Got "THE CALL" but I said no...

[kidney4traci]

I got a wake up call last night, literally.  I got a call that said there was a person that had past away that was a match, but... they had Hep B.  It was a shock to get the call finally, makes a million questions come to your mind in less than one second.  You actually have to make a life changing decision on the spot.  It made me realize that I should have a list of questions to ask.  I said no because I had been advised not to accept an at risk transplant at this time, my dr said I am too healthy otherwise.  I guess if I already had hep B then it would have been ideal.  I have been kinda bummed all day, especially now as I am waiting for my machine to prime and go on again.  At least it shows there are matches out there... but I still feel a bit stressed.  The call also made me scared a bit, am I really ready for this???

Anyone else ever said no?  I would love some support.  Does anyone else have a list of questions to ask when you get the call?  By the way, other than my husband, you guys were next in my thoughts to "talk" to.  Thanks.

[Beth36]

Oh Traci! I can understand your logic totally.  You need to do what is best for you and your health.  Yes, there are matches out there and I hope you get another call soon...I'm pulling for you!!! 

Beth

[goofynina]

Thank you for thinking of us Traci and i believe you made the right decision, always go with your first instinct, my question to you is, did you ask if the deceased donor had it or did they just offer that information to you?  Reason i am asking cuz i am still in awe as to what is happening to our Amanda (unbelievable)  I am glad however that you did not take the kidney and end up with something that would eventually just make you sick again.  Take care and please keep us posted.  

[Black]

My  -- you did what was best for you and made the best call.

Don't the transplant teams have someone to discuss with you, in advance, the possibility of a non-perfect kidney being available?  You should have been made more ready to make that difficult decision. 

[Sluff]

You made the right choice in my opinion. 

[kidney4traci]

Goofynina, yes they told me upfront of the status, and I was thinking of Amanda too.  Why wasn't she notified as well?  They test the body at time of death, the antibodies for that should have showd up. 

Black, I do remember them talking about the risks of different kidneys, but maybe it was just too much info as I don't remember everuthing they said.  That's why I want to make a list to help me when I get called next time.  Thanks again for your responses.

[angela515]

I think you made the right decision for yourself.

I don't have advice as I have only ever gotten "the call" once, and I said yes to a perfect match, that was a perfectly healthy 15 yr old boy who died in a car accident. If I were in your shoes, I would said no also.

 

[Romona]

You did what was best. In your heart it didn't feel right. 

[Redbomb]

I, like others think that you made the right decision. 

I'm sure you will get "The Call" again!

[paris]

Have you had the hepB vaccine series?  Just wondering because my transplant team had that on their list of things I had to do.  It seems like each center has their own set of standards.  It is an easy precaution to take. 

[Roxy]

  Always stick with your instincts. Often times I regret it when I go against my instincts. I think you did what was best for you and that's terrific. 

[stauffenberg]

Aside from the problem with the kidney coming from a donor with Hepatitis C, it is a difficult judgment call to decide whether or not to accept a transplant if you are still relatively healthy and able to function without one for the time being.  On the one hand, the longer you can live with your own kidney rather than on dialysis or with a transplant with toxic immunosuppressive drugs, the more you extend your overall life expectancy.  But on the other hand, when you turn down a kidney, you cannot know in advance whether you might have to wait another four, six, or eight years for another one to turn up for you, which could cost you an enormous loss of health and life expectancy.

[mrhecht]

 That's why I want to make a list to help me when I get called next time.  Thanks again for your responses.

I've said no twice...years ago when I was on the list from 1992 to 1996. Then I took myself off for a while for a variety of reasons. Now I'm back on since November of last year. Did I shorten my life expectancy by saying no and remaining on dialysis all these years.......maybe.......but maybe I saved myself a few years of not being on a slew of toxic meds suppressing my immune system, which works quite well......never sick with even a cold.

I made a list in 1992 with the help of my 1st neph, who I am thankful to have known. Here it is:
1) Antigen match - decide what your minimum would be
2) CMV status of kidney (and know your own)
3) Cold time &  geographic location of kidney
4) Cause of death
5) Medical history.....drug use, HBP, Hep B, Hep C, HIV, Cancers, lifestyle risks
6) Age of donor

I am horrified and feel so badly for what has happened to Amanda. I didn't know her at all and am only connected by the shared experience of dialysis but there are no words to describe the outrage that I feel on her behalf which I'm sure is shared by all.

