Carina: FSGS /future tranplants -thoughts (long)

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Carina: FSGS /future tranplants -thoughts (long)

Postby BrendaM » Tue Jun 15, 2004 11:56 am

Hi again Carina
we spoke 12 months ago when my both children were diagnosed with FSGS / IgaN and you were a great help. I am so sorry to hear Andreas has reached the point of transplant talks and have some ideas which may suggest a non-related donor may be the best solution. Long so please bear with me.

In the last year, our family has entered two research programmes with US universities. Duke Univ in Durham, NC is investigating the genetic basis of FSGS in families and are interested in our family because of the double kidney problems. They have already identified some genes which are linked to FSGS. During the completion of a family history for Duke I realised that many members on the female side had diabetes, high cholesterol levels, weight problems (thought by some to be related to diabetes type problems), and urinary problems; a cousin had had a kidney disease when young.

Last month (at a family get together :-) ) my cousin who is a nurse took blood and urine samples from 20 family members to use as controls in the Duke research. It is my feeling that research like this will show in the future that there is a genetic weakness within families for kidney disease and related problems which may be triggered by factors perhaps environmental (we are concerned about our water supply and only drink Evian) or perhaps individual health when put under stress.

The point of all this is that I had been prepared to donate a kidney to my children at some time in the future but now would seriously consider if I should rule myself out because I may have this inherited genetic weakness which might start a disease up again in the donated kidney.

Although the tissue match may be good between family members, an unrelated kidney may be the best option for Andreas.

I understand in the US they have a scheme to 'swop donors' ie I would give a kidney to another patient if their relative gave one to my child. It seems very sensible to me, could this be something to discuss with your doctors?

My thoughts are with you
BrendaM in the UK
Posts: 30
Joined: Mon Apr 26, 2004 8:57 am
Location: Cotswolds, UK

late reply!

Postby carinab » Thu Aug 05, 2004 8:43 pm

Hi Brenda + others,
Things with Andreas är about the same, except we are doing the prednisolon limbo to try and get rid of the protein in urin.
Also the doc has just added Cellcept to his list of meds. (pred., cozaar, epo and cyclosporin)
Today i told her I do not want him to be on dialysis waiting for a kidney and that i want to donate. They took a bunch of blood from both andreas + me. Thankfully we are both the same blood group O+!
She said she thought that would be ok because she feels that he has a "non-genetic" type of FSGS.
What she did say was that with FSGS he has to go into complete renal failure before a transpland. This is because it lessens the risk of the FSGS continuing.
We also have trouble now because at 26% function he is not growing + due to prednisolon. The endriconologist wants to put in growth hormone injections but not together with high dose cortisone. Also we have huge acne problems and the docs are talking about trying tetracyclin.
Sorry this seems so confused.................I am so fed up with this kidney stuff..............all the meds all the docs trying to work my own job take care of the rest of the family......
thanks for being there! / Carina in Sweden
Posts: 3
Joined: Tue May 25, 2004 8:11 pm
Location: Sweden

FSGS / Carina

Postby BrendaM » Fri Aug 06, 2004 8:45 am

Hi Carina
you and Adreas are certainly having a tough time, my toughts are with you. Son Robin also failed to grow when on Pred - secretly very upset especially when younger sister and school friends grew taller But thankfully he has shot up since stopping pred last Dec (hadn't worked).

We see specialist on Monday 9th. He is really well externally at moment (thank goodness) but internally still high protein leakage .

I can't understand why doctors want to see patients go into failure before transpant - it is against our instincts as the sufferers.
There are others here thinking of you, keep strong
Posts: 30
Joined: Mon Apr 26, 2004 8:57 am
Location: Cotswolds, UK

Postby Julie » Sun Aug 08, 2004 1:55 pm

Snipped: I can't understand why doctors want to see patients go into failure before transpant - it is against our instincts as the sufferers.

In reply to your comment above Brenda, and from what I understand from talking to David's nephrologist about why they want this to be the case with FSGS in particular, I understand it is because there is less chance of the FSGS returning in a new transplanted kidney if the FSGS in the native kidneys has been allowed to run its full course. Although he did say that when he attended the annual Nephrologists Conference in San Diego last summer that the US research showed that this wasn't necessarily the case any more, albeit it had been a school of thought for a few years prior.

Of course, we all know (as patients and carers) that they haven't really got a clue as to why some people have FSGS for years and years, often going into remission and suffer only minimal loss of kidney function and why some people progress to full blown renal failure in a matter of months (as in David's case), and neither do they know how to "switch it off" or "slow it down" as is testimonied by so many people who post on this board, some who do respond to pred, some who don't.

