Complex dicisions in houston

[zed]

Hi y'all,
Just got on here today at my doctor's suggestion, he thought it may be a good resource.   I'm a really smart guy and I've been dealing with ESRD in one form or another for 10 years.  I was lucky, I was able to get off of dialysis after just a few months back then but the last year has seen new health challenges.  I had renal acidosis last year and that knocked my kidney function down pretty low.   Now my doctors are wanting me to consider a transplant.
My health is good right now other than some low kidney function which is not interfering too much in my daily routine.  I have another big chronic health issue that's well managed at this point as well.  I'm doing lots of research of course and trying to weigh the risk/benefit ratio but there's nothing quite like experience.
I would like to know your experiences with transplants, good and bad.  I want to know about pain, recovery time, complications, emotional issues, medications, after care; in short, anything you guys think might help add to the big picture for me.
And as if I wasn't asking enough there's a moral issue of a 55 year old man with chronic health issues using a kidney that could go to a 20 year old kid somewhere.
This is all VERY new to me,  like this week, so I'm still trying to absorb the very word "transplant".

[Poppylicious]

Hi zed.  I'm at work so don't have time to respond to your queries, but I did want to give you a big fat  !

 

Poppylicious, Moderator

[MooseMom]

I'm about the same age as you are, and I had a transplant 18 months ago.  Maybe I can help you with some of your questions.  Before I do, though, would you mind telling us a bit more about your other big chronic health issue as that could well change my reply.

BTW, I was born and raised in Houston!

[Rerun]

Hi  Zed,

I'm so glad you joined us.  Give your doc a "shout out" for pushing you'all our way.   

Usually if there is a kidney up for grabs the kids are first.... then if they don't match your name will probably pop up.  So, that issue is taken care in the priority rules for Transplants.

Just want to welcome you here.  Go look at the Transplant section and read on....  Lots of stuff there.

They don't tell you that you are a good candidate for a transplant unless you are.

Rerun, Moderator    

[Shaks24]

Welcome Zed. My Neph and dialysis care team graciously referred me to our local transplant facility to go through their educational session on their kidney transplant program. It was about a 3 hour session. My inclination is to pass on it. I currently do PD and things are going well. Based on the presentation made to me, I see it as exchanging one set of problems for another set of  problems that include risks that I do not want to take. Also it felt to me like you kind of had to sell your soul to the program as far as certain aspects of living that I just am not ready to do. Everyone is different so this is just my point of view. I would highly suggest attending one of these sessions if it is available to you. It was very informative and the staff involved were very professional and candid in responding to my questions. I am 54 years old so we are close in age.

[cattlekid]

Welcome! 

I was on dialysis for a little over 2 years before I received my transplant this past April.  I am a little younger than you are, I turned 43 in September. 

According to my transplant center and all of my doctors, I am the poster child for transplant.  I had my transplant on a Tuesday, I was out of the hospital on Saturday.  I did have to stay at a local hotel for two extra days because my kidney didn't start fully functioning right away and they thought I might need a session or two of dialysis to give it a kick in the pants so to speak. They gave me some IV anti-rejection drugs for a couple of days after transplant and then on that Saturday night, boy did the kidney start working. 

I had minimal pain after the surgery and took very few pain meds in the hospital or afterwards.  I was granted eight weeks short term disability and went back to work half time for one week after that and then back on full time at the second week.  It did help that I have a desk job so it wasn't like I was going back to any heavy lifting or other physical activity other than running my mouth and typing.

As far as the meds, I was fortunate that all of the meds I have are generic and very reasonable in cost.  I have three anti-rejection meds:  prednisone, generic Myfortic and generic Prograf.  I started with three anti-infection meds:  Bactrim, the anti-thrush tablets and a third one whose name I don't recall.  Now that I am almost one year post transplant, the only anti-infection med I take is Bactrim and that will be done at the one-year mark. 

Side effects of the meds?  I am still losing my hair due to the Prograf.  I also had some hand tremors at the beginning that have gone away.  The blurry eyesight that I had from the higher starting dose of Prednisone also went away after I was tapered to my current dose of 5 mg per day.  Prednisone also makes you HUNGRY.  Between the Prednisone and the fact that my diet is no longer limited, I gained back the 20 lbs. I lost immediately after transplant and gained 10 more.  I am currently at the top end of what the transplant center wants me to weigh and I have to get my behind in gear to get some of this weight off.

Back to the diet.  You will be on the "pregnant lady" diet (termed by one of my preggo friends).  No lunchmeat or hotdogs unless heated to 165 degrees.  No sushi.  No buffets.  Basically, follow normal food safety practices with a little extra thrown in.  Your center will have their own guidelines.  I am also not allowed to have grapefruit or pomegranate because of the medication interactions. 

For me, because I have had really ZERO complications after my transplant (so far), I can't give you the downside.  About the worst that has happened to me is the weight gain and hair loss.  But those are small prices to pay for the benefit of being off dialysis.

Ask away with your questions!  I will honestly try to answer anything I can.

[MooseMom]

I echo what cattlekid has posted.  As a matter of fact, she and I were transplanted at the same hospital.  I was lucky enough to have had a pre-emptive transplant, ie, I never had to go on dialysis, but I was oh so close.  My mom was on dialysis for the last 5 years of her life, and watching her struggles while at the same time reading here on IHD about all of the difficulties of life on dialysis, I cannot imagine choosing dialysis over transplant unless there is a medically compelling reason.

I have not had any side effects from the meds that are difficult to live with.  Like cattlekid, I've lost a good bit of hair, but no one seems to notice but me.  I gained 10 pounds in the year post tx, but I lost most of it once my prednisone dosage was stabilized at 5mg.

If, after doing your research, consulting your medical team and then going through the pre-evaluation process you still feel that it is immoral for you to have a transplant, then that is your choice.  However, UNOS has proposed changing their allocation system so that the age of a cadaveric kidney will more closely match that of the recipient, so that might make you feel better.

I do sort of cringe at this particular meme, that a 20 year old is more "deserving" or is inherently more "valuable" to society.  While it certainly sucks to be a young person and have ESRD, most 20 year olds don't have the responsibilities that a 50 year old will have and will probably have no one counting on him/her to continue working to support a 20 year old who is in college.  We are in the sandwich generation.  Our kids are going to colleges that are getting more and more expensive and then, upon graduation, may not find employment so end up returning home for some time.  Our parents are becoming elderly and perhaps more dependent upon us.  ESRD is a catastrophe for a family, no matter which family member is the one who is diagnosed.

Is you CKD progressive?  Is your renal function declining?  If your doc thinks your function will continue to decline and that you could wind up on dialysis, start researching the side effects of long term dialysis and see how that sounds to you.  If your doc thinks your function will stabilize, you may not have to do anything at all.

[ToddB0130]

Welcome.

My transplant team includes support groups for both pre and post transplant patients.  As a pre transplant patient,  I didn't take advantage of the support group and wish I had (it was a DEFINITE a huge learning experience AFTER the transplant)

So I recommend you attend support groups if available.

Good luck