Amanda Chickie - phaware® interview 583

The Dream She Lost at 18 and the Child Who Gave It Back

One of the first questions Amanda Chickie asked after her pulmonary hypertension diagnosis wasn’t about life expectancy, it was about motherhood. The answer devastated her. Told that pregnancy was too dangerous, Amanda reflects on what it means to mourn children you’ll never carry, how that grief shaped her mental health, and how hope slowly returned in a form she never expected.

I'm Amanda Chickie. I'm 36 years old. I'm from Moncton, New Brunswick, Canada. My connection to pulmonary hypertension, I was diagnosed when I was 18 with idiopathic pulmonary arterial hypertension. I was a cheerleader in high school and started during practice not feeling well. My fingernails started turning blue, all these things. Then cheer was over, so I wasn't as active for probably about six months to a year. Things just started to go downhill very, very quickly. I couldn't walk up a flight of stairs without seeing spots, being unable to catch my breath. I went to visit an art college. You had to walk up three flights of stairs to get to the audiovisual room and I didn't think anything about it. We got up to the top, and it was the first time that I fainted, flat on my butt, out. I woke up with paramedics around me.

That was in a different city than where I lived, so they sent a referral to get a 48-hour heart monitor and such. When it was time to do so, they have to take your levels, do your ECG. The nurse did so. She looked at results and she's like, "Oh, my gosh, this machine is broken. Sorry. Let me go get another one." She did go and get another one. It was the same result. I will never forget the look on her face to just be like, "Oh, no." She was literally like, "Stay here. Sit down. Don't move. Stay right there." She got a doctor to come and see and just say, "There's something really wrong here. You're not going anywhere." It just happened to be that the doctor that was on call was the pulmonary hypertension doctor. I remember he walked in. He looked at me for 30 seconds, turned my head, was looking at my jugular vein, all these things.

He said, "I don't know for sure, but I'm pretty sure you have pulmonary hypertension." Then, he ran all these tests. I was in the hospital for two weeks and it was confirmed. Then did all these tests to try and see if it was related to another condition, but there was no family history. There was nothing else that stood out health-wise. He just determined it was idiopathic. We just went from there to oral medications for a little over a year that I was not receiving much benefit from. They started talking about Flolan. I was 19 at this point and that was a terrifying thought for me. I went home, and Googled, and all of these things. I came back to him with Remodulin, because the half-life wasn't five minutes. It was a smaller pump. I didn't have to keep the medication cold.

It was still a medication pump, but to me it just seemed... I guess, especially back then, my goal was to walk into a room and nobody know there's anything going on. It provided me that opportunity a lot more than Flolan did. He very much tried to discourage me from that, because especially at this point there wasn't a lot of people on it, and it was because of the pain associated with the site changes and the medication. It's not like Flolan, where you have a stable port. It's subcutaneous. You move it around your body when you need to. It depends on the person. But for me, the first five to 10 days, depending, are very painful, because of how the medication itself reacts to your skin, not because of the injection or anything of the little catheter. It's the medication itself.

It's very aggressive on the skin, bright red, hot, swelling. It spreads to my lymph nodes, and I can't walk properly and such, because of the swelling and whatnot. It's not that pain level the whole time I have it in. Let's say it lasts for a week and then my pain going from a pretty consistent eight will go down to a two. So livable, so fantastic. We discovered that over the years, that the longer that I could keep the site in, the better it would work and the more time closest to pain free I could be. The first several years I was on it, I was able to keep that site in that specific area for eight weeks. That was incredible. As I've gotten older and because you have to constantly move it around. I myself put it in my abdomen. Just this year, I've started putting it in my leg, because I've been doing it for so long in my abdomen, and my lower back and such, I have a lot of scar tissue, because the skin is affected by the medication so much and because it's just subcutaneous. It's the skin that's absorbing the medication to bring it through the bloodstream.

The skin is damaged because of the scar tissue, therefore the medication is not being absorbed to its ability, so I'm not getting the dose with which I need to, to function properly. I've had to find other areas. I've been doing it in my upper thighs, which has definitely brought me back to the more severe pain I had in my several first years with my body getting used to everything. But I've been able to get a little more time out of it, because my current time is maybe two to three weeks before a site starts to fail or I start to feel my symptoms again, because my skin is just so damaged.

Putting it in that fresh area has been helpful. It does not last the eight weeks. I don't know why that is and nor can anyone really tell you. Going through maybe a week and a half, two weeks of pain, and then getting six very livable weeks after that, sign me up. Going through that week, and a half, and then getting a week, that's livable. Really, it was a drastic lifestyle change again. So, trying to find different areas that work for me has been helpful.

