What goes through your mind?

[Sluff]

I am just curious as to what your thought process is while you are on the list waiting for the call, after you receive the call, and what emotions do you go through during the process?
Has anyone though about backing out of the transplant after receiving the call?

[BigSky]

First time I was on the list I never gave it any thought.  When I got the call I still never thought about it much.

Got on the list again last month and still do not even think about it.  Way I figure it is that I have no control over it so..........

[goofynina]

First time I was on the list I never gave it any thought.  When I got the call I still never thought about it much.

Got on the list again last month and still do not even think about it.  Way I figure it is that I have no control over it so..........

Good way of looking at it BigSky    However when my phone rings i wonder which bill it is,  (i am not listed)

[boxman55]

As you know I just got on the list. The whole idea of a transplant to me is kinda scary. You read about people's successes but it is still a little out there to comprehend. If and when I get the call I am sure I will just head on out like its time to go to the movies but the longer I think about it the stranger it becomes...To me the unkown is a tough one to grasp.--Boxman55

[RichardMEL]

I've been on the list about 3 years according to my doc (I'm not so sure) and my sister is currently up to the last round of tests for a donation. If everything goes well hopefully surgery might be in May sometime.

How do I feel?

I feel... well I have mixed emotions at this point. The idea of a transplant sometimes is all consuming, and I find myself dreaming of all the things I want to be able to do post transplant, usually beginning with a massive glass of iced water (and other beverages!)

Then I get doubts.. specially worrying about a failure of the transplant, which statistics suggest is not so likely, but it is something we all face, and some people have to make up the "initial rejection" and "within one year failure" statistics.. so it could be me. I think though what worries me way more than that is, thinking of my sister donating, is the fear that something could go wrong for HER.. indeed a week or so ago I had a horrible nightmare that she died during the surgery and I woke up with a working kidney which was great then found out my beautiful sister didn't make it. It was the most horrible dream I have had in years and I was shaking for ages after I woke up.

So I guess my concern is less for me and more for anyone around me.

I also expect IF I got the call (as in a cavadeer transplant) it would be a bit of a rush to get things and head over to the hospital and into it that there wouldn't be much time for thinking until perhaps I was in the hospital waiting for things to happen.

phew! tough question!

[jbeany]

Only just got approved last week - still not officially "on", but should be very soon - just waiting for paperwork.

My first reaction was relief.  I got out of list limbo; I've got a chance at getting a transplant, which seems to me like the best chance I've got at getting a semi-normal life back, even if it's not permanent.

Once I'm on the list, the real waiting begins, of course.  It does, at times, seem kind of gruesome to be sitting around waiting for someone to die.  I know I'm not causing their death, and nothing I'm thinking or wishing will make any difference to what happens to the donor, but it is sort of an odd thing to be hoping for.   I've been in this spot before.  My mother died waiting on the transplant list; my aunt died waiting to get on the list.  (Her doctors didn't think she was sick enough to need to be on yet. . .)  I guess being there for their deaths has made me a bit cynical about my own odds.  Because of that, I try not to spend too much time thinking about it.  I know that the reality of the situation is that I'm likely to still be on dialysis years from now, so there's no point in wasting a lot of time daydreaming about getting a transplant.  I've got to deal with the situation I'm in, not the one I want to be in.

[angela515]

While I waited on the list for 3 years, I thought nothing about it, except every Dec 6th was one more year longer I have waited and means I had a better chance of getting the call the upcoming year. When I received the call, I was in the bath... and I was shocked i got a call.... I then rushed and got things ready and headed out the door... calling everyone from my cell on the way to the hospital.. I just remember being so excited for a new life... which over came any fear for the actual surgery itself.

[Sluff]

Thanks for sharing your thoughts it is sort of an intimate part of your life because your emotions are running a muck but I figured this would provoke thought and help those that are waiting get somewhat of an idea, that the way they may be feeling is normal.

[goofynina]

While I waited on the list for 3 years, I thought nothing about it, except every Dec 6th was one more year longer I have waited and means I had a better chance of getting the call the upcoming year. When I received the call, I was in the bath... and I was shocked i got a call.... I then rushed and got things ready and headed out the door... calling everyone from my cell on the way to the hospital.. I just remember being so excited for a new life... which over came any fear for the actual surgery itself.

What i find awesome about your experience is that as excited as you were and all the emotions you were going through, you stopped and posted it for all us to know, i admire that, shows how much you think of us,  Good Goin' Girlfriend!!!   Thanks for being such a loyal member

[Sluff]

What i find awesome about your experience is that as excited as you were and all the emotions you were going through, you stopped and posted it for all us to know, i admire that, shows how much you think of us,  Good Goin' Girlfriend!!!   Thanks for being such a loyal member

Yeah ... what she says..  

