Does anyone know anything about Phlebotomy out there?

[couchpotato]

Hubby's ferritin level is 1202 (normal range 24-336) so they are going to start phlebotom(izing?) him. We're really wondering how long this is going to take and how quickly the numbers go down. All sites on the net are too vague, anybody ever have to deal with this?

Thanks
Mattie

[PSL]

So does your husband have hemochromotosis?  That is to much iron.  My husband has this and they are treating it now.  At first they would take 1 pt of blood every 2 wks.  His numbers have went down and he goes monthly.  His level was 1000and some.  It is now down to 74 and the NP wants to get it down in the 20's.  He has been doing this for 1 year.  There is nothing to it just have blood removed how ever often the dr says.  Until they are happy with the numbers.  Then my husband will have to continue with this for the rest of his life.  2 or 3 times a year.  The is a genetic disease.  Both parents have to have this for the child to get it.  Men are more likely to have it than women, women lose blood thru their period.  Goodluck to your husband.

[mikesimon]

See http://www.medscape.com/viewarticle/535644 or if theis link works go:

<A HREF="http://www.medscape.com/viewarticle/535644/">LINK</A>


Mike

[couchpotato]

Thanks for the quick reply. They are not saying if he has hemochromotosis but after all the blood transfusions he received pre-transplant, I guess it happens. He's scheduled for his first one on Monday, and although we know it's not a big deal, it's just something else we have to go through. PLUS, we're hoping it won't interfere with our plans of spending the winter in Mexico.Doc's MIGHT let him do it down there if needed. Glad your hubby's back down to normal.

Mike, how are you holding up these days? What's your blood work showing now that you are txing again? My thoughts are always with you.

Mattie

[mikesimon]

Mattie, my labs are getting better. They have a way to go but they'll get there soon. Good luck, Mike

[couchpotato]

Atta boy, I'm pulling for ya. Keep up the good work.

Mattie

[dragonslayer1]

I started treatment for hemochromatosis with a serum ferritin of about 1400...high but not super high. They took a unit of blood out of me every week for three months and had the ferritin down to normal levels. With all the excess iron my hg never dropped below 14. The rough part for me is the big honkin needle...yuk. But the treatment is far better than the consequences of not treating. As far as time and number of treatments goes this varies greatly. They check, or should check it, about once a month along with hg. Hey see if the lab where they do the blood letting will draw the blood for his labs out of the unit during his treatment. It is one less needle stick a month if they will do it.

[kiltedguy]

I also suffered from Hemochromatous and it had to be treated before my Hep. C could be treated. I forget my numbers but the amount they take depends on how fast your body reduces it's iron level. In my case I had to give a pint of blood per week for 14 weeks straight before my iron levels were low enough to start Hep. C. treatment. I finished 24 weeks of treatment yesterday. No more pills, no more shots. :) So good luck to your husband. Cheers to all.

[kiltedguy]

I forgot to mention the type of hemochromatous I got, I got at birth from my parnets. You get one gene from mom & one from dad and presto Hemochromatous. 1 out of 10 people have this disease but most are un aware of it. The doctor told me it did more damage to my liver than the hep. did. Oh well and now I give a pint of blood every 3 months, for the rest of my life. It has no cure.

[couchpotato]

Thanks for the insight on the blood-letting, how was it giving a pint every week? Hubby is doing it every 2 but sure would like to hurry up the process.

Great big CONGRATULATIONS for finishing the treatment, I know how great it feels. It's a hell of an acomplishment.

BTW...what do you have on under the kilt?????? hahahaha

Best to you
Mattie