Recipient - Starting Dialysis Today

[Jewels]

Depressing news - my sister is starting dialysis today, 18 months after I donated my kidney to her.  She has FSGS and unfortunately it started attacking her new kidney pretty soon after transplant.  She has also been placed back on the transplant list, although sadly, I am skeptical the same thing wouldn't keep happening.  I am not sure I would even advocate another living donor in her case - would it be worth the risk if success is not likely?

She is going through training to be able to do home dialysis.  I feel helpless and sad.  I live across the country so can't be there to help.  She sounds angry and depressed about the outcome (not at me of course, just in general.)

Not the way we were hoping to start the New Year, but we are lucky to have life saving treatment like dialysis available.

Happy New Year to all of you!
Julie

[dodger]

Hi Jewels, It is sooooo sad about your sister.  The disease she has is a tough one.  There is not guarentee how long any kidney will last for her until they can stop the reason for the attack on the kidney. 

My niece, my transplant recipeint, has IgA neuropathy, her first donated kidney lasted 9 years, I hope mine will give her the same good service.  She is living life to the fullest in time she has.  She will also be faced with the possiblity of dialysis in the future.

Your sister now has to contend with the disease and the antibodies she buildt up with the first transplant so it may be harder to find a match as well, or the medication expense might be very high as well.  Medicare only covers the cost of medications for the first 3 years, then it is on the recipients insurance and ability to make the co-pay.

I am a member of I hate dialysis, a website that dicusses real life issues of dialysis.  These people live it everyday, very eye opening.  You sister might like to sign on there for help or just to vent and have a place she can talk to people that really understand.  Most of the population don't have a clue what dialysis people go through, no way to live but that is just it, as least they can live.

You gave her a 1 1/2 she didn't have before, that was a wonderful thing you did.  Please keep coming here and posting.  If you need support or have a question.  Stay in touch, there is a great bunch of people here.  Best wishes.
 

[tjhurley]

Julie,

 I am so sorry this has happened to your family. Your sister must be devastated by the loss. You are both in my thoughts during this difficult time.

One of the lesser known problems with kidney diseases is that often there is no predictability. I think the unpredictability plays a big part in the isolation kidney disease families feel. There are so many kidney diseases and many of them can cause problems in many different ways. Add the unknown diseases into the mix and you begin to realize that kidney diseases remain a large mystery in the medical world.

Outsiders don't realize it never ends, there is always something coming up, the best we can hope for is long breaks between new problems.

I feel badly for your sister. Her kidney disease story has taken an unpleasant turn.  I wish she had had a longer time with the kidney working.

I don't mean to sound dismal, hits like this come hard, please take care, Janet

Donor, wife of a donor, mom of two recipients.

[Orchidlady]

So very sorry to hear this. It must be tough for her, and tough for you as well being so far away from each other.  Hopefully the home dialysis (do you know if she is doing peritoneal or home hemo?) will help your sister to feel more normal and be better able to cope. Kidney disease is a thorn that just never seems to go away.

Prayers go out to you both. Thank you, Julie, for being a good sister and giving of yourself to help another.

[sherri]

Jewels,

So sorry to hear the sad news. So difficult when we have such great expectations. Glad to hear your sister is taking advantage of home dialysis. There are a few choices out there now, hemodialysis, peritoneal dialysis, doing nocturnal dialysis which all allow more control over one's schedule. I'm sure knowing how much you are thinking about her even though you can't be near her, makes her feel loved and supported during this difficult time. You gave her a wonderful gift. Do something kind for yourself today.

Wish you and your family all the best.Keep us posted on your family's progress.

sherri