THE BACKSTORY

So this is my first post and I will give a bit of the history of how I’ve ended up where I am today, facing double lung transplant. If you know the story, you can skip it.

In 2002, I got a bad cold that I couldn’t shake. It got deep into my chest and lingered for months. Soon, I realized I was having trouble breathing (sounds a lot like the Covid-19 we are all avoiding today).

I first noticed it when I was in Breckinridge, Colorado climbing up to a condo with my skies, a walk I had done 100 times with no problem. I had to stop and catch my breath I was so winded. I thought to myself I must really be getting fat and out of shape!

Two weeks later I was at sea level, walking on flat terrain and my good friend, Lex Alexander, asked me “what’s going on with your breathing?” I was huffing and puffing like I was climbing a mountain. I said “I don’t really know, but I’m clearly struggling.”

The next week I flew to Austin and went to go see Kimberly Patterson, my favorite acupuncturist. I hadn’t been there five minutes before she asked “what’s up with your breathing? You’re breathing like an asthmatic.” It was then I realized something was really wrong with my lungs.

Upon arriving back to South Carolina, where I had recently relocated, I booked an appointment with a doctor. After a checkup and answering a bunch a questions, she diagnosed me with adult onset asthma. I was prescribed an inhaler and told if I didn’t see significant relief in a few weeks, to come back. I saw no difference whatsoever in that time and was still short of breath.. My doctor was confounded and ordered a breathing test (PFT). When I went back in for the results she told she had made an appointment for me at MUSC, the big teaching hospital in Charleston with a pulmonologist and I needed to change my plans to keep the appointment. Not the news I was hoping for.

It started a long process of further testing that ended up with an open lung biopsy. It was then I learned I had developed Idiopathic Pulmonary Fibrosis (IPF).

IPF is basically scarring of the lung tissue usually caused by an outside agent. Black Lung disease is a form of fibrosis. People that work in silica plants develop fibrosis. I had worked my whole career in natural and organic foods, how in the hell could I have developed pulmonary fibrosis?!

“Idiopathic” means cause unknown. I could never find a doctor that really cared about the “why,” They only cared about treatment options moving forward. Understandable, but very frustrating to me.

I have my own two theories: my leading one is this was caused by black mold. My symptoms began approximately six months after moving into a small rental house in Pawleys Island. We were building a house and rented a a small place that hadn’t been occupied in over two years. We found out near the end of the first year the insides of the HVAC system ductwork were covered in black mold. A discharge vent was blowing right atop the bed. My gut tells me this was the probable cause.

Theory two is it could have been as a result of my first trip to East Africa in 2000. One very long day I rode in the way back seat of an open Land Rover for 8 hours over very dusty roads. I ingested so much of the Masai Mara I needed a 45 minute shower to get clean. Needless to say I couldn’t wash out what I inhaled that day. Masks were helpless in the wind and heat.

My symptoms didn’t start for almost two years after the Africa trip so the mold theory seems more plausible. Whatever the cause, I had already lost half of my lung tissue to the fibrosis by the time I realized what had happened.

I began a pretty strong course of steroids, oral and inhaled, that I took for two years. I couldn’t stand the side effects. I couldn’t sleep and my personality had changed. I was irritable all the time and just no fun to be around. My lungs had stabilized, so I against my doctors orders, I decided to wean off the drugs and see if I could manage the inflammation myself.

I found a pulmonologist in Pawleys Island, Dr. Tom Chandler, that agreed to follow me and order CT Scans and PFT’s twice a year and track my progress. As long as I remained stable, Tom agreed not to prescribe more drugs. Against all of the odds, I did amazingly well and the disease didn’t progress. I remained stable for 15 years! A few years back Tom confided in me that he thought there was no way I would last five years when he first met me. IPF is a nasty disease that typically progresses rapidly and there is no cure.

My annual checkups were always upbeat events where Tom would express his amazement and happiness at how well I was doing.

