I Have Congenital Dyserythropoietic Anemia (cda)
i have just joined this website today , so im a little unsure of how it works of how i can get in contact with people who have my condition ( i don't like to use the word "disease" personally)
I am 22 years old , living in beautiful Australia , and have CDA ( Congenital Dyserythropoietic Anemia ).
I was diagnosed when i was born in 1986, when i was clearly not well... "normal" again i dont like to use this language. i was ... not "well" lets just say.
I have been transfusion dependent from the first day i was born.
I had a bone marrow transplant when i was 5 , but it didn't work I
ts hard for me to remember all my operation times, dates etc , as my memory is not what it used to be.
In or around 2000 i had my gall bladder removed.
In 2002 i had my appendice removed.
In 2004 i had my first myocardial infarction (heart attack) , then was in a coma for 4 weeks or so.
My hematologists and cardiologists put me on the Heart transplant list.
I have extensive iron overload , most of my internal organs ( kidneys , liver ) failed.
I was in rehab for 6 months of so
I went from a healthy size 10 weighing around 57kg to an emaciated 35 kg ( i am 5'5)
My ferretin level was extremely high, a level of 4000!! (normal range in around 100 )
I was on Desferal 24/7 durring my coma which brought my ferretin level down to 1000.* however , this dose not correspond to how much iron i had/have in my organs.
I learned to walk again, stand again, go to the toilet and all that jazz
I have been on Desferal since i was a baby and just recently came on to Exjade ( oral form) , which has saved me from being on cortisone to help with the awful heamatomers and edemas the Desferal left me with, all over my body.
My Doctors at the Alfred Hospital in Melbourne have been coresponding with a Professor in Germany , discussing weather or not i should now have my splean out .
They say it might hopefully bring my Hb up a point (10) higher.
My current Hb sits around 6-7 on a good month.
I now have One to two blood bags every 3 weeks over 4 hours each due to my cardiac history.
I was wondering if anyone could please give me some information , or better yet tell me about your experience having had a splenectomy. And offer your thoughts on wether i should go down this path.
I am currently thinking well, if it only brings my Hb up too 8 why bother!! , however it might eleviate the regularity of having to have a blood transfusion so often, and thus decrease my ferretin level and chance of iron overload again.
But what of the risks ? Like if i want to travel , can I go to asia? places like cambodia ? what of all the defense the spleen undertakes, will i get sick more often ???
Thankyou for taking the time in reading a bit about me
I would love it very much for anyone to give me some constructive feedback on my question
I am happy to answer any questions if there are any parent out there , with a child with CDA as i know it is very scary and very lonely if you have no one to talk to about your son/daughters condition.
I look foward to hearing from you