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Sangye
01-02-2009, 01:22 PM
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!

Awells
01-02-2009, 02:34 PM
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

Sangye
01-02-2009, 02:57 PM
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)

Awells
01-02-2009, 06:19 PM
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

jola57
01-02-2009, 07:26 PM
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.

crackers
01-03-2009, 09:13 AM
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

andrew
01-05-2009, 05:44 AM
+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 ;)

Jack
01-05-2009, 05:41 PM
what felt like diarrhea was pure blood.
I have just experienced this problem for the second time, scary isn't it! :eek:

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. :(

Doug
03-17-2009, 02:16 AM
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!

andrew
03-17-2009, 07:04 AM
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 :D 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!

Jack
03-17-2009, 05:43 PM
I've been taking Bactrim (Co-trimoxazole) for many years. It is an antibiotic and has stopped me from getting all the little infections that used to trouble me every few months. I don't know why it would be taken on its own.

Sangye
03-17-2009, 11:51 PM
My rheumy at Mayo (Arizona) wanted me to add Bactrim to the Cellcept I take. He said research had showed it helped control Wegs, giving credence to the "infection hypothesis" about one cause of Wegs. I didn't tolerate it well, so didn't stay on it.

My JHU rheumy hasn't mentioned it.

Jack
03-18-2009, 12:31 AM
I believe it is not available in some countries because it can have very serious side effects.

Sangye
03-18-2009, 12:59 AM
I tolerated Bactrim okay at a prophylactic dose with the cytoxan. But in 2007, I was on more than 13 rounds of antibiotics (many used simultaneously) and I've not been able to tolerate it since. Thankfully, I haven't had repeated infections. Glad it's keeping yours under control, Jack!

Carol
03-21-2009, 08:07 AM
Since an eye problem I have been taking Bactrim 3 times a week. When I said to the doc who suggested it, that I don't get colds etc and that I'd rather not go on Bactrim, he said there are things much worse than colds when you have Wegs. So I said OK I'll have those thankyou!!!! Just three a week doesn't seem to create a problem for me - I had expected to get thrush but everything seems OK. Carol

Doug
03-21-2009, 12:03 PM
Carol- And how! Your doctor has it right! If you dig around in another part of this dialogue, you'll read about what I went through from late October 2007 to present. When surgery became inevitable to remove part of my right mandible, Rheumatologists from Unversity Hospital (Denver- where I had treatment in 2004 that brought me back) and oral surgeons from Denver Health, working with what my pulmonologist had to tell them about my need for surgery and their knowledge of Weggies in remission decided to pull me off Cellcept. They left me on Bactrim, which has been my only remission drug. Monday, Wednesday, and Friday are my Bactrim days.