Nothing much to report today. A couple of close calls with the ostomy bag but both came out safe. Had an inhalation therapy treatment that consisted of about 15 minutes of breathing through a hand held device. I had to go to an isolation room for the treatment. I managed, barely, to get to the room down the hall using a walker but my legs are so weak from the bumped up steroids, plus me not keeping up with exercises that I had to brought back in a wheelchair. The treatment is for a particular type of infection that Dr. S says killed a lot of AIDS patients back in the day. One thing that I have been lucky with is that I have not had infection issues like many patients, especially one that have been here a long time do. Today Dr. S said that right now we need a plan, an attitude and some luck to get me out of here. I replied that he's got the plan and I've got the attitude. All we need is the luck. So far the diet seems to be working so here hoping that the luck holds out on that front.
Tomorrow is another photopheresis treatment day. That means I get platelets at midnight and then again at 3 in the morning. Always make for a fun night because I tend to wake up a few minutes before 12 and 3. Don't know why but I do. Hope you get to sleep better.
Boone
3 comments:
We know the plan is under the guidance of the best. I marvel at your upbeat attitude--you and your music will go far. Luck? I'll keep my thoughts to myself on that one but you are well aware of Kathi, your growing up family, your working family, and then some of us stragglers here on the fringe sending good thoughts and best wishes your way every minute of every day and night. Write when you can, exercise when you can, tease with the nurses when you can, and just be yourself at all times. You are moving in the right direction.
Don't be discouraged by the lack of exercise! One of the ladies whose miles I added to the 4 million mile club has survived a double lung transplant (both she and her sister got new lungs). She is now battling cancer, but did 8 miles for Bike For Breath in Foster City, CA, on a trike with her IVs in the front basket. My friend, Stacey, also a double lung transplantee, biked 18 miles. She has had so many pitfalls, but somehow isn't discouraged and gets back up. Rest, and get back up when you can. Enjoy the food, and whatever other miracles you receive.
Dare I say where I have come from? In February of 2012, I sat in my kitchen brooding over the fact that I could not decide which walker I should order. I had finally decided on the red one with a place to sit when i became tired and I needed the one with a place with a basket. My Dr wrote a prescription for me to do rehab for my gait. I was falling and because I have two knee implants since 1995 I neede help to stand. I laid the prescription aside, for later. Besides I needed cateracts removed from both my eyes and I had a burning pain in the arch of my right foot that hurt like everything when I walked. One of Mr Bobby's therapists came knocking on my back door. She is an OT and with her was a PT. They told me that they were opening the Re-hab clinic in our little town and it was just six blocks from my home. The PT asked for my prsacription which he hear d I had and started asking me a few questions. They knew someone who would pick my up for the visits as I had given up driving. They talked between themselves and announced that they had me down for an appointment on Monday. This was Friday. I sat there like I thought they had lost their mind. Didn't they know that I was decrepid and weak and almost ninety years old. I was thinking of which nursing home I would choose, not Rehab! One thing led to another and I said I would go only if I could drive myself, I would be independant or others would begin caring for me. I knew at that time the choice could be mine... it was my only hope. Now 18 montha later, I drive all over town and take myself to doctor check ups. I clean my house and take care of my four year old dachshund. I walk miles and miles for Boone and soon he will be walking for me to, "Stay with the Program, Bill".
Nothing like Small Town USA. This morning I worked out two hours without stopping from one machine to the next. The water at the fountain is wonderful as I build the strength in my hands and fingers. Can you believe I can now open my dishwasher [which I could not do before.] I could not push the button to shift my car with out two hands, I could not take the collar off my doggie. Life was miserble but now it is a piece of cake.
Boone, Keep on stretching those bands, the rest will follow. I just know it will.
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