Hi Doug!
Thanks for your comapssionate help through the vehicle of Daily Strength. What a great idea to keep people from feeling isolated!
I've had a confirmed (DNA) hemochromatosis diagnosis for about a year and a half. I started out with a high ferritin level, and phlebotomies have indeed helped return the level to (usually) normal. I've not had any problems with them at all, and can now even get them free through the American Red Cross. The only issue/advice I would have is to keep in mind that phelbotomies do NOT NECESSARILY reduce or eliminate all symptoms. They do, however, stop further damage -- HOORAY!!!

Hello.
I got my diagnosis of hereditary hemochormatosis is September. Started the phlebotomies in October until November. Ferritin level dropped but don't feel any different. I will now listen to their advice of EAT before getting the next one done.

Yes the phlebotomy did work for me the times the doctor found my level high once it was 858 they took a unit every 2 wks for 12 weeks that brought it down to normal then again it was over 1200 and they took aunit every 2 wks. for 10 wks.I know it causes liver damage which I have Hep C from a blood transfusion in 1981 and as now at end liver stages.

Dear Blue Eyed,
I'm so sorry about the state of your liver. Do you feel good about your doctor(s)?

Judy

Hi Judy, I have one special doctor actually he's a P. A. but he has been there with me threw all of this since 2/06 now my other doctors I can't really say much good about cause I'm only a number to them. My special doctor is the one that found the ferritin level to be so high last year and I had just came out of the hospital from a week stay and had 6 other doctors that never found it. It amazes me !!!! Thank you for your concern. BlueEyed
















B

my son has found no trouble with this at all - just the tiredness afterwards, though being diagnosed in the early stages that worse off within 24 hours....he only goes once every six weeks now and feels better generally - no probs at all other than being left with the tube in by the nurse and being nervous of it coming out and him bleeding to death on the floor....!!!

s this caused by my asthma? i start coughing and it takes away my breath, causing me gasping for air. what do i need to do? should i get an inhaler instead of singulair?

I had a phlebotmy once a week for twelve months when I was first diagnosed. I cannot even put into words how much better I feel now. I still get phlebbed every three weeks but I do not ever want to go back to the way I was, so I don't complain at all. Sometimes they do not go well for me but most of the time they do. I am usually very tired after and it does effect my work as a firefighter so I have to be careful after. Gidget

gidget, have you ever tried taking vitamin B12 and folate supplements to help with the fatigue? i've heard others here recommend that in relation to phlebs. also, drinking large amounts of water beforehand for 24 hours.

Yes I do take b12 an folic acid along with other things and I do drink lots of fluid before during and after. I tend to have problems when the blood is drawn to slow or to fast or if I do not get enough sleep the night before, and also if I don't have my regular phlebotomist, He has been my phlebotomist for over three years now and he knows how to keep me from reacting.

Cathryn, I wanted to just tell you that when I read your post about your son getting phlebbed every 6 weeks I felt a little less alone. I have to get phlebbed every three weeks for the rest of my life, I was a part of another support group where all the members only got phlebbed one to three times a year and when I told them my story one person said That there is no way I could load iron that fast and I had to be doing something wrong. I was crushed I was looking for support not what I got. I have learned that everyone with this disease is different in the way thier bodies deal with it. I was in hope that I would find someone more like me in this new group.

GidgetD, i just wanted to say, it must be really hard having to have such a regimen, and i can certainly sympathise with you. i'm appalled that someone would be so unkind as to say what they said to you. when i read about your regimen i thought man thats alot of phlebs... i never thought about whether it was unusual. this board is caring to people with HH, but its not a very busy board, that's all. i keep hoping it will get busier, because education for the public and support for those with HH are both sorely needed.

Hi Mystery, I really do not think twice about my phlebotomies because I feel so much better than I did. My life improved so much and I would never want to go back to that. We did a lot of different trials to figure out what worked best for me and we finally have. As long as I drink enough of get enough sleep before hand I am usually good. I am the only person in my family that has HH, so I have no one to talk to about how we feel on a day to day basis, I joined a group on the web hoping it would help but unfortunatly I didn;t find what I was looking for. I am hoprful whith this new group because it seems to have a younger membership and people more like me. I am still trying to figure it out though I am not very good with computers so it may take me a while. I am always willing to talk so give me a shout anytime. I have my last Phlebotomy of the year on Wednesday, and then I will have to start paying again to work down my insuranse deductible. It is all so expensive but I no I have to do it so I budget it in just like a car payment :).

Hi Gidget, well i hope you find the support you seek here. I am sure you will be a great source of support and information for others too. i feel the same way about CPAP therapy that i have for sleep apnea. some people find it difficult and give up - but i got used to it in literally 10 minutes, lol. its because my sleep apnea got so bad before diagnosis that i developed bad complications. a bit like HH - long term major health risks, but no symptoms for years to begin with. so, i love CPAP and in some ways wonder why people find t so hard.

in some states you can have phlebs at a blood bank for free - i guess your state isnt one of them =(

3 x ATIVAN.


That is all! :-D