Our story begins on Christmas of 2000. During this holiday season, Julie came down with what we thought was just a common cold. Little did we know, this would change our lives forever. Since then, Julie has had "gross hematuria" (passing of extreme amounts of blood through urination) Each time, Everytime she urinates. We have spent the past 15 years searching for answers and praying for a "cure" without any success. We have seen Doctors from, Topeka, Wichita, Kansas City, Lincoln, Omaha, and the Mayo Clinic. We have seen GP's, Urologists, and Nephrologists with no success. Juie has had Cysoscopies, MRI's, CAT Scans, and Retrogrades so many times we cant keep track of.
When Julie hands a Doctor or nurse a urine sample, she is asked, "how often does this happen and how long has this been going on?". When Julie responds with, " everytime she urinates for the past 15 years", the doctors respond with incredulous curiousity and out and out disbelief.
Obviously when a major organ is bleeding, there are bound to be complications. For Julie, this means she lives with constant pain and because of the blood loss, becomes anemic and requires iron infusions approximately every 6 months. Which requires going to hospital to have infusions every other day for 2 weeks each time. She describes the pain as anywhere from intense throbbing, to a side ache that comes when going swimming after eating, to spasms, to a full charlie horse like cramp that cannot be massaged out. The pain is constant and we have found NO medication which may provide any measure of relief. Julie refuses to take any mind altering medications that may inhibit her from functioning normally. She lives with this 24 hours a day, 7 days a week, every day of her life. Anemia presents it's own challenges which contributes to Julie being more susceptible to illnesses, fatigue and depression. She has had to give up her career and more times than not, has had to give up some of her favorite activities.
We have 4 grown children, 3 of whom are out of the house. The 4th will be graduating this year and moving home for one more summer to finish up some interning. Additionally, 5 years ago we welcomed our grandson into our home, whom we have raised since he was 3 months old. Alizjah James has been a blessing and brings an enormous amount of energy, and much needed fun into our lives. Having an active 5 year old in the home is a challenge for anyone at our ages, but for Juie, the demands are magnified.
Seven years ago, my brother, Michael Jurgens MD accepted the challenge of investigating Julie's disease. He did extensive research utilizing his medical resources and contacts in the medical community. Eventually, he came across the website for The Cleveland Clinic. At that time, they were conducting studies on patients who were experiencing the same symptoms as Julie. At this time, we discovered that there actually a name for this condition. Loin Pain Hematuria syndrome is an extremely rare desease with less than 200 confirmed cases across the World. Michael arranged consultations with local specialists who referred us to The University Of Nebraska Medical Center Transplant team. Julie did not qualify for a traditional Kidney Transplant due to her kidneys maintaining "normal kidney function", however, after consulting with the Cleveland Clinic, the UNMC team agreed to perform what they call an "Auto-transplant". This involves moving the kidney that was giving Julie the most pain to the pelvic area, stripping all nerves, which was intended to relieve to the pain, but Not the bleeding. This was a success short term. She was able to enjoy a lesser amount of pain for about a year. Unfortunately, as we were warned, the nerves on the transplanted kidney began to regenerate, which brought back the debilitating pain. Additionally, the disease has become much more prominate in her other Kidney.
After seeking the opinion of her Primary Care Doctor, Dr. David Gloor of Beatrice, Nebraska, and her local Urologist, Dr.Christopher Larson of Lincoln, Nebraska, we have decided to seek advice and care from the physicians who pioneered research into Loin Pain Hematuria Syndrome. We are lucky to have a very good medical plan through my employer, however the copays and deductables, along with travel and lodging expenses will be prohibitive. Additionally, the time I am required to be away from work, and long term care for Alizjah, have presented and will continue to present financial hardships. We are asking for donations to help defer the costs associated with such care so that Julie can get answers and hopefully recieve the care and treatment that will allow her to lead a pain free life and also allow her to give Alizjah the attention and dedication that every child needs and deserves.
The last 15 years have required our 4 older children to make sacrifices in terms of time, attention, and financial, including working full-time jobs while attending college, while coming home any chance they have to support and care for Julie and Alizjah when my job has required me to be away from home.
