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Real members of myPHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Anybody had the pte surgery

A myPHteam Member asked a question 💭
Chicago, IL

My pte surgery is tomorrow at northwestern hospital in Chicago.This surgery is suppose to give me a better quality of life

August 24
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Answer Summary

Members rallied around someone preparing for PTE surgery at Northwestern Hospital, offering prayers, personal encouragement, and warm... Read more

Members rallied around someone preparing for PTE surgery at Northwestern Hospital, offering prayers, personal encouragement, and warm emotional support before and after learning the surgery did not go forward due to anxiety. One member shared a detailed personal experience with the same surgery, describing both hopeful results and ongoing challenges with CTEPH, CHF, and mobility, while staying positive and using tools like a rollator to manage daily life. A recurring theme was compassion and community, with many members reminding the poster to be kind to themselves and encouraging therapy as a helpful next step.

A myPHteam Member

Good Morning @A myPHteam Member
How are you doing this morning? I hope you feel a better today.

August 29
A myPHteam Member

Oh wow Tracey…Mari is right. We are all humans. You have to be kind to yourself first and foremost.

August 28
A myPHteam Member

Yes, In 2016 I had that surgery. I have CTEPH. My ordeal was a bit odd. I was misdiagnosed for having a asthma flare up. Turns out I had 4 blood clots. Well, I lived with those clots for 3 1/2 mos.

After, the surgery. I did well. Unfortunately, my surgery was only a success for 7 months. The day before everything went backwards... I felt Great like the old me before I got those clots. Sadly, because I had lived with those clots for so long. My poor lungs 🫁 were not strong enough. My lower left lobe Collapsed.. its now considered dead tissue. My CTEPH had returned. It has changed my quality of life. But. I choose to remain Positive. Like most I have good days and bad days. If I go into a store and there are no motorized sccoter to ride. Then I usually get a cart or use my Roliator. Because whenever I am on my feet I have to pace myself. The moment I stand up, my oxygen levels start to go down . And I become very short of breath. But if I sit rest a bit. My oxygen levels come back up. There's only been a couple times. I came close to passing out... I started to see black. Not good.
The day I have to go on oxygen means my condition is getting worse. But, my Roliator. Its been good for me. It allows me to go to places where there may not have much seating. So I can always have a place to sit. Since living with PAH. I also have CHF , SVT a form of Tachycardia.. I ve cut out a lot of negativity in my life. Which has been very helpful.. Keep us posted on your Recovery. I hope all goes well for you. Just take one day at a time..

August 27
A myPHteam Member
August 31
A myPHteam Member

Thanks for the reminder. Yes. I got to meet the CTEPH specialist from Northwestern when he spoke at a meeting here. And he will be coming back in January or February to speak to us again. Dr Cuttica. He was amazingly impressive and charming.

August 24 (edited)

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