Hi (again!) Carrots N’ Cake readers!
It’s me, Lindsay, here with an update on the most super of all supermen, my fiancée Chad. For any of you that didn’t get the chance to read Chad’s incredible story, here’s the link: Cystic Fibrosis Sucks.
Last time we spoke, Chad was about 40 hours out from his double lung transplant after a long, tough road getting there. While I’d love to say it’s been a breeze and gone as scheduled since then, in truth, it hasn’t. Chad faced many challenges in the month prior to surgery, and as much as we hoped otherwise, he continued to face them afterwards.
Forty-eight hours or so after surgery, the nurses began the process of weaning Chad off of all of his sedative medications in order to wake him up. We were all so excited to tell him the news of his transplant! Unfortunately, because he was severely immunosuppressed (purposely, through medications) and susceptible to any and every bug and infection, his family and I were forced to stay outside the glass walls of his room for his safety. One of our most favorite nurses, Elisa, took care of him that day and as soon as he was awake enough to understand, she broke the news. We heard her tell him that he had new lungs…and although he was still groggy and a bit sedated, there was no mistaking his response: “No shit.” A very Chadly response, we were all so glad to know that our boy was still very much himself! The smile on his face each time he was reminded about his new lungs was priceless – just to see him smile again was the most amazing feeling.
Only a few days into recovery, Chad’s new series of challenges began. Daily monitoring of his bloodwork showed that he was in acute renal failure. This was certainly not good news, but wasn’t surprising to anyone. Prior to the transplant, his kidneys had been affected by the severe infection in his blood, so going into surgery, they weren’t in the best shape. Surgery alone is a major stressor for the kidneys, not to mention everything else he had going on. The ICU team placed Chad onto a temporary dialysis machine to take the stress off of his kidneys and to help filter and remove toxic waste products from his blood. After just a few days on the machine, his kidneys bounced right back into action and have been going strong ever since!
About a week later, Chad’s doctors were still unable to wean him off of the ventilator. Upon closer look at his daily chest x-rays, they discovered that he had a small air leak in his right lung, a relatively common complication from the surgery. Again, they were not very surprised. Chad’s nutritional status going into surgery was very poor and his healing was greatly affected by it. The air leak was the result of a non-healing suture site and was likely the cause of much of his inability to breathe adequately off of the ventilator, therefore, it had to be fixed. So, after a few days of it not sealing up on its own, Chad was taken back to the OR, his incision re-opened, and the leak fixed. Chad returned to the ICU from surgery around 3am that day, and by 7am, it was obvious that something was not right. His blood pressure was extremely low and there was a large amount of blood coming out of his chest tubes. He was immediately taken back to the OR where they opened his incision again and searched around for the source of the bleeding. Thankfully, they found it quickly, and were able to stop it.
Over the next few weeks, things went pretty well. Chad started to make progress weaning from the vent, and was working daily with both physical and occupational therapy to get stronger and back to himself. Unfortunately, we encountered another bump in the road when one day, one of the chest tubes suddenly started to drain a very large amount of blood. A chest x-ray showed that Chad had another hemothorax (blood accumulated in his lung). Because he had known blood clots in both of his arms, he had been on a continuous infusion of heparin, a blood thinner. It was obvious that the heparin had caused the original bleeding site to begin to bleed again. When they discovered this, the heparin was shut off immediately, and after a few hours, the bleeding stopped. However, Chad still had a large accumulation of blood just sitting in his chest. It wasn’t really causing any problems, just taking up space that the lung would otherwise be able to occupy. Because it wasn’t really hurting him, the doctors gave the blood about two weeks to drain out of the chest tubes on its own. After that time though, it still had not drained, so they once again brought Chad to the OR to clean the blood out and finally give his new, healthy lung the chance to expand fully. Fortunately, all went well, and we hope that this was, and will remain his final trip to the OR!
Since that time, Chad has been doing well overall, but of course, there have been many more ups and downs. The “normal” transplant course puts patients out of the hospital and back at home about 3 weeks out of surgery, but because of how sick he was going into the transplant, his post-operative course has been much more complicated. He’s now dealing mostly with issues related to fluid balance in his body. The vasculature of his newly placed lungs is very “leaky” and he has had recurrent episodes of pulmonary edema (fluid in the lungs) requiring chest tubes to both be pulled out and put back in. This has proven to further complicate the process of weaning from the ventilator, but Chad continues to kick butt right through it all. Last week, he was transferred out of the ICU and onto a floor called the RACU – the respiratory acute care unit, an area of the hospital that specializes in weaning patients off of ventilators in complicated cases like his.
Currently, Chad is asleep next to me, breathing all on his own (off of the ventilator!) through his tracheostomy. In the last week, he has made incredibly progress and has been able to spend far more time off of the ventilator than he ever could before. In fact, he has been off of the ventilator now for nearly 32 hours straight. A few hours ago he had a bronchoscopy done to clean out his new lungs, at which time they also took biopsies of his lung tissue to do routine tests to check for any signs of transplant rejection. He shows no outward signs, so here’s hoping all looks clean! In addition to making progress off of the ventilator, Chad has also been building his physical strength back. He can now walk all the way to the end of the hallway and will only get stronger with each passing day.
Once he is discharged from Mass General, Chad will have to go to a rehab facility here in the Boston area to continue intensive physical and occupational therapy before he can be cleared to go home. I will remain here with him throughout so that we can continue to provide each other with motivation, love, and support. Because we have been here for even longer than we ever could have expected, and will continue to be here for a while, there remains on us a definite financial strain. Chad’s amazing mother, Darlene, has been home in New York, working tirelessly to enable us to remain here. I don’t know what we would do without her. In addition, Chad’s friends have set up another online donation page to raise funds to help pay for the rest of our stay here. If you are able to help in any way, here is the link to the donation page: https://www.giveforward.com/fundraiser/fg03/chad-kiniry-s-lung-transplant-recovery-fund. Every little bit really does help! The donations that we received after my previous post helped immensely, and I want to thank you all SO much. There are no words to adequately describe how thankful I am for each and every one of you.
Please keep Chad, my superman, in your thoughts and prayers. He inspires and motivates me every minute of every day, and I hope that his story helps to do that for all of you as well.
Hopefully the next time you hear from us, we will be back home, living our second chance at life together outside of the hospital. We can’t wait!