🚀 go-pugleaf

I was fortunate to go through the article on "Prediction and Treatment
of Recurrent Focal Segmental Glomerulosclerosis After Renal Transplantation
in Children" in the AJKD, December issue.  My daughter is in the similar
situation detailed in
the article.  I found the article extremely interesting.
Even though I could not understand many of the medical terms,  I have
understood that the article deals with the treatment of children with FSGS
and who undergo treatment,  towards delaying recurrence and consequent
rejection of graft.

My daughter is in the similar situation detailed in the article.
 I present below the case history of my daughter as given by our
Nephrologist, Dr.R.Balasubramaniam, K.G. Hospital, Coimbatore.
1 Name Baby : P.G.Dipika Banu,  D/o P.Gopalakrishnan.
2. Age & Sex : 7   (DOB:  May 16, 1992).   Female
3. Basic Disease : Focal and Segmental Sclerosis
4. On medical treatment since May 1994.
5. Response to Treatment : Poor.  Reached End Stage Renal Failure
6. Date of Transplant : 12-03-97.  Donor: Father.
7. Outcome of Transplant : Lost the graft due to chronic rejection and
recurrent focal sclerosis
8. Taken of Haemodialysis : 18-02-98.
9. Problems of Haemodialysis :  Access thrombosis, Recurrent infection and
child's non-co-operation.
10. Difficulty in transplantation : Positive cross match (100%) to a group
of different donors
11. Taken on Continuous Ambulatory Peritoneal Dialysis (CAPD) since
12-03-98.  Manually done by her mother at home during daytime.
12. Shortcomings in this treatment :
a. Inadequate dialysis.
b. Fluid overload and cardiac failure, intermittently.
c. Bloated heart and LV dysfunction traceable to Uremia.
d. Child has to be in the bed for 8 to 10 hours during daytime.  Parents
also tied up to the baby during the dialysis.
e Non availability smaller volume (500 ml) packing of dianel fluid, and
higher unit cost of fluid in smaller packs
13. Advised treatment CAPD on Cycler (Automatic Peritoneal Dialysis Machine)
if possible, to improve dialysis adequacy better management of fluid
balance. Transplant after few years.
Right now she is on CCPD with a used cycler machine (Baxter PAC X model more
than 10 years old received through a Charitable organisation based in
Mumbai)

   The Nephrologists here are recommending a second transplant. But from the
statistics given in the article I feel that
the recurrence of disease is certain for the following reasons:
1. She originally developed end-stage renal failure very fast (less than 18
months)
2. Albumin in Urine appeared within 2 days of transplantation (I presume the
term proteinurea refers to this)
3. She has already undergone a transplant and recurrence of disease.
Probability of recurrence again is very high (100%).
    In our case in India, state funded medical assistance or medical
insurance facilities are very limited. Most of patients have to make their
own arrangements in the case of diseases that require costly treatment like
this one.  Cadaver transplant is not popular and it is very difficult to
identify a living donor. Cost of transplant is much higher than my annual
family income.  Hence financially I cannot risk another transplant
     My queries are,
1. Is transplant is the only solution to FSGS.
2. Is anyone working on any other alternate treatment procedure.
3. Out of the 15 patients who had recurrence, only 3 have undergone a second
transplant.What the other 12 patients are doing. Also what about the
condition of three patients who had second recurrence. What sort of
treatment they are undergoing now.
4. How long can a patient be kept on CAPD (or CCPD).
5. What will be its long term effect on the physical development of the
child.
6. Is the permeability test necessary in our case as all the other
statistical evidence point towards a certain recurrence.
    I wish to place on record my appreciation for the excellent research
work done by Dr.Fabrizio Ginevri and his team. I also thank Dr.Sue, who
introduced me to the article. This is my first acquitance with any such
medical journal. I am happy to know that so many great doctors are putting
in so much of work to
improve the medical science.  Now, I feel comfortable that sooner or later
children like my daughter will be able to lead a better life, thanks to the
similar works done by doctors around the world.
I also have one more suggestion. Could someone post the abstracts of similar
articles which may be of interest to the members of this group (Of course,
leaving out the highly techinal ones which may not be understood by
non-medical members).  This will help building up hope and confidence in the
minds of patients that some serious work is going on,  some where in the
world to mitigate their sufferings.
Regards.

Gopalakrishnan.P
(Father of P.G.Dipika Banu (F, DOB: 05/16/1992. NS/FSGS: May 1994.
Tx:03/12/97; Donor- Father. Recurrence of FSGS in Tx kidney. CAPD
since03/12/98. CCPD since July 99.)