For more information on this under-funded, under-researched disease, please click on the link below. Additional information may be available on the web. It is important to know that due to the lack of research and resources among the medical community, most Doctors are unaware that such desease even exists. They are still trying to define all of the symptoms associated with the desease, making it less likely to identify the prognosis.
Loin Pain Hematuria Syndrome , www.rarediseases.info.nih.gov
When Julie hands a Doctor or nurse a urine sample, she is asked, "how often does this happen and how long has this been going on?". When Julie responds with, " everytime she urinates for the past 15 years", the doctors respond with incredulous curiousity and out and out disbelief.
Obviously when a major organ is bleeding, there are bound to be complications. For Julie, this means she lives with constant pain and because of the blood loss, becomes anemic and requires iron infusions approximately every 6 months. Which requires going to hospital to have infusions every other day for 2 weeks each time. She describes the pain as anywhere from intense throbbing, to a side ache that comes when going swimming after eating, to spasms, to a full charlie horse like cramp that cannot be massaged out. The pain is constant and we have found NO medication which may provide any measure of relief. Julie refuses to take any mind altering medications that may inhibit her from functioning normally. She lives with this 24 hours a day, 7 days a week, every day of her life. Anemia presents it's own challenges which contributes to Julie being more susceptible to illnesses, fatigue and depression. She has had to give up her career and more times than not, has had to give up some of her favorite activities.
We have 4 grown children, 3 of whom are out of the house. The 4th will be graduating this year and moving home for one more summer to finish up some interning. Additionally, 5 years ago we welcomed our grandson into our home, whom we have raised since he was 3 months old. Alizjah James has been a blessing and brings an enormous amount of energy, and much needed fun into our lives. Having an active 5 year old in the home is a challenge for anyone at our ages, but for Juie, the demands are magnified.
Seven years ago, my brother, Michael Jurgens MD accepted the challenge of investigating Julie's disease. He did extensive research utilizing his medical resources and contacts in the medical community. Eventually, he came across the website for The Cleveland Clinic. At that time, they were conducting studies on patients who were experiencing the same symptoms as Julie. At this time, we discovered that there actually a name for this condition. Loin Pain Hematuria syndrome is an extremely rare desease with less than 200 confirmed cases across the World. Michael arranged consultations with local specialists who referred us to The University Of Nebraska Medical Center Transplant team. Julie did not qualify for a traditional Kidney Transplant due to her kidneys maintaining "normal kidney function", however, after consulting with the Cleveland Clinic, the UNMC team agreed to perform what they call an "Auto-transplant". This involves moving the kidney that was giving Julie the most pain to the pelvic area, stripping all nerves, which was intended to relieve to the pain, but Not the bleeding. This was a success short term. She was able to enjoy a lesser amount of pain for about a year. Unfortunately, as we were warned, the nerves on the transplanted kidney began to regenerate, which brought back the debilitating pain. Additionally, the disease has become much more prominate in her other Kidney.
After seeking the opinion of her Primary Care Doctor, Dr. David Gloor of Beatrice, Nebraska, and her local Urologist, Dr.Christopher Larson of Lincoln, Nebraska, we have decided to seek advice and care from the physicians who pioneered research into Loin Pain Hematuria Syndrome. We are lucky to have a very good medical plan through my employer, however the copays and deductables, along with travel and lodging expenses will be prohibitive. Additionally, the time I am required to be away from work, and long term care for Alizjah, have presented and will continue to present financial hardships. We are asking for donations to help defer the costs associated with such care so that Julie can get answers and hopefully recieve the care and treatment that will allow her to lead a pain free life and also allow her to give Alizjah the attention and dedication that every child needs and deserves.
The last 15 years have required our 4 older children to make sacrifices in terms of time, attention, and financial, including working full-time jobs while attending college, while coming home any chance they have to support and care for Julie and Alizjah when my job has required me to be away from home.
For more information on this under-funded, under-researched disease, please click on the link below. Additional information may be available on the web. It is important to know that due to the lack of research and resources among the medical community, most Doctors are unaware that such desease even exists. They are still trying to define all of the symptoms associated with the desease, making it less likely to identify the prognosis.
Loin Pain Hematuria Syndrome , www.rarediseases.info.nih.gov