LPHS Journey

I am 47. My first signs of a problem was at age 19 with high blood pressure. Then at age 27 with blood in my urine thru-out my pregnancy. Next at age 33 at conception of my third pregnancy with a very dangerous bacterial strep infection and pain mostly in my back. Then at age 37 I had to have emergency surgery; my kidneys could not handle it. I got a kidney infection. And then all kinds of pain and blood in my urine. My blood pressure was out of control. A ureter stent was put in, but something went wrong because it caused agonizing pain. It was taken out. I required more surgery that found shards of the stent in my ureter. That relieved some acute pain, but I still had kidney pain and blood in urine. By the time I was dealing with the shards of the stent about 20 months of agonizing pain had occurred – I was ready to die. The only thing that stopped me was my three children. My mind could resolve that my husband would want me at peace, but I could not reconcile how my children could live without me. As I researched suicide methods I found 1 website for LPHS & a friendly voice in Ohio helped me. She connected me to doctors at Ohio State University. I also went to a teaching hospital in the largest city in my province. (Canada) The teaching hospital was a smart idea! This type of hospital loves hard to figure out medical problems. I finally got good care & thorough diagnosis + start of a pain management plan. I also went to Cleveland Clinic in Ohio because it is considered the #1 Urology & Nephrology Centre in the US. It cost $5000, but was worth it. When we add up all lost wages in/out of Cdn hospitals with out diagnosis, this was cheap. Now there is more knowledge about LPHS.

3 thoughts on “LPHS Journey”

  1. Can anyone advise me have they been able to continue working as lost my job due to LPHS in 2010. DIismissed due to incapacity o illhealth. Since i have become un-employable. even though I have so many more good days since I had the intra-thecal morphine pump inpkanted, as suppose to before that. HELP an live on government grant .. Souh Arica

  2. My Experience: I had to give up my career. I have daily pain, that will without any warning or regularity become severe, anguishing kidney pain. I have not been diagnosed with a kidney stone, but I think at times I have the microcrystalizations described in LPHS research. Looking after my 3 children, our home and my self-employed husband and myself is challenging enough. I used to “crash & burn”…meaning that I ended up ill with infections, exhausted, overwhelmed with pain & in the hospital often. Over time, by assertively seeking help, I found this treatment plan: 880 mg subcutaneous IV lidocaine transfusion/3 weeks; 6mg metadol daily; 300mg wellubutrin daily; 100mg tomirate daily; 12mg hydrochlorothiazide; 10mg ramipril; 75mg desipramine daily. I use eletriptan 20mg for migraines as needed, as I get migraines when my pain is severe. Plus I use diazepam vaginal suppositories in a low dose for especially several pain episodes, but this is for the exceptionally severe episodes. This treatment plan has kept me out of the hospital. I have only been in/out of the ER a few times since starting this treatment plan. Instead I am a regular patient of my family doctor, and two pain clinics, which is much better. Being a managed patient, is much better than a crisis care patient. Unfortunately, I would still say that kidney pain is an unrelenting, unbearable pain that no human should have to endure. It still pushes me to depths of emotion and dark places that I would rather not venture. If I try to stay positive, I tell myself that I have incredible strength for enduring the pain that LPHS has put thru. But this is sometimes hard to do in the long, cold, lonely nights of pain. And that is just the fact of chronic pain. It is hard.

  3. I re-read what I wrote. It is blunt. I do have good days. I do enjoy life, more than the pain can break me. But someone should have been really honest with me at the start. It took me a long time to get a good diagnosis. Here is some of the info I eventually found out: Some cases of LPHS can be mild, and resolve themselves after some time goes by. According to some of the research physicians at Ohio State University it depends on how many glomular filtering units (nephrons) are involved in each patient’s LPHS case. LPHS patient’s have brittle cells, rather than porous so when blood comes into our kidneys to be cleansed, it gets trapped along with urine. Then our kidneys swell against their capsules, just like we have kidney stones. Eventually the nephrons with brittle cells will be destroyed. If the patient has primary LPHS, then we will still be left with enough nephrons to cleanse our blood thoroughly & produce urine. (Each kidney has approximately 1 million nephrons) Unfortunately for some LPHS patients, they are born with brittle cells in both kidneys, and many nephrons are involved. These people will experience greater pain and for longer periods of time in their lives. I am one of the those. For these LPHS patients it is best to be brave. Find the resolve to be strong. (This is the explanation the the OSU doctors who examined my Kidney biopsy gave me & so far … my life has fit their research profile quite closely. I keep in touch with OSU for updates in research every 2 years.) Take Care. Answers can be found.

Leave a Reply

Your email address will not be published.