you never get a chance to say yes. You can do it!

[gothiclovemonkey]

Its very hard for me to trust any doctor, as ive had numorous jerks for doctors... my pediatrician being the first of many, who despite being considered wonderful doctors by many, ended up causing me to be nearly killed by 'misdiagnosing' me (that particular incident, they told my parents, at the age of 8, that was i lying about my pains and aches, that there was absolutely nothing wrong with me- at the age of 9, after screaming for 24 hrs straight, my dad gave in and took me to the ER, to find i had a 25 lb tumor, which was removed...) and things got worse from there.

i talked to my family a bit today about alll of this, i agreed id at least go to the re-eval and discuss this with them. something inside me keeps screaming not to do this though, i dont know if its my fears, or something inside that just KNOWS this wont go well, or if i should ignore it and proceed, or listen to my gut...

reguardless, i do want to find out about home hemo, ive only asked my clinic ten times to set me up with the lady... they dont seem too interested in getting me that info...

[Angiepkd]

Don't feel guilty about being scared to go through transplant!  I was terrified something would go wrong, and my husband was my donor, so I was even more scared for him.  In the end, it all worked out fine.  I am going on nine weeks post tx and both hubby and I are doing great.  I still don't feel as good as I think I should, but I always say my worst day post tx is a thousand times better than being on D.  Dont give up on finding a better solution for your illness.  Whether that be transplant or home hemo, it is worth the effort to feel better!  I did home hemo and felt pretty good on it.  It is very time consuming, but I would not have done nearly as well in center.  When you go for your re-eval, keep in mind that the transplant team will not consider you for transplant if they don't think you will do well.  They are very thorough in evaluating potential recipients, and don't leave anything to chance.  At least go through the process and stay on the list. You can always say no if they call you.  Hang in there!  You can do it!  I got past my fears by reminding myself that my boys still need me and I want to be around for my future grandkids!