Regular Blood Loss w/ Weg's:

[TOBEY32]

Several have experienced this. Was told by a doc that slow blood "leaks" (how I put it) are not uncommon w/ Weg's. During my last hospital stay my blood count was 6.? which they bumped to 9.? I did feel better but wonder why they didn't give me enough to put me in normal ranges: 13-17. Maybe only so much blood at once is good. Sounds like transfusions when needed are the answer to this problem but no one said this .

Has your doc provided you with more info re blood "retention" and the treatment?

David

[delorisdoe]

I am probably wrong because it was so long ago for me but I think the idea is that you dont need to be bumped up to 13-17 because as long as you are bumped up to a certain level your body should be able to get you to where it needs to be from that point. I was somewhere around 4 I think. Long time ago though so I am not sure. also my problem was brought on from cytoxan and not wegeners itself.

[TOBEY32]

because I was on Cy and maybe that's what I'm thinking. May be going back after my Rit treatments. I'll keep an eye on it.

[delorisdoe]

My doctor looked at me from accross the waiting room and said "oh my, I think we have a problem.' I guess you look pretty bad when you are that sick. I know I said 4 but that is only because I think lowere is impossible lol. 2 actually sticks in my mind 4 just sounds more believable.

[TOBEY32]

At 6.? my doc said much lower and I wouldn't be here.

[delorisdoe]

Ya, that is why i think i am wrong about 2 but I know at the first follow up appt I was at 4.

[Geoff]

I recall my Hg being about 5 to 6 on the scale. I had bled profusely into my lungs but at the end of 2 weeks in hospital I had 3 seperate blood infussions and have not looked back!
Havent had a problem with blood levels since thank goodness.

[Sangye]

What I've learned is that if you're not in normal range then you have bleeding going on somewhere. You have to assume it's Wegs. I was never in normal range for several years and everyone attributed it to chronic disease. It was smoldering Wegs.

They don't give you more blood because transfusions are incredibly risky. Not only can you have a reaction to the blood, but there are many infectious pathogens that can be transmitted through a transfusion. They use them with extreme caution.

[watersedge]

I remember my dad being given a blood transfusion and they had to stop it as he had was haemorraghing blood from his nose. Would he have had a reaction to it or could it have been from being on a blood thinner at the time because he was laid up in the hospital bed to prevent clots. I often looked it up on the internet and typed in blood tranfusions and nosebleeds but never really got an answer.
Same thing as Sangye said about having a low blood count, we were told it means you are losing blood from somewhere.

[pberggren1]

By blood count do you guys mean WBC? White blood count?

[watersedge]

Red blood cells I think, I could be wrong.

[pberggren1]

What function and importance do red blood cells have again?

[Sangye]

They carry oxygen. Google, Phil. G*O*O*G*L*E :wink1:

[pberggren1]

Yes, I remember now. And don't ever tell me to freaking google again please..............lol

[Stephanie78]

Johns was 6. (he had the plasma exchange because they new giving him a transfusion alone wouldn't do any good since his lungs were being attacked by the disease) They gave him like 6 units within a weeks time and it was up to 9. It is now back to 7 HOWEVER his color is good. They say for a healthy male the normal range is around 17 HOWEVER the Cytoxan will bring the numbers down (he was on oral form). He is on an iron pill due to being anemic however they said that they are comfortable with his numbers.