I'm Aware That I'm Rare: Alex Flipse

Alex Flipse was diagnosed with pulmonary hypertension on September 3, 1998.  On the 20th anniversary of her diagnosis, Alex details her journey battling both depression and PH.

Transcript:

My name is Alex Flipse. I have pulmonary arterial hypertension. I have pulmonary venous hypertension, and I am in Southern California in Riverside County.

I had just delivered my third, and final, baby. Probably three months after her birth, I started feeling really, really exhausted all the time. I attributed that to the depression that I’ve had for all my life, basically and, of course, just having a brand new baby, as well. Things started going down the road and I would forget about how tired I was always feeling. Actually, for quite a while I would sleep like maybe 20 hours a day. I would get up in the morning and feed the children and put them in front of the TV and fall asleep on the couch. I’d get up in time to make them some lunch, put them in front of the TV and fall asleep on the couch. I’d get up in time to make dinner. My ex would come home. I’d say, “Here are the kids. I’m exhausted,” and I’d be asleep for the rest of the night. That’s how my PH journey began.

I was misdiagnosed along the way, but I do believe that was my own fault, because I kept saying, “I’m always tired. I’m short of breath. I’m always this.” It would always be, “But, I have depression. We just moved from here to here, and I left my family in California, and that’s really making me depressed,” until one time I started passing out. I would go back to the same doctor, who was the family doctor. There was a time when my sister, Debbie, was visiting us during her summer months from University. For some reason, I got it in my head I had to take out the garbage. It was in the middle of the day. I know the kids were in school and I said, “I just got to go do this,” so I jumped up and I took it out. I came back inside and I went down. I just completely passed out. On my way down, thankfully, she caught me. She helped me come back and then she went and got my ex. He took me to go see my primary care doctor.

Thankfully, my primary care doctor wasn’t there. Somebody else was there, you know on-call doctor, and he listened to me and he said, “This is not in your head. This is in your heart,” and immediately sent me in for an echo. The next day I went and saw the cardiologist and he said, “We think you have something called pulmonary hypertension,” and that was it. This was September 3, 1998. When I went in to see the specialist over in Houston, she had me get a right heart catheterization. She did it herself. When I woke up from that right heart catheterization, that they put me under, I was on IV therapy. It took me four years to be able to actually get out of bed. I was Stage IV when I was diagnosed, but more than that, my depression had taken over, and I could not get out of bed, I could not take care of my kids. I could not do anything. My kids’ father was stationed something like six hours away, so he would only maybe only come on his weekends, which was usually only once a month.

My mother ended up moving out to Texas with us to help me with the children. But, during that entire time I was overcome. I couldn’t get out of bed, I couldn’t wake up, I couldn’t anything. It was difficult for me. It was difficult for my children, who have all suffered because of it. None of them, thank goodness, blame me for my condition, but they do blame me for not being there for them when they were younger.

The oral pill was approved by the FDA. As soon as it was introduced into the FDA, then I was able to slowly get back to life. I was able to slowly do more and be there for the kids more, but it did take quite some time. My oldest actually had to grow up really fast and take care of her sisters, and change diapers, and everything else. My youngest was two years old when I was diagnosed. It was just really, really hard on all of us. For my children I was able to set things up so that they could help themselves. I got things that they could eat themselves, or they could prepare themselves. I filled the bottom shelves of the refrigerator with snacks that they could get to. I had baskets of coloring books, and toys, and things in my bedroom so that they could sit with me in bed when I was up, and that sort of thing, and then, I could help them with their homework, or whatever.

After I got off of the IV therapy and started onto the oral, I started searching online for information and for help and I found several different websites, lots and lots of people who were in my same condition as far as pulmonary hypertension. I started finding ways to combat the depression and work with the pulmonary hypertension, not combat it but to work with it, and I did that slowly and slowly the depression started getting better and better. But as depression does, it sneaks up rather quickly, and for me it never left me. I still have it every single day. I wake up with it and I go to sleep with it, and it’s always there in the back of my head regardless of how bad it is or how good it is.

I always make sure that I have people to contact when I get really low. I always be sure to have music, or movies, or things that I can avert my brain to, so that I’m not constantly only thinking inward. I have journals that I write into, and it’s a matter of actually taking pen to paper, because if you type it out … There’s some sort of science to it. I understand what it is, and I learned this actually when I was inpatient in mental hospitals. There should be absolutely no stigma with that, because mental health, depression, anxiety, all of that is a disease as much as PH is. So, going into the hospital to take care of my mental health, I’ve done that many times over the years. If you need it, please do it. Dealing with the depression and dealing with all the anxiety that comes with pulmonary hypertension more than the depression … For many, many years, and thank god I’m over it now, but it creeps up to me every now and again, but for many, many years I have always thought to myself, “I can’t make plans so far into the future, because who knows if I’m still going to be here.” It took me a long time to realize, “I will still be here. I will still kick PH in the butt, and I will still be able to thrive and succeed.”

When I got sick I always wanted to know why did I get sick? Why did God choose me for this? Why, why, why, why? It started to dawn on me, 2009, I suppose, maybe 10 years after diagnosis, I have to be able to help people. My way of dealing is by helping. My way of helping is by doing. I don’t have the funds to be able to donate left and right to all the organizations that need it, and I wish that I could. My way to help, since I can’t give, is to do for people, and that sort of thing. That has helped me tremendously.

I started my very first support group in Texas. I think it might have been six years after diagnosis. I was on the oral medication already. I did it because I was very lonely. There was not a soul that I knew in this little town that I lived in that had pulmonary hypertension. I came to find out there was a young woman there who had PH and, unfortunately, she passed away a few years after I met her. But, I started the support group down there, and there were people coming from hundreds of miles away, and that feeling of helping people was tremendous for me. It wasn’t only therapeutic, it was also a sense of being able to complete something, being productive, being helpful. It is a huge relief for me to be able to do that, and it was like this is the gift that I’ve been given. I’ve been given life after the two years that they told me I was only going to live, and I have to do something with this time. Even though I can’t work, and I can’t give, and I can’t whatever, these are the things that I can do.

On September 3, I was given my official diagnosis of pulmonary hypertension by my specialist in Houston in 1998. That’s been 20 years now. I never thought that I was going to live past the two years they told me I was going to have. I never thought I’d get to see my children grow up, and now I have grandchildren. There’s so much I would love to do. There is so much I would love to see. I would love to travel the world and see things and everything else. I like to live vicariously, as they say, through my kids.

My youngest daughter, I am so, so proud of her. She graduated from the University of Texas A&M. She’s gone skydiving. She’s gone on a hot air balloon ride. She rides horses on the beach. She deep sea fishes. She does all of these things, and all of these things I wish that I could do. They’re all on my bucket list. So, I see everything that she does and I would love to be able to do all that. I want to continue helping the community. I want to be able to maybe give a little bit of advice to the newbies, to the newly diagnosed, and show them that there is life after diagnosis. There is life after the two years that they give us, and I wish they would stop doing that, but there definitely is life after diagnosis.

If I could give a piece of advice to a newly diagnosed patient it would be, “Take your meds like you’re supposed to, find a support group, go to www.phaware.global, go online to Facebook and find thousands of PH friends, because we’re all over the place. Know that you are never alone, know that life is not over. Even though pulmonary hypertension will change how you live, it will not end your life, it will not end how you live, you just have to change and be willing to accept your new life and your new normal. If you want, wherever you are in the world you can find me online @flippymom. I’m @flippymom on Facebook, on Instagram, Snapchat, allover.

I’m Alex Flipse and I’m aware that I am rare.

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