Getting Close to Transplant

[BASSMAN]

My wife has completed all of her testing.  Today was the final test.  The Psychological evaluation.  Next is her consultation with the transplant surgeon.  Then the transplant team will have a pow wow and make the final decision and schedule the transplant.  The transplant coordinator believes that we will transplant in July or August. 

We are both nervous but committed to it.  We want to continue to live free of dialysis.  What I have read on here about dialysis scare the crap out of me.

I could last long enough to spare my wife the surgery and get a cadaver kidney.  The wait here is apx. 3 years.

I read on here about people staying in the 20% GFR range for many years and I wonder if I am rushing into this, but if we wait, anything could happen.  I have fluctuated between 18 and 20% GFR  for some time now.  Almost a year.  We are both healthy enough right now we expect to come through this with minimal complications.

Your thoughts?

[kellyt]

I was in that range for years.  When I transplanted my GFR was 7, and I had been at 7 for pretty much the entire year of 2008 (transplanted in Nov 2008).  I was not sick at 7, only tired.  I avoided dialysis, but my doctor had held a bed for me at the nocturnal clinic since Jan. 2008.  He only released it after we knew the transplant went well.

It would all depend on how you feel at 18-20, I guess.  Also, preemptive transplants are always best.  They are the "goal", as per my Nephrologist. 

[Sunny]

I say go for it.
Why wait till you are feeling absolutely lousy and might not have as good as an outcome since you are relatively healthy now.
Also, a living donor kidney can last 15-20 years, or more so why not enjoy that now and not 3 years from now. That way you can get on with the business of living again.
Your wife is wonderful to be your donor and she must love you very much.

[Jean]

100% in agreement with Sunny. Why wait if you dont have to? Go for it!!!

[edersham]

It is certainly your call (and your wifes) but I have to throw in my humble opinion. I was trying to get a pre-emptive transplant because I had potential donors 6 months before I reached 20% GFR.  I reached 20% in Oct. and began the tx process. I dropped to 9% by Jan. 1 and got to experience the joys of dialysis (in center hemo) untill Mar. 23 when I got my true friends kidney. My hat is off to those who maintain fairly active lives on dialysis but most of us feel like week old road kill between treatments and the sights you see there will break your heart. I cant help but resent the video that the dialysis center shows newbies of all the happy people doing their favoriite things between tratments and talking about how great they  feel. My advice is run as fast as you can to this transplant and thank your lucky stars if you get to skip the dialysis part

[BASSMAN]

Thank you all for your input.  We are going to do this.  I just really wanted some views on it from those that have been there. It still scares me but dialysis scares me more.   I am more scared for my wife.  Should my wife have any trouble with the surgery, I would be an emotional wreck.  How does one deal with that?

[kellyt]

I don't know how anyone would deal with that.  It is scary.  My donor went down for surgery at about 6:30 a.m. and I didn't go down until about 7:30 a.m. or so.  I was sitting up in bed facing the door when she actually was rolled by.  I had been in her room earlier.  She wasn't nervous at all, or at least didn't show it.  She was more upset that the fact that she had to to two enemas the day before and be on a clear liquid diet all day.  lol    As the recipient, I had a turkey and dressing lunch and a good dinner.  No enemas!  The donor has it worse in the beginning and they are the main attraction (as they should be). 

My only advice to you wife would be - follow the advice of the medical staff and doctor and take the time to relax and recover after surgery.  When they say don't drive for two weeks, don't drive.  When they say walk slowly, but walk, do it.  My donor felt really good and went home a day earlier than she really should have, she drove a day or two later, AND she walked on her treadmil.  She regrets ALL of that.  Be sure you two have lots of help.  I was sore and slow all through Nov. and about 1/2 of Dec.  Although I was up and doing stuff, I was careful and slow about doing it.   I'm super excited for you both!!   BTW, my donor (sis-in-law) is doing fantastic!!!  Would do it all again, so she says. 

[BASSMAN]

Cool!

That is very encouraging and thank you for the advice!  I will share it with my wife.  She is way stronger than I ever gave her credit for.  I know she has to be scared but she doesn't show it.  Neither of us has ever had a major surgery.  I had my tonsils out as a kid. a kidney biopsy and the fistula.  That's it for me.  She has never been put under.

[kellyt]

Transplant was the first time I had ever had surgery (other than two fistulas) and it was the first time ever under anesthesia.  I was sitting up when they wheeled me in and I saw the surgery auditorium, but that is really all I remember.  When I woke up about 2 p.m. they had some guy doing a sonogram on the new kidney and it hurt like crazy.  I still had the oxygen mask on and even though I was semi awake, I couldn't open my eyes.  But his pressing on me hurt.  After that I slowly came around.  I threw up twice that night, probably from anesthesia, as well as when they gave me some water through the straw I drank way too much.  I was super thirsty.  My donor walked up to the ICU (very slowly) that same night to visit and I had two other visitors that night, too.  I was in the ICU for the better half of the next day (surgery Wednesday a.m. and left ICU at 4 p.m. on Thursday).  They said I could stay another night in ICU, but I declined.  I wish I would have stayed another night.  Keep in mind, while you're in ICU you are not bothered by physical therapy and stuff.  Within the 1st hour of be being back in a regular room the people started showing up.  I had the Social Worker come by, Physical Therapy, the Chaplain, medical studnets,  blah, blah, blah.  I was exhausted.  I sent physical therapy and the Chaplain away (I felt bad about doing it, but I was just too tired to talk).
Take your own blanket, pillow and towels.  Same for your wife.

[edersham]

If statistics are your thing there are some reassuring ones out there. It is major surgery but Kidney donor surgery is considered 6 times safer than gall bladder surgery(3 deaths per 10,000 surgeries vs 18 per 10,000 for gall bladder) Also a 20 year study of 87,000 kidney donors showed that the donors tend to live longer than non-donors. It is speculated that this is because they are healthier to start with and take better care of thenselves afterward. Both of these studies can be found through google searches.

[okarol]

There are many stories from the Living Donors Online support forum - the section called "Experiences" is here http://www.livingdonorsonline.org/experiences/experiences.htm - in case your wife is interested. 

[cariad]

Good luck, Bassman. I just went through all of these fears myself with my live donor (also my spouse). My transplant was performed in such a way that I was told before I was even brought into the theatre that my husband's surgery went off perfectly.

What I wanted to do pretransplant, but my husband was resistant, was to talk frankly about the possibility of him being on dialysis and how he would handle that. He would become exasperated and say "I'm not going to end up on dialysis!" and in retrospect, I suppose it was rather like accosting a perfectly healthy person and demanding to know how they would cope with cancer, or heart disease, or one of these other perfectly possible conditions that they don't actually have. I guess we just have to trust that we can handle whatever happens, if it happens. It is not easy, though.

I'm sure everyone is sick to death of me bringing it up, but my original donor gave me a kidney in 1976, and he is still alive and fine.

[kellyt]

I'm not sick of hearing that, Cariad!   It's wonderful and it makes me feel good about the health of my donor.