Hi, my name is Chelsey McNeil and I was born and raised in Hamilton, Ontario. I am the eldest sibling and have two younger brothers and come from a large family being half Italian and half Scottish. I have a lot of cousins who were all my very first best friends, my family and I are all very close and I love that and them. I’m very blessed for all my family and friends as they are all my biggest cheerleaders and supporters and I’m so grateful for them all as my 33 years of life have not been easy!
I was diagnosed with Cystic Fibrosis at age 4. Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene cause the CFTR protein to become dysfunctional. People with CF tend to cough a lot, due to the phlegm in their lungs.
"That day I was told the words: you have to start thinking about going on the transplant list for a double lung transplant or you will not make it much longer on oxygen"
Even though I had CF I was able to have a fairly normal childhood and managed my CF well growing up, I did always cough a lot but as a kid that never stopped me.
As a young teen and adult, I managed to graduate high school and college, work full time, bought a house with my high school sweetheart, we got a dog and we later married in 2014. Everything was going well and I was extremely happy and excited for my future and the life I was creating with my husband and my loved ones.
It wasn’t until my late twenties that my health started to decline from my CF, I had to be hospitalized a few times for chest infections, and then at the age of 27, I had a pneumothorax that never fully resolved then leaving me on supplemental oxygen at the beginning of 2016.
I was on oxygen for two years and during those two years my life was completely on hold, I was always tired and out of breathing and would fear going out in a case, I didn’t have enough oxygen with me. It was a struggle to do simple tasks like eating, talking, walking, and showering, I feared everyday being on oxygen and the anxiety was constant not knowing if I’d wake up the next day, and always thinking why and this is becoming very hard to live like this as I was attached to my oxygen and my home not able to truly live as a young adult.
On my follow up appointment with my CF doctor at McMaster, to discuss my pneumothorax and if any progress on the tiny tare at the top of my left lung had healed yet, to see if there would be any possibility if maybe it was healing I may one day get off oxygen and be able to live a fairly normal life again, but I knew deep inside and in my gut, the news wouldn’t be good as I still wasn’t feeling great or any better.
That day I was told the words: you have to start thinking about going on the transplant list for a double lung transplant or you will not make it much longer on oxygen. When he said those words Transplant list and you won’t live much longer if you don’t, my heart completely sank and I started to hyperventilate with the Doctor, my husband and mom all there with me, we all were crying and scared but they all tried to comfort me, with hugs and saying it will all be okay. My doctor said I can go home and think about it and gave me all the educational booklets on transplant and double lung transplant for pre and post and what to expect.
Later that night I read and went through the transplant pre and post-books, to be honest, everything in that book terrified me and made me even more scared. Every night I went to sleep I prayed that I was just living a horrible nightmare, I felt so stuck, sad, angry, and depressed. I hated how every day was a struggle to breathe and that what I could do and where I could go was very limited because I had to be attached to oxygen 24/7 and to continue on life like this was no way for anyone to live. It was also hard for my husband and parents to see me break down a lot of times and for them, it hurt so much because they all wished they could do anything to help me.
"On December 14, 2017, the worst had happened I could no longer breathe even with my oxygen"
I knew that I had to at least do the Transplant assessment, which has to be done before anyone can qualify for a transplant to see if you are a good candidate for the life-saving surgery as it’s a lot for the body to endure. The assessment was done at Toronto General UHN hospital, they took many tests on my heart, X-rays and ct scans of my body and lungs, tested by blood gases and all, throughout the tests I felt tired and extremely sick to my stomach as I knew all these steps were leading closer and closer to a transplant and I felt in my heart that if I get this transplant I don’t think I’ll be strong enough to survive it, that’s how I truly felt and worried about constantly that I won’t make it much longer to get a double lung transplant or I will not survive the surgery. The transplant center in Toronto said they will call me in a few months after they go over all my tests results and let me know if I am a good candidate for a transplant and if so and I agree I would then be added to the double lung transplant list.
