About six weeks ago, I found this wonderful site, it was and is still so very helpful to me. I’ve read so many of your story’s, if not all, of what you have said about LPHS. I was diagnosed almost 2 months ago. I’m 58, but now have realized that I have had this disease for many many years. I can’t count how many doctors have told me “there’s nothing I can do for you.” Or MY ABSOLUTE FAVORITE “Maybe you should seek some phychiatric help.” Knowing now that I actually have something wrong with me is a relief, but for it to be a rare kidney disease, only confuses me more.
For the past 5 years, I have had the most wonderful Doctor, Dr. Abhin Singla. He has helped me go through so many things. My diagnosis list is 3 pages long, single spaced and over a period of 25 years. You see, I had breast implants in 1979 and they ruptured, they removed them in 1992, apparently they had been ruptured for approximately 3 years before the doctors found out. The silicone had already leaked into my body. The only things left were the silicone capsules. Some of you might be asking, “Why did I do this?” It wasn’t for vanity, I had double d’s of my own. I was 110# and already had 5 surgerys on my breasts due to fibercystic disease and tumors. The doctor suggested I have a complete masectomy and put these little “b”cup capsules in. My X husband insisted we do that, he said no 27 yr old woman should go with out breasts. I was such a fool, I was so afraid, he’d leave me if I didn’t do it. So, I did. By the way, he did leave me, 3 years later. But, I blame myself, for the final decision. I didn’t have the courage to say no. Now, I’m paying the price, with my poor health for that foolish decision. Since 1990, I started getting sick, I broke my foot, it took almost a year for me to be able to walk again, I kept getting infections, then my gall bladder caused enough problems to be removed…. I wont go into my medical history, we’d be here forever. After all the years of seeing SO MANY Doctors and none of them really wanted to treat me. I was a liability. I was told by medicaid to go to the emergency rooms if I got sick, so I did. They thought I wanted the drugs. I wanted a doctor who help me. I have lupus and my immune system sucks. I get sick easy. I have to stay away from people who are sick. I used to have headaches so severe on a daily basis for over 10 years. I became addicted to one specific medication. I found this absolutely wonderful man who said he would help me get off of it, Dr. Abhin Singla. He is not only my doctor, but my friend. He got me off the meds and has helped me with getting my life back to some kind of normalcy, if thats possible. I was in a wheelchair/walker and crutches for over a period of 6 years, due to arthritis. There came a point when I just couldn’t walk anymore. He wanted me to get my knees replaced. The doctor he suggested said no at first. But my Dr Singla, kept saying, she can do it, she’ll work hard. So we did both knees at the same time. Today, I’m walking on my own, without assistance. That was 3 years ago. Since then, I’ve had other health issues, but he’s always pulled me through. I went to him 22 months ago with what I thought was passing a stone. I’ve passed many over a 30 year period. He sent me to see a urologist. None of them in that group could do anything for me, I was passed around within their group for over 6 months, the pain in my right kidney, upper ureter and lower ureter was excruciating. Finally I was told, there was nothing more they could do for me. So I went to a Nephrologist, she referred me back to the urologist’s. I thought I would try a different urologist in the Chicago area, after telling “Doc” what she wanted me to do, he said “NO WAY.” We did all kinds of tests again, he never gave up on me. Then he found a new urologist for me to see. After more tests and trying different things, the doctor felt that maybe we should take the kidney out. He did some research on the symptoms and thought this could be the answer. The day before the surgery was scheduled, Dr. Singla pulled the plug, NO SURGERY. He wanted to do some more testings. So between the urologist, Dr Cho and Dr. Singla, they decided to do a biopsy. By this time the left kidney had started to have the same kind of pain. Dr. Cho was up many nights and finally found out what I had, everything pointed to LPHS and Arteriolonephrosiclerosis. Neither of these two wonderful doctors have given up on me, we are trying to find some answers. Something to help me, to take away the pain. When I see something on this site, I tell them, this is what they’ve tried. So we try it. This disease is new to them.
I can’t tell you how many times I’ve cried myself to sleep because of the pain. Times when I just want to die and quit, but I’m no quitter. I’ve come this far. We’ve tried meds, nerve blocks, injections of “cocktails”, so many things, If it wasn’t for Dr Cho’s diagnosis and Dr. Singla helping me with the pain. I’m not just referring to pain meds, but to search for other ways to treat this disease, I don’t know where I would be. I remember an emergency room doctor accusing me of being drug addict, I insisted that he call Dr. Singla personally, he was my primary care physician. He didn’t know or want to know anything about LPHS, but he made the call anyway. When he returned to my cubicle, he told me I was to be admitted to the hospital and that he owed me an appology. Doc Singla and I have been going through all of the support groups to see what others have tried, what worked or did not work for others. So PLEASE, tell us what you’ve all tried. I’ve read a lot of things in some of these letters about bad doctors, but as we all know, there are some really good ones out there too.
I don’t get too many good days. As I am having severe trouble with urinating now. My right kidney is twice the size it should be. I’ve asked both Docs about doing an exploratory, to see if adhesions are causing some of the problems. Have any of you had problems with adhesions and one more question… have any of you had any type of silicone implant (breasts, hips, knees,?)
Thank you for hearing me out, but its been a long struggle and I am so tired, like all of you. But I have to say this.. if you haven’t found a doctor that believes in you, as I have, keep looking. Without Dr. Singla, I don’t know what shape I would be in, he’s a doctor who really cares.