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Hello- my name is Patrick Martin and I have been diagnosed with PH about 3 months ago. Other than a water pill, I am not on any meds. at this point. I had a sleep study last week and waiting for the results.

My right side of my heart is severely enlarged and my estimated pulmonary pressure via doppler was 78-83 mmHg.

I am constantly exhausted…[Read more]

I am with you @jenc.
Fresh fruit, especially watermelon, is on the top of my list.
I am always craving the slushies that McDonald’s sells in the summer.
This year they have a strawberry watermelon flavor that is delicious.
I have to watch my fluid intake as well and it is a very difficult thing to do in the summer.
My favorite go to veggie to…[Read more]

Hello.
Sounds like you both had a perfect Mother’s Day @colleensteele and @jenc.
Ordering in for dinner seems to be a theme this year as we did the same thing, but for lunch.
Both my son and my daughter were here all day as were my daughter in law and my grandkids and we had a wonderful family day.
We just hung out and listened to music and ate…[Read more]

This week we have several new members to welcome. Watching our PHamily grow is amazing. I hope that you all have found some support by being here. Some new members like to read first before posting; that is OK, too. We are here to help and support you through such a challenging journey.

This week, help me welcome @maelees, @pmartin4595gmail-com,…[Read more]

Thanks for the positive vibes…..can use all I can get.

Mothers Day pretty much started out normal…..I made breakfast, gave her flowers and candy. Then she wanted to go to Costco. Turns out she made an appointment for me to get my hearing tested. Guess she was getting tired of me saying “HUH’, “What?”. Then there’s the matter of loud TV along…[Read more]

Thanks, @colleensteele. It was a pretty relaxing day here, too. On Saturday, my Moma came over, and my niece. Manny made burgers on the grill, and we ate and enjoyed having them over.

So, yesterday, Manny worked, and I rested most of the day. I had planned to come on and post for Mother’s Day and did not make it.

I slept for 2 hours once Manny…[Read more]

Thanks, @colleensteele. It was a pretty relaxing day here, too. On Saturday, my Moma came over, and my niece. Manny made burgers on the grill, and we ate and enjoyed having them over.

So, yesterday, Manny worked, and I rested most of the day. I had planned to come on and post for Mother’s Day and did not make it.

I slept for 2 hours once Manny…[Read more]

Hey @wheeldog, You are correct. There is so much conflicting information about COVID and the vaccines. I, too, have not yet had mine. I am still waiting for my PH team to approve me to get mine. But because I had a rough dose of COVID, I am sure that they want to vaccinate me soon.

The long-term effects of having PH are scary. Just as you…[Read more]

Hi @wheeldog, the PH team had previously seen me at UCSD in La Jolla, which is why I asked. They do have a wonderful PH team there. So, don’t hesitate if you need one while there.

I, like @colleensteele, agree that having the doctors communicate across states is awesome. We do need more of this to improve patient care.

Glad things worked out well for your son. My heart doctor and lung doctor work well together. They keep the oncologist informed as to whats going on so they don’t cause problems with my cancer. Everything seems to be working well.

My Oncologist is at UCSD in La Jolla, CA. He has already said he can fix me up with doctors there if it is needed. My goal is to be able to head south this winter and be set up to make it through the winter without a PA doctor. We’ll see how that works.

Thanks. I don’t know what my wife will do. Seems like all the “experts” are putting out conflicting information……masks-no masks, business open or closed etc. Pretty hard to figure what info is correct. I think she is waiting for long term effects to be known and the majority of experts can agree on something.

@wheeldog I’m glad your team at home and your team in San Diego communicate and work well together. I wish it was possible for more people. Some medical professionals are not willing to share a patient with another facility.

It worked out for my son too. We live in WA state but his primary PH doctor and transplant team where at Stanford, CA. His…[Read more]

Hi @wheeldog, I am grateful that you shared your experience and thoughts with the Moderna vaccine. It sounds like you and your medical team made the best decision for you. With all going on, I am certain that your immune system is compromised.

I can understand the thoughts that your wife has about vaccinations. I am grateful to know that she is…[Read more]

Hi @wheeldog, I hope and pray that adding Tyvaso will offer you some relief.

Is your Oncologist in San Diego or another location in California? I was going to mention that San Diego and UCLA both have PH centers. I would think they would want to be a part of the treatments that you are doing for your cancer. Have they mentioned having their PH…[Read more]