I went on with life back at home on my oxygen just waiting as that’s what my life had become just a waiting game that was currently on pause from doing anything. I started to have to prepare mentally about death and that this may be the end for me very soon and it broke my heart because being only 29 years old I still hadn’t truly lived there were so many more things I wanted to do and see with my loved ones, and I need them and they need me here. I prayed every day for some kind of miracle, wished for a drug that could help my terrible CF lungs, anything, I just wanted to live and I didn’t want to believe that my life was ending this young. It was devastating.
On December 14, 2017, the worst had happened I could no longer breathe even with my oxygen, no matter how high I turned it up nothing was helping. I called 911 and my family and husband right away. I was taken to St.Joe’s in Hamilton, at this point I do not recall what happened. My family told me I was then put on a ventilator and told I had to be transported to The Toronto General where they specialize in lungs and doing transplants and they also had all my assessment information from recent assessment tests on my lung condition to my size, my weight, and my blood type. Once I arrived at the Toronto General they found that I had severely high levels of CO2 poisoning and that they needed to immediately put me on the ECMO machine to filter out the high levels of CO2 from my blood. My family and I were then told I would need a double lung transplant in order to live, as I was dying and it wasn’t going to be safe to keep me on the ventilator and ECMO machine for much longer in the condition and state I was in. After 3 weeks of being on ECMO and the ventilator and in an induced coma, while waiting for new lungs, the perfect pair ended up coming in that were a perfect match for me from my angel donor.
"My surgeon said I was the most complicated case and DLT he had ever done"
It was on January 5th, 2018, I received my double lung transplant. My transplant was a very complicated one as I was very sick going into it. During my DLT surgery, I had severe bleeding issues, I was taken into the OR 5 times and opened up time and time again just to try to resolve all the bleeding. The surgeon had to actually leave my chest left open for 3 days to pack my chest to try and stop the bleeding on the fifth and last time to the OR as it was too dangerous to have me opened up again after that. I received countless blood transfusions, more than you could ever imagine a small person like me ever getting in their lifetime and I also had a plasm procedure because of all the bleeding issues and low platelets.
They also had to place a metal plate in my chest and metal plates on a few of my ribs that they had to remove and also added a filter in my neck to prevent blood clotting and resolve the bleeding issues I had and then they reclosed my chest after 3 days when that was resolved. I had a total of five chest tubes on either side of me to help drain any fluid/blood that was around my lungs while healing after my transplant. I also had an extra 11th chest tube added to my back to dissolve a blood clot below my right lung.
My kidneys also went into renal failure after transplant, I was put on dialysis for 12 hours twice a day for a couple of months then down to 8 hours a day and then finally after 6 long months my kidney function came back which was true miracle the team had said! I also had many infections, including Mrsa and Cmv that developed after transplant while in recovery in the ICU which was treated with many IV antibiotics a year. After enduring a difficult DLT surgery and all the complications that I had and being bedridden for so long, I lost all muscle function in my entire body from the neck down. I then had to learn how to breathe again by building the muscles around my lungs, which took me longer to get off the ventilator because of that, I also had to learn to hold/lift my own head up, walk, to write/use my arms and hands, swallow/eat and talk again which were all very hard and took a long time in recovery.
I spent just about 2 years straight in hospital at Toronto General since being admitted that day on December 14th, 2017 and after receiving my new lungs on January 5th, 2018 as I was a very complicated case and very lucky to have survived my journey and road to recovery as it was different than many others and definitely unique and not the usual case for a DLT recipient, my surgeon said I was the most complicated case and DLT he had ever done/saw!
