I’m Aware That I’m Rare: David Lake (489)

the phaware® interview

In this episode, David Lake a retired jet pilot, discusses his experience with pulmonary arterial hypertension, initially misdiagnosed as exercise-induced asthma. Lake also manages hemophilia, COPD, and irregular heartbeats, impacting his health significantly. Despite these challenges, he remains hopeful and active in his community and church. His story is a testament to resilience and the quest for better treatment through clinical trials.

My name is David Lake. I am from Oakley, Utah, which is a little community just east of Park City at an elevation of 6,500 feet. I have pulmonary arterial hypertension. I’ve been treated for several years with a pulmonologist for exercise-induced asthma. I was in the VA, because I used to fly jets, and the doctor just off the cuff said that she thought I might have pulmonary hypertension.

I’d never heard of it. She says, “You need to call your pulmonologist, and ask him to check you for it.” So I contacted my pulmonologist, and he said he did not deal with that, but he knew where to send me. He sent me to Intermountain Health, to the heart and lung team. In two days I was in there. They tested me. Then, Brandi Bolton, who was the nurse practitioner said, “We’ve got this study for a new drug.” And she said, “I think you might qualify for the study.”

I also have hemophilia. My heart’s in constant irregular heartbeat. Then, I have COPD. I’ve struggled with my breathing basically all my life. It’s ironic that I went and flew jets, because I didn’t know I had any of this. How do you get in and fly jets in the Navy with hemophilia?

So they did the testing. They told me it was a two-year study and that there were three groups. There was the placebo and then the half dose and the full dose. I am 99.9% sure I was in the placebo, because I went downhill. In fact, it was just kind of like holding on by the skin of my teeth to make it six months, because I was getting sicker. They put me on a lot of diuretics and that would make me sick.

In fact, at one point in the morning, they pulled me out of the study, and in the afternoon they put me back on, because I said I’d like to stick it out. Because I kind of felt with a bunch of the underlying things I had, it could be some valuable information. So just two weeks ago, it was the end of the six months. I was guaranteed either a half or a full dose. So I got the first shot. I’ve noticed an improvement.

I haven’t put my Superman cape on, because I still can’t leap buildings and can’t run, but I don’t feel like I’m going down anymore. It’s kind of like it stopped me, maybe even took me back a little bit. I get the next shot a week from today. We’ll see what happens as we go through.

I have always thought, because I use a nebulizer, I always thought it was this asthma. Now, I realize even when I use the nebulizer, I still struggle breathing. My oxygen content is always up in the upper 90s, so it’s not a lack of oxygen. However, they’ve told me to use supplementing oxygen, because it makes your heart so it doesn’t work so hard. What it does, it just makes you feel like when you get up and you take a couple of steps, you feel like you’ve run a marathon, and you’re just huffing and puffing. It’s a very, very uncomfortable experience to have that, because you just can’t breathe. There’s not much you can do for it. I can lay down. I can put on my CPAP and that helps the oxygen a little bit, but it’s basically when I try to do anything, it’s just really hard. Even to bend over and tie my shoes, which I don’t do anymore.

I can’t get the weight off. I’ve been gaining weight. I’ve never been like this before, and I can’t get it off. They thought it was water. You can’t fix this. You’re dealing with your mortality now. I hadn’t read about the drug. I mean, it’s just been approved in March. Then, just in June, it was just approved for PAH, and so the testing is going through. But the relief is I know kind of what’s going on, but the forecast was six and a half years and maybe up to 20.

So you deal with the mental that this is kind of a terminal disease and that it is a heart disease. That’s a mental adjustment you have to go through. Of course, I’m older and I’m not afraid of death and what happens after. It’s just, I don’t particularly look forward to the process, but it’s okay. It’s just what we’ve got. I’m not upset. I just have hopes that this drug might stabilize me, that I’m not going downhill as much. That it takes some of that pressure off my right heart. They just did a right heart catheter again when I went and got the real shot. My nurse said there was just a slight change, but not much change in it.

