Got demoralizing news yesterday. The surgeon won’t reduce my Prograf. I have been tolerating the sides and the thought of the potential for long term damage with the clear idea that once I made it to a year, the dose would be lowered and danger averted, and sides minimized. That hope is now shattered.
I guess a lot of people would think getting a disability check and laying around all day is a good enough life, but not for me. I don’t see the point in dragging things out if there is no good quality of life.
Maybe this life is good enough for some, but unacceptable for me. Uselessness is not good enough. I feel a little bit like I have been baited and switched — the carrot was out there of eventual near normal life after a year, and it isn’t happening.
“Just now f—— coming” doesn’t satisfy me anymore. I am tired of being tired, I am tired of the fatigue.
What I am really f—— tired of is people walking up to me and telling me how good I look. I suffer constantly and feel like s—, but I guess that doesn’t matter as long as I look good to them so their illusion of well being isn’t made uncomfortable by having to acknowledge someone is struggling.
This post is closed for comments. I don’t want to hear any bromides or touchy feely b—s—. Don’t call me either. This pathetically petty pity party doesn’t need any guests.
Now I have to recalibrate hope to the idea that with no relief in sight from the transplant side of things, it will be at least another 36 weeks before I can expect any improvement when the interferon treatment ends. Krishna give me the strength.
By that time I’ll be so f—— old even normal won’t be normal anymore.
Word of advice: if you get a transplant, kiss your surgeon’s a– every step of the way. If you ever get on the s— list and there is some gray area decision to be made, bear in mind that the surgeon is judged mainly by 1 and 5 year survival rates and not your quality of life or long term side effects like lymphoma, diabetes, hypertension or kidney failure and has the power to emphasize which criterion is most important.
Once you pass the 5 year point, long term adverse side effects don’t count against the surgeon.
Keeping the dose high will be better for the surgeon’s stats, and worse for the longterm side effects.
Okay, the choice today was to not post or to vent. Perhaps not posting would have been a better choice.
Oh yeah, and Liverpool lost.
