Different types of FSGS?

Someone posted the definition of FSGS and it got me looking so I went and found the types. I was told I had "Tip Lesion FSGS" and all that came into my picture was the tip of the kidney was scarred. So I found this info for those of you who were not sure exactly what type:

Focal segmental glomerulosclerosis (FSGS) has many diverse pathologic presentations. In an important new study, Thomas et al. now provide an excellent clinical correlation between the pathologic description and the clinical outcome of patients with FSGS. They studied forms of FSGS previously grouped into several types: cellular, collapsing, tip lesion, perihilar, and not readily classifiable. Collapsing FSGS was more likely to affect younger and black patients. Black race was uncommon in the tip variant. Patients who had collapsing and tip variants had higher proteinuria and lower serum albumin than patients with the other types of FSGS. Better renal function and less severe tubulointerstitial injury at histology were observed in patients with the tip variant. These patients more often achieved complete remission and were more likely to receive steroids than the patients with other types of FSGS. After a median follow-up of 1.8 years, 23% of all patients were on dialysis, and 28% had renal failure. Collapsing FSGS had the worst renal survival compared with other FSGS variants.

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from:
http://www.nature.com/ki/journal/v69/n5/full/5000271a.html

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By szaluski
Posted July 9, 2008 at 7:55 pm

My daughter just had another biopsey and they said she has 80% blockage up from 75%. I did not go my husband went . I asked him to ask what kind of FSGS she has after reading your posting. She, the doctor said Strong Memorial Hospital where they sent it didn't say. I cannot explain what I feel right now. Is it time for a new doctor?

By mamagemini
Posted July 9, 2008 at 8:24 pm

Call the place where it went. Ask questions!! Never be afraid - you pay them they don't pay you!
A blockage doesnt sound like FSGS - but it could be the scarring is blocking I don't know. So you definitely should call and ask! Jut explain it is your baby girl and you are so worried that it is not good so please oh please tell me what is going on!! Someone will listen and help. If not then call a patient advocate to get answers. Always get copies of whatever is done too. Any records or labs!!
Good luck hon!!

By fsgsblahs
Posted July 10, 2008 at 11:41 am

szaluski -

Call your neph, or whoever ordered the biopsy, and request a copy of the report. It will state where the pathology was done on it. Unfortunately, they will not address patient questions/ concerns (I tried it), but your primary should be able to call and get answers. If this does not work, then I would definitely seek a second opinion....matter of fact I am sure that you could just call the doctor who saw your daughter recently and ask this question. I would also ask how this 'blockage' relates to FSGS.

By fsgsblahs
Posted July 10, 2008 at 11:47 am

szaluski -

Forgot to mention....I would request copies of everything on your daughter...her entire file at the nephrologist, including labs, notes, and especially the biopsy report. It is also helpful if they have copies of the actual slides....get a copy of those as well. I would also get copies of everything else she has been tested for since they have suspected kidney disease.

The more documentation you keep on hand the better. I have a complete protfolio for the past year and it enables me to refer myself, because they do not have to wait for the doctors to get everything to them. I also invested in a fax machine for my home, which didn't cost a lot, but has been a life saver for time and money!

By Jenny1
Posted July 17, 2008 at 2:38 pm

So, here is a question that I'm not sure anyone will have the answer to, but I have a copy of my biopsy report and all is says is FSGS. Nothing about what type. Of course, this report is from 1986, and the doctor who ordered it is no longer around. Does anyone know if there's a way of finding out what type of FSGS I have? Or do you think I would have to have another biopsy to figure it out? I guess this is really a question for my doc. I was just curious. I'm writing it down to ask her about it right now! I wonder if the hopsital that did the biopsy would still have the info....
I'm learning so much lately. One thing I've recently learned is that after the diagnosis of FSGS, they told my mom I wouldn't live past age 21. Now everything has changed and I have outlived that prediction. I just want to know now if I have a variant that normally ends in ESRD or one that doesn't. Would help prepare me a bit more...

By fsgsblahs
Posted July 17, 2008 at 6:27 pm

Your neph could call which ever facility did the pathology on the tissue and request them to either re-check the slides or send them to your local teaching hospital (or to them) and have them take a look. They aren't supposed to ever get rid of your tissue slides...at least that is what they told my mom about her liver biopsies, but I am not sure how long they last. It is also my understanding that you can start with one variant and change to the NOS one, which is what I have.

