Bloood exchange's

[mzdonz]

I have sickle cell anemia, Am 37, I've had 2 strokes, and i now have blood exchanges every 5 weeks because of the strokes. Does anyone else have blood exchanges? and how are you coping with them?

[rondalovesb]

My 9 year 9th son has them every 4 weeks, and he's doing great. No crisis since 2012. He hasn't even needed any pain meds.

[Della30 in reply to rondalovesb]

I have blood exchanges every four weeks through a porthacath. I just had one yesterday. I had a mini strike a while ago. I manage them well, I feel it fits into my life and I always have it on Friday so I can recover for work for the next week. I have had some vasovagal reactions which can be frightening but in all am blessed

[Bluebells in reply to rondalovesb]

Does your son have a port!

[SunbeamC]

I'm in my fourtees and I have Red Cell Exchange every 6 weeks, I've been on this program over 10 years and I must say it helps allot for me. I have noticed now the older I get and a week before I'm due for my next exchange I'm getting a lot of headeche and joint pains.

[Bluebells in reply to SunbeamC]

Wow,my daughter is experiencing the same thing. Make sure your iron levels are checked!

[Caculao]

So my son has being having a blood exchanges every 5 weeks too and since he began doing it we have noticed that he has been better now. He has 15 years old

[Bluebells]

My daughter has blood exchanges every 4 weeks. Sometimes she skips a month. Consequently, there will be a crisis. It is difficult for her because she still asks "Why me?". I feel so guilty sometimes!!!. I should have been more careful about my mate. Do you have a port? My daughter refuses to get one. The exchange is done in her groin. Eventually, that vein will collapse. I am so worried. How have your exchanges been?

[Della30 in reply to Bluebells]

I used the groin for a couple of years till they all became scarred. For me the port is easier compared to the trauma every time with port. Have your daughter meet someone with a port or be shown how small the port is. It has so many advantages over the femoral lines - the best is not having to wait or change into a gown or shave or have radiation over your body to see if the line is in the femoral line. Please stop blaming yourself, apart from the constant and unpredictable pain I think we are just amazing. It's a joy to see us pain free even for a couple of hours or days. It's life but don't let it bring you down. Do the best you can for her and let her believe that she is amazing and can anything she puts her mind to. God bless you both.

[Bluebells in reply to Della30]

Thank you so much! Your reply brought tears to my eyes! You hit home in everything you said to me!!! I will let my daughter read what you said. GOD BLESS YOU!!😇😇😇

[Stephsteph92]

Whats it like having a portacath, ive been having femoral lines put in for my exchanges but its been quite diffficult and so now the suggestion is portacath - i am open to it but would be cool to hear others experiences.

[Della30 in reply to Stephsteph92]

No nonsense and straight forward to put it simply. No fluffing around and extremely convenient. Some pain to get the needle in but nothing compared to the pain we through. It is worth it. God bless

[Bluebells]

My daughter is 34. She started getting blood transfusions 5 years ago. For the most part she is OK between exchanges,however there are times between exchanges when she still has to go the the Infusion clinic for IV pain medication. I pray to God above that there will be a permanent cure for this horrible disease some day!!!