One Year After Lung Transplant

I started crying at therapy last week. Not because I was upset, but because I was laughing so hard. Sabrina, the occupational therapist,  gave me a hammer looking device to work on wrist strengthening. She said pretend like you're taking out a sword. I said something about Game of Thrones while flinging my "sword" and then when she said "watch where you're swinging that sword" I lost it. I laughed so hard that there were tears. We were cracking up so bad we had to stop, but it was 530, so it was time to walk across the room to physical therapy anyway. I've been going to therapy in Leominster since last August, except for a 2 month gap in PT, which triggered a royal rumble between PT Plus, Unicare, and me. 

I can do a lot more with my arm and hand now and my strength has improved. After the stroke, when doctors would put two fingers in my left hand and say squeeze, I couldn't do it.  Now, I can squeeze with about half the strength of my right hand, and I can open and close my fingers with a decent amount of control.  And I can lift my left arm above my head fairly easily. 

Recovering from the strokes remains the biggest obstacle because the lungs are doing great. There are many things that I can do again that I couldn't do or had great difficulty doing. Every morning at school I zip up 3 floors to my classroom. I couldn't do one flight before. Every weekend Amanda and I go to the Planet Fitness. Before transplant, the recumbent bike's lowest setting was too difficult for me - I would be too out of breath. Now, I do it up to level 7. I've even used the stair master a few times. I can shower without using using oxygen, which sucked. Before I had to choose between being out of breath or dragging an oxygen cannula in the shower. Neither option was good. You exert yourself washing in the shower more than you think. Perhaps my greatest triumph, was flying. I hadn't been on an airplane in almost 10 years without oxygen. I had a few complications over the years with that. When my mother and I flew to Seattle, my oxygen machine malfunctioned. Before that same flight, they wouldn't let me board because of a paperwork issue, so I had to page the on-call doctor for an emergency intervention to get on the flight. Airport security would always pull me aside and question me and test the oxygen machine for explosives. So, when my family took an impromptu trip to Ireland in April to bring Johnny Murphy's ashes to rest on the farm. I was nervously excited to travel and try out the lungs on a plane. We flew out of Providence and I got there extra early to make sure I got on the plane without a problem. I was the first person to check-in and had no problems, except figure out what to do before everybody else showed up. Flying was hassle-free - I just had to wear a mask to keep the disgusting airplane air at bay. The trip was a success and it was the first time my mother, Mike, Mairead, John, and I were together in Sneem in about 25 years!  

Dinner in Kenmare

I recreated a photo from the 90s I didn't know if I'd ever have another chance to do so

In front of Skellig Michael

I documented  the transplant process and experience in a book earlier this year. Along with my co-authors Amanda, Mom, Christine, Mary, Julie, Joanie, Mairead, Mike, and Katie Dube we included all the shocking details. Breathe: The Story of a Family's Lung Transplant Journey is available on Amazon available in Kindle and paperback.

            

I made a lot of trips to MGH at first, but I see the transplant team monthly right now. My pulmonary function tests increased every time I went in, except the last time at the beginning of May. So, I may have peaked at around 90%, which is a revolutionary change from around 20% before transplant. I've also gone to see many other doctors, new and old. The ENT says I would benefit from sinus surgery, but transplant said to hold off for now. I've seen a neuro ophthalmologist and a doctor at the Glaucoma Center at Mass Eye and Ear. The stroke damaged the visual cortex, which led to my vision problems. Currently, my vision is blurry still, with gaps on the left side, and one eye is 20/50 and the other 20/60. So, I'm technically visually impaired, and considering it's been a year, probably will be for the rest of my life. I've also seen a dermatologist for my increased risk of skin cancer. I saw a GI doctor and had a motility study to measure the acid in my belly and test for acid reflux because that's bad for the lungs. That study was terrible. I had tubes shoved up my nose and down to my belly and had to keep it there for 24 hours. Transplant said to hold off on the esophagus tightening procedure for now. So, at the first sign of trouble I may be facing sinus surgery and esophagus tightening. About every 3 months they see me at the Diabetes Center. At fist, Dr. Gupta said I don't have diabetes and I should be able to come off insulin after the prednisone is reduced to 10/day after one year, but in February, when my blood sugars weren't ideal and my weight was 193 (the heaviest I'd ever been) she didn't sound as optimistic about getting off the insulin, and I didn't like the sound of that, so I made some changes.

