Should I get my spleen removed?

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Should I get my spleen removed?
« on: May 05, 2020, 12:32:39 PM »
The doctor at the transfussion center has been pestering me to get my spleen removed for around two years. I initially wanted to do it but then decided against it, thinking that It's just not worth removing my spleen (Definitely wont do it too soon with the quarantine and all going around). I've been told by many other thal patients that did go through this operation that they regret it, and they eventually , after a few years, regressed to coming in ever 2-3 weeks regardless of having their spleen removed. It's got me feeling doubtfull and conflicted regarding whether its actually worth it to consider operating.

Here's some data:

HB value i usually come in with: aprox 8 hb. sometimes if im lucky 9, or sometimes if im lucky its higher 7s.
hb value i usually out out with : higher 9s, possibly 10. I haven't gotten a 11 or more hb reading in quite a while.
My spleen analysis show that my spleen is NOT enlargened (this is one of the main things that made me want to postpone to operation)

I also should mention I come in for 2 blood bags every 2 weeks.


I've been thinking that I have been ignoring my thal issue for far too long, and haven't really been supplementing with anything. On top of that, I have a pretty bad sleeping schedule.

Do you think that , with proper supplementation, and the new REBLOZYL drug that will come out, I will be able to raise my hb levels good enough so that I wont requiere this surgery? . Thanks for reading this. Would especially love to get andy's opinion on this...

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Offline Nomad

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Re: Should I get my spleen removed?
« Reply #1 on: May 06, 2020, 10:34:25 AM »
I would wait and first give it a try with Reblozyl. My spleen is enlarged and that is what i definetlywill do!
Before making a move like that...
Please note that your pre transfusion levels are way too low.

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Offline Andy Battaglia

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Re: Should I get my spleen removed?
« Reply #2 on: May 14, 2020, 03:55:14 PM »
I would not recommend having the spleen removed. In addition to the fact that removing it seldom gives a long lasting effect of lowering transfusion requirements, removing the spleen also creates the conditions where blood clotting becomes more of a danger to the patient. Definitely give Reblozyl a try when you can access it. I am getting very good reports lately from patients using it, and I would say it is cutting blood needs in half if not more.
Andy

All we are saying is give thals a chance.

 

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