FSGS & future transplant LONG!!

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FSGS & future transplant LONG!!

Postby carinab » Tue May 25, 2004 8:29 pm

Hi all,

Background: My son Andreas, now nearly 15. Nephrotic Syndrome at age 2, later diagnosis changed to FSGS. 2 biopsys. Has been on Cyclosporin (sandimunn neoral) the last 12 years. Has protien leakage attacks about 2 times a year, treated with highdose cortison, takes about 2 months in all and then we taper the cortison till the next time.Creatinin and Urea are not great but not at dialysis level either.
He is about 155cm tall and weighs 38 kg.
He has blood type O
Kidney function is now 26%. Was 44 % two years ago.

The question: The neph doc says that now we must start planning for a transplant. When? she does not know maybe a year maybe 2.
Anyhow she has asked us to decide if we want to go with a live donor transpland or a kidney from a dead person (don't know how to term this.)
She explained the pros and cons etc... and that FSGS has a tendency to continue in transplanted kidney. She also made it clear that he would need more than one kidney in his lifetime.

We don't have a lot of relatives.
Of course, I'm ready to give my kidney to my son, but the doc sort of said "hold your horses" your kidney will be needed futher down the line.
My mom (grandma) is 64 years old and not so keen on being a donor.
The doc said a related donor is usually a better match, but if there is a genetic aspect a necrokidney could be better. But there is a time factor involved with that.

Here in Sweden she said it could take anything from one week to 1 year once on the list.
And he cannot be put on the list until he is in ESRF and on dialysis.
He wants nothing to do with dialysis and is fed up with this whole thing. As we all are!

So....I am very unsure of what to choose. As far as I understood we had to choose one or the other, not both.
Greatful for any input.

Carina in Sweden
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ARG..the system

Postby nycpetit » Wed May 26, 2004 3:12 am

Here in the States I think it depends..since my doc will do whatever he can NOT to get you on dialysis first..he prefers to transplant the patient before reaching dialysis stages....and in the end it is usually the best way to go....if you are aiming for a transplant.

Your doctor may or may not be right about the FSGS...in some cases, if the donor was young enough..it might not yet show that they have FSGS...so in some cases going from the start with a non-related living donor is not an issue. I have never heard of having to choose between going on the list or aiming for a cadeveric (dead person..the word you couldn't think of) kidney....Why can you not be listed for a cadeveric, and then also be testing possible live donors? Ask your doctor this....it could be a very long time for a cadeveric kidney.

I also have FSGS..I am glad that the cyclo worked for so long for you guys...we tried steroids for me..I also have interstitial nephritis..and the steroids did not work..I lose protein constantly..about 15 grams a day..about 8 a day on high dose steroids....but I digress.....

I also have very few possibilities for donors...my mother is the wrong blood type, my parents never married..and only recently did my biological father tell his relatives that he has a child..ME! So that side was out..and my grandparents are too old, or not living..and my cousins, aunts, uncles...etc..all ignored the emails and phone calls I made....they can talk about the holidays and meals..but not about LIFE... :)

So...my point is..why are you not the right person for your son? Do you have a compatible blood type..are you healthy? Your age? Why would you need it later on down the road? I would think now would be a better time for you to donate than later..in the event that your son needs another kidney a few years down the road..you may be too old then....if that makes sense.

You must not get discouraged yet...think of all people, teachers, neighbors..the ones that seem most unlikely..like a cousin of my mother's whom I have met once in my life who has gone for testing..yet the people I grew up with have not responded at all...there are things out there that work in mysterious ways...it takes some time to think about it..as you go about your day...you think of someone else to ask...make mass emails to everyone you know..you never know who you may strike a chord in....

And finally IF you are at all not pleased with the doctor..change...and find someone who is willing to do both listing and donor testing...and who will work with you to possible avoid dialysis prior to transplanting...

I am not sure if I answered all your questions..and I realize things may operate differently in Sweden..but they are just my ideas....

most of all stay strong..and good luck!!

Natalie
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Postby JMan » Wed May 26, 2004 11:13 am

Hi ..

you need to be clear of your options before you decide..

Here in the UK it is possible to be 'written up' (for the donor to have all the tests etc) for a live donation and then accept a cadaver (from a dead person) kidney. This happened to me. I accepted a cadaver the day before I was due to get my dad's kidney.

There are 2 schools of thought on dialysis one is to 'pre-empt' the need for dialysis and transplant /dialyse before the patient desperately needs dialysis. The other is to await ESRF and then put the patient onto dialysis.

There is an element of cost involved. Once we patients reach the ESRF stage (and need dialysis) we cost the most. prior to that or with a transplant we cost a LOT less.

I would suggest that you might..

Speak with your son's doctor to be clear about him being on the list for a cadaver whilst ALSO being worked up for a live donation.

Speak with your mother more.. I can understand her and there is risk with any operation but donation has progressed a lot in the last 10 years.

Also what does Andreas think?

Hope this helps..
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