A summation of my transplant experience so far

I had another topic planned for today but then I started working on a blurb I was asked to write for the local Petitcodiac paper and the next thing I knew, the afternoon was gone. So instead, I thought I would share the blurb I worked on today. I was given no guidelines on lenght or information requested so what ends up in the paper to be or topic so what ends up in the paper may be completely different after it goes through their editors. No, I have no idea when or even if, it will be printed. I'll keep you posted.

I feel as though I left so many details out but had to stop rambling at some point. It's actually a bit overwhelming to have it all condensed into several paragraphs. A lot happened in the last three months as I'm sure you already all know.

A summation of my transplant experience in under 2000 words:

Cystic Fibrosis (CF) is a multi-system genetic disease, affecting the lungs and digestive system. In the lungs, thick mucus causes increasingly severe respiratory problems. It is difficult to clear bacteria, which leads to cycles of infection and inflammation. Mucus and protein also build up in the digestive system, which causes digestive difficulties and nutrients must be absorbed with the aid of digestive enzymes. A lung transplant can prolong the life of some people with CF when their natural lungs fail.

I, Allison Watson, 28, had a life-saving double lung transplant in Toronto at the end of November 2014. I was diagnosed with CF at birth immediately as my older sister, Amy, also has the disease. We grew up trying our best not to let CF rule our lives or limit us in anyway. Of course, there were the daily aerosol masks, chest percussions, and a slew of medications but since I never had it any other way, it was just part of my routine.

After doing many school presentations about CF, I grew up knowing that my life expectancy was shorter than the average person. Knowing this, I tried my best not to delay any life goals; I travelled at every opportune moment, got two degrees from university, and cycled, with my brother David, across this beautiful country.

I also always knew that one day I may require a lung transplant. A lung transplant was always something casually discussed in my family as though it was something that every person considered in their lives. As I hit mid-twenties, a possible lung transplant became less of an abstract idea and much more of a reality as my lungs dramatically declined.

In July 2013, my partner, Isaiah, and I flew to Toronto for an intense week of pre-transplant assessment testing. They ran, what felt like, every possible test to make sure that the rest of my body could handle such an intense operation. In August 2013, at a cottage in PEI, I received the phone call saying that I was deemed eligible for a lung transplant and that I better start packing for the move to Toronto. As Canada only has five locations that does lung transplant surgeries (Montreal, Toronto, Winnipeg, Edmonton, and Vancouver), everyone requiring a transplant from the Maritimes is required to relocate to either Montreal or Toronto. Also, the hospital requires that each person listed live within a two and half hour commute to the hospital for when they receive “the call.” Late September 2013, Isaiah and I gave up our apartment in NS, and drove to our new rental in the heart of Toronto.

I then proceeded to wait for 13 months before receiving my transplant. Thirteen long months with physiotherapy sessions at the hospital three times a week, monthly or weekly doctor appointments between to two different hospitals, and surviving the coldest Toronto winter in a decade. The one positive was that we were able to explore the city, as much as I was physically able, and did way more touristy activities than most people who live long-term in the area.

I was given a pager that I carried with me everywhere as I never knew when “the call” would happen. The process is such that when a donor becomes available, they contact the closest match and let them know it’s their turn. There are occasionally false alarms if it ends up that the donor lungs have an infection or complication or are more appropriate for someone else. Often, someone requiring a double transplant is called and it ends up that only one lung is suitable for transplant. From listening to people at physiotherapy complain about false alarms, it seems that about half of those listed receive one or two false alarms. In the thirteen months I waited, I received zero calls.

About two months before the transplant, my health further deteriorated. My oxygen requirements were raised and my ability at physiotherapy decreased. I was hospitalized on and off as the doctors tried to keep my lungs stable and me alive. It was during a hospitalization that a nurse came into the room to tell me the news that I had been waiting 13 months to hear: I was getting my transplant the next morning. I was cautious about getting too excited as I always figured my first call would be a false alarm, also I didn’t have the energy for a celebration. I’m pretty sure the nurse was disappointed by my non-reaction as she said “Aren’t you happy? Don’t you want to call everyone?” Yes, I did. Eventually.

The next morning I was moved to the other hospital and then proceeded to wait anxiously with my family. I was very fortunate that my parents had decided to visit when my health kept declining as they were able to share my anxiety. The transplant did not happen that morning, in fact I had to wait until the next day before anything happened. To be honest, I was pretty out of it the entire waiting day and only remember bits and pieces. Such as, the doctor putting marks on my chest with a sharpie which I found hilarious for no reason. I recall being quite hungry while waiting and then I have a vague memory of seeing a doctor’s face while on a gurney in an elevator.  

