Cathy's Blog for Tuesday, October 12

Last night we lost one room-mate and gained another one. At 11:30 PM, the new room-mate promptly turned on the TV. It was a rough night. The room mate promptly turned on the TV. And, so it went. The “chair bed” for family, (and I use the term loosely) should be re-thought. It is a “lounge type” chair and
will not lounge once you sit into the chair. One of the care partners from the night before brought in 3 pillows, one for me, and two to put between the “chair bed” and the red bio-hazard trash can in the restroom. I choose not to use the red bio-hazard trash can. So, Before 6:00 AM (the TV was back on at 4:30 AM) I had showered and dressed and had helped Kerry get ready. The head nurse stopped by and related that she had spoken with the head nurse on the morning shift and he was aware that we are in line for a private room. As Kerry told her, “it would be really nice to have quiet, especially while I am not feeling well.” As I have stated, yesterday was a rough day and night for Kerry, as well as myself.

Dialysis Early: They took him up to dialysis at 8:00 AM, but didn't get started until around 9:00 AM as there was a delay in his medication arriving. He is on the slow machine today, so I expect him back around 4:00 or 5:00 PM. After breakfast, I went up to dialysis to be with him, for awhile. After about 45 minutes, he sent me back down to the room to wait on our other “room.” He opted not to eat breakfast, but just have coffee. They have him on a heart healthy diet, (but no one knows why as he does not have heart problems, just preventative I guess) so he had oatmeal, juice, coffee and a banana and Jello. As I wasn't in an oatmeal mood myself, we kept the juice and banana and sent the other back.

One of the doctors who came in this morning was an internist on rotations. He was nice and listened to what Kerry said and listened to the answers to his questions. Kerry had printed up business cards with his book cover on the card along with his web-site and e-mail address. He is giving these out to the doctors and they seem interested in receiving it. He gave one to a doctor who came in and word is spreading about the card and book. Hopefully, this will be a way of helping others who may be going thru similar health issues. Also, it may be something that the doctors will read and maybe help them in treating the disease and hearing first hand a patients point of view. This is so important! And I can't emphasize that enough. After being told by 2 previous neurologists that it is all in his head and he is just stressed. Kerry has never been a stressed person.

Kerry has access to the Vanderbilt web-site and can go on and see his tests results. This is a great way for patients to be able to review their tests results, and be able to refer back to them after the doctor has reviewed them with the patient. Finally! Some of his blood work has come back abnormal. He found out this information this morning. Not badly abnormal, but still abnormal, which is different for a change. This may seem like a bad piece of information to be excited about, but to us this is “good” news. Hopefully, it will give a clue to what is going on.

They are now having to check his blood sugar and it was a little high this afternoon. This could be the results of the treatment and the Prednisone. We will see. To date they have replaced 300% of the fluid in his body. More on Wednesday.