David has been on PD for 9 months now and has been on the transplant list for 6 months, although has been suspended for the last month, firstly for 2 weeks because he had an infection, and then for 2 weeks because we have been away on holiday. I am going to ring the transplant co-ordinator tomorrow just to make sure he is back relisted again as we got back from France yesterday.

Take care.

Lots of love,


Postby nycpetit » Mon Aug 09, 2004 7:18 pm

I find it very odd that they feel they should wait for the FSGS to run it's course in the native kidneys before transplantation. In the States this idea is not followed, at least to my knowledge. I also have FSGS and I will be transplanted this Thursday. I am not on dialysis, and have about 11% function left at this time. My doctors, and I've had many, all feel that in their experience it's best to transplant prior to dialysis, and complete failure, as a way in which to keep the patient's quality of life highest, expenses down, and the health of the patient at it's optimum for transplantion. Are you sure there is no way you could do the surgery before the imminent failure?

If you were ever able to come to the States, NYC, I could hook you with some doctors here that specialize in FSGS and a nephrologist (Alonzo Mourning's nephrologist) that specializes in this disease. He is at New York Presbyterian Hospital, and Rogosin Institute, which is doing my surgery specializes in kidney transplantation on a steroid-free protocol, with a pedatiatric unit as well. Please let me know and I could give you the web address, and someone to call. They do take patients from abroad.

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Location: Miami Beach

FSGS......the kidney disease from hell?(long)

Postby carinab » Mon Aug 09, 2004 7:51 pm

Hi all,

Thanks for all your input! I need it, we are in despair here!!

Our doctor here in Sweden (who is originally from the USA) is the only pediatric nephrologist for the whole of southern Sweden and she takes patients only 1½ days a week the rest of the time she researches. She is ok and has been following Andreas for years, but she is not the kind of doc I can call every week and sob to! Our local pediatrician has followed Andreas for 13 years (since he got the FSGS at age 2) and she is great, always has the shoulder to sob on, but can't help us with the complex neph stuff.

Of course I would love to be able to take Andreas all over the world to other nephs etc... but we would never manage the cost.
Here in Sweden Andreas is covered by the national health system. All medical care is free (up to age 18 and after that you pay maximum $250 a year.) For the meds you pay maximim $200 per year.
I know my dad who was from the US (died 3 years ago) checked with all his medical buddies in the US and all said.....thank your lucky stars they live in Sweden!

Our situation now is that Andreas is 15 years old, weighs 38 kg and is 158 cm tall, last kidney function test april 2004 showed 26%, down from 38% the year before. Good bp.

Until now life has been OK.....but the last year has been bad, school is a problem and home schooling is not an alternative here. He is very upset, and wants to give up. Upset about his lack of growth ( they were going to start growth hormone therapy 16 aug, but now with the cortisone it is not possible.) Upset with the steroid induced achne, they might give him tetracyclin for this.

He is on Sandimmun Neoral 65 mg x 2, Cozaar 12,5 mg X 1, EPO shot every other week, and now they just ( 5 Aug.) added Cellcept 500mg X 2.
We had just finished high dose cortisone treatment for a relaps of protien in the urine and had just tapered out.......suddenly the protein comes back + 3 on the sticks. So here we go again with the prednisolon high dose.

It has been 3 days now and we are at + 2 BUT the kid is in terrible pain stomach and leg pain. He takes 1 Lanzo (=Losec) a day but nothing seems to help. We are trying yoghourt etc... nothing works. I'm at my wit's end and don't know how to help him with the pain. IF YOU HAVE ANY IDEAS PLEASE HELP!

I am very worried about all these drugs, the kid is a walking pharmacy....what about his liver?? The doc just says we have no choice.
We can't transplant because he has too much kidney function, yet she says we must strive to keep the function as much as possible. And the growth is a problem because he can't have the growth hormone therapy after a transplant because of the steroids. (No mention of steroid free protocol here.)

thanks for reading, any help will be greatly appreciated.
Carina Bruzelius
Posts: 3
Joined: Tue May 25, 2004 8:11 pm
Location: Sweden


Postby BrendaM » Wed Aug 11, 2004 4:18 pm

[quote] am very worried about all these drugs, the kid is a walking pharmacy....what about his liver?? The doc just says we have no choice. [/quote]

I also worry about the drug cocktail and thier liver function. I hesitate to say it but have you considered alternative medicine? It means another pill but there are some which are well known to protect liver function, milk thistle etc. I have some for Robin but at present (touch wood) he is doing well so I am reluctant to add to his pill list.

It would be best to consult a local herbalist or homeopath for a specific treatment for Andreas.

Best wishes
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Joined: Mon Apr 26, 2004 8:57 am
Location: Cotswolds, UK

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