She said I needed to try to lose weight, even though it can be difficult on prednisone. I weighed about 155 after surgery, so I was going to make some changes to my diet and try to lose weight. I stopped eating cereal and a Quest bar for breakfast, and just eat a Quest bar at 7 am and another at 10 am. Quest bars are good because they are high in protein and fiber, which I need because my pre-transplant colonoscopy indicated I needed a high fiber diet. For lunch, I stopped eating fluffernutters, and started eating turkey wraps. I also stopped eating a Charleston Chew or ice cream every night. So, with those changes, I've managed to lose about 10 pounds and get my blood sugars in more ideal ranges. It took hard work and disciplined eating. Hopefully, after my upcoming one year bronchoscopy I can go down to 10 prednisone and get off Insulin. We'll see.    

The school year is nearing completion, and I'm looking forward to actually being home this summer and not cooped up in the hospital. The last day is June 14th. The school year was pretty successful overall. It was different from past years. Transplant changed things, it changed me, I was different. When I went back to school, I was wearing a sling, I had blood bruises, and I was pale, so I told students what had just happened to me. Many students can be suspicious, fearful, and guarded, and when I told them my story - cystic fibrosis, transplant, strokes, and that I had a hard time seeing them - the walls came up. This year I didn't really connect with as many as usual. I connected better with the two full year classes. The students I had half year seemed to prefer distance. I assigned surveys and reflections and they reported they learned and enjoyed their time in my class. I don't blame kids for being guarded - it's some big life stuff to wrap your mind around. Next year, I just won't tell them and we'll see how that goes.      

The only thing we have planned for the summer is a trip to Europe. Amanda and I are going to London, Dublin, Belfast, and Sneem. She's never been and is excited to go, especially since she did her DNA testing and discovered she has ancestral roots near Stonehenge. 

      

I don't know where I'd be without my amazing wife. She helps me so much on a daily basis with things I can't do one-handed or because of my vision. She puts my eye drops in morning and night, makes us turkey wraps for lunch, does all of the driving now, does all of the cooking, folds all my laundry, cuts my nails and hair, helps me put on deodorant. and takes care of the yard. I'd be lost without her. I'm lucky to have the support and love that I do.   

One of the highlights of the year my night away from home since my 7 week hospital stay. The night after Thanksgiving my cousin Stacy booked the Lizzie Borden House in Fall River. We had quite the night ghost hunting and attempting to summon spooky spirits. Amanda and I slept in the murder bedroom, where Mrs. Borden was killed.Amanda insisted that we sleep with the lights on. She does so much to accommodate me - how could I not abide. It's fascinating to learn about the grisly murders that happened in that house, and we'll never know the truth about what happened. I guess sometimes you have to accept not knowing, and that truth can be elusive.

I mistakenly wrote "new" lungs in the original title. I think it's important to remember my lungs came from someone else and they're not actually new. My life was saved by someone who chose to be an organ donor, so please consider being a donor. It saves lives. If you watched Game of Thrones for the past decade you know that only death can pay for life. It is known.

I'm lucky to be alive today because I barely survived the operation last year. All those details are in the book. I'm blessed to have so many people that supported me since early last year. I'm thankful and appreciative. 

My life has taken a lot of strange and unexpected turns, aside from the obvious, the most stunning thing is we have four fucking cats now! I hated cats. I had convinced myself 3 cats was reasonable. Then two weeks ago Amanda is texting me at work saying she has a friend that needs a home for a kitten or it's going to the shelter today, and that she thought we should take it. Again, being flexible and open-minded, I reluctantly agreed. So, little Tormund joined Henry, Benjen, and Salem. Last night, I had one of them snuggled so far up my crotch I was having flashbacks of my colonoscopy. I allow cats to walk on the table during dinner. I don't know who I've become sometimes. I guess the only path to living is to embrace the present moment, let go of the outcome, and turn and face the strange.

Treats

Visually impaired keyboard featured