I remember when I was told I was sick, I was 18. One of my first questions was, will I still be able to have kids? I always wanted to be a mom and explain to me it does happen. People do do it. It's a dangerous thing to do in a lot of circumstances. Each woman with the disease is different in that way. There's a level that can be checked in the blood. I don't understand it 100%, but to see how at risk both you and the baby, the pregnancy would be. And my levels were not good. I knew right from the beginning, the vision I saw for my future, which was the biggest thing was being a mom, was gone.

When I was diagnosed, it was a relief to be told, "You're not crazy. There is something substantial going on here." But then the part that was the heartbreaking part was the not having children. That is what I found myself dealing with the most for the first couple years, was coming to terms with that. Not as much anymore, but especially back then I was a very mind over matter person. I didn't want to deal emotionally or mentally with the fact that I was sick and what that looked like for my future. I just kept pushing. I definitely made myself sicker doing so. Also, trying to ignore it, and not take my medication as prescribed, and things, kind of rebelling against your body and the situation in a sense.

Doing all that, it really led me to a very depressive state, all those stages of grief that you feel. It hit me like a ton of bricks, because it wasn't just my body that was failing me, which I could almost understand and push through, but my mind was failing me. That was the biggest issue. The biggest thing I had to deal with was the depression, and being so tired, and confused, and not knowing what's going to happen. It's almost like you were emotionally too exhausted to even deal with the fact that you were depressed. It kind of became just who you were. That was your state. I'm not depressed. This is just who I am now.

Obviously, with time, and years and experience, it has gotten better. I realized that all of me isn't pulmonary hypertension, just part of my story. But it's taken a long time to get there. I'm not going to put on any airs and say that it is a complete process, because every day is different, whether it be because of pain or just life circumstance or whatever it is.

It is a constant reteaching of my brain to say that, yes, this is life, and that is okay, and not everything is the worst it could be, and all of that. It is a constant, like you wake up and every day it feels like I'm in a different body. It really depends. So, you have to just remind yourself that yes, this is your reality, but there is hope. There is always the chance of the new reality and that's going to happen whether you like it or not.

After the first several years, I could see myself starting to see the pattern that I was in, because I was sick and it was just my body that was failing me. It's because of the life circumstance, I guess the condition put me in. It changed my brain. I don't know how else to describe it. I was so down. I didn't see the light. But with the medication doing such amazing things for me, I got to a place where I could see that a little more clearly. I was very ill. I asked the doctor when I was first diagnosed, I said, "If I were to walk out of here right now, what would happen?" He said, "You wouldn't live to be 21." You hear that and you're like, "Okay, so this is something I need to take seriously." Going on this Remodulin, the pump medication, it brought me from high stage three, low stage four, to I do my six-minute walk tests and I can get 600 plus meters. It absolutely changed my whole life. When you're in the bad pain and stuff, that is the thought that gets me through that I wouldn't even be here in this pain without it, so that's helpful.

Over these last 18 years, it's changed so much. I get to the point where, "Oh, I am 21. I've made it." Then, you move on another three, another five. I wish looking at that abstractly, I could say I really took advantage of that, and I was really conscious of it and I made the most of it. I can't say that in a genuine way, because every day you were still in the fight. Even though your battle was lasting eight rounds, you still had to go through all of them. I got to a point where I'm like, "You're not just at this point surviving, you're living. You could perhaps thrive." That definitely was a good mindset switch.

Then, when I was 27, I met my ex-partner who had a son who's two years old. I have been his mama since he was two years old. Somehow, I ended up in the situation that is what I always wanted, even though it was taken off the table. He is my whole world. He is the best thing on the planet. I don't know where I would be without him in my life, because as I said, I was aimlessly wandering. I was. I was in survival mode. It was just, "Okay, great. I've made it another year, but what does that mean? What are my goals? What are everything?" Life was too much to analyze that. I just had to keep going. I just had to put my head down and keep moving so I got to the next year. It wasn't necessarily because I had a purpose to get there.

Finding my son and such, it just gave me a purpose to life, a purpose that was more than just being someone with pulmonary hypertension and surviving. Since him, as much as pulmonary hypertension absolutely affects my every day and affects who I am as a mother, it has taken a backseat to being a mother in a sense because he fulfilled my purpose. He gave me a reason to be more than just the sick girl. He gave me a reason to have goals and not just live for making yet another day. He's my saving grace. He changed everything for me emotionally, mentally, spiritually.

Still in this moment, that's what I'm holding on to get me home, to get me to the next day. There are really bad days and I lose perspective. But it is that little human, that little spark of life that brings me back to reality. Reality being, yes, life can suck, but there is always hope for more than just the suck. He is that representation to me every day.

Finding my purpose in life, I can't equate that to being sick early or experiencing these highs, these lows, having some kind of profound meeting with the universe because I've been through all this. It still just came down to the thing that I always knew that I wanted, and it was him. He brought me out of being Amanda with pulmonary hypertension to being Amanda, a mom who happens to have pulmonary hypertension.

I'm Amanda Chickie and I'm aware that I'm rare.

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