I’m Aware That I’m Rare: Marilyn Hanft (477)
the phaware® interview
In this episode, Marilyn Hanft, a CTEPH patient, shares her experience with the condition. In 2011, she initially mistook her symptoms for asthma but later discovered she had clots in her lungs. Despite her health challenges, she remains determined to live life to the fullest. Marilyn discusses her love for sailing and her current plan for writing a book about her sailing experiences.
My name is Marilyn Hanft. I’m a CTEPH patient. I live in St. Marys, Georgia, but I’m from Maine and lived most of my life in New England. In 2011, I was around all this foliage that was all blooming, and I’m not used to that. So I kept saying, “It’s my asthma. It’ll get better.” It didn’t get better, so I finally gave in and went to the emergency room and discovered that it wasn’t my asthma. It was clots in my lungs. It showed up. They did an echocardiogram, and the high PA pressure showed up on it. My doctor was not good. He didn’t even tell me about it when I was discharged. Because of that, I went home.
I was home exactly a week. Woke my husband up and told him to get me an ambulance, and he was kind of, “Well, how do I do that?” I said, “911,” and he sat up and said, “For real?” I’m like, “Yes.” Was about two and a half minutes before they got here. All in my head I thought, “Just give me some oxygen, and I’ll be fine,” which they did right away. I evidently looked really bad, because we went to the hospital, lights, and sirens, and weaving in and out of traffic. They took me into the code room when I got there. I was about probably 15 minutes or so from respiratory arrest. They did a chest X-ray when I first got there, and I had more clots in my lungs. My right lung was what they call a whiteout on the X-ray with pneumonia on that side.
They shipped me up to the ICU. I remember getting in the bed, and that’s all I remember that day. They put me on the BiPAP, and when I took a breath once they had it all set, my reaction was, “I can breathe.” That night, the doctor that was on came in the room, and that was when I kind of checked back into reality. She told me that I wasn’t getting worse, but I wasn’t getting better. They thought I’d need a ventilator, so she needed to ship me up to Brunswick, Georgia, which is about thirty-five miles away. It’s the bigger hospital. They had the pulmonology group who took care of me up there.
When the doctor said I might need a respirator, I was an RN for 40 years, and I did a lot. My major areas of practice were neonatal intensive care, ICU, CCU, and the emergency room. When she said put me on a ventilator, and I’m thinking, “You’re going to put one of those tubes down my throat. No way I will do this.” You know? That was when they started giving me, number one, told me that I had pulmonary hypertension. They couldn’t figure out why it wasn’t stopping. I was still having clots.
Finally, they did a, I don’t know, whatever genetic testing they have to do, and one of the docs came in, “We figured it out.” I said, “Well, what is it?” He answered a question with a question, said to me, “Who in your family died of a stroke?” I said, “I think maybe my mother’s mother did.” My grandfather had multiple TIAs, my mother’s father. He actually died of a pulmonary embolus. My mother had started having the same TIAs, which affected her more and more as far as speech and cognition. She had to have pureed foods, which she hated. She finally decided that that was it. She didn’t want to be around anymore. She died three days before her 84th birthday. The TIAs didn’t cause her death, but everything was related.
I was in the hospital up in Brunswick for 11 days and got the kind of care and discharge, et cetera, where they were like, “Oh. You’re going to need a walker. You’re going to need this,” and they kept saying to me, “But your Medicare will pay for it.” I said to them, “No. It won’t, because I’m only 63.” Finally, we figured it all out. I came home and had to deal with massive frustration, because I couldn’t do much. I had been out of the house basically for the month of June. My oldest sister came and helped. One of the most important things to me, my older sister’s five years older than me, and since we’ve been adults, more than when we were kids, we are extremely close.
The first night that I was in the hospital, she called, and she has called me every night since. That was 2011. It’s been beneficial for both of us, because she was going through a lot with her husband. I had a husband who dealt with my diagnosis with anger, so things were a little difficult. But she was the first one that got me to realize that I almost died, because she said it. At one point, I was crabby because I can’t do this, and I can’t do that. She calls me May, and she said, “May, you almost died. Give yourself a break.” It stopped me, and I said, “I never thought of that.” It never occurred to me that I might die. It was, “Give me some oxygen, and I’ll be fine”. That really kind of stopped me, because I hadn’t thought about it. I said, “Please, God, I’m not ready yet. I’ve got things I want to do.”
I’ve been doing them pretty much for, what is that, 12 years, something like that? Unfortunately, my asthma flared recently. It’s been getting kind of worse. I’m allergic to oak trees. I have a huge live oak in my backyard, which I love. I love the tree. I have a couple of laurel oaks in the front yard. There are a bunch of other live oaks around. So when that’s shedding its leaves and stuff, I have trouble with my asthma. Recently, a year or two ago, I developed an allergy to pines. I have 13 Southern yellow pines in my front yard. I’ve been having a little trouble with my asthma, and because of that, back in 2019, I had to go on oxygen all the time. I’d been using it at night most of the time, but I had to use it 24/7. I’ve never gotten off it.
It annoys me. It frustrates me, because I can’t go as fast as I want to, and I can’t do things a lot of times that I want to do. I’ve had to deal with that. That’s been kind of hard. I can’t do any of the things that I loved, hiking, camping, that sort of stuff. I already couldn’t ski anymore, because of my knees and stuff. I suppose I would not have been able to do it because of my breathing.
The biggest thing and the most difficult to deal with was that we came to St. Marys on our boat. It was a thirty-six-foot motor sailor. It means it has full sails, but it has a ninety-horse diesel engine. We came down the Intracoastal. We had friends here, so we stopped to see them. We kind of fell in love with St. Marys. It’s a beautiful little southern town. It’s on the St. Marys River. The waterfront there is all older homes and stuff like that. It’s very nice on the waterfront. Although Irma tried to destroy it, but we really, really liked it here. So anyway, my husband bought a house. We pulled into the dock at 6:30 in the morning on December 31st, 2010.
What we didn’t know was that was the last time we used the boat. It had repairs that needed to be done. I got sick. My husband’s hips gave out on him, and we just never could do anything with it. It spent about 10 years up on land. My husband was going to try to work on it, and he just never could. He died in 2021, so that was hard. That was the biggest thing that my health has taken from me. We had a lot of good times on that boat.
I’ve just started on a book about sailing. It’s kind of a memoir/guide. It’s a lot of stories about things that happened to us, good and bad. The working title is Three Boats, Four Dogs, and a Cat: 38 Years of Sailing the New England Coast. I’ve always wanted to write a book, so now I’m writing a book. I have to remind myself to keep at it, because I get caught up in doing housework and that stuff, and I get tired.
What most people don’t realize is writing is hard work. It really is. I belong to the Yacht Club here in St. Marys. We are a small group, and we’re getting older. There are quite a few of us who no longer have boats, but we have get-togethers. We have coffee every Friday morning. In talking to them and telling stories and that as we all did to each other, there are some people that kept saying to me, “You tell the stories so well, you ought to write a book.” Finally, I said, “Yeah. I ought to write a book.”
So I actually read a couple of books on how to get yourself going, and then I took a two-day seminar. It was wonderful. I learned so much. It just reinforced that idea of, “Yes. I want to do this.” It is basically stories, things that happened to us, how we dealt with them, the times we had lobster right off the boat and cooked it a couple hours later. Oh my God, it was good. A lot of stories, basically. We’ll see what happens. I never expected to do it when I was 76. However, it’s a bucket list item that maybe I can get done. Wish me luck.
My name is Marilyn Hanft, and I’m aware that I’m rare.
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