[angela515]

but maybe I saved myself a few years of not being on a slew of toxic meds suppressing my immune system

I never had any problems with my "toxic" medicines...however, I do accept whatever problems do arise in the future from them, b/c I'de rather live a normal life as long as possible without dialysis.

[Ginger]

I said no to the first call as it did not sound like a 'good' kidney and I was feeling good at the time.
The second call, I said yes to but could not have it because my own kidneys were too big and there was no room for it---so back to dialysis I went.
I said yes to the third call which was a 0 match, 54yr old(I am 62) who died of a stroke,--means expanded criteria donor.  So far it is working well and I hope it continues to for a long time.  I was on the list for almost 5 years before transplant occurred.

[stauffenberg]

Because dialysis is equivalent to only 10% of normal renal function, staying on dialysis causes deterioration of the body.  Because a transplant requires toxic immunosuppressive drugs, living with a transplant causes deterioration of the body.  But of the two, statistics show that dialysis is twice as bad for the body as transplant is (three times worse if you are a diabetic), so the better option is transplant, unless there is something clearly wrong with the organ available, or you have medical problems which make a transplant too risky.

[Zach]

Because dialysis is equivalent to only 10% of normal renal function ...

Since Traci is on nightly short hemodialysis, she may be receiving more than only 10%.  And then there are those on nocturnal hemodialysis, the gold standard of dialysis, who have a much closer equivalent to normal kidney function.
 

[mrhecht]

but maybe I saved myself a few years of not being on a slew of toxic meds suppressing my immune system

I never had any problems with my "toxic" medicines...however, I do accept whatever problems do arise in the future from them, b/c I'de rather live a normal life as long as possible without dialysis.

I rejoice with every person who has a successful transplant and can tolerate the side effects of the meds. I hope that I feel the same as you after I get mine. I wish I were more excited about getting one. I hate to relinqish control and depend on the accuracy of people I don't even know, hoping that they are doing their job the way they're supposed to.

I admire every single person who goes thru one.......truly you are braver than I. May God give me the grace and courage to expect the best outcome when my call comes.

[kidney4traci]

mrhecht, thanks for the list.  Zach - are you going to go on nocternal?  I have been reading up on it.  Anyway, thanks to all for your input.  I was never able to hear from so many who have gone through this process before and to just bounce ideas and information off each other is awesome.  I do feel now that I made the right choice, I have peace about that.  I want to be prepared - the next time I may take the plunge.  It is risky, but I am encouraged by all who are well now and from the statistics that show your life expectancy is increased too.  My father and uncles never had the chance, and I do have a cousin who has had one or two, I'm not sure.  That side of the family won't talk to me.  Long story... sad.  Anyway - keep posting!

[angela515]

but maybe I saved myself a few years of not being on a slew of toxic meds suppressing my immune system

I never had any problems with my "toxic" medicines...however, I do accept whatever problems do arise in the future from them, b/c I'de rather live a normal life as long as possible without dialysis.

I rejoice with every person who has a successful transplant and can tolerate the side effects of the meds. I hope that I feel the same as you after I get mine. I wish I were more excited about getting one. I hate to relinqish control and depend on the accuracy of people I don't even know, hoping that they are doing their job the way they're supposed to.

I admire every single person who goes thru one.......truly you are braver than I. May God give me the grace and courage to expect the best outcome when my call comes.

What side effects? I don't have any side effects from the medicines... I expect some in the future as most of the things immunosupressive drugs do are things that don't happen until after years of taking the medicine... even then your not guaranteed to get the problems.

I guess the trust issue comes when you meet your surgeon... mine is a wonderful man.. and I reviewed his surgical history before I ever got the call.. I felt very comfortable with him and his choices.

[mrhecht]

What side effects? I don't have any side effects from the medicines... I expect some in the future as most of the things immunosupressive drugs do are things that don't happen until after years of taking the medicine... even then your not guaranteed to get the problems.

I guess the trust issue comes when you meet your surgeon... mine is a wonderful man.. and I reviewed his surgical history before I ever got the call.. I felt very comfortable with him and his choices.

