Hello,
My name is James D. Gray.
I spent one more day in the hospital after having the tube removed. Some family had come to visit me as I was waiting for the staff to finish discharging me. With my bandages on, I still wasn't allowed to shower for another day while at home. Despite all the frustrations and pain, I was relieved that I would be going back home anyway. The first few nights in my own bed, I struggled to lie down and get back up. I even once accidentally fell onto my bed. "Ouch!" The pressure of the water in the shower was like being stabbed when it hit my back or ribs near the affected area and I couldn't lean back or forward to wash my hair. I did get a few pictures of my incisions, once I took the bandages off. It wasn't pretty.
While I waited again for the results of the pathology, I got to spend some time with my friends. I walked really slow and had a cane to assist me but my friends helped a lot by driving and having a comfy chair for me. We once joked about who needed the chair more, either me or my pregnant friend. She said she had a baby and I said my lungs have babies. I was already the oldest person in my group that met once a week to play games and fellowship but now I could hardly move and used a cane. They started joking that I'm the old cripple. I think all the jokes helped me feel better about the situation. As you can probably imagine at this point, everything was hard to do and hurt.
The hospital called to tell me that they needed to transfer my samples to another doctor at a hospital with more resources and equipment. This started another series of confusing events, with no one being able to determine what type of cells were in the sample. Even with a bigger section taken from my lungs, they stated that there was still too much necrosis. Speculation of my immune system attacking my lungs, from the idea that I had an autoimmune disease, started going around. At this point I was too tired and frustrated to care about anything other than getting an answer. I had gone through too much to have people tell me that they still didn't know anything and I had to tell people again, after months of waiting, that I still had no answers. I traveled far to talk to a doctor at another institute, just to see them scratch their face and give me the same lines about how having more symptoms of something would help.
Many months of this passed and a decision was made to send me to NIH, rather than trying to treat me without knowing what they were treating. The closest they could guess was something called Pulmonary Lymphomatoid Granulomatosis. Treatment for this would have been a risk to my heath and ability as an artist, as it would have made my fingers numb for a while as well. I couldn't think of a reason for them to send me so far, just to be examined. I begged that they just look over all my other test results and samples that had been taken earlier over the last year. Though no one could explain to me exactly why I needed to be there in person, I agreed to go when I was informed that NIH would reimburse me for my travel expenses.
Reluctantly, I agreed to attend my appointment in September 2017. It was one year after all this had started and It would soon give me the answer I was seeking but not before many more annoyances and troubles.
to be continued
My name is James D. Gray.
I spent one more day in the hospital after having the tube removed. Some family had come to visit me as I was waiting for the staff to finish discharging me. With my bandages on, I still wasn't allowed to shower for another day while at home. Despite all the frustrations and pain, I was relieved that I would be going back home anyway. The first few nights in my own bed, I struggled to lie down and get back up. I even once accidentally fell onto my bed. "Ouch!" The pressure of the water in the shower was like being stabbed when it hit my back or ribs near the affected area and I couldn't lean back or forward to wash my hair. I did get a few pictures of my incisions, once I took the bandages off. It wasn't pretty.
While I waited again for the results of the pathology, I got to spend some time with my friends. I walked really slow and had a cane to assist me but my friends helped a lot by driving and having a comfy chair for me. We once joked about who needed the chair more, either me or my pregnant friend. She said she had a baby and I said my lungs have babies. I was already the oldest person in my group that met once a week to play games and fellowship but now I could hardly move and used a cane. They started joking that I'm the old cripple. I think all the jokes helped me feel better about the situation. As you can probably imagine at this point, everything was hard to do and hurt.
The hospital called to tell me that they needed to transfer my samples to another doctor at a hospital with more resources and equipment. This started another series of confusing events, with no one being able to determine what type of cells were in the sample. Even with a bigger section taken from my lungs, they stated that there was still too much necrosis. Speculation of my immune system attacking my lungs, from the idea that I had an autoimmune disease, started going around. At this point I was too tired and frustrated to care about anything other than getting an answer. I had gone through too much to have people tell me that they still didn't know anything and I had to tell people again, after months of waiting, that I still had no answers. I traveled far to talk to a doctor at another institute, just to see them scratch their face and give me the same lines about how having more symptoms of something would help.
Many months of this passed and a decision was made to send me to NIH, rather than trying to treat me without knowing what they were treating. The closest they could guess was something called Pulmonary Lymphomatoid Granulomatosis. Treatment for this would have been a risk to my heath and ability as an artist, as it would have made my fingers numb for a while as well. I couldn't think of a reason for them to send me so far, just to be examined. I begged that they just look over all my other test results and samples that had been taken earlier over the last year. Though no one could explain to me exactly why I needed to be there in person, I agreed to go when I was informed that NIH would reimburse me for my travel expenses.
Reluctantly, I agreed to attend my appointment in September 2017. It was one year after all this had started and It would soon give me the answer I was seeking but not before many more annoyances and troubles.
to be continued
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