Finally, I am actually posting a new blog which I have been promising myself to do for weeks. First of all, I have been spending a lot of time in the Kawarthas, the lakes which are about two hours from our house to the cottage. I thought that going up there would make me more productive but it's actually just the opposite. But the main reason I have been spending so much time there is that in the summer here in Toronto most days are unbearable for me to breathe. The humidity is so oppressive that I can't really spend much time outdoors. Not that I am a sun worshipper but it would be nice to be able to put on a pair of shorts and a tank top and work outside.
Last summer I noticed that I was having a lot more trouble breathing. I went to see the respirologists on the transplant team at the Toronto General Hospital. There are so many reasons I avoid seeing them but in the last few years it's mostly because I feel like they really don't care that much. When I had my surgery I was the 500th patient to undergo the procedure. Back then the transplant team was relatively small and I knew my surgeon as well as the few doctors who followed me. However, the team has grown which, don't get me wrong, is a good thing. It means they are doing more transplants and less people are dying while they wait on "The List". For me although, it means that when I need to see one of them I get a different dr. every time. Once a year I have to have a full assessment. That means I have to be in the hospital for a full day or x-rays, breathing tests, bloodworm, a 6-minute walk all culminating in a visit with the doctor. Last year I had to cancel my scheduled assessment appointment because I had some unexplained bruising on my stomach and my family doctor (another nightmare which I will explain another time) had scheduled some tests to check out my abdomen. The transplant department never bothered to re-schedule the assessment.
Ok, back to last summer. First I did my Pulmonary Function Tests, or, PFTs. Since my transplant my breathing rate was always around 1.73 - 1.78. This is actually a terrible score but it was where my body had chosen to settle after my surgery. So it was terrible but consistent. The PFTs I did last summer had fallen to 0.78. Not good. The docs decided to do a CT scan of my lungs. They found signs of an infection and gave me an inhaler to be used at my own discretion. The inhaler had 60 "rounds" in it and I used it very infrequently and it lasted me almost a year.
I returned to the transplant unit doctors about a month ago. This time it was because I was nauseous a lot of the time. My family doctor couldn't figure it out so I made an appointment with the transplant team. I repeated my PFTs and they were still lousy. I had a CT scan and they saw the same infection that was there the year before. Then they pulled up a test that I had done by a gastroenterologist in 2008. I had completely forgotten about it until they brought it up and I remembered that I had been having a lot of stomach aches at the time. The test showed that my intestines were completely backed up, that I was literally "full of shit". The dr. also mentioned my weight loss of six or seven pounds which is like twenty pounds on a "regular" sized person. She was convinced I had a tumour in my stomach. I escaped to the cottage for two weeks, living in fear. In my mind I chose my pallbearers, who would deliver my eulogy and sitting down with my kids to divide up my jewellery. When I went for the test the technician had me swallow a series of rather nasty things and took images from every imaginable position possible. I suppose that because I had a very thick file (it's actually a big blue binder) full of dr's. notes and tests results dating back 15 years the head radiologist wanted to sit in on the session. If you've ever had any x-rays or scans done the technician always tells you that your doctor will discuss the results with you at your next appointment. Not this time. The radiologist, a lovely Asian man of about 60 years old came out from behind the booth and told me himself that he saw no blockages, no tumours, and beautiful white lungs. Needless to say I was ecstatic.
The following week I went, once again, to see the doctors at the hospital so that they could deliver the good news that I already knew. I did my bloodwork, x-rays and PFTs. My breathing had dropped another decimal point and I had lost two more pounds. Now I await a couple of tests to see if my heart is strong enough to withstand another type of medication and they also put me on an antibiotic which I had been on before (for the lung infection that was discovered last year!) and an increase in my anti-rejection medication. At the end of the month I will undergo another couple of tests, one to measure the bile level in my stomach and another to measure the motility in my gastro-intestinal tract. In the meantime, I feel fine and trying not to think about about it.
As for my book, Breathe: The Journey of a Double lung Transplant Patient, I have put it aside for now and I'm working on two articles for the Huffington Post. I'm also re-thinking the title of my book and pondering a book cover.
Stay tuned.
