Low hemoglobin is just a byproduct of living with Sickle Cell Disease. About ten years ago, my hemoglobin level hovered between 5.0 and 5.8. Previously it was in the area of 7, if I recall correctly. Then my doctor at the time, Dr. Bedros, put me on a drug called Procrit; an injection that helps improve the production of red blood cells. While on that drug, my hemoglobin went from 5 to 9. The difference in how I felt was day and night. Though I disliked sticking a needle in my stomach three times a week, it was worth it to have the improved energy level.
The thing about Procit is, it is very expensive--$1000 or more for a month supply; its expense made the process of getting the prescription a complicated one. Consequently, there were a lot of issues with my insurance. When Dr. Bedros retired and I began seeing my current hematologist, I received a lot of pressure to stop taking Procrit. Apparently, Procrit is not generally used in the treatment of SCD and there aren't any studies that prove it's beneficial to Sickle Cell patients; even though I was living proof it did. Unfortunately, over the past two years, Procrit hasn't helped as much as it once did and my hemoglobin has averaged 6.
As of January, my insurance informed me they would no longer will pay for Procrit. Where I previously was very resistant to getting off Procit, I slowly open to it; namely because the medication wasn't helping the way it once did, and my insurance left me with little choice. Thankfully my doctors and I had begun weaning me off Procrit before I found out my insurance was no longer going to pay for it.
I have now been off the drug for a month and my doctor is closely watching my numbers. Unfortunately, even with the Procrit, my hemoglobin seems to be returning to where it was prior to Procrit; that being 5.1 when last tested. I have a feeling this is going to be my new norm.
For me, when my hemoglobin is in the low fives, I have less energy; I have a mild ringing in my ears, and I often feel mentally cloudy. I am hoping my body will adapt to this low blood count and I wont always feel as tired as I presently do. With Sickle Cell, however, many things are just the norm. My doctor has told me some patients in Africa walk around with a hemoglobin level of 2. That blew my mind. When I was eighteen my hemoglobin dropped to 2. I was passing out as a result.
There are so many diffferent virients of SCD; additionally, the way Sickle Cell impacts each patient can widely vary. What is typical for me may not be typical for another patient. I just felt like sharing what my experience has been lately with my hemoglobin level. Sickle Cell patients are constantly having to adjust to new realities. I feel a hemoglobin level of 5 is my new reality. It is what it is and I continue to plug along on this journey called life as best I can.
Related Posts:
•Symptoms of Low Hemoglobin in Sickle Cell
•Procrit & Sickle Cell
•Various Forms of Sickle Cell