[carolyn77531]

i remerber the emotions when i got that call..i still get goosebumps..it will be a day i will never forget,,i was excited....i cried..i thought man, this is a whole new life that Jeeisca..will be a normal kid without machines, tubes and so many meds...what got me, was the day i met the donor mom..i felt like i have known Amanda all my life....even tho i have never met her.....words alone cant describe what i felt that day

[BigSky]

However when my phone rings i wonder which bill it is,  (i am not listed)

Tell them you thank them for calling and you are now putting their name into the hat and if they are the lucky one to be drawn they will get the lucky 10 dollar payment that month.

[paris]

At first, I thought about it all the time. Had my little bag in the closet ready. I NEVER think about it now.  With PRA of 100% it isn't going to happen, so now, I just live. For me, not thinking about it works best.

[livecam]

Good questions Sluff. I think there is a good bit of stress involved in getting listed and in waiting for the call to come.  In my case I found the listing process much more stressful than the wait on the list just because the fact is that without listing there is no transplant.  There are so many hoops to jump through in the listing process and you have to get through all of them in order to make it to the finish line.

While on the list all kinds of thoughts went through my mind.  The listing and waiting process are kept very secretive by UNOS and transplant centers.  You really don't know other than in a very basic way where you stand at any given time.  Having very little information to go on creates a tremendous amount of stress and uncertainty in itself.  Without knowing where you are a person must basically be ready for major surgery at all times.  So even though we know the wait is likely to be years, we must also be ready to go today if the call comes.  That means not being sick or having any other problems that might prevent that surgery on a moment's notice.

So what was I thinking?  There was that basic thought that my life would be completely normalized save for that one little issue of needing a new kidney.  I was always wondering when the last dialysis treatment would be (how much more of that shit would have to happen).  I also kind of expected to be away somewhere on a trip when the call came and have to make some special arrangement to get back to the transplant center quickly.

I was worried too.  Would I croak on dialysis before the call ever came? Would I live through the surgery?  Would the kidney function or might it reject immediately as some do?  What was the whole transplant experience going to be like?  Was it going to happen in Los Angeles or San Diego?

To answer your last question yes I thought about backing out in the last minutes.  I was scared shitless of the surgery and remember saying to my wife in the prep room right outside the OR that we didn't have to do this and that dialysis could be ok.  As usual for that surgery I refused all sedatives so I was completely with it until just after the mask went on in the OR.

So the whole thing along with dialysis is a huge burden even in the best of cases.  Lets be honest here, the whole thing is a mental and physical train wreck. It is what we call in my business a pig f..k. I would not want to have to repeat any of this again.

[Wattle]

Livecam.. I think you can see inside my head!     Sitting on the waiting list is like being in an emotional train wreck. For the first year it consumed my waking hours. Every question you mentioned I have over analyzed. Rejection being my biggest emotional hurdle. I still live in fear of having the surgery and waking to find myself still on dialysis. I am still really worried.

I don't have a bag packed anymore. There are plenty of people who will buy me some pjs and a tooth brush. I don't need the stress of a bag sitting there waiting for years. Yes.. I want a transplant but right now I have to LIVE on dialysis. I don't want to just sit here waiting for my new life to start. I want to live and do a little dialysis on the side. Some days are harder than others.

All the success transplant stories on IHD are what keeps me sane. 

[livecam]

Wattle...I was answering Sluff's questions honestly and I think many other patients who are waiting or trying to get listed think the same things.

Now just briefly lets talk about what really happened.  First of all I woke up.  I remember clearly later that day listening to my transplant surgeon complain to another doc about medical conditions in California and saying that he was leaving for a new job in Arkansas.  I recovered uneventfully with no complications.  The new kidney has been working perfectly for 5 years and 5 months.  I got my life back completely.  Everthing is as it was before any of this nightmare ever happened.

There is good with the bad.  Try to look forward to the end of dialysis and a great life again because it is going to happen.  That call could come at any time.  You could be on a cruise ship sipping a mai tai or laying on a warm beach soon thereafter.

Look forward to your new life.

All you gotta do then is remember to take your meds twice a day.  Pretty simple huh? 

[angela515]

All you gotta do then is remember to take your meds twice a day.  Pretty simple huh? 

Three times a day for me



EDITED:  Fixed icon error - Goofynina/Admin.

[Rerun]

I'm actually thinking of removing myself from the list. 

I had to quit my job and go on disability.  Because it was a Federal job I still have medical benefits.  If I get a transplant I get kicked off disability in 1 year.  That means no money and no benefits.  What the hell are they thinking?  Who is going to hire me and give me benefits? 

My first time on the list I was only 25 and didn't quit my job (didn't know I could) and got my transplant and didn't skip a beat for 17 years. 

Now my options are very limited. 

If the doctor could guarantee me that I could stay on disability until I was ready and willing to go back to work and actually HAD a job with benefits..... then I'd be ready for another transplant.

So they have backed me in a corner.  Pay a half a million a year to keep me on dialysis or give me transplant and I lose everything.