All was good, until it wasn’t. This past summer, while in Amsterdam, I started to struggle much more than normal. My breathing was becoming more labored, and I was feeling very lethargic. As much as I didn’t want to admit it, I knew something had changed.

After struggling to walk off a flight from Barcelona back to Amsterdam, I got back to my apartment and took stock of myself. My feet hurt like hell and I realized they were totally swollen. I had Fred Flintstone feet! My ankles had totally disappeared. When I went to take off my jeans, I could barely do so. My “slim fit” jeans had become “Skinny jeans” overnight! Both legs and my belly were swollen.

Knowing I could find any service under the sun in Amsterdam, I booked a Lymphatic Drainage massage for the morning. The therapist had been doing this type ofbodywork for 20 years a. After the session she said “my advice to you is to see a doctor, today.”

Being alone in Amsterdam, I made the decision to leave the next day and flew home. It was another brutal flight.

I saw Tom Chandler the next day and his usual jovial demeanor turned much more serious. After 10 days of taking the powerful diuretics he prescribed, I had lost 15lbs of fluid. I was peeing so much I couldn’t easily leave the house! After that slowed down, he ordered a heart catheterization test and that confirmed what he had suspected, that I had now developed pulmonary hypertension. PH is when the pressure in the artery between the heart and lungs is elevated because the heart is struggling to force blood into the lungs because of the fibrosis.

Tom said the doctors at Duke were the best in treating people with IPF and PH and he referred me there for a consultation. When I was finally able to get there six weeks later after being denied initially by Blue Cross, my hopes were to get some medication to help my condition. What I got instead was the wake up call of my life.

After a days worth of tests, I met with a pulmonologist there, Dr. Jordan Whitson.. He asked what my reasons were for coming to Duke. I replied I was hopeful they had a recommendation for medication that could help me. He looked at me stoically and replied “I don’t think you understand., You are already in the end stage of this disease. You’re a low flying plane that loosing altitude. You need a lung transplant. Furthermore, I don’t want you to leave this hospital without being on oxygen. You should be on oxygen 24/7 from this point forward.” Gulp!

I left the hospital with a big package all about Duke’s Lung Transplant program for some light reading that night. I got back to my hotel and after making a few calls, a beer and a cheeseburger. I dove into the details.

I never thought I would have a transplant, much less embrace it and look forward to it, but that’s where I find myself today. I see it as a chance, and my only chance, for a longer and much healthier life. I have no illusions about how difficult it will be. I understand all of the risks which can’t be minimized. I also know I ‘m incredibly fortunate to have been accepted into this program at Duke and plan making the most of it. There are some incredible success stories I’ve learned about since being here and plan on being the next one!

I have an incredible support team. Susie Stalvey, my partner and her 10 year old son Mo, have made the move with me and agreed to be my “my primary caregivers.” This is impossible to do solo, to the point Duke requires a contract be signed by the primary caregiver guaranteeing they will be with the patient everyday for a year. I’m incredibly lucky Susie and Mo willing to make this sacrifice for me. I will be forever grateful.

Susie and Mo enjoying some toes in the sand in Pawleys before the move to Durham

My daughter Emma is handling all of my bookkeeping, insurance, a various support functions like teaching me how to build this website. Molly and sweet Juliana are leading my “spirit team” and keeping me smiling and remembering why I’m doing this!

Emma, Molly, Juliana and me Thanksgiving 2019 in New Orleans

My dear friends Lex and Ann Alexander have provided a house for us and have smoothed our path into Durham in every possible way. Ann is even agreed to be my Secondary Care Giver and also signed a contract. Incredible friends, doing incredible things!

My dear friend Peter Jackson packed up his truck and pulled U-haul trailer and moved us to Durham yesterday.

I am so lucky to have an legion of close friends that are pulling for me in every way. If you’ve gotten this far you in reading this blog are very likely one of them. Thank you!

So the journey begins………………