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Thread: Reality Check

  1. #51
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    Is there anyone in the Toronto Ontario Canada area that knows of a Wegs specialist? I am in a small city and there are no rheumatologists and I get most of my information from you. That is very helpful and it has given me great direction but I would like to sit down with a specialist and ask a lot more. Any advice would be helpful.

  2. #52
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    Dr. Simon Carette at Mount Sinai in Toronto is the best in eastern Canada.
    Phil Berggren, dx 2003

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    Thank you Phil, I can always count on this forum and you. Skipper

  4. #54
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    You are most welcome. It is my duty. I had an appointment to see Dr. Carette a week before I found my Wegs doc right in my city.
    Phil Berggren, dx 2003

  5. #55
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    ...chronic deficiency of joy
    I'm going to remember that quote! Seems to fit too many people these days! Thanks for the smile, Sangye!

    KB
    KB -- "The good life is inspired by love and guided by knowledge". Bertrand Russell

    Dx in September, 2011. Major involvement: kidneys and lungs. Medical implications: fungal pneumonia, drug-induced hepatitis, allergy to fungal meds, ear infections, sinusitis, gall bladder removal, vitreal detachment, and eye cellulitis. Medial meniscus removal (unrelated to WG). Medications: Rtx, Pred 5.0, Lisinopril, Chlorthalidone, Levothyroxin, Omeprazole.

  6. #56
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    It took almost a year to diagnose my WG. The only reason that it was finally found was that my brother-in-law is a Dr. at Henry Ford Hospital in Detroit. He talked to my wife and told her that I looked sicker than most people in the hospital. When I got there there were 5 Docs in the room from different specialties and it took them about 36 hours to figure what I had. They verified the diagnosis by doing a lung biopsy. I am being treated at Cleveland Clinic where they see anywhere from 5 to 15 WG patients a week.
    I feel so bad for the gentleman that died. He must have suffered so much.

  7. #57
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    Hey Dan,I'm glad someone finally found out what was wrong with u, sorry it had to be wg though. I also go to the Cleveland Clinic and was wondering what dr. u are seeing there. I have been wondering about my dr. on the last couple of visits. They say I am in remission and I am only taking 5 mg. pred. but he wanted me to take cellcept and when I came home and saw my kidney dr. a week later,he told me that was nasty stuff and it will rut yr gut out and not to take it if I don't have to. This last visit he put me on bactrim and I had to go get blood work done for my kdney dr, and my GFR dropped to 57 and my creatine and other things were elevated. I saw my kidney dr. today ( who is also very knowledgable in wg ) and he said it was from the bactrim and told me to stay off it and go get my bloodwork done again tomorrow.So I was thinking about finding a different dr. there or just listen to my kidney dr and not make the trip there.I was just wondering if it is the same doc.
    Life isn't about how you survive the storm, but how to dance in the rain !

  8. #58
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    Quote Originally Posted by Sangye View Post
    I spent all day yesterday organizing piles of paperwork that had accumulated over the past couple months. I was too sick to deal with it until now. Most of it involved medical care, the majority being insurance papers and medical bills. It was so time-consuming that by the end of the day I was grumbling to myself (even more) about the state of health care in the US.

    I hear stories from some of you in other countries with nationalized health care-- no bills, no insurance denials and appeals, no entire day spent just on filing the paperwork....

    But close to the end I came across a VF newsletter from a few months ago. I read about a man with Wegs who said that even though he was in awful pain, his blood work always looked great and his doctors thought he must be nuts. He asked if anyone had experienced the same thing. Since that pretty much described me, I emailed him and encouraged him to find a Wegs specialist, that they would know what to do. I also gave him the link to our group.

    Today I got an email from his wife. She said he died 3 weeks ago from complications of repeated "pneumonia" and diabetic ketoacidosis. He was too weak to take his insulin, and he was coughing up blood. She said he'd had a continual flare for 6 years. So clearly, he died from Wegs.

    I was so saddened by this. He and I had such similar cases. I've never been in remission. I've been misdiagnosed the same way several times by non-Wegs doctors--treated for pneumonia for weeks at a time while I slowly went downhill. He died the week I received my last Rituxan infusion. Maybe if he'd had a Wegs specialist, he might still be alive.

