How sick do I need to be?

[paris]

My son had a doctor's appointment yesterday;the beginning of evaluation for donating his kidney. The doctor, a GP, told him that he was taught and he believes all patients must go thru dialysis before getting a transplant to really appreciate the new kidney. I have read similar statements on this forum and would love to hear peoples oppinions. The Question--how sick do I need to be?-- kidney function is near 10%,  my hemoglobin hovers between 8 and 9 even with bi-weekly shots of Arenesp and iron infusions. I throw up most of what I eat, have no energy,drag myself thru the day---etc.etc.   My neph and transplant surgeon both feel transplanting before dialysis is best, if possible.  Does a person have to have a heart attack before he can get by pass surgery so he will appreciate his heart working better?  I have worked very hard with diet, life changes, etc to extend the time when dialysis will start. I was told in the hospital that I would be on dialysis in 6 months. It is now 2 years later and my doctor gives my credit for doing everything I can and and following guidelines. It is a little frustrating because the doctor doesn't know me or my situation.  My son just looked at him and said "You don't know my Mom".   

[Sluff]

And I think every doctor should go through dialysis so they can appreaciate what all of you on dialysis go through.

[jbeany]

Someone should tell your doc that he needs live for a year on a poverty level salary so he can appreciate his $150,000 a year.

Don't let the idiots get you down!

Here's hoping your son's tests go well!

[Rerun]

I'm the one that has said people need to be on dialysis before appreciating a transplant.  But, in your case you have already gone through enough to test your compliance.  But, if you had received a transplant when you had 15% function you may take the "transplant thing" for granted.  Everything means more when you work for it or wait for it.

[angieskidney]

I'm with Rerun! I mean you have proven you would be compliant where as I was only 16 so of course I didn't appreciate my transplant even with 2 months on Peritoneal Dialysis (not Hemo at that time). But I blame not just myself with that as I didn't know the side effects of the medication and what teen aged girl wants to gain 32 lbs in 28 days due to the Prednisone?

I say do all your research and know what to expect. Then you can show them how informed you are and say you still want a transplant and DO know what to expect and that when it fails one day that you will eventually experience dialysis as no transplant lasts forever (unless you are 80 years old and that kidney lasts over 20 years ...  )

[paris]

Taking a kidney from your child is something I can't do easily.  It is a very hard gift to accept, so I need to do everything in my power to be ready for this. That includes being educated, informed, and gratefull. I don't want to put my son thru this, but he wants me to have this opportunity. It is then my responsibility to do everything I can do protect that new kidney. I take nothing in life lightly--especially something this big.  I don't think a person has to die and given cpr to be brought back to life to fully appreciate how lucky they are to be alive. Maybe some people, but I wake up everyday and am grateful I have one more chance to get it right.   So, if there are many people out there telling people that everyone should experience dialysis first, how many of these people will then not be willing to donate to their loved ones? 

[jbeany]

Angie, nobody appreciates the seriousness of a chronic illness as a teen.  We all think we're immortal at that age.  My own mother couldn't handle my diagnosis as a diabetic, so she decided that I was the one in charge of making all my own health decisions, and that I would be responsible for my diet and keeping my blood sugar under control.  I was 13.  By the time I reached twenty, and figured out how serious the complications could be, the damage to my kidneys, my eyes, and my nerves was already done.  All the compliance with my insulin protocols since then won't undo the damage.

I find it hard to imagine any grown adult failing to appreciate a kidney transplant, with or without dialysis.  Either someone you love has gone through major surgery for you, or some total stranger took the time in the middle of the worst possible moment of their lives to agree to donate the organs of someone they love.  I don't think you need to spend endless hours hooked up to a machine, experiencing side effects to appreciate what's been done by the donors.

[BigSky]

Not sure why you would care what the GP has to say on the matter.  As to doctors the only ones who should have your attention are your nephrologist and the transplant surgeon. 

[paris]

Thanks everyone, for your replies.  It helps to hear your thoughts.  And Big Sky, you are right.  Shouldn't let one persons opinion matter---and he isn't worth stressing about.   To make me feel better, I bought new pajamas. Nothing like a little shopping therapy!    Thanks again