Hello all -
I'm approaching my 1 year anniversary of my kidney transplant at the end of this month.
Everyone told me how great I was going to feel not being in renal failure so I've hung in there thinking it's going to get better "soon" . But that "soon" never seems to happen. I wake up every day after a solid 8 hours of sleep, incredibly stiff, nauseous and with terrible gas like pains (that are actually nothing as it turns out since there is no resulting bm or whatever - sorry for the tmi) But I work full time and have to push through it.
All day at work I'm freezing to death since after the transplant, I'm unable to regulate my temperature for some reason. Then for about 15 minutes each day - or any time I expend any physical activity (moving a 20 lb box by pushing it across the floor, picking papers up from the floor, loading the copy machine, walking at a brisk pace but not so fast that it causes me to feel breathless), I become embarrassingly overheated. My face turns bright red, I break out in hives down my neck, etc.. It's not menopause, I don't know what it is. But it's just my upper torso that's affected
But the worst thing is the amount of shear exhaustion I feel all the time. My body aches all over like I'm getting the flu, with throbbing in my joints. This happens every single day.. I feel so weary that I feel like I'm moving under water, my arms and legs feel so heavy. I never felt this bad even at a GFR of 9 and creatinine 5.
I'm not overweight at all, but I have zero stamina When I was in kidney failure including the months leading up to my transplant, my husband and I single handedly renovated our entire kitchen ourselves,, down to the studs and sub floor and I had enough energy for that.
It's making me feel depressed, because I feel like I'm not living the life I should in honor of the man who was perfectly healthy but chose to donate a kidney to me a stranger. I know he'd feel bad if he knew I wasn't feeling better. I literally have no energy to do anything, not even walk my beloved pup.
Is this typical for everyone and if so, why? I have not had to take prednisone as my post TX protocol. I take 8 mg tacrolimus(Prograf generic) per day, 4 mg in the am and 4 mg in the pm. I take two 325mg myfortic am and two 325mg myfortic pm. Once a day I take baby aspirin, Bactrim and the lowest dose of clonidine at bedtime and very early morning. Will I feel any better when they decide to lower my tacrolimus? All of my blood tests have been perfect for the entire year except for the last 3 weeks where my tacrolimus level has gone higher (but not over the line), my GFR had dropped and my creatinine has gone up - again, not crossing any lines but definitely different from the others.
If this is the life I can expect post transplant, then how do you all deal with it? I'm missing out on living because I just want to lie down all the time :(