My Friend Rick (Part 3)
Earlier this year, I wrote two articles (Part 1, Part 2) about a new friend “Rick” (not his actual name). I had been making an effort to be placed on the lung transplant waiting list and a mutual friend put us together. Rick had recently received a transplant.
“Rick” had developed pulmonary fibrosis or interstitial lung disease by being exposed to carcinogens at the World Trade Center on September 11, 2001. In 2019 his breathing became extremely difficult. The symptoms of pulmonary fibrosis are very similar to those of COPD and the benefits of a lung transplant are precisely the same.
A cough that became worse
Rick: I was in the toxic cloud running away from the World Trade Center. The South Tower collapsed and having escaped the first tower, the North Tower, I was caught in the black cloud. I survived that day, and then about 10 years later or so (2011), I developed a cough that my doctor at the time so I was just an allergic cough.
But by 2016, 15 years later, my newer doctor thought I needed to get the cough checked out because it was getting a little worse. That's when I went to a pulmonologist and was diagnosed with interstitial lung disease.
And after running through a myriad of questions, the likely conclusion was that I had inhaled something in that cloud. Well, that lodged in my lungs and resulted in lung disease.
A good time to reconnect
I had not spoken with Rick since the arrival of the pandemic. I was thinking how awful it must have been for him to be to finally be able to breathe again and have almost everything – every activity –shut down. I wanted to check up on him.
I was also informed last week that I was officially on the lung transplant waiting list at New York/Columbia Presbyterian Hospital. I thought it would be a good time to reconnect.
Kevin: Hey Rick, it's Kevin.
Rick: Hey Kevin How you doing?
Kevin: Is it a good time?
Rick: Yeah, we can chat. Sure.
Kevin: So – to fill in some of the blanks for me and to flesh some things out from our previous conversation, at the time of your diagnosis, you were still working - going to your office and everything?
Rick: It was growing more and more difficult and I was continuing by commuting into Manhattan from New Jersey throughout 2017 and into 2018. But I stopped on October 31 of 2018, because it just became overwhelming to me. At one point, I flew to Florida to see my mother and the flight was difficult and I’d had some trouble catching my breath.
Kevin: Right, right. But if I recall correctly, you were using external oxygen for a number of months by that point right.
Rick: Well, yes. I always get confused if it started in January of '18 or '19. I think it had to be '19 because I went to Europe that summer and I had it (the oxygen) with me. When I went to see the doctor they told me my numbers were so bad that the concentrator wasn't doing enough, and I needed the portable tanks.
Kevin: Because you get better output from the tanks as opposed to the concentrated?
Rick: You get pure oxygen.
Kevin: You know it's funny you say that if you don't mind me interrupting. I notice when I go to New York/Columbia (hospital) that if I use their oxygen, I can feel the difference right away, as opposed to you know what we have at home and stuff, you know,
Rick: You mean using the tank?
Kevin: Yeah, yeah. I get tanks as well, but it still feels like better oxygen in the hospital.
Rick: You have to stop going to “discount oxygen!”
Kevin: Ha! Exactly, exactly.
Rick: And so things continued to deteriorate into 2019. I began to need oxygen tanks in at least by late spring/early summer of that year. The declines started accelerating significantly in 2019 and I initiated the process to get on a transplant list and was formally put on the list in September of 2019. I was put on the list early September 2019.
And a week later I got the call.
Turns out it was a dry run my first and only dry run, but I did know that my breathing was getting more and more difficult and I really, I had to, you know, plot out every move I made so much.
So, September of 2019, I had the dry run, but about a month later on October 2, 2019, I got the call, “You’re up!” and I had the surgery. Yeah, so that's kind of how I got to the point of transplant.
What's been happening lately?
Kevin: Tell me what's been going on since you and I spoke four or five months ago when I did the interview with you.? We are now we're in the summer. What’s happened you know since the beginning of COVID?
Rick: Okay. Well, it hasn't affected me so much because I was not quite under lockdown but prior to a COVID19 virus, I was wearing a mask when I was outdoors.
Kevin: Yes, I remember.
Rick: You couldn't come to my house unless you were healthy and not had been close to anyone who was unhealthy for the preceding period. So limited access only. Went out a few times, a couple of times to the movies and then would sit at the end of the row. Or I’d go to a restaurant at like 530 instead of eight o'clock right when it wasn't as crowded and kind of require a table by the edge.
Kevin: So you felt like many of us have felt you - were quarantining before there was a quarantine.
Rick: Like literally in a sense like I couldn't go out, right. I'd say I was kind of doing, you know, maybe two thirds or three-quarters of what we all started doing a few, you know, once it came down. And so I was going to occasionally the supermarket. Occasionally, but again going when it's not crowded. Really avoiding crowds, going to the movies and I was like a few times we did like “off hours”.
Kevin: Were you getting, you know, side glances because you were wearing a face mask? Were people like looking at you oddly.
Rick: (laughs) Oh absolutely, yeah. Like – “what’s with this guy?” One thing I really remember is just before when the coronavirus started in the US or was more of a China thing or that's what we were hearing at least. I was in Starbucks and some guy comes up to me and says, “So what do you just back from China?” I said no I had surgery. And then he proceeded to diagnose my entire situation accurately.
Kevin: Is that right?
Rick: Yeah he said oh I said like, Oh so you're wearing a mask, you need to stay away from people. And he just, he kind of knew the routines as if he had been through it.
Kevin: Oh, That's funny.
Rick: Yeah so having been through it, and having established a routine at home it was kind of easy for me to make it a full-time thing. Only now I needed help with food I couldn't go out. But my girlfriend was under the same restrictions as me, and the first several months she was the only person I really had any interaction with and was living in the same condition. So, in a sense, it kind of assisted my recuperation, because all the temptations that bring us all outside I couldn't do.
I was away from people, which was good, it was the first winter in decades, I can remember not getting a cold because I just didn't interact with people, yet. I mean I had a cleaning lady who would come to the house but she knew to be careful but you know they didn't need masks at that time I just, you know, kept my distance.
The timing was good for me in the sense of, I had a few months of normal recuperation. And then if I had to live along with the rest of the world, and a pandemic pose. I was set up for it. I was kinda lucky.
I was breathing
Kevin: So we, you know, we're not back yet (Pre-COVID 19) and I'm not sure when we're gonna be back you know – it seems kind of iffy. But for that short period of time, it must have been glorious to get out and walk around again.
Rick: Agreed - yeah, yeah, yeah, it's pretty amazing. I’m sure I told you (he did) at Valley Hospital, there was this woman older than me, very slender on the treadmill, running. And I said to myself, “what's up with her?” Well, it turns out she had a transplant a few months ago. And I’m thinking, “Oh my God, I'll have what she's having!” One day I asked her, so how long from surgery did you start to breathe? And she said, “The next day, you can breathe.”
Rick: And, and I was blown away by that, you know, but it's true. I needed oxygen the first couple of days at the hospital, just being really careful. But I could take it off and I didn't really need it.
Instantaneously I had like a healthy working lung. It wasn't any fun being in a hospital with, you know, tubes coming out of everywhere. There's a lot of discomforts and all. But still, I was breathing.
Do you have an emergency plan to deal with your COPD during a major storm?