My Friend Rick (Part 4)
Rick: Yeah. I really liked it. You know, one of the things I learned which I've shared with people is that when you're waiting for a transplant you want to maintain your best possible health because you'll get a better result; you'll get a better recovery. Whether it's losing weight or doing more exercise, the healthier you are going in, the higher likelihood of a full and quick recovery.
So I was at a reasonably trim weight and I did the rehab in the fall of 2018. Once it was over in November, I wanted to continue it by myself. I had some options to continue or go to the gym and I've never been a gym person.
Kevin: Yeah, me neither.
Rick: All of a sudden it's winter and breathing outside was hard. It wasn't worth the trouble. Even just to get up and get in the car and get dressed was a chore. So I got in the car and went to the gym - I checked out the Ridgewood YMCA. The best I could do was treadmilling at home. I can do it better now but at that time it was really just slower speeds and for shorter distances. Just hanging on.
Evaluating risk factors
Just to get back to the coronavirus period, you know it's still here. I know I'm gonna be one of the last two groups to be given the green light yet to return to normal because of my age.
After evaluating the risk factors that everybody started talking about in March and April, I wanted to ask my doctor about my risks. I am immunosuppressed I always will be in a high-risk category but I asked, “Well do I still have chronic lung disease?”
She said, "Well, one lung is barely functioning. The other’s fine but you still only have one working for all practical purposes. So, yes. I would say you do have chronic lung disease."
I guess that just means I got less margin for error.
COPD and appetite
Kevin: Let's talk about this - I have to force myself to eat at times. I don't have much of an appetite. It happens to a lot of people with COPD as the disease causes what they call “long lungs”.
Your lungs are expanding and drooping, resting on your abdomen which suppresses your appetite. You just don't get hungry, so you have to remind yourself at times. Luckily, I'm here with the family so I have my meals with them, but otherwise, if you're by yourself there’s a danger in becoming too thin. Kind of the opposite of what you're talking about in terms of watching your weight and all that kind of stuff.
Rick: Well that's an interesting thing to tell me because I went on this trip in the mid-spring of 2019. I didn't watch my weight and lost a few pounds. Then I lost like another seven or eight pounds, inexplicably, and I was at the lowest place I've been in years. I later realized that lucky for me, I was going to France and I could eat to my heart's content and I could gain 6 or 7 pounds.
It really was one of the most fortuitous things of my life, to go to France and play. I realized that when breathing is that much of a struggle it takes a lot of energy. When you're away in a city like that you do a lot of walking and I did as much as I could.
All that difficulty breathing burns a lot of calories, but you know, even with two weeks in Paris, I gained only a pound.
Kevin: You were using a portable tank in Paris as well?
Rick: No, no tanks on that trip. I was still breathing pretty well and had not yet been advised to get tanks. That said, I couldn't walk more than a block and a half without stopping.
Kevin: What more are you looking forward to once we hopefully get through this COVID thing? Things you haven't done yet that you're dying to do since the recovery. Are you a bike rider? Have you ridden bicycles around?
Rick: No not really. I have one up on the garage. I've never been a great exerciser so now I'm really doing it because it's what I need to do. Whether it's walking or biking is to be determined. Yeah, but I kind of just want to live my life, and I want to not work that hard. I can stop at some point soon. I'd like to be traveling. Yes, I'd like to be living. You don't know how much time you have, none of us do, I'm am relatively healthy compared to the way I've been. There are places to go with people to see and things to do.
Kevin: I look most forward to walking. Even when we lived in Brooklyn, just walking around Park Slope and all, I love it. That's what I miss most of all.
Rick: I was doing my walks in the park and looking for the next bench. I could go maybe two minutes and then I just would have to stop. I would go with my oximeter and it would regularly quickly plummet to 80 and I'd say "better stop".
What to be cautious of
Kevin: What do you have to be most cautious of? Infection? Is that what it is?
Rick: Well, yes, to the extent it can trigger rejection. They all talk about rejection which can be triggered by getting some kind of infection. That's the worry you live with for the rest of your life.
There are different terms like acute rejection or chronic rejection, and it can be asymptomatic, so things can be going on when you're developing a rejection state over a long period of time. So yes, you have to be vigilant and you have to be serious about taking your meds.
I am finding, and I don't know if this is true for everyone, but I went into this state of good health outside my lung disease. I'm following all the rules and not getting sloppy. Do I miss a day once in a while? Yes, because it’s inevitable.
Kevin: If you don't mind my asking how old are you?
Rick: 62 and a half. Anyways, Kevin, anything else? Cause I'm gonna get going. I hope that's of interest and of use to you.
Kevin: Always. I'm going to stay in touch and check up on you and I'll let you know what's happening with me.
Rick: Hang in there.
Kevin: Thanks again. Talk to you soon.
Do you have a COPD exacerbation tool kit?