Hey there all. New member intro

[Naynay99]

Hi.  I'm NayNay.  I have a cadaver kidney transplant that I got in 1989 at the age of 13, after doing 5-6 months of PD dialysis.   I was diagnosed with acute kidney failure at age 12; the doctors never did figure out what the cause was, but I imagine it is genetic as my sister ended up needing a kidney tx when in her 20s. 

Anyway, I obviously got a good kidney match as it has lasted for almost 29 years.  I have had my donor kidney all of my teenage and adult life.  Anyway my labs have not been that great the last few years, my kidney function has been slowly declining.  My nephrologist has done a lot to get all of the life out of my kidney as possible and i figured I still had a year or two before things turned to shat.  But at my last doctor appt a few weeks ago he referred me to a local transplant clinic to set up an evaluation appointment.   I think my GFR is like 21, so he said it's a good time to start the process.  Anyway, since then I have been freaking out.  I have lived my whole life with the threat of kidney failure, but have been very lucky.   

I credit my tx for allowing me to have a normal life growing up, going to college, working, traveling all over, etc.   But I have not gotten by completely unscathed.  I think the experience of being sick was probably pretty traumatic to my kid brain, and both my therapist and psychiatrist think that my anyirejection medications are at least partly to blame for some pretty bad depressive episodes I have had to deal with over the years, since age 24 to present.  Still, I know I am lucky and secretly wonder if I even have the right to be pissed off and scared now, or if I am deserving of possibly getting a second transplant when some people haven't even gotten their first transplant yet. 

 I'm nervous about the appointment and feel sick over the idea of having to restart dialysis.  Reading statistics on waiting times and dialysis survival rates have scared the crap out of me.   I have no one to talk to about this.  Not many people even know i had a tx; after having no control over who knew all of my personal medical details as a kid, as an adult I highly value my privacy.   My best friends dad is going thru kidney failure now and based on her reactions to it I don't feel like I can talk to her about this right now. And I don't want to worry my mom until I absolutely have to.   Anyway glad to be here and hope to learna lot.   Take it easy.

[Paul]

 
Hello NayNay, welcome to the site.

and secretly wonder.....if I am deserving of possibly getting a second transplant when some people haven't even gotten their first transplant yet.

Never think like that, never. If you are worried, think on this: The transplant team spend a lot of time and put in a lot of thought over who to give each kidney to. If you were not the most deserving person on their list, then they would not have offered it to you. So when the time comes for your next transplant, do not worry about this. You will be deserving of that transplant, if you weren't, you would not be there.

I have no one to talk to about this.........I highly value my privacy.

If you want to talk, we are here. If you want to ask questions, we will answer them. People here are a friendly lot and a helpful lot. But we also understand that there are some people who have things they want to keep to themselves. So if you have things you want to keep private, we will understand, we will not pry. How much you tell us is up to you.

[Naynay99]

Hey Paul. Thanks for the welcome. 

[kristina]

Hello Naynay and welcome to IHD.
I can comprehend your dread of dialysis and I do hope your kidney still gives you lots of time before that.
Nevertheless, dialysis-machines have become much more agreeable these days. I have feared and dreaded dialysis for over 43 years and when the time for it came, I was pleasantly surprised, how well I get on with dialysis. Mind you, I adhere to my liquid-limits and my easy-digestible vegetarian diet, but i am alive and can do things, plan things and that is all that matters.
Welcome again and hopefully your kidney gives you lots of time before you have to think about dialysis or another transplant.
Best wishes and good luck from Kristina.

[Naynay99]

Hey Kristina.  Thanks.  Yeah I hope my kidney still gives me a bit more time before I have to seriously think about going on dialysis.  That’s good to know that dialysis is more tolerable than you anticipated.   I think I am still traumatized from my memories of my time on dialysis 29 years ago, though I don’t remember it all that well.   Anyway thanks for the welcome.

[cassandra]

Welcome to the site Naynay99


   


Take care, Cas

[Vt Big Rig]

Welcome to the site.

[MooseMom]

Oh, hell yeah, you have every right to be pissed off and scared.  Who wouldn't be?

I really don't think the doctors think about who "deserves" a new organ.  Thinking along those lines and making those kinds of calls is just too much like hard work.  They just look at labs and test results.  And the money men just want to make sure your insurance will pay them.

[Charlie B53]

Welcome to our IHD 'Family'.

Sorry to learn of your tx failing but 29 years, WOW!  Fortunately dialysis has improved a lot in that time. Sad there is still the need for needles.  I really loved my perma-cath but my fistula is working somewhat so the Nurses have started 'poking' me and my cath is going to have to be pulled out in the near future.

Keep posting to let us know how you are doing with the transition to dialysis again.  Maybe tell us how much it seems different than what you remember.  Hopefully it will be much easier than it used to be for you.

Take Care,

Charlie B53

[Simon Dog]

I really don't think the doctors think about who "deserves" a new organ.  Thinking along those lines and making those kinds of calls is just too much like hard work.  They just look at labs and test results.  And the money men just want to make sure your insurance will pay them.

Here in Boston, there are at least a half dozen shops that install kidneys that get them from the same donor pool.  The doc who calls you wants you to take the kidney, since a decline puts it back in the pool and chances are another cutter is going to get the part.