Discussion Forums > Thalassemia Major
Poll: Blood Transfusions
Richard:
Congrats on the baby Michelle. Hope everything turns out great!! :clap
Tarique Qureshi:
wish you a healthy and cute baby.
baal:
i am in same pos. as dani...
my spleen is xxl-large and the rest off the disstruction
work is doing cause off all the anti-killers in the unetis
(anti wra..anti kell and so one) but this must be normal after 2000
of bloodtransfusions...
however i hab a hb-level of 6-7 and go 2weekly for it.
sometimes i get 3units..but never helps a lot.
before 10-15 years thinks are better....
10-12 hb...4-5 weeks period..
panos
betathalpenpal:
I've had so many surgeries, that the only thing I'm worried about is the pain afterward, because pain meds don't work on me very well. It takes enough medicine to kill a horse to ease any kind of pain in me, and half the time, they need to use very strong doses of Fentanyl, Morphine, and Dilaudid to take the edge off. And abdominal surgeries are the worst. You can't do anything without being in pain. You cough, sneeze, laugh, breathe, and it hurts so bad. :(
Danielle:
I am a beta thal intermedia. I had my spleen removed when I was sixteen. I have had six severe infections in the past thiry-five years. I have briefly read that there are ways to limit/block off the spleen without removing it. If it could be saved, I think that I would find out. However, I did have hypersplenism and my HgB was 5. - 6. before they removed my spleen and after it increased to 8.2 - 8.6. The best measured day that I have ever had is 9.3. I don't and have not had transfusions except three times when I was critically ill. I don't know where the trade off is because there are plus and minuses on both sides. If you leave it, it will mass produce and destroy RBCs and if you remove it you risk the possibilities of infections.
I also have had my gall bladder and appendix removed when I was 30. I badly injured my leg in a motorcyle accident and about ten years I broke my ankle in a farming accident.
I have had the same issues with inadequate pain medications. The doctors look at like your crazy. For me, morphine is like taking baby asprin. It doesn't do much. I think Dilaudid is a step above Morphine and it does takes the edge off for me. On a good day it lasts about two hours. On my last visit to the hospital they rotated Didaudid with Tylenol 3 every two hours. This is the best that it ever worked.
Have you ever heard of other beta thals having the same problems with paid meds? Also, if you don't mind sharing, who is your hematologist?
Thanks to Andy and you for your hard work keeping tihs site going.
Barry
Danielle:
Hi, Barry! Thanks for the info. I really appreciate it. :biggrin
I am trying to hold on to my spleen for as long as I can. That's why I keep stalling. :(
As for the pain meds, I have heard many Thals say that they have a tolerance for them. It might have to do with the fact that our liver is so used to medication, from being on Desferal and other things practically our whole life, so it doesn't metabolize meds the way it should. The amount of Morphine/Dilaudid/Fentanyl they need to give me to take even a small amount of pain away is enough to kill a horse. :sadyup
My Hematologist here in New York is Dr. Richard Ancona.
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