Would you stay on the waitinglist?

[cassandra]

I am on the waitinglist (for the second time, first time '83-'85 received kidney from dad) since '98. Had 1 call in '08 > cross match clash.
Nothing since than, bar sepsis, and numerous surgeries .
Antibodies now 100%.
If I ever get a kidney I'll have to take 'a huge amount of anti- rejection drugs' so I was told by transplant surgeons.
I seem to have a tendency of reacting adversely to every one of them.

So would you stay on TheList?

Thanx for answering already. It's just that unexpected phone calls, and the feeling of 'waiting' is starting to get on my nerves, and the yearly checkup with the 'all knowing' surgeons is seriously doing my head in.

   

Love, Cas

[obsidianom]

Only you can make that decision obviously, but since you asked, NO.
My wife and I decided not to go for her brothers kidney(HE OFFERED) for many of the reasons you mentioned. Nxstage done aggressively can be close to a kidney anyway. The issue of rejection meds and side effects and organ failure returning etc would be too much for us. Kidney transplant is not as simple as sticking in a new car part . There is so much to it . For some it is great but for others of us it isnt worth it.
If you are doing well with Nxstage , consider whether it is worth rocking the boat.

[cassandra]

Thanx Obsi, I really appreciate your answer.

Love, Cas

[Shaks24]

My center and Neph have been talking to me about transplant at the University of Tennessee.  Honestly I do not want to go there.  I see it as another treatment with drawbacks and risks. I am content doing my PD treatments for now. If HD was my only other option I would consider transplant. I totally understand your reluctance Cass given the circumstances.

[amanda100wilson]

My transplant units don't bother me too much (probably because they know the odds are against me! ), so apart from sending a couple of lab bottles off a month, I stay on the list.  Have considered taking myself off the list and maybe will once I know that I have cracked doing extended.  Cassandra, one question.  Were your transplant docs. running a regular transplant program or was it one where they do more advanced treatments such as plasmapheresis for sensitized patients?  Not sure if the med. requirements are lower in the latter?

[cassandra]

Thanx Shaks24, and Amanda for your answers. I will ask about the plasmapheresis, and consequences for medication .

Thanx again, love you all lots

       

[NDXUFan]

I am on the waitinglist (for the second time, first time '83-'85 received kidney from dad) since '98. Had 1 call in '08 > cross match clash.
Nothing since than, bar sepsis, and numerous surgeries .
Antibodies now 100%.
If I ever get a kidney I'll have to take 'a huge amount of anti- rejection drugs' so I was told by transplant surgeons.
I seem to have a tendency of reacting adversely to every one of them.

So would you stay on TheList?

Thanx for answering already. It's just that unexpected phone calls, and the feeling of 'waiting' is starting to get on my nerves, and the yearly checkup with the 'all knowing' surgeons is seriously doing my head in.

   

Love, Cas

ND:

Every medical procedure has costs and benefits, in other words, trade-offs.   If it is an academic medical center, then it is probably a good risk.  You might want to get a second opinion from Indiana University in Indianapolis.  The program at IU is outstanding and they are a top tier transplant program.  The care that I have received from them is nothing short of outstanding.  For me, it would depend on the what kind of medication and the side-effects. 

[jeannea]

Because my antibodies were high, I got some strong treatments after my second transplant. The first 3 days in the hospital I got long IV treatments. Unfortunately I can't remember the name of the medicine. I didn't have many side effects from it except the one day I had a minor panic attack. Since then I've had a few ups and downs but I'm glad to be off dialysis. So personally I would stay on the list but I know this is a very personal decision.

[noahvale]

^

[cassandra]

You are all so wonderful with your well explained answers. I still don't know what to do, but I'll sleep on it for a bit more. I'll write to the transplant clinic to ask what their program actually is (I'm pretty embarrassed that I don't know that (it's not as if I didn't have the time to find that out )

But all of you have given me lots to think about (again), so thank you all very much.

Love you all, Cas