Phlebotomies

I started having phlebotomies a year ago to reduce my iron level. I have been having them every two weeks except when my medical status would not allow. The count so far is 23. I may need 93 of them to match the number of blood transfusions from which I accumulated the iron. This is a rough estimate since the transfusions were packed red blood cells and the phlebs are whole blood. With at least 70 to go, it would take me another 3 years to get my iron back to normal.

Since others people having phlebs have tolerated them every week or even twice a week, I asked my Dr if I could get them more frequently. He agreed and Thursday I had another with only a week since the previous one. Everything went well. My hematocrit had recovered to 44 in the one week from the 45 level before the previous one. The hematocrit is checked before the phleb but not after. The threshold level to proceed is 38. My blood pressure dropped only a few points to 116/66 after the phleb. So I am now scheduled for phlebs every Thursday. If I can sustain this rate, I may be back in normal range within 18 months.

On the fluid front, I have not taken any Lasix since Monday. My weight has been steady at about 196 lbs and if it goes over 200, I will take another Lasix. Otherwise, I am feeling fine though tire easily and don't have the the physical strength that I used to.

To Pee Or Not To Pee

Seems like one of my challenges now is to balance my fluid levels and subsequently my weight. Three months ago, I weighed 239 lbs with a lot of fluid buildup. With treatments including diuretics like Lasix, I was down to 198 lbs on March 10. Unfortunately, my blood pressure was also down to 99/63 sitting and 77/44 standing and I was faint and light-headed. I got IV fluids and dropped the Lasix and blood pressure medicine. Then in the next week, I gained ten lbs back. After switching back to Lasix, I spent last weekend running to the bathroom. I actually urinated 20 times within a 24 hr period on Sunday and every 20 minutes during the first hours after taking the Lasix. Today, my weight was down near 190 lbs so the clinic told me to stop the Lasix again until Wed. I think this is all complicated by my diet and salt intake. So I need to monitor my weight every day and find a level of Lasix that will be just enough.

On my iron level issue, my last ferritin test was unbelievable at 11,000. Dr says it was inaccurate because of my liver so will test again next month. The last reasonable level measured was about 4000, still about 10 times the normal level. My blood iron saturation level was 86% where normal is between 20 and 55%.

I just bought "The Hemochromatosis Cookbook" from the Iron Disorders Institute. The book and the website are good sources of info on iron retention problems and dietary solutions. I am trying to figure out what foods are best to eat since some are a source of iron and others inhibit iron absorption.