"I’m glad that was one thing I was able to do to help myself"
By May 2019 I was finally MRSA and CMV free and was finally able to get my pic line out and off all the IV antibiotics. The chest tube in my back for the blood clot also got to come out in the spring of 2019 and the blood clot had resolved. I finally could now see the light at the end of this very long tunnel and the journey that had been unbelievably tough and so hard on me and my family and friends, but despite all my struggles and complications, I never gave up and fought hard every single day even when I thought I couldn’t anymore and I was able to overcome every obstacle, hurdle, and complications that came my way and for that, I am so proud of myself and so thankful for my donor, my family and friends and for my amazing team at Toronto for always believing in me and for saving my life!
I did not ever receive the call that I was a good candidate for my double lung transplant as I deteriorated too quickly before I could receive that call, but I’d say my miracle was doing that transplant assessment when I did at Toronto General hospital and taking that step to do it even though I feared it so much. I’m glad I was brave enough at the time to do that as doing the assessment is part of what saved my life, as Toronto didn’t have to waste any time doing those tests when I was in critical shape coming into their hospital that night in December and they were able to immediately add me to the double lung transplant list because of the assessment done prior. So that was a blessing in disguise and I’m glad that was one thing I was able to do to help myself.
Even though my transplant journey was hard and complicated and difficult, everything I have been through had been so worth it and I wouldn’t change a thing because it is the reason I am alive and well and feeling my best and can finally be home with my husband and dog and here on this earth living and breathing easy now with my loved ones and for that, I am truly forever grateful!
"I also received a letter from my donor's family..."
I have been home and well since October 9th, 2019, I even got to be a bridesmaid at my cousin's wedding in Mexico on October 11th, 2019! I got to celebrate birthdays and holidays with my loved ones. I turned 33 at the end of June, because of my donor that wouldn’t have been possible without her registering to be a donor. I’ve also become an auntie for the first time this year as well, all because of my donor I was able to see and meet my nephew. I have been able to live these past 3 years I wouldn’t have had if it wasn’t for my angel donor. I am so grateful for her and her family and organ donation.
I also received a letter from my donor's family, which I had prayed for. I wanted to know more about the selfless person and their family who saved my life. I thought about this person every day I wanted to know more about them and be able to thank them for the truly beautiful gift of life they had given me. The letter was everything and more, my donor was a very kind lady who was always caring and helping others even up until the day she passed she saved lives. She liked to travel, loved her family, loved to care for others, liked to be funny and liked to cook, and liked ice cream. She and I have a lot in common and even though she is not here physically she still lives and breathes on in me and the other people she saved as well and that’s truly beautiful. I write and keep in touch often, I consider my donor's family and i family.
"Never give up and always keep fighting"
I’ve also since connected with Cystic Fibrosis communities online as well as the Transplant survivor community as well and have connected with so many wonderful people and we all help each other out with our struggles and give support to one another and it’s nice knowing you are not alone and have a lot of people in those groups to talk to about things that others would not understand having not experienced or been through your situations. I’ve also been able to be an advocate and guest speaker for both the CF foundation and Trillium gift of life Network raising awareness and educating others on both very serious topics of rare diseases like CF and about the importance of organ donation. I’ve also done many fundraisers for both causes as they are both very dear to mine and my family's hearts. I like to give back and help others as much as I can, as my life was saved and helped by so many I want to give others in need all the help I am able to give.
I continue to share my story in hope that it gives anyone going through a transplant or on the waiting list or going through a hard time or an Illness or diagnosis that you can too beat the odds and overcome any obstacles you put your mind to and fight for! There is light at the end of the tunnel and there are better days ahead, never give up and always keep fighting! If little tiny me can do it you can too!
You can also make a huge impact in this life and leave the greatest gift and legacy by saving someone’s life like my donor saved mine by making sure you are registered to be a donor online at: www.beadonor.ca or www.organdonor.gov for the US and make your wishes known to your loved ones! Did you know, 1 donor can save up to 8 lives!
Every day I think of and thank my donor for this beautiful gift of life and with each breath, I take she continues to live on in me and I think that is so beautiful. I hope to continue to make my donor proud by sharing our story and inspiring and helping others.