Quick update

Since my last post I've been very busy. I'll try to give a quick update. I use a CPAP machine at night to keep my O2 sats from dropping. I had a EGD and botox upper endoscopy to improve my gastroparasis symptoms and a follow up gastro emptying study which sadly did show no improvement with my gastroparasis. I had a left/right heart catherization and biopsy which showed no signs of rejection. I have attended a few heart and lung transplant clinics. I've also had a couple ER visits for severe migraines.

I have had some pretty exciting things happening. I was invited to attend Patient Day at Edwards Lifesciences. It was a neat experience. I met many of the staff who help build the tools used for heart caths, artificial heart valves and other equipment used to help prolong life for people with heart disease.

I was part of a panel for patients and their families to share their stories and answer questions. It was really inspiring to hear others' heart experiences.

Levi and I flew to Palo Alto for my 18 month check up with Stanford on November 11th. I can't believe it has already been a year and a half since my transplant. At Stanford I got to see one of my favorite pulmonologist, Dr. Chhatwani, and my transplant coordinator, Ellen. I love Dr. Chhatwani. When I was at Stanford I always felt comforted when she was around.

I've never liked winter, snow or cold. Whenever I've tried dressing warm and going sledding or other winter outdoor activities I would just freeze. Within minutes of going out in the cold I'd start shivering and my muscles would tense up so tight that I would get knots in my back. My lungs would ache with every breath I would take. I would ride down a hill and it was so hard to walk back up that by the time I'd get to the top I would have a headache. I hated it.

The other day we had a big snow storm come in and I put on Levi's snow pants (because I've never cared to own a pair) and told Zoe to dress warm because I wanted to give sledding another try. We bundled up warm and headed down the street to a nearby hill.

I had so much fun. My body was able to keep the heat in and stay warm. I actually got hot. I was able to climb up the hills without having to stop to catch my breath. It was the weirdest feeling to breath and climb at the same time while in the cold. We laugh so hard and kept sledding for a while. We enjoyed sledding so much we accidentally broke our sled. After we got back I went online and bought myself some snow pants and a new sled. I am looking forward to more sledding trips. I never thought the day would come when I would be wishing it would snow so I can go sledding with my favorite girl.

Not a day goes by that I do not think about my donor and their family. I do not have the words to express my gratitude and appreciation to be able to continue life on this earth.