I had to spend this afternoon in a recliner

I had to spend the afternoon in a recliner at an infusion center this afternoon to receive a dose of InFed, an iron infusion.

As some may know, I have a hereditary condition called Hemochromatosis that causes my body to load iron excessively. Untreated, it can and does cause significant damage to all major organs. One of the reasons that I chose a malabsorbtive procedure was to leverage the malabsorbtion of iron. Before my RNY, I had regular phlebotomies to drain off the excess iron from my body. After my RNY my iron levels dropped to and remained at a safe level. For many years, I have been a Red Cross blood donor, but I hadn't donated for a couple of years. When the Red Cross contacted me last year to ask for a donation, I said I'd be glad to donate and did twice. My serum ferritin dropped. This year I did the same thing, and my serum ferritin tanked down to 5, but I didn't think about the correlation of the donations to the drop in my serum ferritin level. Now I feel like an idiot. I should have realized that donating was risky for me. At any rate, I have been suffering from severe bouts of insomnia, extreme ehaustion, feeling achy all over, especially in my hands and feet, along with restless leg syndrome. I've also been experiencing more significant depression, confusion, fragmented thoughts, short term memory loss, etc... Today I saw my Hematologist and she said that all of the symptoms I'm experiencing are related to Iron Avidity. She ordered an InFed iron infusion for me this afternoon and cautioned me to no longer donate to the Red Cross; while it is a worthy cause if you have the bandwidth, I no longer am able to make donations and maintain a healthy serum ferritin level. She believes that once my serum ferritin is brought up through the infusion, I'm likely to be able to maintain it as long as I don't make any more donations. I am hoping to see improvement soon. 

Hope you feel better soon.

Thanks!

True to the their expectations, I actually feel worse this evening and was warned it might be so for a couple of days, but as the marrow starts doing it's work I should start feeling better within the next 10 days or so. I hope so! I have a trip to CA planned a week from today and I want to have the stamina to do what I need to do and to enjoy it. 

Thanks again,

OMG!  I have the same condition.  Because it involves 2 mutant gene,  I tell people that I'm going to become one of  the X-Men.  All kidding aside,I haven't gotten to level where I have to give blood or get an iron infusion. My iron leve is the lowest level for normal (it's at 12) and my ferritan level is still high but it's half of what it use to be.
Having this is a real trip, isn't it.

Hi Kathleen, 

Hemochromatosis is more common than people realize and often is not diagnosed unless something goes wrong and your Dr knows to test for it or if you have a family member that raises an alarm and causes people to get checked. My father died of complications of Hemochromatosis at the young age of 58. At the time, the genetic tests were new and when they tested me, my genetic markers had not yet been identified so they told me I didn't have it. About 6 years ago I wasn't feeling well and had my PCP pull out all the stops running tests. He called me in to his office and that discussion led to my decision to have RNY.

When you say that your iron is 12, are you talking about your hemoglobin reading? Do you have a Hematologist the follows you? We are a slightly different breed that the normal WLS patient and have to watch our numbers. How high is your serum ferritin? Mine was about 1K at one time and we brought it down below 50. I normally like to keep mine between 30 and 50. That's low for someone without Hemochromatosis, but works well for me. I don't have issues of exhaustion or any side effects if I keep my serum ferritin over 20. also my TIBC is a bit high at 473, but it's okay there and of course we need to keep an eye on the actual saturation percentage. 

I'm sorry about your dad.  I'm just slightly younger than he was when he passed.  So far, I'm the only one in the family that we know of that has hemochromatosis.  The only way that I found out is that I had a sinus infection which is common for me.  One of the symptoms was that I was completely exhausted even with a good night sleep. He did blood work and found that my ferritin level was out of whack.  He thought it was hemochromatosis and was sent to a hemotlogist who confirmed it.  The ferritin level was over 775 at one point and is now down to 350.How often do you go to the hemotologist?  I go every 4 months with  complete lab work: Iron and TIBC(FE Panel), CBC with Differential Lab, Ferritin Serum,  and Comprehensive Metaboic Panel.  You have to excuse me if I sound ignorant.  I was only diagnosed with the back in August while I was getting ready for surgery.  I'm still learning what all the numbers mean and the levels that it should be.  According to the doctor, every thing was good except for the one area.  He doesn't want to take blood at this point because it would put me into being anemic
What a trip.