I found this site that gives pathologist a guideline to determine which variant you have. You would have to ask your doc what info he has on his notes. I would copy this page and take it in to your neph on your next appt.

http://www.uscap.org/newindex.htm?94th/companion18h2.htm

I am sure any qualified pathologist could tell which type you have. I am not sure if they had distinguished the 5 types in '86. I believe it was founded by Columbia University, but forgot which year that happened....I just read that recently.

By Mrs_M
Posted July 20, 2008 at 3:13 pm

Thanks for sharing that...always interesting to read more about FSGS. Still quite cautious on believing everything I read online though...

JENNY1 - My husbands lab report from the biopsy read ADVANCED FSGS. When I asked the Neph, he just said that means its fast acting and didn't really explain. I don't think he really knew. I even asked 10 other nephs and same thing.

By Jenny1
Posted July 21, 2008 at 10:32 am

Interesting, Mrs_M that even nowadays the can't give you any other information on what type of FSGS your husband has. Makes me worried that they won't be able to figure mine out either. Then again, maybe sometimes it's better not knowing... If I knew I had the type of FSGS that definitely leads to ESRD, I would stress about it much more and probably make it come on faster...

By szaluski
Posted August 6, 2008 at 1:57 pm

We went to the doctor today with your print out of the different kinds of FSGS. This is her second bisosy, I asked what type she had???? On the first one it stated that her FSGS was too advanced to determind what type she has, the second did not state anything. 10 out of 13 were bad, 20 out of 23 were bad this time.

We are going to a new doctor now that she is 21. He wanted to start her on cellcept again because her numbers are going up slowly. But I said I wanted to wait for the new doctor. (second opinion, different ideal) I'am waiting for them to call back. Her blood creatine is 2.5, 105lbs..She sleeps alot, we started the shots once a week again.

Sharon, Stephanie's mom

By flyahead
Posted August 7, 2008 at 9:46 am

My daughter was diagnosed earlier this year, she had a biopsy on Jan 3rd, and when we went to see the ped. neph, she told us that she has collapsing, and as stated earlier she is a young black girl...collapsing is considered the toughest of the 5 kinds....she is part of a research study now, we are hitting wk 26, and the prayer is that her levels will come down to acceptable levels. Without those levels she will no longer be able to participate in the research. I want her to remain on the research, because right now her visits and meds are covered...I took a look at some of the cost of the meds, and I am scared of having to work them into my budget....Because of this, I have taken on the duty of making sure that she is taking her meds at the right times...she is a 16 year old, starting her sr. year in H.S. and I wanted to get her responsible enough to cover her meds herself, because I figure in another year she will be off to college and I need to know that she can do this on her own. But for now, I will monitor it....and we will try the route of independence later on....I am thinking of getting her the id bracelet (link posted in earlier posting), and possibly a watch with an alarm, because the evening doses are the hardest for her to remember. I think one of the reasons is that she has not really suffered, thank God, she had some swelling earlier on, but that is gone, she has never suffered from fatigue. She has not missed a beat in living life. I have not found a fashionable watch with an alarm....

I know this post is all over the place, ventures in many diff directions...but it was all on my mind....

BTW, I don't want to scare her, but I was considering having her tour a dialysis ctr as an effort to let her know how important it is to continue to take her meds and make sure that she is doing her part to keep herself well....any thoughts?

By mamagemini
Posted August 7, 2008 at 10:45 am

I work with Kinder - 6 graders...that would be a great idea. Informing your daughter on the upcoming "pain" involved is the best idea. Ask them to tell her how it is done also.
I am sure that they can explain it so that it is not so frightening. Plus this will be anaamzing help for her when it does happen. Dialysis takes out all the stuff and helps with the swelling. She will feel a little better. My friend fsgsblahs has a website too that you can look at....I think it is "ihatedialysis.com?"
fsgsblahs is that it?

By fsgsblahs
Posted August 8, 2008 at 10:36 am

Hey Mama-

Yes, that is the site that I was talking about.

flyahead-

I would suggest signing up on that site, because it is for patients, their families, and caregivers. There are a lot of young people on there too, who are fighting all of this. If it were me, I would sign up on IHD, introduce yourself and your story, then do a search for your specific topic or create your own. You will get a boatload of advice from other teens, mothers, etc.

