|
(Date Posted:01/02/2006 21:41:03)
Hi my name is Bonnie and I'm new to the forum, I'm 38 and I live in Pennsylvania. I have recently been diagnosed with loin pain haematuria syndrome but before that I had a renal biopsy 3 yrs agothat showed kidney disease, on my biopsy report it says that it is either fsgs, alports or thin basement membrane disease, from what the doctor told me at the time it really didn't matter which one it was because kidney disease is kidney disease, he also told me that kidney disease does not cause pain. I have suffered with bleeding and kidney pain for years before finding out that I even had kidney disease and the only reason that happened was because I was having severe pain and spilling 4+ haematuriaI went to my gyn who put me in the hospital where I remained for 21 days, I was taking 8mg of warfarin a day because I had 3 blood clots in my right leg from 1998 until 2003, at the time of my admission my hemoglobin dropped to 6.3 and my pt-inr was 6.1, while I was in the hospital I underwent a tubal ligation because I could no longer take the blood thinners, then my pap came back and it showed pre-cancer cells again which was the second time since 1991 I'm a DES babyso I then had a historectomy.They were trying to blame the bleeding on anything except my kidneys, after the surgeries they tried again to put me on the warfarin and I started bleeding again, then they told me that they believed that I may have kidney disease because they say that normally if your going to bleed from blood thinners you bleed from your nose or other parts of your body, not your kidney's. So I had the biopsy and yes I have kidney disease just not sure what kind. Now this past Oct I ended up in the hospital again with severe pain and bleeding and finally met a doctor that was willing to acknowledge that I was really having pain and that it wasn't just in my head, he's a great doctor out of philadelphia and has set me up to see another doctor on the 24th of this month in New Jersey thattreats people with lphs from all over. I have been out of work since Oct and spend most of my time in bed due to the pain, at this point in time I wouldn't be able to work if I wanted to, its hard just to walk from one room to another, I couldn't even imagine trying to go to work every day like I use to.Well thats where I'm at right now with my lphs, I'm so very happy that I found this site and hope to find many friends.Bonnie
--------------------------------------------------------------
Kidney biopsy showed fsgs, thin basement membrane or alports, my basement membrane is 198+/-54nm. Cousin born with kidney disease, passed away in 98 he was 31, Dr said that it"s possible I have both thin basement & alports. Have a history of blood clots, histoplasmosis, panic disorder, depression and pre-cancerous cells on my cervix, hysterectomy due to this in 2003. and many other health issues. | 
