Tag Archives: kidney

My brother’s keeper

Dear LPHS and other pain sufferers, I am compelled to share the following information with you for a two-fold reason: 1) that actual sufferer of LPHS is a dear family member and 2) said sufferer is currently incarcerated and cannot help himself.

What I am about to share with you is an account of his years of pain, in his own words from a letter he sent to me (I will not add or delete anything, except for any proper names or anything that might be considered a breach of an individual’s privacy):

Hey bro, Well as far as my kidneys. You know what you read already. I have microscopic blood in my urine on occasions but it is mainly macroscopic (you can see it). When I do urine tests it is usually 3 blood or more. I have constant kidney/bladder infections. In fact, I am finishing up a course of Bactrim for one now.

I have pain that would put a bull in traction damn near EVERY day. I have gone to medical on numerous occasions with very little help. **** doesn’t want to pay for anything. They won’t even send to see a Urologist or Nephrologist for it. I have been sent out to civilian emergency rooms only twice. I am usually put on a 5 days course of Ultram, which is a very low dose, non-narcotic pain med. It helps some but with only 5 days it doesn’t control the pain through the whole episode. I have bad pain that can last up to 30 or more days. After 5 days of the Ultram I am just starting to get some relief and they cut me off.

The Nurse Practioner I see now is trying to help me. He has submitted my case to the Pain Committee but with no success. They tell him to put me on high doses of Tylenol and Motrin. I can’t take those for long periods of time because they are bad for my kidneys. Some days I really wish I was dead instead of being in pain. I know it sounds bad, but it’s true. I have cried myself to sleep more times than I can count. I could just use someone to help me force these f***ers into really helping me.

This disease will not kill me but it sure as hell makes me wish for death. I don’t need a lot of help, just enough to keep me going until I can get out of this rat race and see a REAL doctor. They think in here that everyone is just trying to get pain meds. Everyone wants to get high. Then when it comes to someone with a real problem, they get screwed. They finally have my blood pressure under better control. It used to get as high as 200/170 with a pulse rate of 165. That is enough to cause a stroke. It is usually only that bad during severe episodes of pain.

I am on 3 different meds for blood pressure and pulse control. Verapamil, metoprolol, and lisinopril. they at least keep my pressures under better control. When I have a severe attack though, they still go up. The Nurse Practitioner told me that is what got his attention because you can’t fake blood pressure. That is a big problem with this disease because you can’t SEE it so the docs think you are either drug seeking or mental. I have had to deal with that for years.

It took 4 years of tests and psych evals before I was finally diagnosed in 1998. It was thanks to those two women from Europe. It has been a very long, painful trip since I had my first kidney stone in Oct. 1994. After that, it all went to shit. I passed 12 kidney stone in that next 2 1/2 years and I’ve had 1 in here back in Feb 2011. The kidney stones didn’t hurt as bad as this disease. It is worse than giving birth because at least the pain stops, pretty much when the baby comes out. This LPHS pain continues for far longer.

Well dude, not sure what else to tell you. I do appreciate you doing this for me. Take care of yourself and I will talk at ya’ later. I love you all.

My Story with LPHS my Name is Glenna Hall

As a child had massive migraine headaches at age 3 which continued into adulthood until I had my child. Also from age of about 8 had start of problems with cystitis of the urinary bladder and a sometimes a distant ache in the kidney area. Kidney infections began in my early 20’s.

In 1991 had a sudden bleed (urinary) and went to the doctor saying that thought I had a stone. She replied that it was not possible as I would not be standing in front of her. Two days later woke up in trauma and stabbing pain and colic and this started a saga of explorations. Finally they decided to laser the small stone and was only supposed to be day surgery and out. The stone was smashed into a zillion pieces and must have back flushed somewhere as nothing was recovered and oh ya a hole had been blasted through the ureter and having had excessive IVP dyes left me after with full body hives. Was in hospital for about 9 days.

