Faces of hope
My name is Kenny Reid.
I am now 56 years old, and I live in Tsawwassen, BC and this is my short story, so far, on living with what Scleroderma has done to my body.
It all started in January 2020. I had finished playing a gig (as a hobby I’m a singer in an 80’s cover band) and could not believe how tired I was feeling after playing our setlist and how out of breath I felt. The skin on my hands was tight and causing me grief (not being able to make a fist) and not allowing me to play my guitar well at all. My hands were also constantly cold which I had noticed for a few months earlier. These feelings continued for the next three months and I developed a persistent cough.
My wife Alison forced me in May to the ER in VGH to see if they could give any insight. I have never been one to bother medical folks. Lo and behold, following tests and a CT scan it was determined that I had Interstitial Lung Disease (ILD). My first thought was how the hell did I catch this? I have been a runner most of my life and always kept myself fit, and a non smoker.
I was sent for a pulmonary breathing test. The results determined that my lung capacity was 76% of a normal person, so not too bad, I thought, trying to remain positive. Over the course of the next month and multiple tests, it was determined that I had Scleroderma, which had ultimately caused the ILD. I had no idea what Scleroderma was, let alone that there was no cure. My breathing was getting steadily worse, with me getting out of breath just walking from the bedroom to the living room. My breathing capacity during this year had further reduced to 44%, which caused some real concern with my Respirologist.
I was recommended to speak to the Lung Transplant Team. I started the testing as a precaution and the number of tests was exhaustive, taking over 7 months to complete. Over the course of the tests I met all the transplant doctors, who went about their own individual assessments to determine whether I was a viable candidate. These meetings eventually accumulated in a final meeting in April 2022 with the main surgeon Dr. John Yee, who told me that unfortunately a double lung transplant was my only option for survival. I was officially put on the Lung Transplant List in June 2022, with the strictest instruction that I am always accessible to my phone.
I received a call from Pre-Transplant at 8 am on Aug 7, 2022. They potentially had new lungs for me, and I had to make my way to VGH’s 12th floor immediately. My head was in a spin and the emotional rollercoaster was to begin. My wife and son Lewis were scared but knew we had no choice. I gathered
my bag and we made our way to the hospital with our trusted friend Clive driving, who kept us positive for what lay ahead. I was told that there was a chance that the procedure could be a false alarm should the lungs not be perfect enough. I arrived at the hospital for them to prepare getting me ready for the procedure. Everything was now becoming a blur with nurses being a hive of activity around me. My operation was booked for 6:30 am the next morning should everything go according to plan.
Fortunately, the new lungs were deemed a go. At 6 am that morning, and I was whisked off into the Operating Room. I vaguely remember waking up in the ICU (apparently telling all sorts of weird stories) and being transferred to the recovery floor.
So now I have new lungs but let’s deal with the Scleroderma – which can cause esophageal reflux affecting the transfer of food through the stomach tract. To prevent any aspiration of food or drink back into the new lungs, as this can permanently damage the new lungs beyond repair, I had another procedure of getting a feeding tube attached to the lower intestine and a medication tube attached to my stomach. This allows for all food and medications to be added externally and not via mouth. In all honesty, not being able to drink or eat food for 3 months was the hardest part of the whole process. But now that I have my feeding tube and medicine tube in, I can BREATHE which made the whole process worthwhile – what a feeling that was!
My recovery was unfortunately not straightforward due to complications and bumps in the road. I spent the next 3 1/2 months in hospital. But on the positive side I got to meet so many lovely nurses and managed to share my love of music with some nurses and doctors by making them playlists on Spotify. My recovery has been slow and steady since getting home. It was reassuring to know the transplant team was, and still is, available to me virtually at home at the end of a phone line. This made the scary transition from hospital to home a more comfortable experience for my family and me.
It has been a journey, one of which I am eternally grateful to have been part of. The journey will also be part of my and my family’s life for the rest of our lives. My wife Alison has connected with wives of other lung transplant patients with scleroderma at the same time as myself, have swapped emails and they now have a constant stream of contact and have become great friends (I’m sure they just moan about us guys!!). This, trust me is a great part of the whole journey, actual people who know what the caregiver is going through, which we as transplant patients really cannot understand because it’s all about us (well that’s what the spouses say…ha, ha!)
Forward to Spring 2023 and I have new Lungs and a new life. I am walking daily and getting stronger- – looking forward to my first game of golf in 3 years and it’s all thanks to one wonderful Donor who saved my life. I cannot thank the nurses and doctors enough (not forgetting my nurse niece Katie who kept me calm) and the whole Transplant Team, for their care and attention during my recovery. They are part of our family now – Alison has already got the Christmas list going!! They are all very special people indeed. Lastly, I was also so grateful to have my 80-year-old mother Sheena here from Scotland while I was going through the recovery. She made my first meal of homemade lentil soup once I was allowed to take food by mouth, which was delicious. I would also like to thank our amazing family and friends both here in Canada and around the world for their constant support which was invaluable throughout this journey.
I am now looking forward to fronting my band again. Thank you for reading my story.