Jun 23, 2020
Alex Minnick discusses his role as a pulmonary hypertension caregiver to his father, PH patient, Dan Minnick, over the past decade in this Father's Day Edition of the phaware podcast.
My name is Alex Minnick. I live in San Clemente, California. I have a father with pulmonary hypertension. I'm 19. I've lived with my dad with this condition for the last 10 years or so.
My dad was diagnosed with it between 2006 and 2008. My dad was having trouble breathing, very hard to exercise. Just kind of stuff was slowing down. There were some problems, so my dad went in for a regular checkup. He was born with it, but it was an inactive condition. It became active around that time, but he wasn't diagnosed until 2011, when doctors realized that this wasn't just some lung problem or some other condition. They finally figured out it was pulmonary hypertension through a specialist in Utah.
When my dad was diagnosed with this disease, I was about 10 to 12, around that area. I was younger, so my memory isn't exactly solid at that time, but I do remember my dad was progressively getting worse and needing more oxygen. He was using 10 liters of oxygen all the time. He needed it to sleep. He needed it to walk… to do anything. We lived in Utah before we came to California. So, when my dad was living in Utah, he was very bed bound and couch bound. He couldn't really do anything. It took him a long time, about an hour or so to get to the bathroom and stuff like that.
I didn't really have a role at that point in time, because I had my older brothers and I think they helped him out a little bit. Members of our church. [Members of the Church of Jesus Christ of Latter Day Saints], we would go to church on Sundays and stuff like that and we'd have people from our church that would come over and help him out and just help with basic things. But my dad, as he was dealing with his condition, his doctor gave him basically an end of the line kind of death date. He told him that pretty much in his current status, the disease had progressed too rapidly, [that] there's not anything else they can do. His specialist told him, he's like, "I've done everything I can. I've given you all the medications I can. I'm given you everything that is possible for your stage." And the doctor's [was] like, "Christmas is coming up, it's your birthday, it's the end of the year, and it's the end of the line for you at the same time, you're not going to live past New Year’s very much. You might live a couple of days, but that's about it."
So, that was my dad's last date, and my dad didn't tell any of this. I didn't know this for a long while after. My dad didn't tell any of us, he just said, "Hey, how about this year we'll skip the presents, we'll go on a nice vacation to California. We'll go spend some time with the family, enjoy each other, we'll rent a hotel, we'll do that for a weeks or two, right?" So, we went down to California and New Year's Day came and went and in days after, and my dad was still going. Then, my dad just miraculously, he stopped needing as much oxygen. He went down to about five liters of oxygen. A month went by, he just kept living. So, my dad defied doctors. The doctors told them there was no way, there was no possible way he could live, but he defied all that.
At the same time, I kind of started seeing [the improvement]. I can definitely recollect that much that my dad, went from [requiring] a lot of oxygen to him being able to go walk on the beach, go walk a couple miles, go spend time with us, be active, get up and go around. It was day and night, the change between Utah and here. My dad stayed down here with me and two of my brothers, stayed here in California. We just stayed in a hotel. We weren't thinking anything permanent, we were just trying to figure it all out. So, we just kind of lived in life functions. My dad took us to school. He did what a normal parent would do. We just kind of developed a life down here for the time being, while we figured things out.
It definitely is a strain on everyone, because it's so complicated that so much of this stuff happens and most of it happens pretty quick. This disease is very progressive. Most patients I've heard don't live very long. They live very few years with this condition.
My role was pretty much just making sure he had his oxygen, picking up things and just kind of helping out a little more. So, my role as the caregiver wasn't really giving him his medications and stuff like that, it was more making sure he had his oxygen. Just kind of sitting there making sure he was okay, simple stuff that someone who was 12 years old would do. Pretty much my dad didn't really make his condition prevalent in our lives. He didn't make it a center stone of things. He kind of put aside his own pain and his own tiredness, so that we all could be happy and we could enjoy our lives.
Coming down the California was a big decision and the doctors chose California for a very specific reason. They chose it because California's humidity levels aren't very high. So, there's not a lot of heat. Heat is a definite factor when it comes to breathing. When it's hot out and it's more humid, you have to breathe more, there's less oxygen, it's thicker air. So, California has a good humidity level, right? But then as you get closer to the ocean, you're breathing in two extra liters of oxygen into your body. So your airways open up more. Living in Utah, there's less oxygen because you're at a higher elevation. Your lungs are bigger when you’re [born there], so when you come down to California you can breathe so much more, because your lungs are filled up with so much more air than you would get in Utah. All that extra air contributed to his acclamation where there wasn't as much pressure in the air. Definitely, a lot of factors just kind of weather, elevation. Sea level was key.
