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Buerger's Disease, my brother has it, in the mo...

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Guest

This is a terrible disease, my brother has it, in the most terrible form. he is in constant pain, has had many amputations, and the depression is so severe. 8 YEARS he has lived with this and 27 operations. He is losing the will to live and has lost his independance. I am so lonely as we have lost the relationship that once was, although we dearly love each other. The pain has changed him and the sufferring.

I would like to find/start a support group in south east England/greater London !!!!..Its a cruel disease. Smoking is all he has left, albeit, that's the problem. People do not realise how hard this addiction is. What else has he got? He is isolated, depressed and does not want to go on.

sad

[i:75cd82acb3]This message was automatically imported from the original Patient Experience[/i:75cd82acb3]

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  • Guest
    Guest

    Posted

    I feel for your brother, I guess I'm lucky so far . I didn't lose my toes but Dr. thought I might. I have 3 stints in my left leg. I did stop smoking 2 years ago this was the hardest thing I ever have done it is a constant battle every day .

    I had never heard of this disease until I was diagnosed with it 2 years ago. I am a woman and I was a heavy smoker, most info I found on berguers disease said it struck men. If I was as bad as your brother, I would lose the will to live also. Its sad , I guess the pain in my 3 toes is nothing compared to your brother.

    God Bless,

    Diana

    [i:8eec19a125]This message was automatically imported from the original Patient Experience[/i:8eec19a125]

  • Guest
    Guest

    Posted

    what i find the is the pain you go thro with buergers i have a most loving and caring wife without here i dont think life would be bearalbe

    i gave up smoking straight away when i was admitted to hospital and even now after 5 months i sti;ll crave for a fag but i will never smoke again a ciggarette reminds me of another toe i have all ready had two amputated the cold i feel every day seems to get worse what i would dearly like to find is a forum where buergers sufferers maybe can help one another any takers

    • OnionBuerger
      OnionBuerger Guest

      Posted

      Yes sir! I have had this disease at the age of 31 when I was diagnosed in 1998. I would love to share with you all from across the pond. I live in Oklahoma City, OK USA. I believe we can draw strength from eachother sharing our experiences.
    • OnionBuerger
      OnionBuerger Guest

      Posted

      Here Here!! I agree! My wife stood by me through it all and I really believe if I did not have her support, I would have surely died in some gutter somewhere. God bless all the wives that have the courage to stand by us..... even if we are a tad crabby. ;-)
  • Guest
    Guest

    Posted

    wish I could find more info and support for this terrible disease..I have it in all 4 extremities..was only diagnosed in Feb of this year...have just finally gotten over my 30 yr smoking addiction...boy did that suck...I am finding that many people in the medical field will not help with the pain..they are all sooo afraid of making me an addict..all I want is enough pain relief so I can sort through my house..I want to move to Maine...can't do much now and when I do I hurt so badly..I work through the pain and then really suffer for a couple days after..hands swollen and feet in pain...do you guys get pain meds...I am 45 yr old female...need help....
    • OnionBuerger
      OnionBuerger Guest

      Posted

      Yes....I have been on pain meds for 16 years. I used to take Lortab and Perkocet but now I have a spot on my liver so I am prescribed Oxycodone IR 15mg 3x a day. It's still not enough for the pain and all it does is make me not care so much about it. That's all. The pain will never ever completely go away and I have accepted that. I advise against moving to Maine because of the brutal winters there. We get frostbite very easily at about 40f.

      My advise to you is stay busy, take your blood thinners on a regular basis and keep walking. If you don't use those legs, you will most certainly lose them. It's been working for me for 16 years.

  • Guest
    Guest

    Posted

    sad have just lost my uncle to scepticaemia. After his death his wife discovered from Drs that he had buergers syndrome. Lupus is rife is the family with several having raynauds sydrome too. I just want to warn any sufferers to get checked for raynauds and lupus cos they can be treated even if the buergers cant be. Dave lived in constant pain for 3 years (having had one foot amputated when only 25 with no explanations!) with ulcers all over his lower legs on constant morphine and the dreadful disease got him anyway. and only 61 years old. I wish all sufferers the greatest of best wishes and hope some of what i have said may give you ideas to approach your doctors for treatment, even if just for the pain.

