As I mentioned previously, I do not remember a lot about the first little while after my lung transplant. I do think about it a lot, and certainly I have heard many stories from family and friends and even seen segments from the media that have allowed me to 'remember' more. The truth is I don't remember how sick I got before. When I was still at my CF ward at St.Mike's and was put on the ventilator. As if it never happened. From there I was transferred to the Toronto General Hospital ICU where I waited for my lungs.
(Nearly 10 weeks post lung transplant, January 27th, 2009 - today!)
It was during this time that my family started to notice my rapid decline and the fact that I had little time left to live. I was sedated, and not breathing on my own. My lungs failed, I was hemorrhaging blood when I coughed into the ventilator and when I was suctioned. Martin was unlucky enough to have witnessed one of the the times that I was suctioned in the ICU and he said it was horrific. I was convulsing and bleeding a lot. So, my family decided to push for a living donor scenario. There was just less and less hope in those lungs coming. The first step was for everyone to get tested for their blood type. To every ones surprise both my mom and dad, as well as John were all B+ (same rare type as me) and Martin was O, also able to donate. Everyone was ready to donate a lobe, including my husband. Not a thought went through their minds not to, in fact they were all joking about who would be lucky enough to do it. We also got calls from my aunt in Chicago who is also a B+ and my uncle in Poland that was ready to fly in right away. When I think about all these people willing to go through this surgery to save my life, it makes me feel like the luckiest woman in the world. Their fight was just as strong as mine. I would do the same for each and every one of them in a split second.
November 21, 2009 came around, and my dad said he felt that I only had a few days to live with my lungs. He saw the doctors getting worried, running out of options after the Nova Lung started to cause problems. Martin said that he knew one way or another we were going to operate that weekend, but everyone thought it would be from family live donors. Martin was sitting in his office at work, ironically fixing up our Will, getting ready to be called into the OR when he got the call. It was not him going into the OR, I was, the lungs had arrived. At first he thought it was a joke, after so many ups and downs, it was hard to believe that now, truly in the 11th hour, a donor had been found. It was the best news he had ever heard he said. The news got around quickly. He called my mom right away, who has heading to church with Scarlett at that very moment to continue to pray for our miracle. When my mom called my dad, he cried on the phone, the lungs are here, her lungs are here!
My mom, John, Angie, and baby Sophie (who was only 8 days old at the time) stayed at our house during the operation. I always told my mom, no matter what, not to drag Scarlett to the hospitals. She needed to continue her schedule, and so that's what my mom did. Always respecting all my wishes regarding my baby. I trusted she would be a perfect babcia and caregiver along with Martin. So the 4 of them spent the next night at our house. Comfort in numbers at the most critical time. Martin and my dad were at the hospital.
My dad never left my side. He slept in the chairs, in the waiting rooms, even though others told him to sleep, go home, rest, he rarely did. He just could not leave, even though I was unconscious and in the impressive hands of the ICU at TGH. Those people kept me alive. I have a lot of people to thank before I even went into the OR.
(Holding my favourite Christmas gift from friends Kelly and JR - my new lungs in plush blue)
It was my dad and Martin that walked with me as they wheeled me into the OR. Martin and my dad remember the dramatic unplugging of all my tubes and devices, and that being a very scary and emotional moment. And the the doors closed, at that was that. It was all in the hands of Shaf Keshavjee and Tom Waddell, my surgeons, and the many other staff involved. I wish I could know them each by name and person. They are all so valuable to me, and all so committed to saving peoples lives. I don't remember really waking up and the days that followed in any logical order. I remember one time waking up, I think I was still in the ICU but I am not sure, and my dad's face and Marty's and them saying to me over and over, you got your lungs, it's all over. Big smiles all around. On my end I felt nothing but discomfort, confusion, and distress. I was unable to move, and had tubes coming into my nose, throat, hands, everywhere. I was confused as to how I got in that room. I could not speak due to the trach, and I found that difficult and I panicked a lot as a result. I remember the horror of the panic of not being able to move. I had pain medication that was used liberally, so I was not in terrible pain. It was more a tension and stillness of my body that I found unbearable. I was soon sedated again since I could not calm down. It took me a long time to discover that I had had my operation, I was alive, and that I had been very very sick. This took the longest for me to realize since I did not remember a thing.
(Seeing Scarlett again on Christmas day)
Over the next month the recovery was the hardest part of my life thus far. Before I turned the corner, both mentally and physically, I went through a dreadful time. My brother said that I looked constantly in shock, ready to die, cry, ask and beg for help, even though there was not much anyone could do. Time had to pass, meds had to work, medicine had to do its thing. But after dealing with CF for 30 years, one comes to think of lung transplant as the easy part. At least that's what I thought. I heard stories of people leaving the ICU in 2 days, then out the door and home in 10 days or 2 weeks. That is what I expected for years and years. I did not expect for me to get so sick, so fast and to have to fight like I did.
By far the hardest part was not being able to move. I began to get sore, and agitated. Lifting my arm over my head was impossible so I started with physio by just lifting my leg a few inches, my arm a few inches, stretching my toes up and down, and trying to sit up in a big chair for an hour or so a day before getting back into bed with the help of a lift. It was devastating for me to have to go through that. I felt very sorry for myself and really believed for the first few weeks that I would never walk or move again. A silly thought when I think where I am now 2 months later. But when you expect something so different and wake up one day, and this is what you have to deal with, your mind plays tricks on you.
Martin had a lot to do with my rehab. He took time off work and worked with me for weeks, until I was walking with him down the hall. Large walker, small walker, holding his arm, then on my own. We did a full weights program, Martin pushing me all the way. Even when I did not want to move from bed. He would make sure I got my pain meds, that I ate, and that I got out of bed. It was the hardest part. Sleeping was easier since it was so much work to move. But things got better and better. Every day a better step, stronger legs, small changes. My body began to respond.
(Arriving in the TGH Atrium December 26th, 2009 - 1 month post transplant)
There were set backs along the way. Since I was so weak, I was in bed longer, and unable to get to the bathroom for nearly 5 weeks. This is so difficult as an adult. I had to wear a catheter that was removed quite early as to prevent infection, at which point I wore adult diapers and used bed pens. No one really talks about such things, but the challenges of that are huge. I was also on Lasics at the time, which is a medication that makes you get rid of the extra fluid that your body is holding, which meant that I was urinating all the time. And when I say all the time, I don't think I can even describe how much that was. At times I would wake up to a bed soaking from top to bottom. Needless to say, the doctors soon evaluated me and noticed that what was happening was unusual. My bladder had stopped contracting and letting me hold urine. So I went back on the catheter to make my life, and those poor nurses that were in and out of my room 24/7 lives easier. That time was so hard for me. I had bladder pain from not being able to empty in time. I had bowel pain. It was insane. There were nights that I prayed for relief in any form. Most of the time I got good drugs to help me sleep and get relief.
So I know that was too much information, but I said I would be open. After that when I got stronger, the doctors told me the catheter had to go. I had all my tubes removed and it was the last to go. I was so horrified that I would have no bladder control again, but this time they took it out and everything worked as it should. The muscles had come back, like everything else in my body. It was just time, strength, and it felt great to feel that much more in control of things. Let's say that I will never ever take for granted such simple things again.
So that was my first month. The second was wildly different. I moved ahead faster and faster. I spent more time alone, without as many frets about being alone. I started to gain confidence in myself and in my new lungs. I reached a new plateau those last few weeks.
The second month...To be continued....
(Angie and Sophie, John and Scarlett, and Martin - today)
(Scarlett and I, today at John and Angies)
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