On going back for a check-up we got the “shuffle off to Buffalo” routine. What followed from the hospital was a low grade bladder infection so they thought which eventually went to both kidneys. I spent 2weeks in another hospital. The urine output was the color of rootbeer and was dehydrated. When I got out of hospital I immediately started a large massive daily dose of Natural Vitamin E to quell the Scar tissue in the left ureter and measured my magnesium intake in food in relation to calcium and then supplemented the shortfall. The urologist was pleased and I was given a bill of health or so I thought until it started again and then was in the process of going to Hospital after Hospital to explore the problem. All the doctor’s looked at their feet and not at me. I was getting used to it.

The hives continued until I went to a Homeopath who told me to stay off dietary added salt and helped me to straighten out my PH though still break out in a hive here and there. A few years ago I had severe case of hives than appeared as thought I had been lashed with a whip and they appeared in my throat and had to triple up on anti-histamines to get through the night. Meanwhile the kidney condition got much worse and began having torture chamber like pain episodes that were accompanied by invisible knives stabbing me in the kidneys and massive colic and not able to keep down gravol or the pain med. Then shortly after I started to bleed out clumps of blood and tissue. Finally made to a Nephrologist who by checking every avenue diagnosed me with LPHS which sounded to me after his explanation as a living death sentence of indescribable pain constant and with interloping ramped up episodes. Having a well earned diploma as a Natural Health Consultant though not able to work or put up a shingle; it does help me in using supplements along with other resources that have helped somewhat and even a little in the myriad world of pain that counts for something, huh. The evidence of bleeding is not there now though the pain has ramped up since and even though I monitor my pain and try to build my pain tolerance level it’s so difficult as the nature of the pain keeps changing as though it has it’s own personality. Now I’m getting bladder/pelvic pain along with ureter and front and back kidney pain both sides and lately have had no relief from the pain medications unless I double or triple the medication so most of the time I go without as much as possible, as I cannot take other pain medications due to allergies. Tried the pain clinic gig though that made me worse as cannot tolerate steroids and the pain was like something out of a horror movie.

I do whatever I can to keep mind of my nutrition needs though it can be a struggle. Run the road of being well hydrated when pain is a the simmering level and dehydrated the rest of the time as the pain is on the boil most of the time. Would appreciate any help or encouragement and hope I have helped someone to know that they are not alone.

Thank you and Take Care

glenna or multiplicity hall

~ LPHS ~

Hi , I dont know if this is posted properly but we will see . My name is Erin Walter. Im 19 and from New Zealand. I have suffered with LPHS for five years now .

I have seen numerous Urologists , Renal Physicans , Pain Specialists . Iv tried many pain reliefs . Im in pain 24/7 . Every urine test for the past six years has had blood in it , microscopic or visable . I have bad bouts , or ‘attacks’ as i call them , not so often anymore . every two months or so , it was weekly at one stage and i spend weeks in and out of hospital on I.V morphine . I have had a stent put in , a camrea put into my kidney my urologist saw my kidney was bleeding inside . He said he would try to laser it , but it was bleeding from so many different spots that if he tried he would just damage the kidney . My kidney function is fine , and other than low iron levels occasionally im pretty healthy .

LPHS has had a massive impact on my life . I left school at 15 , to study from home . I lost the majority of my friends , if it wasn’t for my boyfriend and family i would have been miserable . My Mum has been there for me , takes me to all my doctors visits . She brought a house just over a year ago with a flat underneath it for my boyfriend – Devin & I to live it . Its great to have our own space , but the comfort of having Mum upstairs if I need her . Iv been with Devin for five years in July , friends say we are like an old married couple and im happy with that . Hes my strength when i have none , hes my best friend and such a blessing to have . It hasn’t been easy for him either , its not nice having a girlfriend who is in and out of hospital , drugged up & always in pain .

Another love of my life is my puppy . his name is Bailey and hes a chihuahua pappilon cross . hes a little over a year old . he sleeps in bed with me , keeps me company when im up late at night.

