My husband, Chad and I met when we were 16 and 17 years old working at a local grocery store. He went down the checkout lane asking every girl out until someone said yes and that someone was me. Then I didn't see him for 2 weeks after that and thought he had quit. No big deal right? I didn't even know the kid. When I did see him again I asked him when he was going to take me out and well, the rest is sort of history.
It wasn't until we had been on a few dates and started hanging out on a regular that he told me he had cystic fibrosis. I, of course, had no knowledge of what that was, so I got on the computer and googled it...bad idea! But even with all of the horrible things I found on google, I dove in head first.
Our lives were pretty normal, he only had 2, if that, hospital stays before we got married and even after we got married ,he still didn't have many hospital stays. We loved being outdoors and went camping as often as we could. It was probably 6 or 7 years into our marriage that the hospital stays started getting more frequent. No biggie, we'll get through this together. When they started getting to be 2 or sometimes 3 hospital stays in a year was when I really started getting worried. Then his CF team started talking about transplant.
In the beginning Chad would say he would get a transplant only if he really needed it not something that he was really willing to discuss, because he had plenty of time before he needed it. Then things with his job weren't looking so good, the company was planning on closing his locations and moving to another part of the state. When this happened Chad decided that he would go out on disability. Which seemed perfect at the time because his hospital stays seemed to be happening a lot at that time.
Fast forward to 2016ish, it all starts to blend together at this point. Chad has been in and out of the hospital more times than I can count. Things were so bad that our local hospital refused to keep him for more than a few days. They kept telling him that he needed to be admitted were he saw his CF team. For us that wasn't reasonable, going to the hospital were his team was 2 1/2 hours away. But that no longer was an option for him and we made that awful drive up to Dartmouth Hitchcock from there on out.
During the summer of 2017 Chad started his evaluation for transplant. We had an initial meeting with members of the transplant team to see if Chad would be a good candidate for their transplant program that June. When we got word that they had accepted him into the program we went down to Mass General in Boston weekly for him to have testing done. He finished testing at the end of September, beginning of October and was listed for transplant on October 26th, I believe. At this point he had continued to go in and out of the hospital so it's all kind of blurry, date wise. At one point after him being listed they had a helicopter on standby at Dartmouth Hitchcock when he was inpatient up there.
After being listed we had been told that it would be about 34 days from time of listing that there could be lungs. Waiting was the longest time period in my life. Every night I would pray for that call, but at the same time feel extremely guilty because in order for Chad to receive this gift someone else was going to have to lose their life. There is no real good way to describe all the feelings a person goes through when you're waiting for something like this. One of the hardest experiences of my life and again, Chad was in and out of the hospital constantly.
Chad received his first call for lungs on December 29th. I was at work when he got the call, I finished what I was going and waited for Chad and his parents to come and pick me up. I had already packed us go bags, something I learned to do after Chad's first ambulance ride to the hospital. We had barely got started on the testing they do, blood, urine, etc., when the transplant nurse came in and said that they lungs were no good.
I had always said that I would lose my mind if he ever had a dry run. A dry run is what this was called because the lungs weren't good. Surprisingly, I was at peace with this. We headed home to New Hampshire from Boston and waited for the next call.
Well, I tell ya what, we didn't have to wait long! Chad received his 2nd call for lungs the very next day, December 30th. They put us on what they call stand by, they told us to have our stuff ready for when they call again. The transplant nurse called Chad back at noon that day and we headed back down to Boston. When we got to the hospital they started prepping him and doing the standard testing. We still wouldn't know if they lungs were a go until after 2 am the next morning. That was the longest wait of my life! No one came in to tell us how things were going during surgery, Chad's parents, brother and sister-in-law and our niece, as well as his aunt and uncle all came down and waited.
We got the call that his was out of surgery at 10 am on December 31, 2017. What an amazing way for us all to start the New Year! When the surgeon told us that everything went very well, I lost it and started crying like a baby. Thank the good lord our family was there with me. Life after transplant has been amazing and challenging all at the same time. On one hand we are doing so many things that we haven't been able to do in years and on the other I just don't know how to deal with this new life of ours some days, but we will get through it.
Life with a CF Spouse isn’t an easy one, but it is totally worth it....