    Kind regards T M

  • shan9008
    shan9008

    Posted

    I see know one has posted here in 4 years. Well, its a long shot, but here goes. I am a 46 year old woman, I smoked under a pack of cigarettes a day, and have been diagnosed with Bueregers. What an awful hellish disease. I think the worst for me is pain control, or lack of it. I have 3 fingers that are affected. The finger tips turned black and hard and I lost 3 finger nails. I was lucky enough that they are healing and I don't need them amputated. My 1 toe and the sides of feet and heels are also very sore. Im on a long list of meds, that don't take all the pain away, but do mask the worst of it. Depression is creeping in, I can feel it. And sometimes as great as my husband has been, I don't think he totally understands my pain. Anyways, if there is anyone out there that needs someone to talk to, feel free to contact me.
    • OnionBuerger
      OnionBuerger shan9008

      Posted

      Hi Shan,

      Yes ...this disease is so misunderstood. Aside from shingles that I contracted at age 14, this disease is by far the most painful I have ever experienced in my life. When your nerves are starving for oxygen, there is absolutely nothing that can stop the pain. It feels like the weight of the entire world is atop your foot or leg. It'sd so horrible! I have had this disease for 16 years but I tell you additude is everthing when you are dealing with it. I try to stay busy and take my meds and it's been manageable. About every 3 years I'll have some more cut off or another bypass but I am still walking with half a foot and only two toes left. I would love to share with you all my erxperiences in dealing with this disease. I had a friend that died from it a few years back by having a stroke and I have another friend who simply could not stand the pain after his bypass and decided to get his leg amputated below the knee. He has turned bitter now and gets envious every time he sees me because I'm still walking. I simply would not give up my leg to any doctor and am adament about that to my grave. Once you get a leg ampuation, your mortality rate falls by 50%. After you lose your legs and arms the disease has no other place to attack except for the liver. That is a horrible way to go and I make damn sure it never happens to me. I'd rather die of a sudden stroke laughing with my friends and family. Nobody wants to waste away and have their soul eaten up by pain and suffering. And for the skeptics out there who don't believe we are suffering that bad, I say screw them!!!! Walk a mile n our shoes and they'd be wasiling like babies starving for some empathy.

  • OnionBuerger
    OnionBuerger Guest

    Posted

    I hope your brother can find it within himself to pull himself up by his bootstraps so to speak and learn to love life again. I suffer from Buerger's Disease as well and have had countless operations and countless doctors who either do not know how to treat it or are just plain afraid of it because there is no cure. I have had it for 16 years and still have my good days as well as bad.

    I live in Oklahoma USA but I certainly feel for you and your brother from across the pond. Please reply and lets stay in touch as I have alot to share with you.

    • Bearkatt
      Bearkatt OnionBuerger

      Posted

      Hello onionbuerger (catchy name!). I too have Buerger's and I live in Ohio.  I was diagnosed two years ago.  It scared the heck out of me so I did quit smoking after about a year. My doctor kind of led me to believe that if I quit all my symptoms would disappear. While the ulcers healed, I still have all the other symptoms and often I think it is getting worse. My questions for all you other followers are: have you ever heard of the condition getting worse after the person quit smoking, and does this ever really get better and completely go away? 
    • shan9008
      shan9008 Bearkatt

      Posted

      Those are some real good questions, and I sure would like to hear other people answers. For me, it has been a year this month(oct) that symptoms started for me. I can honestly say that  I have healed alot, physically my fingers look so much better. However the pain wont go away. That means  am still on a lot of pills. I still am smoking, anywhere from 6-8 low end to 12- 15 on the high end. I have tried many times and different things to quit smoking. I havent quit quitting yet. I am struggling so bad to  quit.
    • shan9008
      shan9008 OnionBuerger

      Posted

      I started to see healing when my vascular specialist put me on cialis of all things. But really the drug was made for the heart, it wasnt until later that they discovered it also worked for ED. Anyways, i look forward to hearing your story. Oh, I might add that my 3 fingers that turned black/gangrene that i thought I was going to loose, have healed. I do  however still have alot of nerve ending pain. My life is  better than it was 1 year ago, however I am still sick.....the pain is a killer.
    • Bearkatt
      Bearkatt shan9008

      Posted

      Thanks so much for the quick response! Its great to know I am not alone and there are others out there who understand what I am going through and who are willing  to share their stories and info with me.  I went to the doctor after a sore broke out on my big toe that wouldn't heal and was pretty painful. He sent me to a specialist and during the testing and questions he asked, I realized I had all the symptoms for quite awhile, but never put them together.  I have a high tolerance for pain so I brushed it off as being achy, tired, cold, etc.  I have a couple toes that stay blue most of the time on one foot and pain all the way up through my calf. The other foot looks good, but it hurts now too.  
    • Bearkatt
      Bearkatt shan9008

      Posted

      I took Chantix to quit smoking and it was hard!! I still crave cigarettes, but when it gets real bad, I ask myself do I want a cigarette or a foot?  I can't have both.  I smoked for close to 40 years, almost 2 packs a day...so believe me, I know how hard it is to quit.  I didn't think about quitting long term, just one day at a time.  I still feel like its one day at a time, but its been a year and a half now, so it gets easier all the time.  So it sounds like you have been on pain meds for quite awhile.  Does your doctor tell you what you can expect in the future?   Thanks again for the response. 

