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a man pulling open his shirt to show his scar from a lung transplant

My Friend, Rick (Part 1)

I’ve been doing as much research as I possibly can about lung transplants. I previously wrote that I’ve been pre-accepted into the New York/Presbyterian/Columbia Lung Transplant Program. That means that, while I’ve met many of the criteria for a transplant, I’m not quite there yet.

Program qualification

Testing for qualification to the program is extensive. I’ve spent four entire days at the Lung Transplant Program Center over the past 6 months. But I’m not on the waiting list just yet. Essentially, the testing is to investigate if the rest of your body and its organs can withstand the rigors of the transplant. As you can imagine, it is quite invasive.

“Would you like to meet him?”

Ironically, I was recently introduced, by a friend, to a neighbor of mine in Bergen County, New Jersey who recently underwent a lung transplant at the same Columbia program. My friend and I had spoken on a number of occasions about my progress in the effort to be placed on the Lung Transplant Waiting List. He said, “Well, this may come as a surprise but a mutual neighbor of yours and mine just came home from Columbia after receiving a new lung. Would you like to meet him?” “Are you kidding?” I said. “Absolutely.”

My friend, Rick

For the sake of anonymity, I’ll refer to him as “Rick.” Rick developed pulmonary fibrosis or interstitial lung disease by being exposed to carcinogens at the World Trade Center on September 11, 2001. The symptoms of pulmonary fibrosis are very similar to those of COPD and the benefits of a lung transplant are precisely the same. It took almost 20 years but last year his breathing became extremely difficult and was growing worse rapidly. He became very restricted in what he could do. He sought help and fund an excellent pulmonologist here in Bergen County, New Jersey.

Rick: Dr. Smith, (not her real name) said to me at our first appointment that I would quite possibly need a lung transplant. And I said, ‘You must be joking. That’s palpably absurd. There’s no way I’m going to get to that stage.’

A few months later, after he had a lung biopsy that confirmed the diagnosis, Rick decided to go to a top doctor at Mount Sinai Hospital in New York City because that doctor had a great deal of experience with patients who had exposure on 9/11 down at the World Trade Center.

Rick: So I kind of transferred to Dr. Jones (again – not a real name) at Mount Sinai. Unfortunately, they tried various treatments to treat this kind of pulmonary fibrosis or interstitial lung disease, and nothing worked. My decline continued and about early this year (early 2019) it really started declining more quickly. So, Dr. Jones at Mount Sinai said, ‘You need to choose a (transplant) center, and you need to start the evaluation process.’ It takes two months, and she said if you get on the list, you could ‘get the call’ in a couple of days.

Me: So, what was your reaction?

Rick: I said, ‘Are you kidding me?’ I was gasping and coughing, but I thought you had to be sprawled out on the ground to be eligible for a transplant. But she said no and then I went through the process at Columbia.

Me: It sounds like you had a similar experience to mine.

Rick: Exactly. I was formally put on the list for a transplant at the beginning of September. I got a call a few days later, but it turned out to be what they call a dry run. Yep, like a false call. So, I was actually in the city that day and they said, ‘Come over to the hospital. Sit tight.’

Me: Wow. So then…?

Rick: It didn’t work out. But then on October 2nd of this year (2019) I got a second call. Three weeks and an hour ago to this minute, sitting at the desk in my home office, and I said ‘This is it, this is surreal.’ I was told to come on in as I was next up, and if the lung passed all requirements, it would be mine.

Me: Were you excited? Frightened? I think I’d be both.

Rick: So, I called my girlfriend. I said, ‘Let’s go, get your bag.’ We were waiting for a few hours for the preliminary test results, then at 11 o’clock or 12 o’clock they rolled me, Wednesday, October 2, and they transplanted a lung.

Me: Incredible. What was recovery like?

Rick: 15 days, no fun at all.

Me: Ugh.

Rick: In my life I’ve spent almost no time in a hospital. I had one hospital (stay) when I was five years old to have my tonsils taken out and I had one night at Valley (hospital) to take this lung biopsy. Nothing in between.

Me: And how do you feel now?

Rick: Now on the road to recovery. So far so good. Praying for the long haul.

Part 2 to Follow

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • BWscaregiver
    2 weeks ago

    My husband is listed and we wait for a call. But we have found that the LAS scoring is not friendly to COPD patients. It’s like they are on the tail end of scoring. I just hope he gets lungs before he gets too weak to perform walk tests and such. He’s already having issues with his heart working harder to compensate lack of oxygen. Bata Blockers on board now after Doppler shows no heart problem. Prayers for all of you.

  • KevinDavitt author
    2 weeks ago

    DEar BWscaregiver – I’m headed for yet another CT scan myself this afternoon. Not familiar with LAS scoring. Is your husband listed at more than one facility?

  • Leon Lebowitz, BA, RRT moderator
    3 weeks ago

    Wow, Kevin, this is quite the story! I am riveted and so looking forward to reading part 2!

    My heart goes out to you for what you are presently undergoing to make all this happen for yourself and your family.

    Hang in there!!
    Always,
    Leon (site moderator COPD.net)

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