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I'm Venting Here And Not Looking For Sympathy.

I'm Venting Here And Not Looking For Sympathy.

So yeah I get it I have this terminal disease and its progressive and I end up suffocating.

I have had major anxiety problems my entire life and I don't know what to do with the time left.

posted December 1, 2022
A myPHteam Member

Marty, I never wanted to live that long. I don’t think I can afford it. 😂

posted January 5
A myPHteam Member

Thanks for the hugs. I try to take life one day at a time. Otherwise it could be overwhelming. 😀

posted January 7
A myPHteam Member

I just got diagnosed after Thanksgiving with secondary pulmonary hypertension due to unsuccessful control of sleep apnea. It’s ironic because I’ve been married to a Respiratory Therapist for 46 years. Although there’s no cure, I started on an medication to open the narrowed arteries for blood flow to my lungs. I will be looking into treatment options to better control the sleep apnea such as wearing a night guard dental appliance.

I’m new to this and have a lot to learn but in thinking about your comment that you have a terminal disease, that can be said of all of us, even those that don’t have PH. Life is terminal and progressive. We are all just walking each other home so it’s about the journey not the destination. Enjoy life, live life and love life. We didn’t pick this disease but it picked us and now that we have it it’s up to us to face it with as much courage and grace as possible.

posted December 28, 2022
A myPHteam Member

My heart goes out to you sweet lady, I feel so much simpatico for you! Others could sympathize, but we can empathize for each other. All my love to you dear Pat V.💞

posted December 1, 2022
A myPHteam Member

Dorothy4: I think you are so right.Feels like yesterday. I was at every Emergency Room visit, Hospital stays regardless of location or length of stay. Talk about '" them not liking us".He had multiple blockages in his arteries and he was in so much pain. He was being "maintained" at our local hospital, while we waited for a transfer to Albany, N.Y. for surgery. I did go to the Insurance person & medical providers I went to everyone And demanded they make his transfer happen because otherwise he is going to die here!! He was moved that night hours after my demand!!!At this time in hx. they did not do any heart surgery where we lived I slept in my car many nights. The triple by-pass in Albany was supposed to be a simple procedure without incident. He had been on Warfarin drip and was a "classic"bleeder post surgery. Then infection set in / ya know one thing after another. That slmple procedure he was ed. upstate for a month in hosp. Finally, he can get d/c. We get home a couple of hours drive and immediately he has difficulty breathing. I take him back to Albany and he needs to be readmitted because his lung had collapsed.
I'm sure you have many similar stories.
But, you and I need to be our own advocates. This is why sometimes it seems like I may know info. Nobody else is going to go to a dr. with me.Noone else will ask questions. It's all up to me.
Angel hugs to you, Patv.

posted December 1, 2022

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