Kathy Ilano - phaware® interview 585

Misdiagnosed at 19, Married After Heart Failure and Living Moment to Moment

Pulmonary hypertension patient, Kathy Ilano believed she’d never marry. Until she met her husband at her high school reunion. Still recovering from heart failure, carrying grief, fear, and a sodium-restricted diet, Kathy disclosed her illness on their very first date, convinced he wouldn’t stay. He did. Their love story unfolds alongside IV pumps, emergency drives, and an unwavering partnership.

My name is Kathy Ilano. I was diagnosed in 2001, but I knew I had pulmonary hypertension when I was 19. I was officially diagnosed three years later. I remember I was taking a couple of steps in the subway, and I couldn't breathe. I was out of breath just walking up a few steps. I was kind of a bigger girl at the time, so my doctors just said, "You need to lose weight. This is what is happening." So, it took time to get diagnosed.

Once I did, I had a few years that I was doing well, but I was in a lot of denial. I was so young, I didn't want to face the fact that when my doctor said, "You need to go on IV medication," it didn't hit me that I had to do this. I was in a lot of fear of going on medication. It was simple things like, "I can never swim again." I think the denial of it and the fear of having something implanted and having to carry it around 24 hours a day was overwhelming. I was in a lot of fear of that.

At the time, there was only Flolan and nothing else. Then, an oral medication had just come out. I was in right heart failure. I'd been in the hospital for about three months. I deteriorated very fast where I ended up in ICU. My doctors would say, "You have to go on IV medication." I begged for the new oral medication that just came out, which was bosentan. I begged them and said, "Let's just please take a chance and see if it'll work." Thankfully, it did.

I did well on that for at least seven years, and then the pulmonary hypertension progressed again. I went into right heart failure again. In your mind, you see yourself as being healthy. You see yourself in the mirror and you think you don't see a disability. You think, "I'm fine." Sometimes, it's part of being young too, where you compare yourself to somebody who's healthy and you think, "I should be able to do this. I should be able to do that."

I realize now that it's part of the process I had to go through, but it was unfair where I had to realize I'm comparing myself to somebody who's healthy. I should be realizing that if someone healthy were in my body, they would have a lot of trouble doing just regular everyday things. So, that came to me over time. Also, how the illness can deceive you just on a day-to-day basis. You look at yourself, and you really think, "I'm okay."

I think it also has to do with being young. I was in a lot of denial, and I think, in some ways, it helped. But in the long run, I think it's not sustainable. There has to be some kind of acceptance over time, and there's grief along the way, too. You're grieving different things of not being able to do the things you once did, how you change in other people's views, your relationships, who sticks around, just your plans for the future, all these things.

I think it came to a point where I was in right heart failure the second time and I was in ICU. I had pretty much deteriorated to the point where I couldn't go to the bathroom even in the hospital bed. I was deteriorating very fast. I had no choice. So, I had to go on the IV Flolan. Thankfully, it worked, because the doctors at that time said, "We think you should go straight into double-lung transplant." That was the only time I begged for Flolan, because I had been resisting it for so many years. I was like, "No, no, no." But at that point, I had no choice.

I'm thankful that I responded well. It's been since 2008 that I've been on Flolan. I got married in 2007. So it was a huge shock for my husband to go through with me just a few months after we were married to go through this whole ICU episode. Really, a life-and-death situation. I'm thankful it worked. It's not always what you plan in your life. I was put on Opsumit, and then I have just had my first injection of sotatercept. So, we'll see how that goes.

Looking back, if I was newly diagnosed, I wish I would have told myself, "If you're googling all these things, give yourself a break, because it's so scary. It doesn't mean that's it. Your life is over." I was given two years when I first got diagnosed, two years of life. And then at one point, when I had the heart failure, I was given just any moment.

I think I tried to look at it as there's something higher, and I leave it in God's hands. I can do whatever I can to take my medications, try to keep up with my daily things, but try to be kind to myself as well. Again, just being grateful that there are medications out there. Now, there are so many other oral medications when, at the time, it was just Flolan.

