Home from Cleveland

[Guest guest]

I'm still wiped out but that is to be expected after being put through the mill and being inpatient for a week at CCF.

I'm on my first 12 hr day of TPN today. I was discharged by the home health nurse this morning on her first visit. I took charge and did what I knew how to do. I think I shocked the nurse. hehe It was a requirement of CCF that home health at least come even though I didn't need any assistance. I had an allergic reaction the first night of TPN in the hospital. The Lipids and Pepcid were removed and so far I've done well since.

I saw Dr. Cohen and he was excellent and personable.He was very excited that a brand new gene test is available for me. It's the OCTN2 gene-carnitine transporter gene. Thats the one I've been needing for so long. It's going to Horizon labs but it may be a long time to get the results. He also had me get the MNGIE and Creatine test done as well. He invited me to come back over lunch and be a guest for the neuro residents conference training. It was flattered and obliged. I was seated in the front of the room with all these doc's infront of me. It was done really well in a teaching/diagnosing fashion. Dr. Cohen called on one resident to do the medical history and another to do the physical exam. I wasn't to tell them anything that they didn't ask me or tell my Dx. The purpose was to see if they could diagnose a patient in 30 mins. It led to a very interesting conversation which I believe would have gone on for some time had I not had to leave for my gastro testing.

The gastro testing was very painful. Let's just say I was too small for the equipment normally used. The pending results are very abnormal according for my colonic transit study. I was given a pseudo obstruction Dx.

The sleep study was terrible. I wasn't able to lay down until 11:30 due to delays with getting me ready and all the equipment put on. It was an abnormal study showing REM obstructive sleep apnea.I only slept 49 %. It's not the type where you snore but I won't know the details until this next week when Dr. Cohen is back from vacation.

I was trained on how to self administer Forteo shots as well. I did ok but have site reactions and some bleeding afterwards which nobody can really explain. I've spoken with my doc. and the company that makes Forteo.

I think thats pretty much the highlights. Thanks for all your prayers!