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I'm Aware That I'm Rare: the phaware® podcast

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Maleen Fischer - phaware® interview 191

Sep 21, 2018

At the age of three, Maleen Fischer was diagnosed with pulmonary hypertension and, as there was no treatment for this fatal disease at the time in Austria, doctors sent her home. Her life expectancy was only a few years. Now, 20 years later, Maleen discusses early diagnosis, the joy of graduating college and the importance of global awareness.

My name is Maleen Fischer. I'm from Vienna, Austria. When I was very little, my mom, early on, she noticed when she was breastfeeding me - she just described it as thinking that I was out of breath, and she kind of from the get go, after I was born, she knew something was up. We hurried from doctor to doctor until I was diagnosed (with idiopathic pulmonary hypertension) when I was around three years old.

Back in Vienna, at that time, nobody really knew what to do with somebody with that diagnosis, and so they would just kind of say, “Well, you would have to see how it goes,” but they did not give me a very long life expectancy. My father, as determined as he is, and was specifically at that time, he found a very good hospital in New York that was working on treating pulmonary hypertension, and we went there, and we met with a wonderful doctor (Robyn J. Barst, MD) that has since passed away, unfortunately. She put me on an IV treatment that I'm still on to this day.

Now I'm 23 years old, my birthday was in May. I'm doing very well, so I can be very thankful for my family who really didn't want to give up. Now, when I still think back to New York, it's a very hate/love kind of relationship to just think back to that time.  On one hand, it's a beautiful city, and I was always so impressed with everything. My parents, obviously, also tried to make it a great time, always. And, on the other hand, having the doctor's visits, being put on a pump, on an IV system, and I just remember when we were picking out the first bags and backpacks to put the pump in. This kind of journey, to kind of adapt to a whole new lifestyle.

I find myself, in this situation, very lucky that I was diagnosed so early on, so I could get used to this lifestyle for many years. I would assume it's very difficult to be diagnosed at a much later age. I must say I'm very lucky, I've always had friends that were really respecting and accepting of the whole situation. My neighbor, we kind of grew up together, and she knew me even before the pump, as little babies.

I did not go to Kindergarten. I was homeschooled throughout those years and then all the way to high school. And then, what I did in high school was I went, for the first time, into a real school, because with pulmonary hypertension we take into account how many steps we walk during school, and also how young the children are and how understanding they are of not ripping away a backpack. When high school time came around we said, “Okay, this would be the time where we could try out to actually go to a school." I went to a very small school in Florida, and it was completely flat, so no stairs and a very small amount of students. This was the first time I was actually in high school and experiencing other teenagers. It was kind of funny because it really incorporated all the high school drama, first boyfriend love story, whatever, in a very short amount of time. I actually felt very normal during that time, I have to say.

When I was diagnosed, this disease was not known, and so my dad and I, we really did a lot of awareness work; and it started just right after I was put on that pump. We did all types of newspaper reports on it, or documentations. Always my goal was to really get the word out there about this disease, because during our time of working in awareness, we've had so many stories of people coming to us saying, “Because of you, because I saw this show, or because I saw this report, or this news article, I went to the doctor and I actually have pulmonary hypertension”.

When I went into my teenage years I thought, “What can I really do to kind of emphasize that even more? What could give people hope at the same time as kind of give other people a perspective of what pulmonary hypertension really means, and what it does to a life?” From the good parts to the bad parts. That, in the end, was essentially how I ended up writing a book. It really also shows my journey as a person, because the book changed drastically when a few certain situations happened within those, let's say two and a half to three years I was working on it. When it started out, I was speaking about how it was like to go to New York, being put on this medication, living with this medication, going through high school with this medication.

