Alicia & Adriana Kubes - phaware® interview 283

Sep 20, 2019

Sisters Alicia and Adriana Kubes discuss Alicia's pulmonary hypertension diagnosis and Adriana's role as a caregiver and ways they are facing this chronic illness together.

Alicia:
My name is Alicia Kubes and I'm a pulmonary hypertension patient.

Adriana:
Hi, my name is Adriana Kubes and I'm a pulmonary hypertension caregiver.

Alicia:
I'd been feeling off for a long time. I know that back in 2010 I had some heart palpitations and I went and did all the testing and nothing showed up. I just thought I was having panic attacks and was just getting really tired. I use public transportation in New York city, so when I wasn't able to walk up the stairs, I knew that something was wrong, but it took several months of blood tests and EKG's. Nothing came up that said anything. Finally, in the new year when I had an echocardiogram, that's when they noticed that there were very high pressures in my lungs. By that point, I was swollen all over my body. I had 25 pounds of fluid and I barely could even walk up two steps. I had the echo. The doctor came in and said, "You have to go to the ER right now. Your pulmonary pressure is really high." So I drove myself to the ER and I was lying on bed. There was a monitor there and that's where I Googled pulmonary hypertension and figured out what it was.

Adriana:
She was having problems for several months and I wasn't expecting it to be anything serious. I was hoping maybe anemic or some sort of, you know, something that would be just a pill, an easy cure. I was at work. She actually called me before she called our parents, because she didn’t want to get them nervous. I knew she had a doctor's appointment that day and she called me and she said, "I'm actually driving to the ER right now, because I have severe pulmonary hypertension." I didn't understand what those words meant. When I got off the phone with her and I told my boss I had to leave to go to the hospital and see her. I just said, "Well, what's severe pulmonary hypertension?" I never heard of it. I didn't understand it and it didn't even sound that scary. I just knew she was going to the emergency room.

Alicia:
My thinking was just dread and fear and confusion and it was very scary. I was terrified, but my family came to the emergency room and my sister was the one who was with me in the hospital every single day. Just having her, she counteracted all of my negative thoughts. I would just speak my thoughts to her and she would always keep me in perspective.

Adriana:
When she was getting diagnosed, I started to research it, and there were just so many questions I just had. When you hear about the life expectancy, medications, I didn't know. I didn't know what was going to happen next. I think that was the scariest… the unknown.

Alicia:
Where I was diagnosed in New Jersey, we don't have specialists there so I was transferred to a hospital in New York City where I was started on treatment on IV Remodulin and on pills. I've been reacting very well to that medication, so now it's just slowly getting back to normal. I challenge myself every day with something I wasn't able to do before, like I'll try to walk five minutes more than I did yesterday. I'll try to walk one step more than I did yesterday. I'm very much a goal-oriented person, so I have this goal of getting off the pump therapy one day and I try to maintain a positive attitude and picture that goal, so that's what kind of gets me through.

Adriana:
Well, the way it's really developing is that she's my older sister, she's my big sister, but I feel very protective over her. I have to learn that she needs to live a life and I shouldn't protect her that much. I shouldn't worry about her going to work every day or doing everyday things. So, I'm learning and she's teaching me that I should let her be free and let her take that extra step, take that extra walk, even though she had a long day at work. I think that's what I'm learning, is just helping encourage to have her live the fullest life as possible and not be scared.

Alicia:
The main tool has been just to educate ourselves and she's been the same way that she was with me in the hospital every day and counteracting my negative thoughts with positive thoughts. She has been educating herself. We are both now starting a support group in New York City as co-leaders so that there's both a patient and a caregiver angle to everything that we do and all the resources that we share with others in our area.

Adriana:
I think educate yourself. Understand that there's still so much that is not known about this disease and that there is a lot of hope. There is just more good news than there is bad news. So I just want everybody to take it day by day and really just look at this in a positive light, because positivity is a choice. So just try and move forward and just be there and enjoy every day that you can.

Alicia:
Our hope is that together we can help get more people diagnosed just by being vocal about our own experience, because obviously there are others who are suffering right now and they don't know they have PH. There's a personal hope that I will overcome this and be a good example and good data for other people.

Adriana:
Our hope is just to share our story and also teach other siblings and other family members how to work together and how to support each other. I openly talk about it all the time. Even if somebody doesn't ask me about pulmonary hypertension, I'm like, do you know? So I just think it's bringing awareness to the cause, letting people understand the seriousness of it, but then also the hope of it. There is more future and good news.

Adriana:
My name is Adriana Kubes.

Alicia:
My name is Alicia Kubes, and I'm aware that I'm rare.

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