Hi,
I am in London, England and this has hit me too. On June 6th last year I had an episode of frank haematuria and went to hospital, they suspected a stone but after many tests and a ureteroscopy, I was diagnosed with LPHS and sent home with painkillers…practically written off.
Not happy with this I complained to my doctor who referred me to another specialist at a well known hospital in London. He said he needed to do another ureteroscopy and i had that done last month, again i have now been almost written off. I am under the care of a pain team at the hospital who want to fit me with an implant which will mean i can zap myself when bad. The tablets they gave me are pregabalin, diclofenac and a regular analgesic. Diclofenac is related to aspirin and gives me terrible acidity and I am allergic to gaviscon and alike antacid meds. Pregabalin wipes me out and I just sleep all day.
I can no longer work and the tablets only dull the pain slightly.
Our national health service means that as soon as they realise they cannot fix me, i am sent home with pills and forgotten about.Please wish that the USA does not end up with the health service it is currently pushing for as then you will all be in the same boat as me and my mother who was not allowed MS treatment because it was too expensive for the over 5o’s.
I am 39 and a full time carer for my father which is becoming an untenable situation. I also have a twelve year old daughter and pray she does not get this too. Some stories on here show a hereditary link.
I feel that because there are so few of us around the World, the money needed for research will never be forthcoming and that means we are all left in limbo and in terrible pain.
It is a solitary illness because when its really bad and you are doubled up , nothing anyone does can help so you tend to retreat into your own space to deal with it…like a wounded animal.
I wish all sufferers as much pain free time as possible…..above everything, the pain gives us wrinkles!!
Annie (ithinkitsabargain@gmail.com)
Frank, I am so sorry to hear about your situation. I hope you get some help and can be able to care still for your family. I have been ill with RSD, now finding out I also have fibromyalgia, compressed disc in my neck also. It’s just so hard to function when you aren’t feeling well. I’ve been unable to work since 2002, although I tried for 2 years and ended up hurting my same shoulder again. I sure hope you can get the care you need for you and your family. In my thoughts and prayers.
Sylvia
Hi can you please contact me…my wife has LPHS…Perhaps we can help each other. Hope to hear from you soon. Thank you.
Sincerely,
Frank Maurone
Hi Annie, Have you found http://www.livingwithlphs.co.uk? Also 5 facebook pages re lphs. I live 30 miles from London in herts & am seen by a fab team at the Royal free hospital. Contact me on alison.banister@ntlworld if you need any help
I am a 40yr old woman living in Australia and when I was 20yrs old going on 21 I was diagonosed with LPHS. In fact back in 1990 there was no abbreviation for it, so unfortunately it has come a long way.
I was training for triathalons and working in a district hospital when I was struck with my pain and from that day it never left me. It was 24hours day, seven days a week of the most unimaginable pain ever. I was put through so many tests and so many drugs to try and manage the pain and everytime I saw a new doctor it started all over again. I was diagnosed reasonably quickly, I went to Townsville Hospital and had a kidney biopsy done and they could see enough small changes in the kidney to know what I had. At least they had heard of it but that didn”t mean that all doctors knew of it or even believed in it. I was diagnosed in March 1990 and by August 1990 I was having the first of two kidney auto-transplants.
My right kidney was the first to play up and be operated on and it lasted 15.5hours, I had a collapsed lung and I won’t say much more as it was horendous and the professor that did the operation literally butchered me and put my life at risk. BUT after I got through the operation I had absolutely no pain. I thought I was going to live a normal and happy life. 3 months after that operation my left kidney started and the professor that performed the operation refused to have anything to do with me and just shoved me into the pain clinic at the hospital in Brisbane. I had the worst experience here and I hope with all my heart that over the years things have improved there.
They actually told me it was all in my mind and then put me on the methadone program, I lost 2.5 stone in 2 weeks from vomiting, I was dry reaching blood and my stomache has never recovered from this. I flew back home to my family and local doctor who was absolutely amazing and was the only one who believed me. We finally got hold of an angel in Sydney at the RPA and I went to see him and he was disgusted at my treatment and what had happened to me in Brisbane. His name was Professor Shiels and to this day I owe my life to him and my local doctor, Dr Anthony Vogelpoel. I will never forget these two men as long as I live.