    • OnionBuerger
      OnionBuerger Bearkatt

      Posted

      Bearkatt,

      Yes....when I first discovered I had this disease in 1998 I was diagnosed at OU Medical Hospital. The head of vascular medicine there by the name of Dr. W. scared the begeebies out of me and told me to quit smoking immediately or I would have my left leg amputated, which I did right away. But what really p*issed my chicken off is after I quit, the b*stard still wanted to amputate anyway! Needless to say, I told him to take a hike because he showed no interest in performing a bypass or anything.

      I had quit for 3 years out of fear and the whole time this doctor was practically begging me to let him cut my leg off. I refused. The 3 years of absolutely unbelievable pain I endured changed me forever to the point where I feared nothing at all. When I starting working 60 hours a week as a manager I unfortunately started smoking again. I think when a person decides to quit, it has to be for the right reasons. Fear in my mind is not a lasting motivator at all. Sooner or later it loses it's purpose and we go back. I know it sounds crazy but when you go through agony like that and your idiot doctor still wants to take the conservative approach and hack away, I had nothing left to fear, This doctor was an egotistical, self-centered butcher...plain and simple.

      To answer your question.... quitting smoking only slows it down and that's it. I actually contracted this disease by working in environmental cleanup at a refinery doused in noxious chemicals (same chemicals in most cigs). I did meet a man who told me that his sister was a non-smoker and worked as a safety manager in a refinery. A worker fell into a vat of sludge and the safety manager mindless of her welfare jumped in and saved the man. The very sad ending to this story is she was diagnosed with BD and like I said was a no-smoker. After she had her limbs amputated the BD had nowhere else to go except her liver. She passed away within a decade and the company paid off her family with a large sum of money to keep everyone quiet. If you asked me, this woman was a hero. It does not seem fair at all but that's reality. Not unlike asbestos and Mesotheleoma.

      Oh....thanks for the comment on my name. Here in Oklahoma, we love onionburgers and it just seemed like the perfect handle. LOL!

       

    • OnionBuerger
      OnionBuerger shan9008

      Posted

      Shan,

      I'm with you 100%. I have been smoking for 14 years with BD. And in the past years off and on I have struggled with alcoholism and drug addiction to cope with the severity of this horrible disesase. I am now a recovering alcoholic/addict and I am just thankful that I can still get up in the morning and walk to the bus stop and go about my day with hope and a smile on my face. I have learned not to be too judgemental on myself and that we are human after all and it works for me at the moment.

      What is so heartbreaking about all this is my mother and father will not have anything to do with me because of the fact that I am still "Smoking". In their old age they have become unforgiving, egocentric, self centered and downright hateful towards me and I just don't understand their reasoning at all. Hell.....I learned to smoke from them!!! Now they are hippocrates and act like they never smoked at all!

      The point I think they are missing is everyone handles their mortality and deal with it in their unique way. My father's health is not the best.... Diabetes, high blood pressure and colon cancer survivor and his way of dealing with his fear of dying is killing himself runnng a 260 acre farm alone and it's harming his health worse than my smoking. My mother....well she deals with her PAD, dimentia and heart defect by staying holed up in her room surfing the net and stockpiling all the junk food she can hide in her closet. And when they are not harming themselves deliberately, they are treating others with hate and disgust. It makes no sense at all... how in the hell can someone be like that to their own family and look at themselves in the mirror every morning convincing themselves that what their doing is right and find happiness in it???? If I was okay with this behavior, I would beg for someone to shoot me and put me out of my misery.

      My objective in life is to learn how to die well without hurting others around me. Everyone wants to be happy in life but not many others really thin k hard on having a good death by treating others with patience, love and tolerance.

      I'm sorry .... I just had to get that off my chest because it really gets to me.

    • Bearkatt
      Bearkatt OnionBuerger

      Posted

      Wow!  I didn't know nonsmokers can get this too.

        Sounds like your condition is more severe than mine....I feel bad for you.  You are the first one that says quitting smoking will not make this go away, it just slows the progression down.  I have been searching the net for the future prognosis and can't find much anywhere.  My doc thinks you just quit smoking, and it may take a little time but it will get completely better.  I also get the feeling he thinks I am exaggerating the pain to get pain pills.  Really??  He doesn't say so, its just a feeling I get.  

      So, I quit smoking a year and a half ago and despite the fact the open sores have healed, I feel like my condition is worse with pain creeping going up my legs where before it was confined to my toes and occasionally other parts of my foot.  

      Well, I am keeping positive about this.. After all just about everyone has issues to deal with, I just want a true picture of what to expect in the future.  

      Thanks again OnionBuerger.. .still love the name!!  Keep in touch.  

    • OnionBuerger
      OnionBuerger Bearkatt

      Posted

      Bearkatt,

      I haven't hear from you in awhile. Are you doing okay? I am but now I'm starting to have seizures.

      I hope that you are still hanging in there.

      Sincerely, OnionBuerger

    • OnionBuerger
      OnionBuerger

      Posted

      Shan,

      I hope that you are doing well.

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