As I recall, you're on a steroid free protocol....my PRA is 46% and the program I'm in doesn't allow steroid free for a PRA that high. Also doesn't your sig tag say "perfect match" cadaver kidney? I'm assuming you're not on very many immunosuppressants. How about the anti-viral Valcyte? I've had to take that before for a reaction the docs thought was viral (but wasn't) and it made made me feel ....well......weird is the only way I can describe it, kind of off-balance. You're very fortunate to not be experiencing immediate side effects, but I was actually referring to the long-term effects of the drugs. You are very well informed and experienced so I'm sure that you know about the nephrotoxic effect of Cyclosporine, which I find ironic, but I know it is widely used, works well and they monitor levels carefully. Prednisone....aside from the cosmetic effects of the initial high doses; the possibilty of severe bone damage on top of metabolic bone disease doesn't thrill me. Skin cancers and other nasties, acid reflux, hypertension, possible type II diabetes.........like dialysis itself, there are side effects from long term "usage". No worries though, there's a prescription for all of them I'm sure.

In choosing treatment what it all really comes down to is what secondary effects are you willing to accept and adapt to. I believe the answer to that changes with time and personal experience. I have not had a transplant yet. My surgical team is rated highly and I do have confidence in them. Too bad its not doctors/nurses that I know in the lab testing the kidney for just about every disease known to man (I hope) and too bad its not doctors/nurses that I know doing the actual tissue typing and cross matching with my blood and the unknown deceased.

Am I paranoid.....probably just a little bit! Thankfully my faith takes over when my mind runs rampant.




EDITED:  Fixed quote tag error - Goofynina/Admin.

[angela515]

What side effects? I don't have any side effects from the medicines... I expect some in the future as most of the things immunosupressive drugs do are things that don't happen until after years of taking the medicine... even then your not guaranteed to get the problems.

I guess the trust issue comes when you meet your surgeon... mine is a wonderful man.. and I reviewed his surgical history before I ever got the call.. I felt very comfortable with him and his choices.

As I recall, you're on a steroid free protocol....my PRA is 46% and the program I'm in doesn't allow steroid free for a PRA that high. Also doesn't your sig tag say "perfect match" cadaver kidney? I'm assuming you're not on very many immunosuppressants. How about the anti-viral Valcyte? I've had to take that before for a reaction the docs thought was viral (but wasn't) and it made made me feel ....well......weird is the only way I can describe it, kind of off-balance. You're very fortunate to not be experiencing immediate side effects, but I was actually referring to the long-term effects of the drugs.

I am on the same amount of immunosupressants as most people on here minus the Prednisone and the others on here that aren't on Prednisone seem to be on 2 also.. I only seen one person on this site on 1 immunosupressant med, and it ain't me... I am on Prograf and Rapamune. Yes, I took Valcyte for the first 6 months post transplant..  I had my first transplant for 5 years, so I was referring to that one also when I said I have no side effects, short-term nor long-term from them.

You are very well informed and experienced so I'm sure that you know about the nephrotoxic effect of Cyclosporine, which I find ironic, but I know it is widely used, works well and they monitor levels carefully. Prednisone....aside from the cosmetic effects of the initial high doses; the possibilty of severe bone damage on top of metabolic bone disease doesn't thrill me. Skin cancers and other nasties, acid reflux, hypertension, possible type II diabetes.........like dialysis itself, there are side effects from long term "usage". No worries though, there's a prescription for all of them I'm sure.

As for Cyclorsporin, I had no probs with it the whole 5 years I was on it with my first transplant... As for Prednisone, it's an evil evil drug, and I am glad I am not on it right now.. however, I have taken it from the age of 12-18 and then again with my 1st transplant the whole 5 years, so from 1999-2004 (age 21-26) so that's a total of... 11-12 years total, some of those begining years I was only on IV Prednisone (Solumedrol) very high doses... which caused me to get AVN, and had to have my ankles fused, and now I will need an ankle replacement and knee replacement one day.. those were all caused before my transplant, so that's why I say no side-effects, even of the prednisone, during my transplants... However, yes, Prednisone does cause nasty side effects.. I know, I have them... but not everyone gets them... and not everyone will get them after a transplant taking Prednisone b/c your usually not on seriously high doses of it... but they are a possibility.

I respect anyone's decision to choose transplant or not... but for me, transplant oh weighs dialysis even with any side effects... I hate dialysis with all my heart and with my experiences with transplants, have both been great... so that's why i'm so passionate about it.