A CTEPH patient discusses love, marriage, and lots of romance
Tales of a late-life union where the disease isn't the only thing that's rare
True love isn’t just found in fairy tales. Terese Tuohey met her Prince Charming, Timothy (Tim) Tuohey, at a dance. They fell in love, married, and will celebrate their 15th wedding anniversary in October.
In an email interview, I asked if they view their marriage as rare. They agreed they do because they found love in their 50s. And as Tim affectionately added, “Our marriage is rare indeed — made in heaven!”
Neither of them mentioned Terese’s chronic thromboembolic pulmonary hypertension (CTEPH) diagnosis as part of their union’s rareness. Only love defines their relationship, which is how it should be.
In honor of Valentine’s Day and Rare Disease Day later this month, here’s the inspirational love story of Tim and Terese.
The couple, who danced their way into each other’s hearts, started to notice a change of pace.
“I thought I had a bad asthma attack – all the time,” Terese wrote. “Climbing stairs left me gasping, walking quickly, and dancing was difficult, and I’d have to stop to rest.”
Terese was on Evista (raloxifene) for osteoporosis. In 2014, she experienced her first pulmonary embolism (PE). She stopped taking Evista, but in 2015, she had another PE. Her doctors attributed the blood clots to her flying a lot for work, but Terese still thinks Evista had something to do with them, as clots are listed among the possible side effects.
She has been on blood thinners ever since. In November 2019, her doctor ordered a ventilation-perfusion lung scan, also called a VQ scan, which helps diagnose blood clots in the lungs. That’s when she was diagnosed with CTEPH, a rare and potentially fatal form of elevated blood pressure in the lungs.
At the time of her diagnosis, Terese and Tim had been married for 11 years.
What’s changed since diagnosis?
Terese considers herself lucky to have undergone a successful pulmonary thromboendarterectomy in January 2020. This procedure removed the chronic clots from the lung vessel.
She currently takes warfarin, Opsumit (macitentan), and tadalafil (sold under the brand name Cialis, among others). She’s doing well, thanks to these treatments and some lifestyle changes.
“We don’t go out dancing anymore, mostly because of COVID restrictions,” Terese wrote. “Instead, we go to doctor appointments together. We work on a lot of jigsaw puzzles now. And we are supportive of each other’s daily lives.”
Tim is both a loving husband and caregiver. He does the heavy housework and yard work and drives Terese to her doctors’ appointments, which he attends so he can ask questions and get clarifications about her condition.
But most precious to her: “He also holds me when I’ve had ENOUGH and lets me cry on his shoulder.”
Terese helps with the cooking and laundry, and she further supports her husband by encouraging him to go out with his buddies occasionally.
“I think it helps keep balance in his life,” Terese explained. “And he has a home company that keeps him busy selling Amsoil (auto lubricants). This gives him something to do that is all his and is a respite from being around for me.”
How do they keep romance alive?
“We tease each other a lot,” Terese wrote. “Tim makes me laugh at least once a day, and we’re always saying ‘I love you’ to each other.”
For them, it’s the little things that can mean a lot, like buying something they know their mate would like to eat or giving each other a back rub on a whim.
On Jan. 26, Terese turned 75. Throughout the month, Tim gave her three kisses every morning so that she received 75 of them by her birthday.
The morning of, he woke her by singing “Happy Birthday” and greeting her with four dozen roses, breakfast, and a funny card. Later he took her out to dinner and had cake, Champagne, and a sweet, loving birthday card waiting for her at home.
“I was spoiled rotten,” Terese wrote.
For Valentine’s Day, they’ll probably give each other cards and attend a gala at their church on the weekend.
“That’s probably enough celebrating for me,” Terese said. “I will more than likely spend the next day recovering and doing nothing.”
Advice for other couples dealing with an illness
“Remember, love is shown in many ways, not just sex,” Terese advised, “although pillows (lots of them) in bed are very helpful for staying elevated to help [with] breathing during those intimate moments.”
Terese boasts that gratitude is the attitude that keeps a relationship healthy. “Say ‘thanks, honey’ when your mate assists you, or does a chore, or makes dinner,” Terese suggested. “Even a card, given when it is not expected, is something that is easy to do.”
Doing things together is also a way to strengthen a marriage. That’s why Tim and Terese enjoy puzzles. They give them something to do in the evenings besides watch TV.
“Tim says our vow was ‘in sickness and in health’ and he means it. We are ‘together forever and ever — and a day more!'”
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.