It's been a long while since I last posted and since then and after more struggling, I have finally been given the 'official' option to transfuse.
After so long of pushing for my doctors - more than one doctor I might add - to please help me deal with the impact of thalassemia on my adult life (chronic excessive fatigue that interferes with having a normal life, otherwise unexplained pains from fatigue, etc), I have FINALLY been given the okay to go for it if I wish to...
And now I find myself questioning my next step.
Should I or shouldn't I?
I say 'finally' because as a patient with Hemoglobin H disease (an intermediate form of alpha thalassemia), transfusion is seldom recommended as the go-to solution. Usually, HbH patients 'deal fine' with their thalassemia as I have been told by several doctors - some of them thalassemia specialists - and aside from minor life adjustments and some folate, HbH patients are no worse for the wear.
In my case, I have had a lifetime of chronic fatigue and a lifetime of pain from pushing myself too hard and as I get older and older, this fatigue and resulting pain interferes more and more with my life.
How is anyone to manage work if they're exhausted and/or in pain?
After hearing me out, I was finally given the okay to do a trial run on transfusion therapy and as the date nears for me to make my choice (my doctors and I are waiting for my application for a state-funded program to give healthcare aid to genetically affected persons to finish clearing) I find myself absolutely terrified and unsure of myself and my choice.
Part of my fear is that I am afraid that the transfusions won't do anything for me and all my pushing to get myself okayed for the treatment will be in vain and my doctors will then somehow look down on me with a, "You see, I told you so," attitude.
Part of my fear is that it WILL work and that I will realize what a difference it can make and will be unwilling to go back to my 'safer' non-transfused life. Understand that as a HbH patient, I have been told all of my life that transfusions were a no-go and something considered only when in dire straits and that being non-transfused is 'healthier' than being transfused.
Part of my hesitation comes from how much I feel like I have had to struggle to get my voice heard enough for me to get taken seriously enough so that -some- sort of option could finally be opened up to me. It took a lot of my time and voice and patience to get to this point and because of that amount of time and effort I took, I can't help but feel that even though I got the okay, everyone is still not fully supporting me in my decision.
Basically, I feel like I am being given my decision only because 1) I pestered enough for it and 2) I have told them that regardless of the cost (and it's absolutely horrible), I would be willing to do it.
Not because I NEED it and they agree that I NEED it.
Not even because they REALLY THINK it might/will help me.
But simply because they're giving it a chance because I asked for it enough and for no other reason.
I hate feeling this way and the last thing I want to do is jump into this situation - start transfusions - feeling like I made the wrong decision and that I am being offered the choice simply because I am being humored.
HELP!