There’s two doctors that I deal directly with, and the one is the one that gave the right heart cath. They did an echo and a EKG. I have a watch that’s got all that junk on it, too. I’ve kind of come to the acceptance that you lay in bed or you lay down, and you rest and you think about all these things you want to go do. You think, yeah, I’m going to go do that. So you step up and take two steps and you say, “Oh, I don’t think that’s going to happen.” Physically I just can’t do it.

I have a farm. I have tractors. It’s gotten the point that I have to have my son-in-law help me hook the equipment on. I can run the tractor after I get in it, but if I break down, I’ve got to bring it in and he’s work on it. I can’t do it anymore, because I’d have to lay flat on my back and then I just can’t get off the ground. But a lot of it’s age too, because I am older. I’m 78. So these things are all right. It’s just that adjustment in your life to what you do.

I’ve been doing a service mission for the Church of Jesus Christ of Latter-Day Saints. I do a lot of stuff on the computer. I’ve gotten the point I don’t really want to do the computer stuff. It’s just kind of hard, and I have to force myself. That’s a different thing too. So there’s a lot of mental going on with this disease, because you’re sick, and you’re sick basically all the time as far as breathing. I get out of bed, and it used to be I could walk a little ways, but now it’s a couple of steps and I’m breathing hard.

I can’t carry the groceries in anymore. It’s kind of hard to watch my wife. I’ve gotten so that when I go to the grocery store, I use the little electric cart. That’s kind of an adjustment, because you’re embarrassed. I started carrying oxygen to church, and that’s kind of embarrassing. I never saw myself that way, but that’s where I am.

I found it’s nice to have a support group that you can go to, to meet other people that are like you. I’m kind of almost looked upon almost like the chaplain in there, because I talked pretty straightforward about staring the death in. This last one we had, which was a week or so ago, it was interesting that when I mentioned that I’ve been diagnosed with exercise-induced asthma, this other lady says, “That’s what they did to me.” Same thing. She’s going on the medicine that I’ve been taking experimentally, and she’s hoping that’ll make a difference in her. But same thing, she had gained so much weight.

It was nice. The one thing is you see other people, even though there’s no two people that are exactly alike, right? But they’re all dealing with the same kind of general thing. That’s been kind of interesting to talk to them about that. The other thing is, I didn’t know anything about this. So, a couple of the presentations, they really went into what the disease is. I’ve read lots of pamphlets and booklets and everything I could find on it.

Probably the best I found though was when I went and looked up the medication that I’m on. They had more information in there that I’d never seen before. That was very informative. It really was only about maybe a month ago that I really accepted the fact that this was my heart and lungs and not asthma. That this needed help to at least slow it or get better. But it wasn’t going to get better with just what I’d been doing. Before that, I just kept thinking, “Well, I’ll just go use my nebulizer and try to exercise.” But about a month and a half ago, I turned to my wife, and I said, “This really is a heart disease, and it is really my heart and lungs that are struggling here, not just the breathing.” That stress on your right side of your heart is real. About a month ago, a little more than that is when I finally clicked in my brain that that’s really what’s going on.

Maybe that was a good thing about not getting the real drug right away, because I might not have experienced that because the real drug seems to slow that progression. Being on this trial, I’ve held on to it with the hope that it would help me and help me feel better, but at the very least the results they gain from me can help others. So, the last month waiting for the shots, I mean, I was literally counting the days, because I was just getting so sick. I knew there were other drugs out there that if I would take them would help me, but it wouldn’t help the trial.

So, that’s why I’ve hung onto it. Then, it was very encouraging, the last thing they told me that they’ve had very, very good reports that this drug is helping probably better than any other drug they’ve got. So that’s encouraging. I keep that in mind. I’m optimistic. What you is you plan to live and prepare to die, but you don’t plan to die. Your life is going on, so you do all that you can, and you just don’t give up.

My name’s David Lake, and I’m aware that I’m rare, but it’s nice to know there are others that are rare too.

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