Hello! My name is Mary and I am a double lung transplant recipient.
My journey begins in early 2006. That spring I was training for the Vancouver Marathon. During my training, I started to notice something was off. Being that I was a runner, I felt that I was quite in tune with my body. I was feeling heaviness in my chest that I had never experienced before. My body felt like it was encased in cement. I mentioned it to Mark (my boyfriend at the time) and thought nothing much of it. I decided to go to a walk in clinic to see what was wrong. I was told it was a cold and that I should start to feel better in a couple of weeks. A few weeks passed, and I still wasn’t feeling any better. My health was deteriorating quite rapidly before me. I could barely run around the block, let along train for a marathon. I decided to try another doctor for another opinion, but was told the same thing. So, I let it go. By this point, my running was pretty much non-existent, so I decided that I was going to walk the marathon. I was going to walk 42.2 km. I barely made it to the halfway point when I saw Mark, and started to hyperventilate, was exhausted and started to cough up blood. At this point, I knew something had to be going on, but having seen yet another doctor the day before the marathon, he assured me I would start to feel better in a couple of weeks.
A week later, I woke up unable to catch my breath and went to emergency at UBC. I was immediately put on O2 and then the tests began.
For some time, I was a medical mystery: I was put in isolation because some thought it was tuberculosis, some still thought bronchitis, but most had no idea. Over the next month, I was in and out of VGH for the same reasons still. I was like a revolving door: I would go in because I couldn’t breathe; I would be given some medication, told I should start feeling better, and within a week, I would be back. Finally, someone at VGH decided to do a CT scan of my chest. It was then discovered that there were blood clots in my lungs. I was put on blood thinners right away and I felt both relieved and hopeful that I would get back to my life’s routines as quickly as possible.
I was not getting any better. The medication wasn’t working as well as expected and I was told I had 2-5 years to live.
Over the next couple of weeks, I began to notice that I was not improving, but was getting worse. I could no longer walk up the 2 flights of stairs to our apartment without being out of breath and needing to sit and rest. I woke up that Friday morning unable to catch my breath, my lips were blue, and I made my way to VGH. I was immediately put on 15L/O2 and had about a dozen doctors and nurses doing all sorts of things to me. Over the next month, I had so many different tests done to me that I couldn’t count them all even if I tried. It was decided that I would go to San Diego to undergo a surgery that would literally suck out all the clots in my lungs and I would live happily ever after. Once in San Diego, the relief and hopefulness came flooding back only to have it pulled out from under me. The clos were out of reach and in the tiniest vessels that it would do more harm than good to try to remove them.
I can’t even begin to tell you the devastation that I felt, but it was here where I got my diagnosis of primary pulmonary hypertension with chronic thrombo emboli.
Back at VGH, I went feeling crushed, frustrated, sad…all the emotions you would expect to feel, but mostly anger. I was angry. I was angry that I had gotten sick. I was angry that it took so long to get diagnosed. I was angry to be back at VGH to have a Hickman line put in for my medication. I was just angry.
I now had to learn to live with a debilitating disease that is going to change my life.
So, you have the anger, the sadness, and the self-loathing. But then there is the acceptance of it all. It did take me quite a while to finally accept all that happened, but I would like to think I got there… eventually.
Throughout all of this, Mark and I decided to get married. Planning the wedding kept my mind preoccupied with happy thoughts and away from the sadness that I felt. A month after I started my medication for my pulmonary hypertension, I had a follow up appointment with my doctor to see how I was coming along: it wasn’t good. I was not getting any better. The medication wasn’t working as well as expected and I was told I had 2-5 years to live. The only other option would be a double lung transplant. This was even a challenge as there were few transplants done with my specific condition and fewer statistics; however, if I were to have a chance at life, this would be my only shot.
In January 2007, I was told I would be put on the transplant list. We were told the average wait time is 6-8 months.
As planned, we were married April 4th, 2007. Our wedding was wonderful. All my friends and family from Ontario flew out for it. I was so happy to see them. I felt good and somewhat strong to entertain and enjoy everyone, and thought I didn’t look sick at all, that is until I saw it on their faces. I knew then I needed to get the transplant soon. I was just beginning to accept everything that I had been through (being in denial was much easier) when we received the phone call.
On May 3, 2007, we received a call to say a donor had been found for me. I can’t even begin to tell you what I was feeling: happy, sad, scared, all of it. Leaving my home that night was very emotional-I knew this was a good thing, but at the same time, I knew there was the possibility of me not coming home. We made all the important phone calls and made our way to the hospital.
Mark’s family met us there, and my family made it later from Ontario.
At 8:30 that morning, I said goodbye to Mark. I told him that I loved him and would see him in a while. I felt calm and ready to get on with it. There were quite a few complications throughout my surgery. What was supposed to be an 8 hour surgery turned into about a 36 hour surgery, but I made it through.
Every year since I received my transplant, Mark and I run the Vancouver ½ Marathon to show my appreciation.
I woke up surrounded by all the people I loved most. And that’s when the hard part started: the recovery. Throughout all of this and leading up to the transplant you just focus on how great it will be to take a deep breath and run and get back to living, but you are never told just how hard recovery is going to be. It doesn’t happen overnight. It’s a marathon, not a sprint.
For me, I found the first year was just healing physically, being grateful, regaining strength and getting to know your new lungs. They’re different and you just are not too sure how they will react to certain things.
The second year is when you can start healing mentally and emotionally. I was able to start to process everything that I had endured. I won’t tell you it’s all sunshine and daisies because I would be lying. You feel so overwhelmed with being given this gift, and you know there is a family mourning somewhere. It’s a lot to digest. Every year since I received my transplant, Mark and I run the Vancouver ½ Marathon to show my appreciation. Not a day goes by that I don’t talk to my donor and thank her for the gift of life.