Tuesday July 6th and Wednesday July 7th

We had a great 4th of July weekend at the Hood Canal. I had no transplant appointments on Monday.

Tuesday, first I had a lab blood draw. Then, I had a physical therapy appointment. She took a lot of measurements of how far I could bend things. She also tested my strength. Next, I had another meeting with the pharmacist. She went over all my medications, what I needed to get refilled, and explained the meds I would be taking after the transplant. Then, I had the Food Safety and Managing Care At Home class for transplant patients and caregivers. Next, I was off for a CT chest scan. The pulmonologist ordered this after our consult to see if there was any residual scarring on my lungs. My last appointment for the day was an oral exam. The dentist and hygienist took a look at my mouth and said everything looked great. He also explained the complications that can occur in the mouth as a result of transplant. The main one is mucositis. This is sores in the mouth that make it hard to eat and are very painful. It is treated with patient controlled morphine, salt water rinses, and lidocaine swish ("magic mouthwash"). Also, a lot of patients get chronic dry mouth.

Wednesday, I was only supposed to have one appointment. I got a call in the morning to see if I could come early for a lab. A little while later I got another call to see if I could come in even earlier for a MUGGA scan. I went in early and got my first MUGGA scan. This is a test to check the function of your heart. First, they pull some blood. Then, they take that blood and add radioactive isotopes. They inject this blood back into your port. Then they scan your heart for 30 minutes. Next, I met with the transplant doctor and nurse to sign consents. I signed...so no going back now. This is also a time to get all of your questions answered. I asked my nagging question...why do I need to do this??? Well, I didn't ask exactly like that. The doctor explained to me that my disease is very aggressive and is very likely to come back. The transplant may offer a cure...is surely increases the chances. He also explained that since my disease is very rare (t-cell) and less than 500 people in the US have this type, a transplant is recommended for the first remission.