And then nothing.

I woke up 4 days later in a dark, empty, hospital room. There was no one around and I didn’t have a call bell to summon anyone.  I didn’t know if I had transplant or how much time had passed. All I knew was that I had a ton of lines attached to me, I was all alone, my vision was super blurry, and I was unable to physically lift my head as I had lost all muscle.  It was quite terrifying. I was on a ton of pain killers and partly stoned- but not aware of it- which didn’t help my initial feeling of terror. A nurse eventually came back from break and told me a bit of information before I drifted back into a painkiller induced sleep.

I was filled in later with what happened. The operation was successful but not without complications. After the initial surgery, I had to be put on an extra corporeal membrane oxygenation machine (ECMO) which acted as an artificial heart and lung as my new lungs were not working as well as expected.  They then found a bleed in my new right lung so I was sent back to the OR for a second operation to clean everything up. My lungs worked much better after the second operation and I was able to come off the ECMO and bring me out of the comatose state.

The thing with waking up from a comatose state is that no one knows at what point you became lucid. I know when I woke up and was able to remember things again- even if it was still hazy- but my family couldn’t really tell the difference between me the previous day or that day. I was also unable to talk due to the ventilator so communication was initially all done through a letter board. With my blurred vision and foggy mind, simple communication took a long time. Eventually, I moved up to being able to write what I wanted to say which was much easier. It took about two weeks before I was switched from the medical ventilator to a tracheostomy. When the tracheostomy was put in, I was finally able to have some ice chips which, after two weeks without any water or food, were better than anything on earth. It took about another two weeks before I was strong enough for the tracheostomy to be removed.

My discharge from ICU was delayed due to the fact that every time the doctors thought I was stable, another problem seemed to arise. The first complication post-transplant was that they found a blood clot in one of my new lungs. That was managed through medication and having a very thorough ultrasound done of my extremities to make sure there were no more clots elsewhere. After that, I had a GI bleed which required that I receive several pints of blood from the bloodbank and multiple stomach scopes to close the ulcers That was fairly under control so I was moved to the ‘step-down unit’, which was basically the ICU only with fewer nurses. There, they noticed that the incision site around the sternum was infected which required another trip to the OR where they opened the incisions, cleaned the area, and removed ½ cm of my sternum. The area was treated with negative pressure wound therapy, also called a V.A.C. machine. A V.A.C machine attaches to the wound and removes the moisture or drainage from the site allowing for faster healing.

Once I was finally stable, I was moved to a more hands-off floor where I spent several weeks trying to strengthen my body, learning all about my new medications, and figuring out funding so I could have the V.A.C. machine at home for several weeks. I was discharged for one glorious weekend until I had several medication-induced seizures which put me right back in the hospital for another two weeks.  In total, I spent a little over 2 months in the hospital post-surgery. I had a longer stay than most people who have a lung transplant but then, not as long as some of the people I see at physiotherapy.

During the entire process, my family and friends visited as much as they were able, Isaiah visited every day, and I had an entire community of support back home that I heard from online and through mail. The support was priceless. Not just having Isaiah bring me delicious food when I was able to eat again, but hearing encouragement from a wave of people helped boost my spirit when I was feeling overwhelmed. The hours my family and friends spent playing cards, making cards, and reading trashy magazines together kept my mind off all the machines and onto something a bit more positive. It kept me sane and from getting depressed in a situation that could very quickly become depressing. They kept me going during each new setback and for that I have unlimited amounts of thanks and gratitude to give.

I am currently home from the hospital and my lungs seem to be doing well, although my medication levels have yet to stabilize. I once again have physiotherapy three times a week which is even more important now than ever as my body is deconditioned after so much time in the hospital. A new part of my routine is having blood work taken twice a week, x-ray, lung function tests, and clinic appointments once a week. I do not have any time to sit around and be bored.

The hope is that once everything has been stable for several months, I’ll be able to say good-bye to Toronto and return to my ordinary life. Only this time, without the oxygen tank, thanks to my brand new lungs, and perhaps, with a bit more energy. I will never know the donor of my lungs or anything about their family but I owe them my life. The donor family had to make a decision that no one ever wants to make. In their time of loss and grief, they decided to give strangers the chance for a better life. For the rest of my days, I will be indebted to them and will never forget the opportunity that has been given to me.