Sherri Odusanya - phaware® interview 586

Pulmonary Hypertension Tried to Shrink Her World. She Made It Bigger.

Being prescribed oxygen broke PAH patient, Sherri Odusanya, in a way her diagnosis hadn’t. Sleeping beside a roaring machine. Dragging tanks through daily life. Crying in the car after picking up her daughter from school. Then came the real gut punch… doctors warning she might never fly again. For a woman who loved travel and had family across the ocean, it felt like her world was closing in.

My name is Sherri Odusanya. I'm originally from Boston, Massachusetts, but have now been living in San Diego, California since 2017. I was diagnosed with pulmonary arterial hypertension in 2008. Growing up in Boston, growing up in a very cold climate, I've always had a bronchitis going on as a kid, pneumonias. My lungs have kind of always been a little bit of a challenge. It didn't really stop me from doing anything. I would always get yearly bronchitis and maybe pneumonia once in a while. In terms of my diagnosis, it was 2008. I was actually living in the Netherlands. I'd gone to the hospital for some sort of upper respiratory infection, in Holland. They were concerned about it. They actually did a CAT scan of my lungs and some other tests. I did not have a right heart catheter at the time.

I got a phone call from my doctor in Holland. I was literally getting ready to go on a flight on a family vacation. I said, "Oh, I wonder who's calling me now?" I picked up the phone and my Dutch doctor told me that I had pulmonary hypertension. I'd never heard of it. I didn't know what it was. I said, "Okay, thank you very much. I'm going to miss my flight." I hung up and I did what everybody else does. I guess I Googled. I saw the dreaded news of what the disease looks like and what to expect from it. It did not look very good. I thought, "Man, I wish I would've got that phone call after my vacation." I just did my best to have fun. I even got sick on the vacation, as well. It was probably stress induced. When I got back to Holland, they didn't do any treatment for it. It was just something in the back of my mind, because I knew I'd be moving to the States a year later.

We moved back to Portland. That's when I got in touch with a pulmonologist again. That's when they ordered the right heart catheter. All the truth came back that I definitely had pulmonary arterial hypertension. I had also forgot to note, in terms of my lung issues, I was diagnosed in 1992 with sarcoidosis, which impacted my lungs, which is an autoimmune disease that can impact anywhere in your body, but for me, it was my lungs. Now, I had the pulmonary hypertension on top of the sarcoidosis. There was some talk about maybe the sarcoidosis is what caused the pulmonary hypertension, which after all these years, it seems like that's what they've concluded at this point. At first, I was told I had idiopathic pulmonary hypertension, but now I'm being told that it's probably as a result of having sarcoidosis all these years, but that's how I was diagnosed.

I think for people with pulmonary disease, our normal is different from someone else's normal. Even within all the patients, we have a different normal or different baseline. For my baseline, I've kind of always been used to being short of breath and working around it, seeing how can I handle different moments in my life where I have shortness of breath. I started taking one particular med to manage it. Early on in the disease, after I got back to the States and I was definitely diagnosed after the catheter, I was a mother of two children that were like seven and nine. I just had to do what I had to do very slowly, sometimes very methodically and just kind of had to fashion my life, take my medicines, try to eat healthy. And I'm just going to go on with my life, until 2015.

What happened is I was dropping some family members off in Palm Springs to this mountain, Mount San Jacinto, which you go up and it's... I don't know how many thousands of feet above sea level it is. Oh my goodness, that was like a crisis for me. I was by myself in a car. I dropped them off, kind of felt like I was in the middle of nowhere. My heart started racing. I checked my saturation, because I have those little oximeters, which I advise everyone to have who has PAH. I checked my oxygen and it was at 72. I was by myself. Palm Springs was kind of a desert. There was no one around. Then, I started to panic because here I am driving with a rapid heartbeat and low oxygen. I'm like, "Am I going to pass out or what's going to happen? Is anyone going to find me?"

I happened to see a lovely couple walking down the street and I just drove up to them and I said, "I'm in crisis. Can you please take me home?" They did. Complete strangers drove me back to our house. Then, I started to do some more deep diving and research how elevation and pulmonary hypertension does not go hand in hand. After that, I was put on oxygen and it was kind of like oxygen as needed. I would walk around the house and I would see how if I was sitting down, my oxygen maybe was at 94. As soon as I got up to walk, it would drop down to 86. So I had to lug this... everyone knows the deal. When you get all this oxygen dropped off at you. For me, in 2015, it was cylinders and a stay at home one.