In my mind, I had already planned and figured, "I'm never going to get married. I'm never going to meet anyone, because this is such a difficult disease to deal with. How is anyone else going to deal with this?" I pretty much figured it wouldn't happen. I did go to my high school reunion, and a couple of friends had to convince me to go, because I thought, "What am I going to go for? What am I going to say to everyone? I just had heart failure." Everyone's saying, "Hi, I've been working at this job for the past year or two years." For me, it was, "I've just been in the hospital for about three months. I'm learning to walk again and be able to do certain things very slowly. I'm on a sodium-restricted diet." All these things that actually my husband said caught his eye that I was eating carrots at our high school reunion, because that's what I had to do at the time. It was in my mind that I had to be healthy.

We did meet at our high school reunion, and then we went on our first date. And this is not dating advice by any means whatsoever, but I fully disclosed that on our first date, "Look, I have pulmonary hypertension. I also have lupus." I let him know on the first date. I just didn't want to play any games and wanted it out there, but probably not the best dating advice. But yeah, he stuck around. So it worked out. It's a challenge day-to-day. We have to deal with mixing medication, which he's the one that does the mixing. He's really good at it. Also, the emergencies that come about from the IV, like when the pump fails or when you don't have your pump with you and you are maybe an hour away from your home or two.

I was the lookout and he was driving “Fast and Furious,” and I said, "Okay. If the cops stop us, at least we can explain what's happening." But there are a lot of challenges that come with it, like some of the day-to-day, like when you're changing your extension line, bleeding, or accidents, things like that. I'm grateful to have someone that's there in the time that you're dealing with all of this that can help or support you, like just somebody that you trust.

I'm a caregiver to my mother who has dementia. She's at home with me. So, that's been a big challenging role for me to be a caregiver as well, and it's a 24-hour job. She was there for me when I had the heart failure, and she helped me out when I was very sick and I couldn't bend down or move much. She was there for me. So now, I'm caring for her throughout the whole time that she's had Alzheimer's.

I have a daughter who's 11 now. I'm juggling both, plus, dealing with the pulmonary hypertension as well. I think I need to make more time. I'm trying to make more time to do some reading and have more time with animals and be outdoors. I am running a support group in Toronto. We're mostly on WhatsApp now. It's good that they're able to connect with each other and talk to other people, as well.

I think it's not denying when you are feeling just the grief of the loss of what you're able to do or the loss of just maybe even trying a new medication. Also, the fear of going through the deterioration of the illness. It's overwhelming. There's no way to suppress those things. You want to appear that everything's fine to everyone around you, because you don't want them to worry or you don't want them to feel any part of what you're feeling. It's almost like you're kind of sharing a little bit of the pain of what you're going through. Being able to express that, I think, is so important, because denying it and putting it aside, I think it comes out in other ways eventually anyway. It's a process too, over time. You realize how you're feeling and that those things are important to go through.

It's like you go through the fire. There's no way around it. Sometimes, it gets overwhelming where it feels like when it rains, it pours. I felt that when my mom got dementia, and I was also struggling with the pulmonary hypertension. Even dealing with she got cancer and having to take her to treatments when she didn't understand why I was bringing her to treatments and her getting so angry. I think it's just like being grateful for the moments where there are people, for example, in the hospital that are kind and they understand. I'm grateful for those people for the moments that I have with my family.

There's a whole process you go through. I was angry too at different points in my life, too. Sometimes, it'll come up here and there, but I realize, "Okay. I have certain amount of time on this earth, and I want to be able to do whatever I can with this time and be with the people I love." You reach those things at different times, at your own pace, the acceptance too. I think it's dealing with it at each point when it happens, because it's so overwhelming when you look back and think, "Oh my goodness, all these things happened over time."

The good thing is you can look back and think, "I got through this." It's just moment to moment and day to day pretty much. When you're first diagnosed, it's so overwhelming. I wish people would give themselves a break from Google, from googling all this stuff. Just to know that, yeah, it's possible. Everything can result in a different way. You can have a different outcome than what you're reading about. It's possible.

Just to have the support and find something greater than all this disease, because the doctors are wonderful, but they don't always know when your time is and how things will go, how you'll react. I would keep some of those things in mind, that it's not just what you read or what they tell you sometimes. It is important to take your medications, your treatments, but to know that, yeah, it's possible to live for a long time with the PH. It's possible.

My name is Kathy Ilano, and I'm aware that I'm rare.

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