1. Community
  2. Heart Health
  3. Autoimmune Disorders

Retroperitoneal Fibrosis Halifax West Yorkshire

Posted , 5 users are following.

Del
Del

My husband was diagnosed with RPF 4 years ago aged 46. He had no symptoms before and the onset of severe pain was thought to be kidney stones or prostate cancer. He was lucky that the Urologist tending him had seen RPF before and tested him for it. He had major surgery almost immediatly as the RPF had strangled his uretha and had to be cut away. His urethas were wrapped in fatty tissue taken from his stomach lining to protect them. He had stents put in place and was given steroids. Both kidneys are now damaged and he suffers high blood pressure (under control with medication). The stents were removed and he now lives a fairly normal life but suffers severe back pain, tiredness, poor appetite, swellings in his back and swollen abdomen and can not tolerate being cold. It would be helpfull to talk to other sufferers as there is still very little information available on this condition.

1 like, 13 replies

13 Replies

  • steve88741
    steve88741

    Posted

    Hi, I have just found your post and you seem to be the only other person apart from me in England looking for discussion, even though the post is 2 years old. My diagnosis was around the same time. Do you still want to discuss?
  • Del
    Del

    Posted

    Hi Steve, nice to hear from you!Wow - can not believe someone answered! Yes would still like to discuss - condition so rare no one we know has ever heard of it!We have found info sites in America and Canada but treatment soooooo very different to what we have experienced here in England. Would be very interested to know your story and how your RPF developed/was treated/progressed etc?

    My Husband, Chris, is doing very well now but I think it would be great for him to have someone to discuss with- what he went through, the shock, the surgery, how he feels etc...

    This is such an awful condition - not helped by the fact no one knows anything about it, we were even advised to research it on the web as we would probably know more about the condition than the doctors we would come across who would be treating!!

    I have never used a forum before so not sure what we can or can not do or say etc ?? We look forward to hearing from you soon. Del and Chris Haigh.

  • steve88741
    steve88741

    Posted

    Hi Del & Chris

    It would be really good to correspond with someone who has experienced what I have been through and is now experiencing the same things as myself and to exchange information. I haven't ever used a forum either and it has taken me nearly two year to find you, though I knew from my medical team that someone in the north of England was a sufferer as they had exchanged information with a consultant up there when they were trying to figure out what to do. I do know the forums are publicly visible and I wouldn't want to publicise my story to the world as it's very personal and sometimes very emotional. If you would be happy to continue away from the forum by email that would be good. Please don't reply with your email address as I'm concerned that we will attract the wrong followers and idiots, but leave a message in my website enquiry box.

    I sincerely hope you take up my suggestion.

    Sincerely

    Steve

  • steve88741
    steve88741

    Posted

    Hi Del and Chris.

    I am trying to reply to your last post, but something I have said won't let the post go through, it is 'waiting for approval' hopefully you will receive it soon and we can continue our discussion. If nothing happens I will try to post again.

    Steve

  • Emis_Moderator
    Emis_Moderator

    Posted

    Hi Steve,

    It had to go for approval as you included a link which I've had to remove. If you want to contact each other or exchange email addresses please just use the message service by clicking the button under the user's name. This is a private message service so any emails etc will not appear on the site.

    If you have any queries message me or post here.

    Regards,

    Alan

    Emis Moderator

  • shaun54190
    shaun54190

    Posted

    hi guys.

    you need to google :- retroperitoneal fibrosis world support group. the link that comes up, is to a yahoo support group. you will need to sign up. but dont worry is absolutely free. garry and put are the moderators of the site. you will find a wealth of information on the site, and you will be warmly greeted by all.

    my names shaun, i live in leverington ( just outside wisbech) cambridgeshire. i had the ureterolosys back in 2002. didn.t work for me, as my ureters were to badly damaged. i have bilateral stents ( both kidneys ).

    i look forward to seeing you on the site. all the best, shaun.

