Hi there Carrots N Cake Readers! My name is Lindsay and while I don’t have my own blog, I am a frequent reader. The lovely Tina has given me the opportunity today to share a story with you. It starts like this: cystic fibrosis sucks.
My partner, Chad, is 32 years old and was diagnosed with Cystic Fibrosis (CF) when he was a year old. He has taken incredible care of himself over the course of his life (healthy lifestyle, daily medications, breathing treatments, and frequent hospital stays to receive antibiotics), but over the last year has become sicker and sicker, which is inevitable with CF.
Last fall, Chad began to use continuous oxygen. In December, he was put on a transplant waiting list, making him an active candidate for a double lung transplant. While there is currently no cure for CF, a lung transplant rids the body of the diseased lungs and allows for the addition of an average of 5-10 years of life. We live in Northern New York and no hospitals in our area deal with transplants, so Chad was listed at Brigham and Women’s Hospital in Boston.
After about six months on the waiting list, Chad was admitted to the hospital in Burlington, Vermont (our “home” hospital) on June 7th for a routine 2-week stay to receive antibiotics. Over the course of the stay, instead of feeling better like he usually does, Chad started to feel much worse. He had no energy, was increasingly short of breath, and running very high fevers. Things eventually got so bad that he had to be transferred to the intensive care unit and placed on a ventilator to breathe for him. When the doctors at Brigham and Women’s heard about the deterioration in Chad’s status, they de-activated him on their transplant list, stating that he was too sick to survive transplant. This was devastating for all of us. It seemed that what he had been waiting for for so long had so suddenly been taken away.
When it seemed like we were out of options, we were notified by Chad’s doctor that there was a still a chance. She had made some phone calls, and after some information sharing and persuasion, he had been accepted for evaluation by the transplant team at Mass General. Only a few hours later, Chad was flown by helicopter from Vermont to Mass General. Not long after he arrived, the doctors found that not only were his lungs no longer functioning, but he was also septic, meaning that his entire body and bloodstream were infected with many, many strains of antibiotic resistant bacteria. Over the next few days, Chad’s body went into shock and started to completely shut down. He was put on something called an ECMO machine, which was basically a bypass machine that took his blood, circulated it outside of his body and through a machine that did the work of his lungs for him. The blood would get oxygenated, and then enter back into his body through a catheter inserted into a large vein in his neck. Unfortunately, after a few days, this too stopped working and we were told by the doctors that they had come to the last resort. This would involve inserting the machine tubes that carried the blood directly into his heart. It would involve opening up his chest and there was a good chance that it may not even work, but it was the only option. On June 7th at 10AM, doctors wheeled Chad out of his room and down to the operating room, ready to do the procedure. On the way, they received a surprising phone call – a pair of healthy lungs that were a match for Chad had just been donated. It could not have been better timing.
After nearly sixteen hours in the operating room, at 2:30AM on Monday morning, we heard the words we’d been waiting to hear for so long: Chad had new lungs and they were functioning beautifully.
Currently, we are about 40 hours out from surgery, and Chad is doing well. He is still sedated and on a ventilator to help support his new lungs, but is stable. The lungs themselves continue to function well and he has been started on all of his anti-rejection medications. As he was sedated when he went to surgery, he still has no idea that he even received the transplant. His family and I so look forward to the moment that he wakes up and we’re able to tell him that he has a brand new set of beautiful, healthy lungs.
Because of how sick he was before transplant, Chad will likely remain here at Mass General for at least a month. He will need lots of rehab and physical therapy as well as the usual post-transplant care. After he is discharged, we will have to stay in Boston for at least a month to be able to attend follow up appointments, etc. As our home is nearly five hours away, this puts an enormous financial strain on us. Finding affordable short-term housing close to the hospital that is clean enough for a post-transplant patient to live in has been very difficult. The cost of food and simply living away from home is immense as well. Friends of Chad’s have so kindly set up a donation page online for us to help with these expenses and Tina is so graciously allowing me to share this page with you.
I hope that Chad’s story inspires all who hear it. Throughout this process, we were told that he would probably not live through the day/night on several occasions. Even so, Chad kicked butt right through and has made it to this point, right where he wanted to be. He is incredible – we have all nicknamed him Superman. He truly is. I ask you all to think about Chad’s story, his incredible will to live, and help us in any way that you are able. Here is the link to the donation page.
I also ask you all to please consider organ donation. Without it, Chad would not be here with us today. We are so incredibly thankful to the family that made the decision to donate their loved one’s organs. They have given Chad the ultimate gift: the gift of life. They have also given me the amazing gift of a second chance at life with Chad. There really are no words to describe how thankful and grateful I am. If you’d like to legally register as an organ donor, or know someone that does, please visit this link: http://www.organdonor.gov. One person can save up to eight lives!
Thank you all so much for reading – now go eat some cake! And maybe a carrot or two…
Xoxo Lindsay (and Chad!)