A Life With CF

Single Story

My name is Shillane Labbett and I am a 37 year old double lung recipient. I was born with Cystic Fibrosis which is a genetic disease that affects the lungs and pancreas. When I was born, I was given 5 years to live. It then changed to 18 years and more recently people are living into their mid thirties.

By the time I reached thirty, my lungs were rapidly deteriorating. On a good day my lung function was 30%. My respirologist, Dr Diane Lougheed approached me numerous times to look into getting on the list for a lung transplant. Originally, I felt that a lung transplant was all wrong for me and that I would just follow the natural path of life for a person with CF and die at an early age.

Dr Lougheed continued to try and convince me to see about a transplant and with time and talking it over with my husband Simon, she finally convinced me. There couldn't be any harm in seeing the transplant team in Toronto to learn more. So, off to Toronto Simon and I went. We learned a great deal about transplants and learned that I personally, would have an excellent chance at a close to normal life after transplant. Unlike the two only other people I knew that had lung transplants and died in the first year. Some lung transplant recipients are now living more than fifteen years post transplant.

The transplant team in Toronto told me that they would like to see me every six months to monitor my condition so they would know when to add me to the list. Timing is very crucial. The team want you to be in extreme need of a transplant but well enough to make it through major surgery - it's a fine line.

So, I continued to go every six months for a year and a half. At which point I became extremely ill. I was on vacation in Nova Scotia when I developed massive hemoptysis which is haemorrhaging of the lungs. It is estimated that I coughed up 2 litres of blood before I was rushed to the hospital in Halifax. Here I was put on Oxygen permanently which I had been using off and on over the last few years. Once I got back to Kingston after a two week stay in the hospital, I saw Dr Lougheed and she said it was time that I go back to Toronto to have an official assessment. It was decided by the transplant team that I should be added to the list. So, my mom who was my support person and I moved to a condo in Toronto to begin the wait and to embark on an exercise rehab program. I was told that I would probably be waiting 6-8 months for a double lung transplant. Unfortunately, during the first week of waiting, I got extremely sick again. While I was waiting for a hospital room at St. Michael's in Toronto, my lungs once again began to massively hemorrhage from a burst bronchial artery. I was admitted to the ICU and put on a ventilator since I could no longer breathe on my own. About ten days passed while I was in the ICU and on the 23rd of February 2005, a nurse came in and told my mom and I that a set of lungs had become available. After making sure it was for real, we were ecstatic. However the first thing I wrote on my notepad was that I felt sorry for the family of the donor.

I was told at 5pm that there was a set of lungs and I had my surgery at 5am on February 24th, 2005 after waiting on the list for only twenty days. My name had moved to the top of the list due to the severity of my condition. I had a wonderful surgeon, Dr Shaf Keshavjee, and I am told that the set of lungs that I received were impeccable. Within 2 days, the physiotherapist had me up relearning to walk with a walker. I spent three more months in Toronto to complete my mandatory physio. Those three months were some of the happiest in my life. I was able to breathe and walk and do the things normal people could do. I spent time walking along the waterfront in Toronto and walking in the malls shopping since I hadn't been able to for so long.

I am extremely grateful to the donor and donor family for this incredible gift of life. I am so lucky that it came when it did. It was a miracle. My family and I wrote anonymous letters to the donor's family thanking them for their kindness and generosity and to express our sympathy for the loss of their loved one. My husband wrote a poem to the donor's family, it reads:

The Solemness is quite a cost,
For someone you have loved, then lost
The cost is great but can help pay,
For others to have an extra day,
Although the thoughts of loss will not recede,
Please take comfort in the ultimate good deed,
It was performed through the thoughtful donation,
That answered our prayers of desperation,
The change it has made is inconceivable,
Just goes to show what is achievable,
When caring souls make noble choices,
And declare their wish through human voices,
You can almost hear them, it's like fate,
When it is spoken "We've decided to DONATE".

Back to Stories Page