Working Things Out

At 51 years old I've been around allot longer than some ever expected.  I'm hoping some of my experiences may help others to live with thal.  

As of today I feel the best I've felt in many years.  I less often feel icky, short of breath, and tired.  I attribute this to months of receiving a steady flow of two units of blood every two weeks.  It's taken many months of debate with my doctor and monitoring hemoglobin, hematocrit, and ferritin levels to reach this point.

I want to clarify, my doctor is great.  She works with me and to her credit she has admitted she doesn't know much about thalassemia.  With that said, I could have moved on to another but she has always seemed very eager to learn and she listens to me.  Also, we don't have many other thal patients in our area.  I only know two others with in a 35 mile area.

Over the years with aging came the issue of no longer being able to retain a high hemoglobin.  Within the past 5-6 years I went from getting blood every three weeks of one to two units and a hemoglobin of around 9 to receiving blood at 7.9. Give or take a point or two.  It had become difficult to finish a day.  Within many weeks, two or more of the days would end or be interrupted by extreme fatigue and headaches (feeling real icky).  Several hours of sleep would be my only rescue.  I felt I had to do something.

Luckily I am married to a loving wife who is an extreme research hound.  She dug up the standard of care guidelines.  We showed this to my doctor.  She was willing to listen and even reach out to other doctors and treatment facilities.  She had been concerned with what amount of blood to give me.  She understands it's not just to keep me alive but to allow a better quality of life.  As we all know it is also extremely important to closely monitor our iron level.

I am fortunate that I started iron chelation early in life.  At the age of 10 I was taking daily shots then transferred to sub-q multi-day chelation which worked very well on me.  I also had great family support of which made sure I stayed on a strict chelation regiment. My ferritin had never been extremely high because of the strict chelation.  Then came the new oral chelations.  Now my ferritin is literally normal at 131.

Even with a good iron level (normal to sometimes high-normal) I and the doctor had been hesitant about diving into a steady routine of pounding high amounts of RBCs.  We knew we had to watch and be concerned of iron levels.  We tried for the first eight months (or FEM) to juggle blood counts and blood amounts.  However, we found that even being transfused with two and even three units did not guarantee high blood counts.  It sure wasn't making me feel better for any amount of noticeable time.

We made a change and now for the past five months I've been receiving two units every two weeks.  No matter how high my counts are at the time of transfusion I receive two units.   Unless, my hemoglobin falls below 8.5, then I will receive three units.  It has not, as of yet. 

I don't know why I feel so much better with in the past five months than I did during FEM. Statistically my numbers aren't that different.  During FEM my hematocrit averaged 26.6, hemoglobin 8.7 and ferritin 178.6.  And for the past five months my hematocrit 27.2, hemoglobin 8.9, and ferritin 132.  Those few points must make a big difference.  Also, I believe just the fact of spending fewer days below 8.6 is good for me.  If you noticed my ferritin has dropped since my counts have been higher.  I believe that is due to higher counts. The body tends to not retain as much iron with higher counts.  Maybe someone out there can prove me right or wrong on this.  

As you can see I haven't done anything extreme.  But what I did seems to have made a big difference in how I feel every day.  Yes, I still have bad days when my friend thal bothers me but those days have been cut back.  My wife and others even say I look better.  Not as pal of fatigued looking. This past week I received blood and my wife had to admit she didn't know it was time.  Based on my look and actions she normally knows when I'm do.   

So, educate yourself, listen to your family, talk to doctors and nurses.  Compile all the information from everyone and where ever you can.  Then use it to make the best decisions for your type of living.  Remember, sometimes you need to jump through some hoops to get what you need.  

Any questions or comments, feel free to post.