That, to me, was almost worse than the diagnosis itself. That was such an imposition. I felt like sleeping with it was like sleeping with a vacuum cleaner. I hated it. I was picking up my daughter from high school after I was told I have to have this oxygen and I just broke down and cried and told my doctor. They had me see a therapist to help me overcome my anxiety and fear and craziness and anger, whatever. Then, the other piece of that is like, some doctors were saying I can no longer fly. And that devastated me because I love to travel. My husband's from England, so we go to Europe a lot. So what does that all mean? I'll never see my in laws again. I even researched taking a cruise around the world, taking a cruise across the Atlantic, how to get over there.

That really interrupted my thinking and my lifestyle and things I wanted to accomplish. Even just career wise, I worked in radio and my voice started to change. Even with singing, I used to sing, as well. I come from a family of musicians and singers. Somebody asked me to sing in their wedding about a month ago and I'm like, "Absolutely not. You remember my voice from the 80s. I don't sound like that anymore.” So, it kind of steals some joy and it steals your abilities and just different things. I know it's different for everybody, but for me, those were my experiences.

I was put on an additional medicine, an additional pill. With that pill, things started to turn around. I started to exercise. I got courage from one woman in particular on the online PH support group. I was talking to her how I miss traveling. She goes, "Well, I just take my oxygen on the flight and I fly and I do fine." She was very ill. She gave me the courage to just try it. I'm like, "What's the worst that could happen?" I faint and then the plane will have to land. I thought of all the worst things that could happen when you're 35,000 feet above sea level. I tried it and she really gave me the courage. That was a really good support group story. I did fine. As long as I'm sitting in my chair and eating and with my oxygen on, on the flight. I've been all around. We've been traveling so much.

Since, I've been taking my two meds and exercising and losing weight and sometimes watching what I eat, not all the time. I cook a lot, so I don't eat a lot of processed fast food at all. We don't really like that in my household. I do cook a lot. Yeah, so since then, these past few years, I'd say since maybe like 2017, since we moved down to California, and that was one of the main reasons to move to San Diego is to live coastal. That seems to really have put my pulmonary hypertension, kind of has calmed it down to the point where I don't need oxygen 24/7 to walk around. That's a huge relief.

I'm able to fly. I do sleep with it still at night, but now they're even saying, "Well, maybe you don't need it at night anymore." So jury is still out for that one. But yeah, I've been able to maintain my saturation above 90, just with general stuff, stuff around the house or going for very slow walks, trying to keep a positive attitude. That's kind of been my experience up to now. I was so concerned like all of us were about COVID. I did really well when I got it. I had it once and I didn't get it till a year ago. Actually it was only in my sinuses for some strange reason. I never felt it in my lungs. My lungs were fine when I got COVID.

Information is really key in kind of understanding your disease process. That goes for anything. You really have to know kind of what you're dealing with. I think so not only just going obviously to Google. I've just kind of done really deep dives into my own hypertension and sarcoidosis and being hopeful. I think what helps me get over some of the hurdles is, like I said, information, but also looking at other people that have done well on the disease. Some people have done really well and have lived a good 30, 40 years after diagnosis. That's a really good thing. It's not all doom and gloom. So once I kind of got that under my belt, it's like, "Well, maybe I'm going to be that person to do well. Maybe that's me. Maybe that will be my story."

The support groups are great. I was part of the support group in Portland for a while. That was an amazing group as well. We raised a lot of money and we had a lot of fun. I saw other people in that group, another woman who was very ill, in Portland. Her and her husband, actually at the time, started a winery and it's done great. I thought, "Wow, she's not letting it stop her. She's got this amazing, beautiful winery in Oregon. She's traveling." I looked at different people who were examples who were doing well, who didn't allow it to stop them. That really empowered me. I'm like, "Okay, they're doing it. So there's hope."

You almost have to tweak the disease for yourself. People come to pulmonary hypertension from so many different heart defects or autoimmune diseases or diseases that they were born with or drugs, either prescribed drugs or street drugs, which is so bizarre to me, because there's so many different reasons for people to come into this disease. You have to really kind of look at yourself as an individual and see what works for you and what doesn't work. I've kind of had to figure that all out. I'm actually very stable right now and doing pretty well.

I would just say really make use of the support groups, kind of ask questions, because different people have different experiences and different tips as to what works for them or what hasn't worked for them. I have found those support groups so helpful. I have a very supportive husband and I kind of live life just probably a little slower than most people, just kind of take things in stride. But yeah, that's my story so far.

My name is Sherri Odusanya and I'm aware that I am rare.

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