5-15-12/Creatnine Stabilizing?

I was at Yale yesterday. My creatinine is down to 2.0, from 2.1 on Thursday. Better, but still not great. In the meantime, my Prograf levels are still high – so they lowered my Prograf dosage (again) as that can explain the elevated creatinine. Since things had improved, even slightly, they did not do a biopsy.


I think this is one of the hardest parts of the whole process; the ups and downs. It’s not so simple. It’s not like you get the transplant and things are back to normal. There is a whole new “normal” that you have to learn.


A few positives however – and some challenges that come with them.


First, last night was the first time since the surgery I slept in my own bed, with my own wife, and my own dogs! It was awesome. I have been sleeping the guest room because of risks with healing/open wounds and dogs. We didn’t have the heart to kick the dogs out the bedroom – they have been sleeping on the bed with us since they were puppies. Besides, they have been freaked out enough with me hobbling around and having tubes sticking out of me etc. I am hobbling less – really moving quite well actually – and everyone was thrilled to have me back in the bedroom again.


Secondly, I have been cleared to eat out! We went out to lunch after leaving Yale. That was pretty cool too. Was getting sick of frozen food. They also said I can have fresh vegetables if I soak them in 1/2 water and 1/2 vinegar first (assuming I can’t scrub them). Some fruits are difficult to scrub – lettuce, broccoli, etc. So, tomorrow, I am going to have salad! This makes it much easier to get back on my diet. I have gained back 5 pounds since surgery. I have been sitting around and the steroids made me hungry. In 4-6 weeks I can start exercising again – that will help. They also lowered the steroids to my long-term dose. Today was the first day on the new dose, and I felt much less hungry.


Finally, I have started doing some work. I am not officially back, even part-time, until June, but I am bored out of my mind and feeling somewhat useless. It’s good to have something meaningful to do, but I am taking it slow.


Maria freaked out because today I worked 3 hours or so. That’s the most time I’ve spent in a day since the surgery at my desk period, certainly the most working. She’s afraid I am going to push too hard.


Frankly, the problem I am having is not doing too much because I feel good (i.e. lifting heavy objects, etc.). The pain is 90% gone and that’s when they said I am most at risk. I can still do damage, but feel good. I am trying really hard to listen to my body. I took a nap today and only worked 1/2 hour at a time or so. I am trying to go slow, but want to do much. So it’s a balancing act, but a better one to have then sleeping 18 hours a day and trying to cram everything into 6 sick-filled hours.

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