  • steve88741
    steve88741

    Posted

    Hi Shaun,

    Thanks for your comment. I was actually looking for someone close by in England with whom to communicate. I had seen a lot of the world wide stuff but wanted a local contact, and I found Chris, with whom I am getting along just fine thanks. My RPF has evolved into igG4 Syndrome, which is another issue into contend with I am just waiting for tissue sampling in April.

    Sincere best wishes.

    Steve

  • shaun54190
    shaun54190

    Posted

    hi steve,

    im glad you have found a fellow sufferer you can talk to about this rotten disease. if you do venture over to the site, you dont have to post messages or converse on the forum there. but there is a coloumn on the left hand side of the site, which contains many links and files that hold a wealth of information for people with rpf. these are totally free, and are downloadable as pdf files. you are also able to read what other people are posting and talking about.

    are you also aware that guy's and st thomas's hospital in london. have a rpf clinic. the following is from their website.......

    Our RPF clinic aims to improve the care of patients with this rare disorder by bringing together specialist surgeons, nephrologists, pathologists and rheumatologists.

    We believe we offer the only service in the UK where patients with RPF can talk with specialists from different disciplines, who have extensive experience of managing this complex disease, in one clinic.

    you can make a referral yourself on the website. or you can be referred by your specialist or gp. they are also doing research into rpf.....you will need to google.....retroperitoneal fibrosis guy's and st thomas's hospital london.

    wishing yourself and chris all the best, shaun.

  • steve88741
    steve88741

    Posted

    Cheers Shaun,

    I hope you don't think I'm being disrespectful by not joining in at the moment. I just wanted an 'RPF buddy' and at the moment I have found him in Chris. Maybe later I will get more involved.

    Thanks for the other info though.

    Good luck

    Steve

  • shaun54190
    shaun54190

    Posted

    your not being disrespectful at all steve. we all find our own way in dealing with the problems thrown up by this disease. i have to admit, i dont post on the forum, i havent for ages. but i opted to recieve what people are posting. i have these delivered straight to my email inbox, so this keeps me informed of whats going on in the rpf world. and lets me know if there are new files or information to download. which come in handy when i see my consultants.

    best regards and good health, shaun.

    • steve88741
      steve88741 shaun54190

      Posted

      Hi Shaun, I hope you are keeping well. I wonder if you could help?  My condition is rapidly declining and I am considering a plasma transplant to improve the effects of my medication.  I have posted a discussion point about this but have not had any response.  I wondered if you or any of your RPF buddies have any experience of this as my consultant is quite keen but I have some reservations until I have some feedback from fellow patients.

      Cheers

      Steve

    • shaun54190
      shaun54190 steve88741

      Posted

      hi steve.

      sorry to hear of the decline in your health.

      im afraid i havent heard of plasma transplants.

      if these are similar to blood transfusions, i would definitley say go for it.

      ive had quite a few intravenous iron infusions and blood transfusions due to severe anemia. and i certainly feel much better after them.

      im sure there would be information on the file links, in the RPF health group on yahoo.

      i would also suggest a search on google, for people who have already gone through the proceedure. about the pros and cons of the treatment.

      im sorry i am unable to offer you more advice.

      i wish you better health in the near future.

      best regards, shaun.

  • ghazals25112
    ghazals25112 Del

    Posted

    My husband was diagnosed with Retroperitoneal fibrosis in january after a year of pain in stomach back doctors saying its gas he had scan they found the lump then they said its sarcoma were sent to uchl hospital in london after tests and mdt meetingd they said its Retroperitoneal fibrosis and refered us to royal free in london he always in hospital pain pain cant sleep he on steriods so many pain killers oramorphe so much zomorphe 150 mg we are back and forth at the hospital the mass is still there they said they cant operate stents are causing so much psin blood in urine blood clots dont know what to do what to try life changed so much he depressed just not enough info on this ilness
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.