My dad can now live at any sea level, but each place he goes affects him differently. Too much cold and too much hot is too much strain on the body. So you try to refrain from those areas, high humidity level and stuff like that. But it wasn't just any area's sea level, it was also there couldn't be any smog or smut, because that was just poor air quality and it wasn't good enough for him to breathe. So, the doctor gave him pretty much just the span of California that he could live in. That was from Newport Beach to the beginning of Oceanside. That's all the lands he had that he could be in, because that was the cleanest air in California. The doctor thought it out very well.
Family life with somebody who has PH - sometimes it's not always a father, sometimes it's a brother, a sister, a mother, it's very dynamic in who it is. Going to school every day, you kind of learn to push it to the side, not let it affect you, because the thing is, when it's your father or your mother who has it, they definitely take on a different kind of perspective of dealing with the disease. They definitely try not to put that weight on you. They don't want you to just be stressed, they don't want you to be worried about them. They want to make you feel like everything is fine. They're going to live as long as you want them to.
So, going to school when I was younger, from 12 to about 15 I'd say, I definitely wasn't even worried about the disease. I really didn't think about it. It really wasn't a forethought in my mind. Then, as I grew up, my dad's like, "I think I can expose you a little more to kind of what's going on." I started going to his doctor appointments, I started hearing more about his disease and stuff like that, and that's when kind of the condition became a front forward kind of thought in my mind.
Then, the other thing is too is when I get home, well I can't go hang out with my dad, he can't go very far, but my dad definitely did things differently. He pushed himself beyond his limits and I think that's honestly something that kept him alive as long as he's been alive is he's pushed himself and he has family that's driving him. I feel like when you have this disease, you always need someone to drive you and when it's your family, I believe that's the greatest thing that can drive you.
Pretty much something that kind of helped me cope was going to these support group meetings that the PH community has. I've met a lot of great people and I've lost a great many people that I've grown close to and I've known in this PH community, but it's definitely helped me realize how each and every person deals with it, because the PH disease varies in many ways. So just going through our daily life with it is... Every day is different and no day is the same. One day, they'll have an exuberant amount of energy and they'll use that energy, but sometimes when you use that much energy, you're wiped out for days, you're wiped out for a week. You can't do anything. You have no energy. All you can do is get up, take the kids to school, come home and sleep and just act like everything's okay. Definitely growing up I didn't really realize most of this. I really didn't see that my dad was struggling. I definitely started worrying about it more when my dad exposed it to me more.
I have two brothers with special needs. They don't really worry about it as much, because their minds don't think about it in that way. They definitely have that worry. They see the worries. They see that my dad's tired, so they'll go try to help out a little more. Each family is different. Each family has their own issues and stuff like that. But in our family, there's some of us who are special needs. We have a father who has raised six kids on his own. He's a single father with this condition he's lived with for the last 10 or so years. It's a very dynamic situation.
There's a lot of different parts to life, but pretty much what makes every day easy and not hard to deal with and not hard to think about is fact that he doesn't make us worry about it. He doesn't push it on us. He didn't say he doesn't feel good. He'll tell us when he's having his bad days and we'll just hang out at home. But I think something that's definitely kept my dad alive is family. He's made it a goal to send every minute of every day with us. Because being a single father and having PH, you don't work. You're always home. You're always there. My dad volunteers at school, in my youngest brothers classrooms. He used to go and spend three or four days a week at the school volunteering and spending his time, because he didn't really have anything else to do with his life. With the little life he has, he doesn't have a lot of it to give after a certain time. And so that's something that definitely a lot of people have to think about is, what time can you give now because you won't have a lot of it later. That's something that makes it very difficult sometimes. I'll just kind of have one of those days where I'm thinking about kind of, "How much time do I have left?"
Something that's made it easier is the PH support groups. I've gone and I've talked to people and they've definitely helped to alleviate that stress. They talked about how you just kind of got to live in the moment, because every day that you have with them is a gift, because you never know when it will be there last. I've seen that several times with people I've grown close to in the PH community. One day I see them and then the next meeting I don't see them there, because they passed on. Each and every time that happens I learn a little bit more of how precious each moment is spending time as a family.
So pretty much everyday life is pretty simple. It's not too complicated anymore, because my dad doesn't require the oxygen tanks. His medicines are very structured. He has the electronic oxygen, he has his breathing machine. Even then living in California has progressed him so much. So from the few years he was in Utah, totally dependent on oxygen, couldn't go a minute without it, to where now he doesn't even wear oxygen during the day, he just wears it at night. My dad's made it a goal to make sure we're all happy and content and that this isn't weighing heavily on our minds, that we're not all bothered by it.
A piece of advice I'd give it to caregivers of people that are dealing with this newly diagnosed disease is that, live each day in the moment, don't worry about what's going to happen in the future, because the future is going to happen one way or the other. If we live each day in the moment and we spend time with our family and the people who are the closest to us, it will make us better. As long as we don't allow the people we care about to be swallowed by this disease, their happiness will make them live longer. And our own happiness and own love that we give to them will make their lives easier.
My name is Alex Minnick and I am aware that I am rare.
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