    It's a reminder of how vital it is to get the very best and most specialized care we can.
    Don't ever put off what you can do today and save it for another day. You never know when of if the other day is coming.My husband bought me a helmmet. I have never worn one in 55 years and I had an accident. I did bumb my head but not hard but you can see the mark where the helmet hit the dirt. Better to be safe that sorry or stykish.
    My blog: Animo

  9. #59
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    My labs look clean across the board. But I recently came off Prednisone and within two weeks I couldn't make a fist in the morning, all of my joints were painful and swollen and I started getting purpura on my arms and feet. My Doctors are very smart and they know that labs are not always an indication of what's going on inside of us. My Doctors are smart enough to look at the symptoms and realize that sometimes it takes the problem to get systemic before it shows on blood work. My Doctors are not willing to let it get to that point and are very proactive and take my input very seriously because I know what's going on with my body better than anybody. I had a scheduled appointment with my nefrologist and he sent me immediately over to my Rheumatologist who put my back on Prednisone at higher doses with a step down schedule My Rheumatologist squeezed me in when I showed up at her office. Bottom line, we have to be our own advocates. We have to choose Doctors who understand our disease and are capable of thinking in terms that sometimes defy reason. I am fortunate to have such Doctors.
    My Doctors showed me the purpura on my feet and arms when I was in the hospital during diagnosis two years ago. They told me to be very cognizant of them and to check myself every day; even on the days when I feel good. They told me that the purpura are a warning sign to me that the disease is active and that bad things are around the corner if I don't do something quickly. I have my Rheumy's cell phone number and I can text her if I show signs and she will call me and make dosage changes over the phone to keep me in check, If I have an Emergency that requires an ER Visit Wegeners related or not she calls the ER and has them isolate me from other patients even while I am waiting. While the health care system is not perfect in any Country, I feel blessed to be living in this one and I am blessed to have been able to choose Doctors who take my care seriously and are proactive rather than reactive. I don't live in a big city or in proximity to a Wegeners Specialty Center like the Cleveland Clinic or the others. I live in a small town Northwest of Dallas. So the doctors are out there, we need to find them and we need to work to educate the ones we have. My wife has emailed specialists in Wegeners around the Country and they have freely provided their information for my Doctors to contact them and my Doctors have used that information to Educate themselves. Bottom line, you know your body better than anyone; be your own advocate and don't take No for an answer when you know that No is not the right answer. Doctors are not G-d's, they are people who 'should' be educated about their specialty. They make mistakes just like anybody else. We need to be proactive in our own care and advance the research of our own doctors by giving them information and links to things that 'we' have found.

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  11. #60
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    [QUOTE=Sangye;7197] It was so time-consuming that by the end of the day I was grumbling to myself (even more) about the state of health care in the US.

    I hear stories from some of you in other countries with nationalized health care-- no bills, no insurance denials and appeals, no entire day spent just on filing the paperwork....

    Hi Sangye. I'm from England so we do have a nationalized health care system (NHS). As far as true emergency care it is a brilliant system. But the rest of the care is not always that good. I feel that in the area where I live, the service has become much worse in the last 18 months.
    I had a seizure last year and I found it terrifying. There was a concern that my WG had started to attack my brain as the last time I had seizures, which were so severe I was in a vegetive state, was when I first started with WG 19 years prior.
    My GP put an urgent request for me to see a specialist. After a week I phoned up to see no appointment had come throught yet. To cut a long story short after a few weeks of waiting I phoned up again explaining how I could see how there might be a long waiting list, but why does it take weeks to just look at a diary/computer and book me an appointment. At this point they explained that there was about another month's wait. For all I knew vasculitis was running riot through my brain. I ended up paying to go private. After the initial consultation I found out the costs for the required MRI scans. There was no way I could afford so returned back to the NHS. I was lucky enough to be put in touch with a specialist nurse and through email, he rushed through the MRI. It was pure luck that I got to speak to this nurse and he was brilliant, but if not for him I could have been waiting a LONG time.
    My WG damaged my hearing when I was 17. 19 years later and I eventually got my NHS hearing aid 2 months ago.
    There are many stories of how NHS specialist say that there is nothing that can be done, only for the patient to get a second opinion privately and they find out there is other options available. The crazy thing is, is that many of these people (including me) see the same specialist on the NHS as the private hospital, but not all the treatments are available on the NHS. Each geographical area has it's own budget, so there is instances where one post code can mean the NHS will pay for a certain treatment and the next post code (could literally be a few meters down the road) could mean the NHS won't pay for treatment. The "N" in NHS stands for national, but sometimes it doesn't seem that way.

    I have always trusted the NHS with my care and truly believed it was the best in the world, but the last 18 months has totally changed my mind. I think the whole system is falling apart. There's been too many cuts and with a huge influx of immigrants, it's at breaking point.

    It really is hit and miss, with some great Drs and some terrible ones. I went to see the Ear, Nose and Throat specialist 3 months ago. He had a quick look in the one ear I have most trouble with and said nothing could be done, I'd have to put up with my problems. Another specialist re-refered me to another ENT specailist that I saw last Saturday. He did a thorough examination which showed suspected activity of WG in my nasal passage. He went on to do an endoscopy and a biopsy. Totally different care!

    The NHS is only "free" to people who haven't paid their National Insurance, i.e. foreigners and people who have never worked. So although we don't have to reclaim expenses from an insurance policy, we do pay for an insurance policy (National Insurance).

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