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Thread: My only son Died from WG

  1. #1
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    Default My only son Died from WG

    My only family my son Bobby died on 24th July 2008, he had WG it started to kill him in October 2000, he was being treated for migraine headaches and colds in chest from age of 16 till he was 26, Doctors have no idea they just seem to do as whoever treated him before, typical do as Simon does,

    I wonder now do Doctors try and heal people or just prolong illness by not finding out why people are really in pain its obvious he didnt have migraines or cold

    Dr France in Ninewells Dundee Scotland told me my son had a slight lesion in his lung. and not to worry yet three month later arrived in USA ,2 days later collapsed, and surgeon in USA said after examination, my son had a hole in his lung size of a golf ball and had been suffering from a lung top being dead for a long time,,

    Yet Dr France in Dundee assured me my son had 4 X rays and his lung was ok and must have burst in plane to states, what a quack excuse,If I was a Witch Id hex him till he suffers the pains my son suffered,

    So if you get sick in Scotland dont get signed into Ninewells Hospital,which now Im told is where they train more butchers

    This Doctor in Dundee was like many others they hadnt heard of WG

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    Default I'm so sorry!

    To read your story just breaks my heart.
    I was so fortunate that my Dr's figured out my disease within 3 weeks and probably saved me from more problems. I was diagnosed in Aug 07. My worst thing today is the hole in my leg from the necrosis.
    I had spent 2 weeks in a smaller hospital and they kept debriding my leg because it was dying off and they actually thought I had a flesh eating disease or a bite from a brown recluse spider. I was starting to get short of breath and wasn't responding to antibiotics so I asked to be sent to a better hospital and within 3 days after different tests and a lung biopsy, they told me I had Wegener's.
    I can't really say that I've had many good days since then but I still have both legs and my life.
    Again, my thoughts are with you and please get support from somewhere.The Vasculitis Foundation is a good place and this site is wonderful. Please check back and let us know how you are doing.
    Sincerely, Terri

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    I can't say how sorry I feel for your loss and fully understand the anger you must be feeling. Unfortunately, you story is all too common, although the level of knowledge amongst doctors is growing all the time.
    I was diagnosed 20 years ago when little was known of the disease, so I allow them this as an excuse for not spotting the symptoms. It took nearly two years to work it out. During this time I had several operations and had developed almost every symptom in the Wegener's list. Looking back with my present knowledge, it should have been obvious what course to take. Instead, I lost my kidneys and suffered other damage.
    Try to remember that the doctors are only human and are doing their best, but they do sometimes make tragic mistakes. Try to remember the good times you had with your son. I'm sure you would not have missed them, even if you had known that he would be taken from you.

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    Default My own Problem shows what British NHS is like

    I have attended the local hospital in Fife, Scotland where I stay for 8 year ,2 days a week, the first time I went I had a leg ulcer, and one week while they were dressing it I had a water blister on my toe caused by new shows to tight, so this nurse said we will treat that also I said no it doesnt matter it will heal fast as normal, b ut she insisted and placed on it iodine paste, well since that its made the simple blister into an enormous wound, that over years have attended Diabetic clinics which I dont have, Vascular Clinics ,you name it I have been to and all say same thing they dont know what caused it, they have drerssed it iun everything from a white cream Flamazine then various silver dressings, various other dressings, you name it they have used it,

    Then now its Honey dressings and still no one knows why I have two badly wounded toes, large toe is damaged from second toe, its as if the liquid from my second toe wound is destroying skin on large toe, and no one knows why,,all so called referrals are a waste of time, I asked is it not an MRSA bug but they didnt reply to that, The Nurses who dress the wounds just do best they can,,Im on antibiotics every day for last 6month, which I believe are for short time but if they stop it goes necrotic,

    I have lost faith in NHS and the quality of dressings they buy and use, I often wonder are these dressings genuine or just a cheaper brand like they do with pills, even my pills are all the cheap brands that have more "Es" than anything else,I wouldnt trust the Dundee hospital near me,, no way would I let THEM experiment on me like they did to my son.

    Sadly British standards are very poor now far to many claiming on NHS the NHS just cant afford the best anymore. so we have to settle for whatever there is, and its genuine patients who suffer,,

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    Yes, unfortunately there are a lot of things that go wrong with our bodies that we lack the knowledge to cure. During my time in hospital (mainly the Q.E. in Birmingham which is a huge, teaching hospital), I have met dozens of people with conditions I have never heard of. I myself currently have some fairly major digestive issues which, despite visiting several different departments and having every test in the book, remain unresolved. I don't think this is the fault of the consultants. The knowledge is just not there yet. On the other hand, I have been through periods when I have had other problems that are now sorted. I have seldom had to wait for attention and usually received the best of care. Best of all, I've never had to worry about who would pay for it all and I have been able to work and support my family.
    Last edited by Jack; 09-27-2008 at 11:07 PM.

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    Default Treatment should be shared

    What I cant Understand in this world is they can walk on the moon and yet they cant cure the common cold is one example, The thing I really find annoying is when you have a rare desease such as WG why all hospitals cant be allowed the same drugs to help the patients ,take Britain many kinds of medication used in USA isnt allowed in UK and vice versa, Life issame for all there shouldnt be worrys about cost about medication after all its cheaper to try and save people as have ilegal wars

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    John, I'm so sorry for all you've gone through.

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    I'm just so sorry.

    I thank God every day that I have made it this far.

    God bless you and your son. I hope he's found peace now x
    Wegeners Granulomatosis diagnosed May 1995. Tracheal Stenosis since 2000.

    Proud mum of 3 beautiful girls, post cyclophosphamide (so it really can happen!) xxx

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    Sometimes I despair at our Liverpool hospital and have been tempted to take John to Birmingham as the main wegener doctor is based there.I just worry that it is a good hour and a half away when our local hospital is 2mins up the road.I am so sorry to hear about your son,we lost our grandson in an rta 8yrs ago and you never get over it but you do learn to live your life again.He is always in our hearts and we think about him everyday
    Hugs Sue xx

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    I can recommend the Q E in Birmingham, it is the hospital I go to. I started in Rhumatology under Professor Bacon, but then transferred to Renal under Dr Adu. There is a multi discipline team involved in research into Vasculitis and people attend the clinic from all over the country.

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