I’m at a loss as what to do . I’m tired of this, I spend most of the time at home . I dont work and rarely see my friends. As awful as it sounds I do find some comfort in emailing people who know what its like . If you would like to email me its , erinrose@windowslive.com .

Hope you are all having a painfree day / night .

Love Erin

Loin pain hematuria syndrome (LPHS)

Loin pain hematuria syndrome, also LPHS – is a very rare condition which predominately affects females. Described as combination of unilateral or bilateral flank pain and microscopic or macroscopic amounts of blood in the urine that is otherwise unexplained.

One theory proposes that it is caused by a thin glomerular basement membrane and red blood cell (RBC) renal tubular congestion that leads to swelling of the kidney and distension of the renal fascia resulting in pain.

Stories

Kat – Overwhelmed and in need of advice

Lauren Runkle – Overwhelmed at 17.

dragonfly1693 -Living with LPHS

Craig – 21 Years with LPHS

Tania – I am 16 yrs old and my doctors believe I have LHPS

Kiki – 23 years old and uncurable

Shery – Answers to my questions…do you have any?

loveandpeace3 – Painful life

Ivy – LPHS….My Story

More stories

More about LPHS

Some facts about LPHS

http://en.wikipedia.org/wiki/Loin_pain_hematuria_syndrome

LPHS – new posts

from Lauren (laurenrrunkle@yahoo.com)
Overwhelmed at 17.

I think talking to people that have pain just like I do and understand the way I’m feeling will empower me. I was just diagnosed with LPHS in October after about a 1 and a 1/2 of not knowing what was happening. Kidney stones were what started the process off and I had several procedures for that and some spinal injections to try to alleviate the pain but it didn’t work….
http://www.lifeinpain.com/node/34767

——————–
from Melissa (cloe_90210@yahoo.com)

I just got diagnosed with this year. Ive had problems for over 10 years during which time I was seeing a urologist. He referred me to the nephrologist who gave me this diagnosis. He didnt offer up any hope just pain meds.
http://www.lifeinpain.com/lphs#comment-24221

——————–
from Sherry R-V
Answers to my questions…do you have any?

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.
http://www.lifeinpain.com/node/34764

——————–
from Kat
Overwhelmed and in need of advice

Hi, my name is Kat. I’m 34 and was diagnosed with LPHS a couple months ago after a biopsy revealed thin basement membranes — and seemingly every other test known to medical science showed nothing more telling than “hey, there’s lots of blood and stuff in your urine.”…
http://www.lifeinpain.com/node/34763

——————–
from kiki (totaly_tweety@hotmail.com)
23 years old and uncurable

…please watch out for sick people who pretend to be in pain but there are only giving false hope ! please i dont want anyone to be given hope when its not there!…
http://www.lifeinpain.com/node/34762

—-

– Dorene

Overwhelmed at 17.

I just found this website just recently and I think talking to people that have pain just like I do and understand the way I’m feeling will empower me. I was just diagnosed with LPHS in October after about a 1 and a 1/2 of not knowing what was happening. Kidney stones were what started the process off and I had several procedures for that and some spinal injections to try to alleviate the pain but it didn’t work. I have some good and bad days but mostly bad days. I still go to school and next year I’m hoping to go off to college but I don’t know what to do because I can barely function at home. I miss almost 2 days in a 5 day week at school and I already am allowed to go in late for school. I had to quit my job that I loved so much when this all started. And I have lost about all of my friends now because I can’t go out and I’m in so much pain. Also my parents don’t understand what I’m feeling and they can’t deal with this any longer it seems like. My boyfriend of almost 2 years is trying his hardest to understand and he is amazing but I know he can’t take all of this all by himself. It’s hard to talk to someone who truly doesn’t understand the pain I’m going through.

Some of the doctors I saw told me I’m crazy. And I know that I’m not! Does anyone have some answers for me? If you don’t want to talk in front of everyone else then email me at laurenrrunkle@yahoo.com please.
Thank youuu!!

Answers to my questions…do you have any?

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.