introduction from so cal

[lbtom]

I'm returning to this site after about a 4 year absence. Have a family history of polycystic kidneys and I went on dialysis in 2012.  I did receive a transplant in 2015 but it rejected after about a year.
I am back on hemo 3 days a week and loving every minute of it!! ( just kidding of course.)   I did have to have both kidneys removed before my transplant, so if anyone is facing this and has any questions let me know. Thanks !  Tom

[Paul]

Not sure if I should say "Hello" or "Welcome back" as I joined less than a year ago, so never knew you from before. So I'll just wave to you, that can mean either.

 

[cassandra]

Welcome back Ibtom


   


Take care, Cas

[Marilee]

Hi Tom! I'm a newcomer to this board and just wanted to say, "nice to meet you!"

[Charlie B53]

Welcome back but Sorry that you had to come back.

Only a year, that's terrible, especially after having your Hopes built so high.  Even with that nagging thought lingering in the back of your mind, wondering  "What if it fails?"  We never really imagine that it will.  Crushed, I'm sure.  I would be.

Most do not have their old kidneys removed, just have the new one stuffing inside the front.  So I imagine there is a tale here of why your Dr's decided yours needed to come out.  I'm sure they wouldn't take them just to take them, that it was necessary, or it wouldn't have been done.   That old "If it ain't broke...."   kinda thing.

Glad that In-Clinic is working for you, and we can expect to hear more from you.

Take Care,

Charlie B53

[Simon Dog]

PKD kidneys can become quite large and crowd the insides, necessitating removal.

[LorinnPKD]

Hey, welcome back!

I'm a fellow PKD'er on dialysis for almost two years now and staring down the barrel of a double nephrectomy for my very large kidneys, probably in the next year or two, so I'd love to pick your brain on that!  I still have some fluid function and potassium function remaining, but even that's decreasing lately in fun and exciting ways.

Did you have your kidneys removed to make room for the transplant, or significantly before?  How did you decide when it was time?

My transplant surgeon said that if I ever got a kidney, he'd just carve off a chunk of one of my current kidneys to make room, stuff the new one in, and then go back and take the rest out a few month later.   Of course he said it all in respectful medical terms but that's the idea.  But if my kidneys grow more, they'd take them out earlier.  I'll be on the list for a long time with my state and blood type so I'm buckled in for a while.

Please tell all!