I’m Aware That I’m Rare: Sharon Tokonitz (449)

phaware global association®
5 min readDec 28, 2023

the phaware® interview

Six years ago, Canadian pulmonary hypertension patient Sharon Tokonitz was rushed to the hospital with a massive bilateral unprovoked pulmonary embolism. She discusses her road to recovery from being bedridden to returning to an active life thanks to pulmonary rehab.

My name is Sharon Tokonitz. I live in Kingston, Ontario, Canada, which is 100 miles south of Ottawa, the capital of Canada. I ended up, September 11, 2017, going into the hospital by ambulance, with a massive bilateral unprovoked pulmonary embolism. A year before, I had gone to my family physician, because I started sweating. Now, it was July. It was hot weather. But something, in my mind, just didn’t seem right with me. Because there’s heart disease in my family, my family physician referred me to a cardiologist. He told me, “There’s not a thing wrong with your heart,” he said. “It’s got to be your lungs.”

I saw him in September. By the time the referral went to respirology, it was November. Then from November of 2016 to July before I got an appointment with a respirologist, as soon as she examined me, she said, “Wow, there’s a blockage someplace in your chest. Don’t know what it is, but we’ve got to start testing and find out what’s going on.” That was July of 2017. On September 11, 2017, I went into Kingston General Hospital emergency, and had almost lost my life. The doctor said, “Why did you wait so long? Another couple of hours, and you wouldn’t be talking with me.” That’s how quick it was.

I spent the next eight months in hospital from ICU at Kingston General, and then they transferred me almost three months later, over to a rehab facility in Kingston. So I spent from September until May for the first round of being in the hospital. It wasn’t really shocking, because I started sweating. Like I said, it was in July, so it was hot, humid. But every time I’d get out of the shower, it was like, I’d towel dry, and then it was just running down my face. I had this sense of doom or something that was like, something’s not right with me, because I never felt like that before. I mean, I’d always been a person that never sat down, was always on the go. Nursing and raising two children, two boys, active boys, and just never sat down. Something just wasn’t right. I thought that was the end of me.

I had a wonderful respirologist. They were going to try to do surgery to remove the clots out of my lungs. But after all my testing, the doctor that was going to do the surgery said that it was not possible. I never did have the surgery. I still have clots in my lungs. But when I went to rehab, they got me up from being bedridden, up and going shopping at Walmart. The head of rehab, he ordered the walker for me. After nursing and being so active and on the go, and then there’s a walker presented to me. I said, “Oh, I don’t want that thing.” He said, “We’re going to get you up and get you out shopping and all.” I said, “Oh, I’ll never be shopping again.” I was just so pessimistic that my life was done. I mean, they got me up, and like I said, I started shopping at Walmart and the local mall and whatever.

Then the pandemic hit. Life during COVOD was very difficult. I was housebound. I wasn’t going to doctor’s appointments. Doctors were calling me at home. I wasn’t seeing anybody. I live in an apartment building with mostly seniors over 55. Nobody was visiting us. Families couldn’t visit or anything. It was just everybody was on lockdown. I wasn’t going to rehab. I was not seeing my respirologist. She was calling me with appointments, going over my blood pressure and my O2 on the oximeter. Physio didn’t start back up until a year and a half after COVID started.

So I was just in my apartment. The only calls I got was from my two sons. Life was rough then. It felt like you were bedridden again, almost. I started getting back to my clinic appointments, which I just have regular physical appointments all the time. Echocardiograms, and it just goes on and on and on. Then, because my respirologist, who is such a dear doctor to all of us, she does research 75% of her time. She works in critical care and ICU 100% of her time. She was doing clinics for pulmonary hypertension 100% of her time. She was never home, so she had to give up something to have a life of her own also. So she gave up her clinics. So I’ve been transferred now to the Ottawa Heart Institute.

After the world opened up from the pandemic, things have gotten easier. I go to Walmart more. I’m going to my regular appointments. You start to see a little bit of light at the end of the tunnel, “Well, maybe I can start living again.” The statistics have always been, you might live three years. Now it’s come up, like four years, maybe five years. For me, it’ll be six years in September, and I’m still going strong. Yeah, there’s days that I’m so tired I can’t navigate, days I can’t breathe. But I’m stubborn, and away I go, with the help from the doctors and everyone else.

You can get very lonely when you get this diagnosis, and you think that your life has ended right there. I shouldn’t say it’s nice to know that somebody else is in the same position, but when they are in the same position, we can maybe help each other out.

My name is Sharon Tokonitz, and I’m aware that I’m rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story:
info@phaware.com @phacanada

--

--

phaware global association®

Are You #phaware? Pulmonary hypertension (PH) is a rare, life-threatening disease affecting the arteries of the lungs. www.phaware.global