It has been 18 years since I last wrote to you and was diagnosed with CF. Today is July 28, 1997 and I’m 34 years old now and on my way to Toronto for a double-lung transplant. I hope it is not a false alarm. I told my anesthesiologist as she was preparing me for surgery, “Don’t give up on me, I’m a fighter.”
I heard some scary statistics while preparing for transplant. I am positive for Burkholderia cepacia and I was told the statistics were not very positive for a five-year survival. My blood type is B+ and I was told I would probably have to wait up to two years for a transplant. I waited on the list for six weeks.
Transplant is not without its complications — it’s a tradeoff of multiple medical complications for more, different complications. The constant worry of infection and rejection can eat at you.
I have always tried to remain as positive as I can, but I do have days where I feel sorry for myself — but that’s allowed, once in a while. I have to remind myself during those down times that I am so fortunate to be here now.
This is your diary speaking. You must try not to dwell on statistics because you are an individual and a complicated and unique one at that!
It’s now 2007. I was told that a lot of patients get cancer 10 years post-transplant. Lucky me — almost 10 years to the day — I found out I had lymphoma. I was in constant pain when I started my chemotherapy and was told the pain would go away.
I have been hospitalized more with cancer than any other time before. This was the first time I experienced anxiety attacks. I felt so alone. I was so sick; I was not contributing; I felt guilt washing over me; the pain was sometimes unbearable. I went from 120 pounds to 85 pounds, and because I was so weak and frail, the doctors would not operate on my bowel to see what was wrong or put in a feeding tube. A CF doctor said I needed to rest my bowel; I was shown how to insert a feeding tube through my nose that reached down to my stomach. I did this for three months but didn’t gain any weight.
I finished my chemo in spring 2008. My hair grew back but my weight did not increase. I still suffered from constant pain and nobody could figure out why. The next year, I went back to work selling new homes for a builder. I needed to be out of the house and not dwell on my health. I was told to deal with the pain as nothing could be done. I passed out at work one day that summer. I went to St. Michael’s Hospital where I told my CF doctor that I was not leaving until they ‘fixed’ me. An amazing doctor reviewed my scans and X-rays and concluded that I had a twisted bowel. He operated the next day and removed part of my bowel. I was eating solid food that same day for the first time in months. He couldn’t believe that my bowel hadn’t ruptured and how so many professionals had missed it. I was just relieved that I was pain-free for the first time in two years. Hallelujah!
Oh yeah, I also found out this year that I’m diabetic and insulin-dependent. Also, I now need to take blood pressure and cholesterol pills. These things can happen when you live past the age of 30.
It’s spring 2018. I don’t know why but I had a nagging feeling something was not right with my bowels. I told my general practitioner that I wanted a colonoscopy (who in their right mind does that?) He said I wasn’t due for one, but I insisted. I found out I had colon cancer. Fortunately, it was caught early enough, and I had more of my bowel removed but, thankfully, I did not need chemo.
This is your diary speaking.
You must be your own advocate for your health. When you feel something isn’t right, you keep pushing until somebody listens.
It’s now summer 2022. My breathing has not been good for a few months now. I visited my transplant doctors and they told me I have chronic rejection. Kind of figured that one out. I may be a candidate for a second transplant, but I must wait until I need oxygen to survive before I can be assessed — the only saving grace is I don’t cough on exertion!
I try to do as much as I can to remain positive; it is difficult at times. I need to rest often and when the guilt of not being able to do things as fast or as easily as I used to overcomes me, I push it aside and rest when I need to. My family and friends are my support. I couldn’t do it on my own without them. I’m still working as a real estate agent. I think working helps me keep my mind busy so I’m not focusing on rejection-related health concerns. Even with all the ups and downs of having a transplant, it was all worth it!
This is Leslie’s diary speaking. Remember what she said when heading for her transplant? “Don’t give up on me, I’m a fighter!” Well, don’t give up, you’re a fighter, too!
Since her lung transplant, Leslie has had 26 wonderful years with family and friends and she’s now a grandmother to four beautiful grandkids.
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