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Thread: Hello! ~=]

  1. #21
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    Quote Originally Posted by AshleySparklez View Post

    Jack; 25 years, huh? You're a fighter!! Would you say it's better or worse now?
    The first few years were very bad, but my medication was sorted out and I gained remision. I then had nearly 20 years of being quite well most of the time with the odd relapse or hospital visit for random infections and the like. During the past few years, the long term effects of illness and medication have caught up with me and I have had to retire. I now have quite a few problems that are probably not going to go away.

  2. #22
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    Quote Originally Posted by AshleySparklez View Post
    Doug; What were the symptoms you had before going to the hospital?
    weakness/ malaise (big time!)/ night sweats where I'd have to completely change out my bed, down to the mattress, and change my clothes(fevers- I remember sitting in church, and becoming totally drenched though the sanctuary was neither too hot, nor had I done anything to prompt the sweating)/flu-like symptoms/ had to breathe through my mouth for nearly 10 months because of bleeding, crusting in sinuses (!- of course, I didn't think anything was wrong with me, and that cold medicines would "fix it", and though I was going through cough drops and 220-count boxes of tissues so fast I always bought a couple of each weekly))/blood in my urine, which was almost chocolate colored by the time I was hospitalized (it had a strong, unpleasant smell)/ terrible knee and foot pains that felt like arthritis, though I've not been diagnosed with that/ coughing up blood lumps (looked like banana slugs, those big Pacific Northwest slugs the size of your thumb, perhaps)/ a dry, unproductive cough that wouldn't go away/ eyes looked bloodshot, and a time or two the vessels ruptured, giving me the look of someone hit in the eye/ shortness of breath, which ultimately came down to I couldn't breathe, it took me 1-1/2 hours to climb 13 stairs from the basement, where my shower was to the frontroom, where I collapsed on a sofa and told my father (I was living with my parents at the time, sort of a live-in caregiver-!- who do most of the heavy lifting, driving, yardwork, etc. for them) I didn't think I was going to make it to work that day, would he please call the ambulance. Oh, rapid weight gain because I was going into renal failure, was retaining liquids (I was about 190; by the time I was hospitalized I was 293!). Other than that, I felt just fine! I was one of those people who rarely caught cold, never had major illness, so (to try to understand why it took me 10 months to figure out I was sick in a major way) I guess lack of experience with illness made me think I was just suffering a series of lesser illnesses that "would go away"; I treated them with cold medicine and aspirin. You might say I am fortunate to be able to cast an image in a mirror today! You also might say I completely understand how a person might do all the wrong things to come to a point where he either collapses and is hospitalized, or just crawls off in a corner and dies.
    Last edited by Doug; 08-28-2009 at 07:19 AM.

  3. #23
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    Wow.. those are intense.

    I have another question that should probably be in the Medication section of this site, but knowing me, with all I have on my mind, I'd forget about mentioning it to my friend.

    I was wondering, does anyone have any chest pains as side effects to Prednisone? I've read through, but I haven't noticed anyone mention that?
    The reason my friend and I went to the hospital in the first place on Sunday is because he had chest pains. Now, he just texted me (he's still in New Jersey, no access to a computer at the moment)telling me that he still has it.. and was wondering if that was one of the side effects of the steroids? I checked online quickly while I was at work, but couldn't find anything.

    I thought I'd ask you all first, before assuming it was anxiety?

    Thanks again!

  4. #24
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    Default Oops! I almost forgot..

    One more thing, I almost forgot to ask!!

    My friend has his appointment at the hospital on Monday... what are some general Weggies questions you think I should ask? I want to be as informed as possible, but my nerves seem to be getting the best of me lately!
    Anywho, just in case I blank out (which will most likely happen), I'd like to create a list of questions!

    Anything would help!

    Thanks!

  5. #25
    Doug Guest

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    Quote Originally Posted by AshleySparklez View Post
    One more thing, I almost forgot to ask!!

    My friend has his appointment at the hospital on Monday... what are some general Weggies questions you think I should ask? I want to be as informed as possible, but my nerves seem to be getting the best of me lately!
    Anywho, just in case I blank out (which will most likely happen), I'd like to create a list of questions!

    Anything would help!

    Thanks!
    Go to http://vasculitisfoundation.org/ and look for the section on FAQ of the newly diagnosed. It is extensive and, I think, will serve well for this first round. I might add, it may help you with your anxiety: as someone helping a weggie, a caregiver possibly in future depending on degree of WG mpact on your friend, you need to mind your own health! Slow down, take those deep breaths, stay calm for your friend, and share what you learn from this forum and the resources we recommend with him.

  6. #26
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    Well, Ashley, I had a stent put in my heart in May of 2008 because of a blockage in the Left Anterior Decending artery. Since I had that procedure done it seems that I have been going down hill. I was in remission from Crohns Disease for 12-13 years and came out of remission from that in August of 2008. Now, the diagnosis of WG--I can't help but think that it is all related. Hopefully your friend has good doctors. My phrase that I always use is "things will get better--I ain't dead yet!"

  7. #27
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    Hey Duane, looks like you and I are in the same boat with the heart probs. The only diff is I haven't started going down hill yet.

  8. #28
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    Ashley, I get chest pains and spasm's in the throat quite often and the doc tells me it is nothing so, I'm going to go see a gastro doc that I know and see if he can find anything then an ENT after that if things don't get better.

  9. #29
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    Ashley, I don't think chest pain should be ignored or automatically attributed to drug side effects. It isn't a side effect of pred, anyway. He needs to mention the chest pain to the doc and make sure something is done to properly assess it. There are a number of things it could be--Wegs outright or Wegs-related.

    Doug's suggestion for VF website questions is great. Also, look on this site under Medications, Doctors, etc...-- there's a "sticky" called "Tips for Dealing with Doctors" It'll help you stay calm and get all the info you need.
    Last edited by Sangye; 08-29-2009 at 01:07 AM.

  10. #30
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    Quote Originally Posted by Gary View Post
    I get chest pains and spasm's in the throat quite often and the doc tells me it is nothing
    In my experience, that just means that he does not know what is causing it, but doesn't like to admit it.

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