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

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Tina Gardner - phaware® interview 381

Aug 23, 2022

Pulmonary hypertension patient, Tina Gardner had never heard of PH when her mom was diagnosed in 1994. 28 years later, she's all too familiar with the disease after she, her nephew, her niece as well as her great nephew have been diagnosed with this rare disease. Tina discusses the importance of support groups, especially ones like the one she created for families impacted by heritable pulmonary arterial hypertension

I'm Tina Gardner. I am in Bedford, Pennsylvania, and I have familial pulmonary or arterial hypertension. I am one of many in our family that have had it. My mother was diagnosed and had it in 1994. I was diagnosed in 2016. I have a nephew who was diagnosed when he was 17 and a niece that was diagnosed last year at the age of 21. We have a great nephew who passed away, just shy of his third birthday. So it has definitely impacted our family.

We've learned a whole lot, from the time my mom was diagnosed until now. All the medications that we have now were not available for her, or if they were, they were just experimental. It's a little devastating. So as a family, we've all kind of come together. Those of us that currently have it, the three of us that do. We all have different symptoms.

My mom was diagnosed in about October of 1994. We had never heard of pulmonary hypertension. They referred to as primary pulmonary hypertension. She was very short of breath, just walking from the car to go inside the mall. She would have to sit down as soon as we got in there. We're were like, "Mom, what is going on?" She’d say, "Oh, it's just the change of the season. The weather. It's just allergies." She chalked it up to that kind of stuff. We're thought, "No, this was just getting worse and worse and worse." So my sister said, "Mom, you've got to a doctor." She went to a pulmonologist and they said, "Well, we're going to run some tests." They sent her to a cardiologist. They did a heart catheterization. That's when they said, "You have pulmonary hypertension."

As I said, we'd never heard of it. The doctors asked, "Well, it could be caused diet pills. Did you ever take diet pills?" She did. She had taken diet pills in the past. She was on Nutrisystem where she lost a bunch of weight. So they were thinking that could have caused her pulmonary hypertension. In July of 1995, she got a transplant. They did one lung. She passed away in the hospital right after her 52nd birthday. In fact, it'll be 26 years since my mom has passed.

Then it was 2016, I would go to Planet Fitness with my daughter all the time. I had missed about a month or two of going. I went in and my personal trainer was in there and she was like, "Hey, Tina, so glad to see you." I said, "Hey, me too." I said, "I'm going to hit the circuit." She said, "Okay." So I did the little circuit. I got to the second thing in the circuit and I had to sit down. I couldn't breathe. It was awful. Oh my gosh, it was the worst feeling, not being able to breathe.

They ended up calling an ambulance. I went to the hospital. My heart rate was just insane. My blood pressure was really low. The doctors said, "We need you to go see your primary care." She actually tried to tell me I had Lyme disease. Now at this point in 2016, was when everything kind of came to a head. The previous four years, I had been misdiagnosed from everything from lupus at one point. I was told that it was just diabetes at another point. Now I'm being told that I had Lyme disease.

I started having these fainting spells. I would just pass out at random. I went to a neurologist. Everything was fine. He sent me over to this arthritis doctor who specializes in all things autoimmune. He ran a bunch of tests. He said, "Tina." He says, "You do not have, you don't have anything, on an autoimmune basis, you are perfectly fine. There's no lupus. There's no Lyme disease. There's none of this stuff." He said, "I made an appointment for you. I'm making the referral for you to go to the cardiologist."

So I did. The cardiologist told me, "Tina, we think you have a blood clot on your lung. We need you to go and have a CT scan with contrast done." I came out from that CT scan and it hit me like a ton of bricks. I was like, "I know that this is not a blood clot in my lungs. I think this is pulmonary hypertension like my mom had." They proceeded to explain to me what it is, and I said, "My mom had it. I'm familiar." That Friday, we went in for a heart catheterization. It was confirmed. I got started on Remodulin and Letairis.

From there, I found out that I had a nephew I really didn't know. He was diagnosed when he was 17. Well, then we found out, last year on Mother's Day, my niece Isabella was diagnosed. In between me being diagnosed and Isabella being diagnosed, I had a little great nephew in California. He was diagnosed, but passed away just shy of his third birthday.

Family has been very supportive. I did start a Facebook group where people that have the heritable pulmonary arterial hypertension can come to, as well as family members. A few of my family members are in it as well, just so that everybody knows. It's very important for caregivers especially to know that these things that we're going through are normal things to happen with us. Nausea and lightheadedness and not being able to walk five feet sometimes and having to be your oxygen all the time.

If you're a brand new caregiver, this stuff can be overwhelming. So just have that support for them to be there, we kind of help that. Everybody kind of gives their little tidbits. Some of my favorite ones have been about combating the depression and the anxiety that just comes along with this illness. Just having the support system is just phenomenal. Where I live, I'm very far away from my hospital. Pittsburgh's two and a half hours from me. So I'm not near any kind of support group. I had to create my own support group. That's really important. So if you don't have a support group, even if it's just one or two people that you can have those people that are like, "Hey, I haven't heard from you in two days. I know you're depressed. Get up off of your butt. Let's talk. Let's have a conversation." Even if you're not face to face, sometimes you just need a friend that you want to talk to and vent to and that's just important to have. I encourage people to do that.

Now we're going into the transplant phase of things. In September, I go up to Pittsburgh for a week, where we do all the testing to see if I'm even going to be able to get on the transplant list. So we have that coming up. That is another thing that's very scary for our family, because my mom had one lung transplanted. But we now know that you must have two. We know that all the medical stuff is completely different than what it was back in 1995. But when you have a father that's 80 years old, it hits home to him very hard.

So not only do I feel like I have to be a support person for him, to keep encouragement up, but I have to have it for myself. So don't feel like you always have to be the person to fix everything or to be the one that's 100% encouraging all the time, because it's very hard. It's very taxing. That's why I say to new people in our group that are newly diagnosed, find yourself that one person that you know you can call or, if they don't hear from you in a couple days, will call you. The depression and anxiety with this disease is real. Find something that you like to do, whether it be a craft, crochet and needle work, painting, gardening, going for walks, whatever it is, something that you can do sitting at home. Find a good book to read. Libraries still exist.

Find something that you really like to do and focus a little bit on that every day for at least 20 minutes. Give yourself 20 minutes of you time. It will help so, so much. Feel free to come to our Facebook group. Put in the search, pulmonary hypertension or pulmonary arterial hypertension, heritable pulmonary arterial hypertension. You will find all kinds of Facebook groups. Join those groups. There are people in there that are just like us, that are a wealth of information.

Keep in touch with your doctors. Find a specialist, somebody that actually knows about pulmonary arterial hypertension. I'm excited because, yes, I'm going for this transplant evaluation, but talking with my specialist, the FDA has a medication that they're hoping is going to be approved soon. It's specifically for those of us that have the BMPR2 gene. That is looking very promising. The medical stuff is just so fascinating to me and how much it changes all the time.

Our family does have that BMPR2 gene. I'm all about reading about the gene and what it can do and all those little scientific things that are kind of geeky, but I love it. So I'm excited and hopefully this will come out and maybe I won't need a transplant.

I'm Tina Gardner and I'm aware that I'm rare.

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