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Thread: Back In, Back Out

  1. #1
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    Default Back In, Back Out

    I had to go back in the hospital on Sunday because what felt like diarrhea was pure blood. That's sure scary to see. It went on for a couple days and then just stopped. We don't really know what happened--doesn't match any diagnosis, really. The docs at Johns Hopkins sure are great, though. They said there's no use putting me through tests like a dreaded colonoscopy to go searching, since the CT didn't show anything suspicious. And my risk of repeat blood clots is too high, especially now that I'm transitioning back onto coumadin.

    The hospital stay was brutal because of my lousy veins. I spent a whopping 11 hours in the ER before getting admitted-- 9.5 hours was non-stop digging for veins. It was more than I could take. Left me in a big crying heap. And still no IV....

    I got discharged on New Year's Eve, a few hours before midnight. I don't think I'll forget that one!

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    Have your veins always been an issue? Mine used to be nice big bulging veins that the worst tech had no problems getting into....now mine fluctuate....some times, they are as large as ever...sometimes they are non-existant and they shove that needle in and twist it around trying to hit the right spot...heck why can't I just cough and give them the blood from there? Or blow my nose to let it start bleeding for them.

    ...I currently have weekly blood tests as I am just ending my first month of treatment and they've been messing with my dosages because of bad blood results...

    -Adam Wells

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    Hi Adam,
    Welcome to the Wegener's club-- sorry you're a member, though. I never had big bulging veins, but they were never a problem for routine blood draws. They've gotten worse and worse since I got sick-- shriveling to tiny, torturous (medical term for veins that go in every direction) things that can't hold a needle. My new hematologist at Johns Hopkins said they're "fragile" as a result of prednisone. I've been off it for almost 2 years, but my body still thinks it's on it. (And will do so for years according to my rheumy there) A blood draw is nearly impossible. An IV is nightmarish.

    One idea to float by you: if your arm veins are getting harder to stick, consider using a leg or foot vein for blood draws. Maybe save your arm veins in case this happens to you down the road. (I had tons of leg clots so it's not an option for me)

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    Thanks Sangye,

    That's probably an excellent idea especially for me....I have a huge mass wrapped around my bronchials that they are afraid to remove because of the location....they figure a year to a year and a half on the cytoxin/pred for it to disolve down enough to remove the balance....it sounds like I may be on this stuff and getting blood tests for quite some time. throw in the quaterly CT scans that they are talking about doing to monitor the mass and I see a bunch of needles headed my way.

    I'm glad I've gotten brave enough to start looking WG up online again...

    Thanks Again,
    -Adam Wells

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    Hi Adam,
    My veins also like to play hide and seek, and I use to have whopping large portals. I have been on cyclo/pred for 6 months last year (2008) and I'm back on it since September for probably 1 year. That's due to my lungs getting involved shortly after my first treatment. I take blood tests every 2 weeks and am due for another CT scan of lungs to see how the lung nodules are behaving. This is not an easy illness so keep your spirits up and visit often with questions.
    Jolanta

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    yes i can also sympathise as regards veins.taking blood was never a problem until wg.now they dig away trying to find one.
    john

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    +1 here. There are only a couple of particular places that are decent enough to take blood from.

    Dry smile at AWells for the comment about giving them blood from coughing
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    Currently but not permanetly residing in Canberra, Australia.

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    Quote Originally Posted by Sangye View Post
    what felt like diarrhea was pure blood.
    I have just experienced this problem for the second time, scary isn't it!

    First time, I had all the tests and it turned out to be haemeroids which I had banded in a simple little op. and all was well again. They now seem to be coming back, so I expect I'll have to do something about it soon.

  9. #9
    Doug Guest

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    Dear me! The dreaded blood tests and the veins that disappear! I feel woosie typing about it! After the lung biopsy in December 2003 (which helped determine I do have WG), the surgeon came to visit with me. Seems they had to use a secondary vein to induce "sleep" to get the lung sample. He told me about the Greshong (gruh-shong, I know I'm misspelling it, but can't find my notes on it) stent. He felt my veins were such a mess that I was a candidate for it. After all the poking around to find a vein that yielded sufficient blood for the daily tests, at that point, he felt everyone would be better off if I had one. I agreed. It was implanted in late December 2003, and was used for the next 15 months to get the samples needed. It was a high maintenance item, however. I had to have weekly maintenance to assure it was working (did I mention, it was installed just above my left nipple, extending into my aortic arch....?), that there was no infection at the installation site, that no blood clots were forming (they injected saline water, then Heparin to assure blood clotting was controlled). Fifteen months with one stent is a lot, but it reflects my adherance to all my doctor's instructions. Do do what doctors and nurses tell you to do. There are no short cuts to remission. Treat your disease (in the early stages particularly) like it can kill you, which it can. Even in remission, the CellCept, or whatever you are using to maintain remission (I'm on Bactrim alone, which my doctor's sources tell him is sufficient to maintain it. I've maintained remission since December 2007 with nothing more than Bactrim.) may have compromised your immune system sufficiently to leave you very vulnerable to infections, and those infections may be much more severe and long lasting for you, the WG patient, than for the rest of the population. Don't self-medicate with herbs or any other miracle cures friends propose. I have a dear friend who said I could "cure" myself with herbs, for example. "I can take herbs instead of what my doctor prescribed," I told her, "and die," I emphasized, "or take what my doctor prescribed, a known protocol for WG patients, and live." You have to be tough for yourself, but it all comes down to detail: follow your medical instructions as if your life depends on it because that's basically where you are at this point. A prayer to your remission!
    Last edited by Doug; 03-17-2009 at 03:21 AM.

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    Hey Doug, welcome to the forum! I as interested to read that you're just on Bactrim. I think (and yes, I'm not a doctor ) you're in a strogner remission than you may think you are. I thought Bactrim was just an antibiotic that's a prevention for PCP Pneumonia. I could Google it I suppose but I'm too tired I would think that Wegs wouldn't be directly affected by it. Dunno really. Just thought I'd comment and say hello at the same time!
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