I believe it was in my last year of high school, I had an extremely bad case of an appendicitis and it was overlooked. I can't really figure out, or can't remember the medical term for it, but I had an abnormal appendix so you could not see it on an X-ray and I was sent home with antibiotics, and a day later my appendix ruptured. I was intubated, which we all know is really bad for pulmonary hypertension patients, anybody but specifically us. I was just doing really bad. I barely remember that time, to be honest. I had a sepsis, of course, multiple blood transfusions. This was a time where, of course, throughout my lifetime there was always a lot of uncertainty; but at this point you could really feel, “Okay, I am definitely not invincible, and things happen and things can get really bad.”

I somehow recovered from that, and then, what you have afterwards, the effects, trying to bring your saturation up again, trying to be able to breathe comfortably and with enough saturation, without oxygen masks and the compression masks. And this was really the turning point where I figured, “Okay, this is where I add on to the book, and this is also my way of coping.”

After I finished high school in Florida, and I also did my tests and certifications in Austria, then I looked at colleges. I looked at options that I had, and I wanted to stay in Vienna just because I had a good net of doctors here, and I felt very comfortable here also with my friends and family, and so I found a great college here. This was also the first time that I was a little more detached from my parents. It felt very nice. I know a lot of people say that college is the best time of your life. I don't know about that exactly, but it certainly was a wonderful time and I met so many great people.

It had the same effect to me as high school did, a little bit. It made me feel very normal. In between that, I had some issues with my condition and with the pump, all sorts of things, random things you can think about; but then I also had normal problems like studying for tests, or just mundane things that you really appreciate more, I feel like.

In May, I had my graduation. I was very happy I could graduate with a lot of my friends, actually. My best friend that I had known also still before the pump, and she has a very similar name as mine, it's Marlene, and mine is Maleen, so people would always just call us “M&Ms” instead of having to say the whole name. It was very nice because we would joke around as kids that we would graduate from the same college, and we did. We ended up doing that, and it never even seemed like that was an option.

I worked very hard for those four years, I was very ambitious, and I figured, “If you go on this journey, you're going to college, you might as well just try your best.” Generally, I have this type of personality that I just need to at least try as much as I can in order to feel like, “Okay, if I give it my all if it doesn't work out then I guess it wasn't meant to be.” Luckily, it was good. I graduated with high honors and we had just a great time graduating all together and it was a really, really nice experience. I smile back just thinking about it, and I'm really also just going to miss the whole experience, but I think grad school is definitely going to be a new chapter. Also, at one point, I want to hopefully be working more. I'm looking forward to that.

The advice I would have for somebody that would be newly diagnosed, walking out of a doctor's office, I would say sometimes not everything that doctors tell you has to be taken exactly word for word. Prove them wrong, and so if you get a bad diagnosis you don't have to take it as it is. Don't put your life to a complete stop. That doesn't mean that you shouldn't take the time a little bit to figure out what to do next, but keep going with the things that you want to do. Not everything might still be an option for you, but there are things that you can still do.

Everybody has so many choices in life. That's a beautiful thing about life. You have so many choices, and if one thing doesn't work out, it doesn't mean that that is the only thing you need to limit yourself to. You can find an alternative. Just go for it, and do it, because even if you feel bad sometimes, that success, or sometimes just doing something that makes you happy, it will make you feel better.

It's always so important to create awareness, and awareness does not need to be going on national television or doing crazy things. You can just simply, honestly tell people that you meet about this disease. Bring it to the attention of other people, and that can already make a difference. That will also make it easier for them to understand, because people are just naturally curious.

And, the second thing would be, if you find yourself in a hole or you think that something's wrong with you because you're just super depressed and other people that you see are coping with the disease so well... It's like Instagram, honestly, most of the time you see really positive things about other people, and even people that have been diagnosed will maybe just tell you the positive things, or tell you that they're coping well.  If people feel like they're not doing well just because sometimes they're depressed or sometimes they don't really know what to do anymore because of the disease, I think everybody feels like that every now and then. Just never feel like an outsider because of that.

My name is Maleen Fischer, and I'm aware that I'm rare. 

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