Today was basically a MSK day. We left for the hospital on the 8:30 shuttle and it was a nonstop testing and waiting and testing and waiting kind of day. At times it can be frustrating when you are scheduled for an 11:30 appointment and they don't take you until 1:30. But then we have to remind ourselves how lucky we are that they ARE taking us. For example there are many people who would like to be patients at MSK but they did not meet the right criteria. I have talked to several people during our time here who told me they had to pull strings to be accepted as a patient.
Jimmy started out the morning having what is called a Pentamidine treatment. He is given a nebulizer treatment where he inhales a fine mist of medication into the lungs. It takes 20-30 minutes. Transplant patients are extremely susceptible to developing a type of pneumonia called PCP, pneumocystis pneumonia. Left untreated PCP can be fatal in a weakened immune systems. Back in the 80's when I worked on the AIDS floor at George Washington University Hospital, PCP was the number one killer of AIDS patients. Medications like Pentamidine has significantly made a difference in the prevention and treatment of PCP. It is now given routinely every month to transplant patients until they are able to take an oral form of the medication.
When we were done with all Jim's appointments and treatments we decided to skip the hour wait for the shuttle and took a cab back to the Hope Lodge. I made dinner and we turned in early. Who knew sitting around all day could be so tiring.
I remember also several men with AIDS in the early 90's that I visited as a volunteer who died of PCP. My favorite was Sergio who died so suddenly and quickly. I'm so glad they have this drug now! Debby
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