I’m a lucky one with LPHS

I wanted to write my story here, but it is super long so you will get the abbreviated version! I have had LPHS for almost 20 years. I have been to hell and back. I lost my friends and some of my family, my fiancee, and my career. If it weren’t for my parents, I probably wouldn’t be here today. I want everyone to know that there is hope, and I am proof of that.

When I was diagnosed, the treatment for LPHS was auto transplantation. With a 10% success rate, I said no thank you. I was then shuffled from pain clinic to pain clinic, because the docs said they couldn’t help me, most just looked at me like I was a drug seeker. My nephrologist was in Ohio, but I live elsewhere in the Midwest. I have taken every narcotic that you can take, not to mention all the other medications that doctors prescribed off-label. I also had many procedures (ultrasounds, CT scans, IVP’s, cystoscopies and a kidney biopsy that positively identified the LPHS). Then there was the numerous experimental procedures.

I was at my last hope of having a pain pump implanted, when my nephrologist suggested I see their pain doctor for a procedure called Pulsed Radiofrequency Ablation (PRFA). I went for the consult, and the doctor said I was a candidate for the PRFA, but not to get my hopes up. I was the sixth person with LPHS to have this done, and the results of the other five were not good. And of course being experimental, my insurance company did not pay for the PRFA. I didn’t care, I needed it done. Made a payment plan with the hospital, and had it done. My doctor said that it would be a success if it lasted 3 months and I could get off of 75% of my medications.

The PRFA lasted for 9 and a half months and I got off of 95% of my meds! I was thrilled! The good news is that the PRFA can be repeated. The bad news, is that you don’t know if it will work again. I had it repeated, and it has lasted 7 and a half years. Yes, I said YEARS! I am completely pain free in my kidney. I’m one that passes a lot of blood clots. I do have pain when the clot is moving down the ureter into the bladder and then out of my body. This is why I have to stay on a maintenance dose of morphine, to help when I pass the clots. But the dose is so small compared to what I used to take before I had the PRFA.

My life has completely changed. I now have a husband and a child. I wanted to share my story to let you know that there are options out there. When I was diagnosed almost 20 years ago, there was not many options for treatment.

I am not saying that the PRFA will work for you, but it is an option. All I know is whatever you do, do NOT give up. Keep searching, keep trying and keep your head up. Find what works for you.

One thought on “I’m a lucky one with LPHS”

  1. School of Health Sport & Bioscience
    University of East London
    Water Lane
    London E15 4LZ
    United Kingdom.

    Hello, Good afternoon. My name is Patrick Fagbuaro and I’m an MSc Medical Physiology student at the University of East London. I have been given permission to contact you and ask a favour.

    For my research project I am conducting an epidemiological survey on patients suffering from Loin Pain Haematuria Syndrome. LPHS is a horribly debilitating disorder and hopefully the work done in this project will contribute to improved understanding and treatment in the future by gathering patient experiences. The questionnaire will be conducted at UEL under the supervision of Amina Dilmohamed, a nurse in health studies with experience in epidemiological surveys; and Professor Michael Seed, Professor of Pharmacology, who was part of a team which recently published a case study on the treatment of LPHS (https://casereports.bmj.com/content/2015/bcr-2014-209165.abstract) and is undertaking fundamental research into LPHS. The study has been given ethical approval (XXXX) by the School of Health Sport & Biosciences Ethical Review Committee. We are currently the only people in the world doing basic research into LPHS.

    If you or the members of your group would be interested in taking part in the survey, or if you can put me in touch with appropriate individuals, the contact details of myself and my supervisors are below.
    Patrick Fagbuaro; [email protected] – Prof. Michael Seed; [email protected] – Dr Amina Dilmohamed; [email protected]
    I would be very grateful for your help.
    Thank you for your time
    Best wishes

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