If I was dealing with this at that age and someone took me into a dialysis clinic, before I fully understood my situation completely, I would probably go into complete denial and not got back to another doctor. I am 39, been diagnosed for 1 year, and just got the nerve to visit my town's clinic the other day....and almost didn't go in. It might be a bit too much for kid to absorb.

Just my opinion, but good luck!

By krisjill08
Posted August 8, 2008 at 3:48 pm

The only thing with having her tour a dialysis center in effort to help her see how important it is to take meds. is that if the day comes that she does need dialysis, she may have more negative feelings or feel it's her fault. My son has fsgs and he's 13 with his second transplant, he always took his meds. i know cause he was young and i literally put them in his mouth. He Never missed a day so it wasn't his fault but i had to be so positive when it came to dialysis. it's hard for them. good luck. everyone is so brave that is dealing with this.

By Morse
Posted August 9, 2008 at 6:08 am

Hey there... I used to be terrible at remembering my meds when I was a teen (I was not diagnosed with FSGS back then but my thyroid doesn't work either and I was on a few others)... What helped me was that I got a little notebook and kept it beside my bed and labeled it "My Done List" and the first page was everything that I knew I had to do on a daily basis... People would probably laugh at it because I made sure to put in some humorous things that hopefully no one would ever forget... I checked it each night to make sure everything was done... The other pages were always for things that I wanted to do the following day...

Things that were on my list (in no particular order because I can't remember!):

Take Medicine
Take a Shower
Comb my hair
Eat
Sleep
Get out clothes (I still do this too- get out my outfit for the following day so that I am ready)
Tell my daddy I love him
Do homework
Sing a song
Play Little Piggies (I don't remember why I ever put this one on there but I still laugh about it!)

I would just sit with her and help her make a list... I just looked at it every night to make sure all the vital stuff was done (I sometimes skipped playing Little Piggies)...

I don't keep the notebook anymore but I am thinking of going back to one because I seem to be forgetting things more as I am getting older...

Hope this helps and that everyone has a Tigger day!

Linda

By mamagemini
Posted August 9, 2008 at 11:46 am

a sad thought -- so don't read if you dont want to know --

problem we have is that we will not pass on from these diseases. It will be the other things that will get us. The heart. It can not keep up with the high cholesterol. Plain and simple.
It really doesn't matter if we have tip, variant or collapsing.
That part is only the meds we need to keep them in our bodies. So we do not have to have a transplant or dialysis. Putting it off as long as possible.

Well I get to see my Nephro Thursday, for him to tell me yet again how high my cholesterol is.
Sorry to be so icky today...promise to try not to again!!!
take care everyone.

By flyahead
Posted August 11, 2008 at 3:58 pm

Thanks for the advice. I have not wanted to use the scare tactic. But, she is noticing a diff. in the way that the research leader reacts to her missing a dose and the way that I react. She believes that I am over-reacting of course. But, it is in her best interest, that I want to get her on a schedule/routine of doing what is needed. It is one thing if her kidneys don't respond to the med., it is another if she does not respond well because she is not taking her med appropriately.

And I really want her sr. year in h.s. to be the best possible one. And I don't want to see her sick during this time or any time (esp. because of non-compliance). I know it is a lot for her, and on a fairness scale, it sucks, but it is her reality. And right now, I need her to be the horse that won't buck when lead to water....

I am constantly trying to think of things that will make her life easier (the Mom in me)....things that will make this life seem "normal", even during a trying time. And the day that will bring me to tears of joy, is the day that I realize that she has stepped up to the plate and decided to help in this process. She has made some progress, this is a child that before Jan had never swallowed a pill before. And I was looking at the possibility of having to find all liquid forms of med. Although her neph, suggested that she learn, because there are some meds not avail. in liquid form. She suggested we start by having her swallow mini mm's...we didn't even do that...she just decided she would swallow them, and did....now it took a lot of water in the beginning...but now she is a pro at it....

BTW, her cholesterol was at 410 at the beginning of the year. At her last check she was down to 254. I am thankful for that.

She is a good kid....

Thanks,

T

By mamagemini
Posted August 11, 2008 at 11:41 pm

Wow I can't imagine hearing that about your child...410. I know how I felt when I heard mine but...wow.
Sorry for you and so sorry for her.
Big hug to you both.
Congrats to the lower cholesterol though!!
Keep it doing the good work mom!!!

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