I have so much to share but not a lot of energy. After two days of 14-16 IV bags (I lost count) of a variety of antibiotics fed into my veins, I am home. When they agreed on a specific antibiotic, which can be taken by mouth, I was able to be released from the hospital Monday afternoon.
I am home. It is going to take time to recover.
The internal medicine team, who were in charge of my life in the hospital, believed I had pneumonia separate from my ILD. Dr. K. came by yesterday morning and said she believed that it was an exacerbation of my disease. I believe her. She is never wrong! We are meeting a week from Wednesday so she can listen to my lungs and we can talk about what this all means going forward.
It was scary. I could not stop coughing. I could not sleep because of it.
I know most sick people are not in good moods and probably scared so I tried to maintain my humor and remembered to be kind to all the staff in the hospital. One of the ER nurses loved our humor and I made him laugh a lot while we waited for tests to come back and for the docs to make their decisions. He liked us so much that he worked the phones and got me a private room. Earlier I had asked for a manicure and a massage and a fine steak dinner when I went up to a room. When he came back to us to say he scored the room, I asked, "But, what about the view?" He laughed and said, "It is there along with the manicure, massage and dinner. Oh, and cocktails." Actually, it was a beautiful room with views of the tree covered hills. It made a huge difference to my comfort. I can never thank him enough.
It was also interesting that he found the room on the floor for liver, pancreas, and kidney transplants. I was the only non-transplant person there. These were very high level nurses and I had such excellent care. As one said, "We don't see a lot of your type around these parts." It was a blessing to be there. I had deep conversations with respiratory therapists at 2AM, hugged nurses who were leaving their shifts and had a deep discussion with a young male assistant who had an autistic son. He opened up and was able to talk about it. Later, he would come in just to make sure I was comfortable and would want to do anything for me. He was teary when he hugged me goodbye yesterday.
What I learned was to ask questions of all the people who came through my door: Do you live in the city? Do you have children? How old? Just with those simple questions, each person opened lives to me, their struggles, their fears. It was really remarkable. Each told me I was their favorite patient. I didn't demand anything. I thanked each person every time they were leaving the room. I really appreciated their hard work and dedication.
One of the student doctors working my case said, "You are amazing. You are so in charge of your care and do everything you need to do. We never see this." And isn't that sad? They were amazed that I knew so many of my past PFT and blood test numbers. There were more amazed that I knew and understood all my medications. What also helped so much was that I brought along a list of my current medication and the reason for taking each one and a list of all my past illnesses and hospitalizations. The only other thing I wish I had brought with me was my family health history going back five generations. Next time.
As patients, we are in charge of past knowledge of our care. We need to do our part by taking care of ourselves, eating well, sleeping well and exercising everyday. That is our job. The doctors will put more of their time and energy into our case if we do our part.
It is good to be home.
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