What about Bllood Transfusions

My RBC is still low!!!  It was low last year at 3.57 and now its even lower at 3.35.  My Hemotologist said if it didn't improve i'd have to get blood transfusions, and now I think I'll have to do it.  Is it really horrible?  Is there something I can do besides supplementation with Iron to improve my levels.

I take Vitalady Tender Iron (240 mgs. Carbonlyn Iron a day with Vitamin C)

I take it before bed, would spliting it up during the day help?  I follow all the no dairy etc rules.  I need help!!!!

Thanks!

There are a lot of "what ifs" here.

You are seeing a hematologist, which is good. You seem to be drawing a conclusion that your RBC is low due to your iron? Is your iron and ferritin low? Have you had iron absorption tests? See the iron thread just above this one.

Blood transfusions or iron infusions? Are you sure you have the terminology correct?

My dad had autoimmune hemolytic anemia, where certain white blood cells were destroying his red blood cells. Whether his RBC gradually declined and then suddenly dropped, I don't know. Had he waited 24 hours to call an ambulance, he would have died. He required numerous blood transfusions and had a long recovery. The hematologists found no correlation between AAHA and the DS. This situation you want to clearly avoid.

Until you truly know the root cause of your lower RBC, its hard to treat. I would definitely follow your hema's advice, and I wouldn't fear a blood transfusion, as it may save your life. If its an iron infusion you're talking about, those are easy peasy!

Please keep in touch. Your care will help us all to learn more what to do if we are confronted with the same decisions.

Thank you for your response.  It was an iron transfusion which I have heard hurt and are really awful, but you've made me feel better.

Thanks for your post, I won't wait I'll go back to the Doc this weeK!

I have had two iron infusions and it didn't hurt at all. They have to put an IV in - so there is that normal 'poke' ... But the infusion itself didn't hurt either time. 

Just googled "low red blood count." There are numerous reasons that you could have a low count. There are a number of certain minerals you should get tested to rule in or out the cause. Do it before the blood transfusion, so you can address the problem and not cover it up. You will recognize some of those minerals that many DSers supplement with, some we naturally malabsorb.

Thanks for your response, I googles that as well and it scared the hell out of me!  The Doc thinks it's due to the DS, but since I do supplement that concerns us.  Thanks!

 

I've had several iron infusions, and only had one bad reaction. The nurse set the IV drip too fast, and it infused in an hour instead of two. I ended up with nausea, and chest pain. That was the only time I ever had any negative effects from it. Overall, it's a very simple procedure.

I had iron infusions for 2 years in a row after DS surgery (1 a week apart). No pain, no side effects, nothing. If you have to have it done, ask about Feraheme. That infused quickly and easily. I am waiting for a reply from my primary doc about another round of iron infusion in order to keep my iron up for my total knee joint replacement surgery coming up the end of this month. Good luck.