Living with Hemochromatosis??

[mom of princessx2]

Fancy word for blood iron overload.

Just wondering if anyone else out there has it and how long it took you to get to a maintence schedule and how often do you have to go for maintence.

I have been going for phlebotomy for a year (twice a week Jan-June and once a week July-present) and my ferritin still isn't low enough to be put on maintence

 

[Mermaid02]

No- I have the opposite problem and have had to have 4 hour iron infusions....

Good luck to you!

 

[disneymarie]

Sister is undergoing treatment, she had been a donor for years for the RH - research. So she was donating many years, but very ill.

I and the rest of the sisters were tested a none have the issues she has.

She is orangy, and liver shot by the time diagx. Often wonder if it was brought on from the research injections she got over the years? OR her alcholism that has her so unamanagelable.

From reading, generally I heard of managable results for most.
Good luck, and hope someone here has thoughts, you may try the Neurotalk.org forums, some have varying health issue answers there.

 

[Lachesis00]

Yup me too. I go once every 4 weeks... My body does not absorb iron.

No- I have the opposite problem and have had to have 4 hour iron infusions....

Good luck to you!

 

[solotraveler]

You aren't going to like my answer, but....

For me it took about 18 months of initial treatment to go on maintience. Now that I think about it, that's a whole lot of blood letting

Now that I'm on maintience, I go every 10 weeks (so five times a year). No side effects and it's extremely manageable.

Let me know if you have any questions, I'm happy to help!

 

[mom of princessx2]

Sister is undergoing treatment, she had been a donor for years for the RH - research. So she was donating many years, but very ill.

I and the rest of the sisters were tested a none have the issues she has.

She is orangy, and liver shot by the time diagx. Often wonder if it was brought on from the research injections she got over the years? OR her alcholism that has her so unamanagelable.

From reading, generally I heard of managable results for most.
Good luck, and hope someone here has thoughts, you may try the Neurotalk.org forums, some have varying health issue answers there.

Mine was storing in my liver as well but thankful no damage according to the MRI. However they will do another once I am on maintenence.

I hope your sister is doing well at this stage.

 

[mom of princessx2]

You aren't going to like my answer, but....

For me it took about 18 months of initial treatment to go on maintience. Now that I think about it, that's a whole lot of blood letting

Now that I'm on maintience, I go every 10 weeks (so five times a year). No side effects and it's extremely manageable.

Let me know if you have any questions, I'm happy to help!

Well, I am on month 13 so I can see it taking another 2-3 months for me as well. So far I have no side effects either except the stress of taking 3 & 5 year olds but at least now I am down to once a week!

Did you feel bad before treatment?? Did it make you feel better after your numbers came down?

 

[solotraveler]

Well, I am on month 13 so I can see it taking another 2-3 months for me as well. So far I have no side effects either except the stress of taking 3 & 5 year olds but at least now I am down to once a week!

Did you feel bad before treatment?? Did it make you feel better after your numbers came down?

The sheer amount of time treatment takes is the stressful part for sure...

I had extreme fatigue when I was diagnosed, but that was the only physical symptom. I am genetically predisposed (I have two uncles with it, my grandfather had it...), so I knew to be on the lookout and ask for the test, which made my diagnosis much faster than it is for a lot of people.

I started to feel better right away, actually. But I will say that it was a very nice moment when I went on maintinence and no longer had to worry about that standing Monday at 6:00 phlebotomy appointment.

 

[tazdev3225]

My mom was diagnosed with hemachromatosis about 15 years ago. I was tested and am a carrier. I don't remember why she was initially tested but her drs feel it was what probably took the lives of her fathers siblings. She went more often for a phlebotomy when she was first diagnosed. She now goes about every other month depending on her ferratin level. Ironically she was anemic most of her life and thankfully never took iron supplements. It would have had devastating results. You can be anemic and have this disorder. She has to carefully monitor her iron intake which means a careful diet. She knows that if she has to much red meat or higher iron foods she has to go to the dr. sooner. She has had no ill effects and fortunately it was caught before it did serious damage to any of her organs. OP it is easy to control and live with. As it is a genetic disorder I would have any kids you have tested. The sooner it is discovered, the easier it is to prevent damage. Good luck.

 

[robmck3898]

I was just recently diagnosed with hemochromatosis. So far my doctor has me going 1x a week for phlebotomy.
I'm preparing for my next WDW trip in February and it really got me thinking about restaurant usage of iron skillets. I was initially planning on going to Boma, but I realize that lots of African and Indian cuisine use iron skillets for food prep, do y'all know if this is the case for Boma or any other restaurants in WDW?

 

[taximomfor4]

My dad had this. His was caught way, way, waaaaay too late. His liver was a disaster and he was having skin lesions from the bilirubin in his blood. At first, he went for treatment but once he found out how profound his liver damage was (and since he already had emphysema), he stopped. He passed away in August, 2008 from liver failure. From time of prognosis to time of death, he chose no treatment at ALL (except getting fluid removed from his abdomen for relief of pain once). Of course, dad didn't seek medical care. His insurance wasn't that great, so he chose to save the $ and just let fate have its way. Of course, his brother had just passed away months earlier from liver cancer he developed from his own hemachromatosis.

OP, no matter how long it takes to make it to maintenance, thank goodness you have the opportunity to get to maintenance, even with the inconvenience involved. for being on top of your medical care.