In February 1993 I had my second kidney auto-transplant on my left kidney and it now resides in my right iliac fossa, bascially in my groin right next to my bladder. My experience with Professor Shiels was the complete opposite to the other professor and although my recovery was longer I have not had pain in this kidney since. My right kidney has been a different story. The first professor was meant to move my right kidney to my left groin area but at some point in the operation chickened out and put it back nearly in the same position it came from. The whole reason for this operation is to remove the kidney from the ability for nerves to grow back to it, hence you are then not meant to feel the pain anymore. Unfortunately I have had some pain in the right kidney in 2002 but it was nowhere near as bad and it did go away. Every now and then it comes back and throws me for a six and I jump out of my chair, bed etc everytime but it always goes away as well.
My mum started researching our family history when I was diagnosed as she couldn’t work as she had to look after me and we found out that on her side of the family many men had died due to kidney disease. In the old days they only had one name for kidney disease so it is hard for us to know if any of them had LPHS or not. I still have haematuria and some days it is so bad I can see the blood in my urine. My professor said that it is so rare and no one knows what causes it but that it is hereditary and can skip a generation. I asked all the questions I could, Iearnt how to read reports and refused to allow any doctor or nurse to treat me like a number. I was told back then that for me to have a child with this disease that both parents would have to have it. I do not know if any new developments have been discovered in this and I sadly can’t tell you if it is true as I have not been blessed to have a child.
Professor Shiels unfortunately retired and when I went into hospital in 2002 with my right kidney they told me they were no longer doing the auto-transplants as there was no one who would do them. I was also told the first professor had butchered my right kidney so much it was inoperable.
I have no idea if this operation is available anywhere else but what I would say is that if it is offered to you be very aware of what you are chosing to do. It is an extremely serious and painful operation and there are no guarantees. My percentages at the time were 95% chance it wouldn’t work at all, there was a huge chance I could die on the operating table (I actually had to be resuscitated x3 in my first operation) and there was a chance that if it worked that it may not last. I understand very much not having a life with LPHS, I said for many many years to doctors and nurses, family and friends, I didn’t want to just exist, I wanted to live. I consider myself one of the lucky ones, a guy was diagnosed not long after me and he was about my age and he couldn’t cope with the pain and committed suicide. I remember being told this and just crying for a very long time.
And I remember feeling just like he felt, I remember saying to my local doctor on one of his midnight visits that I just wanted to go to sleep and never wake up. I was so blessed to have him in my life, he knew that although it was a simple statement and that I normally was a very strong person, he knew not to leave and he stayed with me all night.
In the years I fought LPHS I had 50+ epidurals to pump pethadine into my body so my body could have a rest from injections, I had 3 celiac plexus blocks with local anaesthetic, I have no idea how many hundreds of injections of pethadine I had, I had one injection of morphine and hallucinated for ages and never have forgotten this. I have permanent lumps on both my arms just below the shoulder from all the injections I have had. I tried every single pain killing drug at least 5 times and also sleeping tablets as I didn’t sleep much throughout those years at all. My stomache has never recovered from all of these things and I regularly suffer from reflux.
I have 3 major scars that nearly go all the way around my body and I also have a condition where I scar badly (basically my brain doesn’t know when to stop healing itself and my scars grow and have had numerous steriod injections into them to stop them from growing and the pain from them, they had to use liquid nitrogen on the scars just to stop the pain of the injections). I have become probably the worst patient in the world as I never accept a doctor writing me a script without explanation and answering my questions. I just don’t back down with doctors or nurses.
I wish I could have shared Professor Shiels with you all, I will pray that you all find someone to believe you and who can help you. I really do not know what the current treatments are but from what I am reading, basically nothing has changed. Please just never give up and always believe in yourself. I do know how hard it is, I have never forgotten the lesssons that LPHS have taught me, my life has never been the same since. My beliefs in god, in humanity and in myself have gone through many changes because of LPHS but one thing I know, I stood my ground, I wasn’t afraid and I wasn’t going to believe a doctor just because they were a doctor. But there are also people out there that want to help and are caring and supportive and life is far to precious to give up on it. Stay strong, keep searching and asking questions and never, ever give up.
I was asked recently if I could take anything back from my life, if I could have a wish that something be removed from my life what would it be? I didn’t have to think about this, my answer was nothing. I believe that all the bad things that have happened to me, and there have been worse things happen than just LPHS, have happened for a reason and have made me the person I am today, and I don’t think I would like the other person I would have become if I had not had every single bad thing that happened to me happen.
I will always be here if anyone needs to talk or has questions, please email me on melissahm69@hotmail.com
I wish you all love, peace, happiness and a life free of or a life successfully managing LPHS.
Melissa xo