Poll: Blood Transfusions

Congrats on the baby Michelle.  Hope everything turns out great!! 

wish you a healthy and cute baby.

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

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

Hi, Barry!  Thanks for the info.  I really appreciate it.   

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.   

My Hematologist here in New York is Dr. Richard Ancona.

I go once a month

My spleen is 20 cm
My HB is never higher than 9.8
and I dont get transfusions
Im 37 and had my son 15 months ago
I was very sick in  pregnancy my hb was 5.0

Hi Guys

My wife is Thal Intermedia. Danielle, her spleen was 17cm. She had the surgery in India. Recovered very well, BUT, it did not help her Hb level.   . Doctors said there are rare exceptions when it does not help the Hb level. Surgery was done through traditional open method. Anyone looking to have a splenectomy should try to have it done laproscopy. Also, the longer you wait, and the larger the spleen the less chances of having the spleen removed through laproscopy.

Its been five years since she had the splenectomy done and several blood transfusions in 5 years. She is now in the USA. Daily doses of antibiotics and folic acid and fosomax. No major infections. Doctors in USA disagree with daily doses of antibiotics. Her doctor in the USA is from England and states that doctors from both countries have their reasons but he advised to continue daily dose of antibiotics. 

Nice to see Thal moms posting their experiences. We are thinking of having a child and this site offers us hope. . Doctors have told us it will be a high risk pregnancy. I do not have the thal trait.
We are trying Wheatgrass and will keep this site posted of the results. Her Ferretin is 475 right now.
Thanks and see you later.
Bharat

 

Dont worry I had a heathy thriving baby boy who is now 15 months old.
His father doesnt have thal...I was very tired with the pregnancy and very nauseous but I never threw up...The worse that happened is I had a small transfusion during my C section
The C section was not related toThalassemia.

for me i took every 2 wks & sometimes every 3 wks ,& my Hb pre transfusion  about 8 -9

Are you a Major, Eponine?

Yes I am. I'm from Singapore

for me it takes 2 packes for every 3 weeks my HB 7-8g 

I go every three weeks and my pretransfusion Hb is about 9-10. I'm trying not to be lower than 10. However, it's hard to find blood at that time when I need.

Is Michelle thal. major? If she is, congratulations then. I admire her courage. It's wonderful.

     I usually get transfused every 4 wks. with a pre-transfusion hemoglobin of between 9.7 and 10.9. I have intermedia and have just started regular transfusions 3 years ago, although it should have been much earlier because I have had much pain and health problems. I had my spleen out about 12 years ago at age 42. It was extremely big (20 cm.),and I was very ill. I couldn't walk 4 feet without being very short of breath. The doctor said my spleen was right above my pelvic bone when it was supposed to stop at the bottom of my ribs. I also have difficulty with pain meds. It seems I am sensitive to all drugs except pain medication. After my spleen operation, I was fine until I went home. They gave me darvocet or something like that, and I remember just lying on the couch for a week in terrible pain and just waiting like a junkie for my next pain pill, which didn't help that much. When my husband called the doctor to get stronger medicine, he said no.
     I did feel much, much  better after I recuperated, with my spleen out. Because I live in the rural midwest of Illinois, where no one had hardly heard of Thalassemia, I didn't start regular transfusions for another 9 years, although my hemoglobin would many times be 6.7. I had to travel to Oakland to see Dr. Vichinsky to get the medical help I needed. My hemotologist was never able to help me, even though I told him I would travel anywhere. I was so exasperated; I finally took my health care in my own hands and found Dr. Vichinsky, called him and went to see him.  Luckily, my brother lives near there. Dr. Vichinsky was the one who said I should have my spleen out, none of my doctors were able to ascertain if I should have it removed. I do not take any routine penicillin.
     Enough rambling.... For me, having my spleen out was a good thing. I think it gets to a point where it is really working against your body. Thanks for listening, Jean
         

I now go every 5 weeks with a pre transfusion HbG of 7 give or take.  Two units each time and I am exhausted as this is the 5th week.  I would actually try 6 weeks, but I'm not daring enough, but if I were to travel, it would be a carefully thought out option.

Jay