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My Life During COVID-19 While Waiting for a Lung Transplant

I’m Jim, and I live with my wife Karen in Harrisburg, Pennsylvania.

It’s been a pretty good 6-and-a-half years since I had my lung transplant at Temple. Everything was going well until last summer, when Karen and I came back from vacation. At that time, it hit me very quickly that I was having difficulty breathing and tiring out without doing a whole lot of anything. It turns out, I was in chronic rejection.

Getting my diagnosis

Temple did the necessary testing and in the fall of last year, I was diagnosed with bronchiolitis obliterans syndrome, or BOS. Turns out, BOS develops in about 75% of people who receive a lung transplant.

Bronchiolitis obliterans syndrome is where the bronchioles that branch off from the airways in the lungs become permanently damaged and scarred. For me, I have no difficulty getting air into my lungs. It’s getting the air out and distributing oxygen to the organs in the rest of my body.

This was the first time since my transplant back in 2013 that I had a problem, and I really became scared. I was more scared and more concerned about dying than before – and then COVID-19 happened.

Becoming a candidate for another lung transplant

In December, my pulmonologist at Temple, Dr. Cordova, suggested I might be a candidate for another lung transplant. In January, I started going through the re-evaluation process. It was like déjà vu. I completed the testing and they have everything they need to present me as a transplant candidate. As of May 7, 2020, I was put on the active transplant list.

My LAS (lung allocation score) is in the mid 30’s and in the grand scheme of things, with COVID-19, this may or may not be a bad thing. COVID-19 has really changed everything.

What my life is like in the meantime

With my wife Karen enjoying a stroll.

My happy place is being around my family, and being around and doing things with Karen. It’s sort of hard to do right now, but we are doing okay. With me being immunosuppressed because of the drugs and the transplant, I just can’t afford to get sick. With COVID-19, even a cold can put me in the hospital. I’m fully aware my life has changed significantly.

Life right now consists of getting up in the morning, having breakfast, taking my meds and doing my nebulizer. And then Karen and I spend time with each other. We play games and then we do our own things. Karen’s into puzzles or works in her garden. I’ll walk around the house or to the mailbox for exercise. Or we’ll jump in the car and take a ride. It’s a good time together.

There’s friction at times, and I’m sure others experience the same thing being cooped up in the house with family.

One of the things I wrote about my first journey is if you don’t laugh about what’s happening around you, you’re going to cry. I’ve done my crying before. I’m not about to do it again.

We speak with our kids or text them almost every day. Our kids set up a video chat with all of the family. Of course, there wasn’t much said you could understand, but we were all together. This is something that has now become part of our new normal.

Karen’s on the phone reaching out to friends to see how everyone is doing. Last night we had cocktail hour with friends on video chat. Sunday there’s a group of us that go out to breakfast after church and we had a virtual breakfast together. And last month, I did a presentation for Donate Life over at the Med Center via a Zoom meeting. So, we stay busy.

Having support is key

Support groups are very important. Through them, we can give other people some sign of hope – that there is a positive outcome to transplantation. We can’t always do it in person, but we can do it through a video meeting.

There are many people out there who say, oh, I don’t need a support group; I can do this on my own. I don’t think you can do it by yourself.

We belong to several support groups. With support groups, you can be around people who are going through the exact same thing you are, and you can talk about your experience. We don’t talk much about COVID-19.

Karen's really the one who keeps me going

Karen's really the one who keeps me going, which just goes to show you that you can’t do this alone.

Day-to-day, most of us are self-isolating. We’re doing things to stay sane, like playing games, writing and reading books. So I guess sharing tips on how to stay sane is important, and we talk about that in our groups.

My advice for being on the transplant waiting list

The thing I’d say to a person who is on the transplant waiting list or is not coping well with COVID-19 is to stay strong. Right now I know several people who were listed and then taken off the list temporarily because of COVID-19. Most hospitals are only doing transplants in life-threatening situations.

There are bad things that are going to happen, but we’re going to make it through this. We’re going to get through it together. We listen. We do what we’re asked to do. We may not like it, but someone out there is smart enough to make recommendations for our health – and that’s the medical community. Our world is going to be different when it’s all said and done – when it’s all over.

As the restrictions start to relax, I realize that even though they say we’re going to have people walking around, I can’t get sick. With COVID-19, there’s a whole new set of rules. If you’ve been transplanted, you realize everyone will have to adapt to a lifestyle you already adapted to long ago. Normalcy is not what it was. And I don’t believe we’ll go back to where we were – not in our lifetime.

Karen goes out of her way to take care of me. She scolds me a lot and she’s very cautious. If I go outside, she says, “Don’t forget to put your coat on or wear your mask.” And sometimes I’m only out for a second. But I realize she’s right. She’s really the one who keeps me going, which just goes to show you that you can’t do this alone. You need someone to look after you, even if it’s just someone calling to say hi.

I’m so fortunate to have Karen on this journey with me. I know there are a lot of people out there that may not be as lucky as me.