Discussion Forums > Thalassemia Major
Poll: Blood Transfusions
Poirot:
--- Quote from: Danielle on February 12, 2006, 01:56:28 PM ---I have been seeing doctors about my spleen, and we've been talking about removing it, but I want to make sure it's really necessary before its done. :sadyup
--- End quote ---
Yeah, it is a bigger surgery than having your gall bladder removed (although, your story was a pretty fearful one) - and, recuperation takes a while. But, if it is enlarged, then taking it out is probably the best decision.
The other thing that having an enlarged spleen does, quite weirdly, is that it makes your bones thinner and weaker ... this is because the marrow tries to produce more cells, as the spleen keeps clearing them out. Quite a vicious cycle :(
You could look at a hyper-transfusion regime to reduce the spleen ... ie pre-transfusion HB of at least 11-12 gms. But, then you have to deal with the iron. :(
Hobson's choice .....
Danielle:
Yeah, it's a hard decision. I already have Osteoporosis, so I don't need my bones getting any thinner than they already are. :(
I don't mind the surgery itself, because I've had plenty of them. I've had two major abdominal surgeries already, so one more won't be a big deal to me (besides the pain lol). :dunno
I actually wish I could find out how well I can live without it. Does anyone know if the life expectancy of a Thal is the same when they don't have their spleen? Is it any shorter? You can become septic very quickly without a spleen, and I'm very worried about that. :sadyup
Does anyone know how "big" is big, in centimeters? My spleen is 14cm, and I've been told that's pretty big. However, I've also been told that it's not big enough to need removal. I'm so confused. :huh
Someone enlighten me! :wah
Poirot:
--- Quote from: Danielle on February 12, 2006, 02:52:21 PM ---Yeah, it's a hard decision. I already have Osteoporosis, so I don't need my bones getting any thinner than they already are. :(
I don't mind the surgery itself, because I've had plenty of them. I've had two major abdominal surgeries already, so one more won't be a big deal to me (besides the pain lol). :dunno
I actually wish I could find out how well I can live without it. Does anyone know if the life expectancy of a Thal is the same when they don't have their spleen? Is it any shorter? You can become septic very quickly without a spleen, and I'm very worried about that. :sadyup
Does anyone know how "big" is big, in centimeters? My spleen is 14cm, and I've been told that's pretty big. However, I've also been told that it's not big enough to need removal. I'm so confused. :huh
Someone enlighten me! :wah
--- End quote ---
You may want to take some calcium supplements if you already have some problems with your bones.
You don't mind the surgery?? Apart from the pain?? Excuse me for my ignorance, but I thought that was the big deal about surgery. The pain and maybe, the post-surgery complications ??? :biggrin
I had my spleen taken out abt 18 yrs ago ... so have lived half my life without one. Not a very big deal, if you ask me :biggrin
Re: infections, you take the pneumococcal (I think) vaccine before you undergo surgery, and then take prophylactic pennicillin life long. Easy peasy .... :biggrin
But seriously, I think I have felt much better after my spleen was out - my quality of life definitely improved (higher energy levels, no worries about getting a spleen rupture from an accident, less of being a vampire!)
14cms is big - normal is abt 3-6cms, if I remember correctly. But, mine was even bigger when it was taken out.
Don't know if that helps ???
Danielle:
lol Nooo, I just meant that I wasn't afraid of the surgery. 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. :(
As for the calcium supplements, I've been taking them. I've tried taking Fosamax, but it caused severe musculoskeletal pain, and I couldn't walk for a week. :sadno
I'm glad you are doing fine now without your spleen. I wish that I was able to have a guarantee that I wouldn't need as much blood anymore after getting it taken out, because if I'm going to get just as much blood, I'd rather keep it. The only thing that bothers me is that I get a very uncomfortable feeling after I eat on that side, because my stomach pushes up against it. :(
Thanks, Poirot. Your info was helpful. :)
Prince:
I go for BT once a month. Earlier it used to be 20 days (About 2 yrs ago)
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