Friday, June 4, 2010

Visit With The Tan Team

Today, following labs at 11:30 a.m., Kathy and I went to my first clinic visit post transplant. There was a chair in the room and the table. I asked Kathy to sit on the table and give me the chair. She laughed and told me she would. The doctor can in and asked "Who is the patient?" I stood up to face him. "There are no patients here," I said. "I'm the transplantee." We covered all the bases, from discussing emotional exhaustion to a transplant crop of never before experienced until transplant hemorrhoids. I explained that I am tired and wobbly when I walk but most of what I am experiencing is this 24 hour transition post 35+ day hospital stay to life on the outside including a change of life style, including diet. I am out from hospital food and responsible for myself.
"Usually we have a bone marrow biopsy on Day 28 post transplant but we are going to wait until next week on you," the doctor said. Great idea. I have no emotional strength right now to submit to a big needle into the bone aspiration. Grace for sure.
"So, what can we expect now?" I ask. "We are going to be on the look-out for signs of GVHD, graft vs. host disease and symptoms including; temperature over 100.9, or chills with or without fever, changes in the appearance of the central line site, such as redness, swelling, pain or drainage. Changes in the color or consistency of stool or urine. Appearance of a rash or itching on skin. New cough or shortness of breath. Nausea, vomiting, or diarrhea. Inability to take perscribed medication, new or different pain, any bleeding or bruising, headache or dizziness, change in ability to think clearly. These symptoms are considered 911 emergency for post transplant patients.
The conversation was so helpful and personable that I admitted to sleeping with Minnie Mouse last night. That means that while the discharging doctor said I had to have a care provider with me through the night, I went solo. Kathy had rested with the girls at the Pete Gross House and called me every three hours but she wasn't physically with me at the SCCA House over night. Doctor Peter Johnson got serious. "You have got to have a care provider with you," he admonished. "Post transplant there could be times when you get too ill, too fast to respond on your own. If your care provider finds you unresponsive she would call 911 when you may not be able to. Becoming unresponsive can happen in a couple of hours." "I hear you," I said. Kathy and I will still have to work out what to do tonight. I'm enjoying my quiet room. Solitude is good. More people in here, more bugs. But, we have come too far to get stupid now. And, the doctors are adament that a care provider is crucial, required and not an add on.
"You are doing great," the doctor said. "I am really glad to meet you. I heard about you having the hospital bed taken out of your room. I wish we could get more patients to do that. It is incredible that you have come out of the hospital without I.V. fluids. You should pat yourself on the back. Your absolute neutrophils have dropped below 500 to 470 but that is not unusual, counts of engraftment can go forward or back. You are doing great. You look great and you are one remarkable patient 29 days post transplant."
"Pat yourself on the back" is a doctor's order I need to explore.

By the time I we finished with the appointments, I was almost too tired to eat but Kathy and I stopped at the 2nd floor Bristo for lunch together. "Kathy, why am I making it through this? It is not my constitution, that makes this transplant successful. " "God loves you a lot," she said. "God loves us all," I motioned. "Our position has nothing to do with anything that I've done. Patting myself on the back is not the appropriate response." I thought for a while. "What is it Kathy?" I kept chewing and got so tired that I had to rest my head in my hands and decide to take the rest of lunch home in a take-out so that I could go back to the SCCA House and nap. Then, I lifted my head and looked Kathy in the eyes. "It has got to be prayer. So many people are praying me through this. The pray is the sway."

1 comment:

  1. Valerie, Your progress is so good, and I trust that you will take good care now and not get too eager to do too much too soon. I realize it has been a long time since you had much energy, but your writing shows your brain rests very seldom. It needs to do that, so give it a rest, and just BE! How wonderful that things are going forward. My thoughts are cheering you all the way. Tried to send a card and it returned to me. Will try again. Love, Joan