I suppose I have a "relatively mild" form of CDA (congenital dyserythropoietic anemia, a type of hemolytic anemia) because I only need transfusions when i get an illness and have a crash (so far it's been annual since i was 19).
It doesn't bother me on the day to day but lately I've been feeling more tired than normal. So I got my blood checked out. Hemoglobin at 8.5 and hematocrit at 26.4. My normals are 9-11 and 29-35 so its not completely abnormal but close enough to my 2009 hospital levels (7.1 and 23.3) to worry a bit.
I've had heart palpitations since I was 19 but since EKGs turn out ok, and my mom has had them since her 20s, they were dismissed. The last about 8 or 9 months, I've been getting them more often, with some chest tightness and pain/pressure. Especially while being physically active (like walking on the hills in this city).
When I spoke to a doctor before about this, it was kind of just ignored. But its more and more a constant awareness of my heart, and my enlarged spleen (which comes and goes). this morning I woke with chest pains and heartburn/stomach ache from my spleen pressing against my stomach.
I have a hematologist appointment on the 15th, my first one in this city since I moved in August, and I'm worried. Should I talk about getting my spleen out, or just wait and see if it gets better again? Should I demand a heart work up? What can I do to help my heart and spleen feel better? Any suggestions?
I'm not necessarily looking for a cure but I can't get in for another week and a few days and I can't keep feeling like I have today.
Any advice or suggestions would be appreciated.
The following user gives a hug of support to vixensly: ajpa (02-22-2011)
My husband has hemolytic anemia and since his spleen was removed he has been in remission. However, not having a spleen means being very careful about getting sick. Flu, pneumonia shots etc. If someone has a cold, they are not allowed over. Period. On the plus side, the chest palpatations, fatigue, dizziness all stopped when the spleen was removed. It was enlarged also and he had side pain. His blood counts improved.
He just got out of the hospital after having a hip replacement. While there, his blood levels crashed. They brought in a hemotologist but it was determined it was just because of the tremendous loss of blood. When he was released his blood levels were 8.5. He already takes folic acid on a regular basis and now is taking iron. In a week his level has climbed to 9.5
You must be feeling terrible at 8.5. My husband was so pale and weak.
Definitely see the hemotologist and get a whole work-up done. Good luck and stay in touch
I have hemolytic anemia, but my story is a little different. I also have ITP - which is like the platelet equivalent to hemolytic anemia. So basically, my immune system has a taste for both red blood cells and platelets. Lucky me.
ITP came first. I had my spleen removed. It was the size of a football, but I never had any pain or anything. Anyway, I developed hemolytic anemia years after having my splenectomy, so it wasn't my spleen.
My splenectomy kept my ITP at bay for 8 years, but it still acts up. My hemolytic anemia is almost always present, but thanks to folic acid, B12 shots and plenty of iron, I can keep my hemoglobin at nice levels.
There might be other options for you besides surgery, though. Make sure you know all your options. If I had it to do over again, I'm not 100% sure I'd have my spleen removed, especially since I still have trouble now and again with both conditions.
THe hemotologist said a person can grow back a tiny spleen after it has been removed and it will cause the process over again. I had never heard of this and was shocked to hear this. Apparently it is not readily detected. Ask about that.
Yes, I do have an accessory spleen. When I relapsed the first time, they did that test and there it was on the scan, lit up. But they said it's so tiny it would tough to find and not worth the risk of another surgery. My surgery was so traumatic, I wouldn't do it again unless I was 100% guaranteed to cure me of my ITP and AIHA.
Luckily both conditions are not a problem currently. How's your hubby?