November is PH Awareness Month

[jen-cueva]

Thank you, @colleensteele. I will be sharing the 30 Days of PH stories on my social media. I also will be sharing a video that I did for a CME company for medical professionals this month. The video is about COVID and PH and shares my journey.

I am looking forward to the stories this year. These stories help more people than you could imagine. As Colleen shares, even those who are newly diagnosed, your voice matters.

If you are interested, please reach out to Colleen or me. @mknevada, what about you? I know that you are newly diagnosed and a young adult.

Your stories all matter.

This year, like last, I feel like my awareness this month has been slower than in previous years.

Again, thank you, Colleen, for your passion and dedication to this project this year. These stories are near and dear to our hearts, I know.

[jen-cueva]

Getting a head start on PH Awareness Month activities is never too early. It’s only 2 months away now. Can you believe it? Then will be the holidays again.

Maybe some of you would like to participate in our 30 Days of PH event each year. Please think about it; we are happy to help make that happen.

@mknevada, how are you doing? I know that the Houston area’s heat and humidity have been horrible. How are you adjusting to life with PH?

What types of awareness activities will you participate in this upcoming November?

[Colleen]

@jenc PH Awareness month has been on my mind too! Ready-set-go! Please reach out to us if you want to share your story in November!

[jen-cueva]

Yes, we are so ready, so who here would like to share their story? I think that @kakes and @hussbutton would have some interesting experiences to share. Also, what about you and Bryan, @kygon?

Where are our long-time members out there reading who may want to share their PH journey to encourage others looking to grab onto a bit of hope to get through this challenging, rare disease? It’s simple, and we will help you share your story.

[meghan-nevada]

@JenC Hi! I’m doing okay. Its been quite the year from a PAH perspective…had a scare back in March where I had to go to the ER because I collapsed and stopped breathing, granted I was in Colorado. So I had to officially break up with Colorado which is sad because its my favorite state behind Texas of course. Then in April I went through the process of retrieving my eggs so we have frozen embryos waiting for a surrogate. The search for a surrogate (or Gestational Carrier) has been stressful and unsuccessful so far, but I think we are going to have to enlist an agency at this point. Meds have been adjusted here and there, my doctor is still trying to decide whether he wants to switch me from tadalafil to adempis. I think I might (at some point) schedule a trip to Mayo for a second opinion. Not because I distrust/dislike my doctor, but because Mayo is the best and….why not?

Other than that, I’ve been working and traveling. We also just put a pool in our backyard so super excited about that!

Hope y’all are doing well 🙂

[Colleen]

Oh my gosh @mknevada that is a roller coaster of an update! As far as breakups go the one you had with Colorado was extreme! I’m so sorry you went through that!

I will add your search for a surrogate to my prayers. We are here for you if at anytime you want to talk more about what you are going through and feeling throughout the experience.

Wish I had a pool in my backyard! That sounds wonderful, especially after work or travel. I’m sure it will give you much needed relaxation!

[meghan-nevada]

Thanks Colleen, I’ll take all the prayers I can get 🙂

[jen-cueva]

Hi @mknevada, what a ride you’ve been on this past year! I hate to hear about your breakup with Colorado.

But that pool in the Texas summer heat will help you keep cool. Where have you been traveling?

Do you think you’ll try the Adempas before getting a second opinion at Mayo? It sounds like you have enough on your plate at this time.

So happy to see you pop in, Meghan. Please know we are here to support us- hugs.

[meghan-nevada]

I never really heard back from the doc on the Adempas, he was waiting for blood work and my echo…which I never heard anything about. It seemed like he wanted to keep it in his arsenal for as long as he could because its the last thing he can do for me orally…? But I’m not sure if the fact that I haven’t heard from him just means he doesn’t see the need to switch me at this time.

We just got back from Grand Cayman – it was gorgeous! Got to hold stingrays, swim with sharks and relax. We were originally supposed to go to St. John, but had to pivot because of hurricane Fiona and then we had to leave Grand Cayman early because of hurricane Ian haha. That’s what we get for traveling during hurricane season right? But it was a good trip and I am glad we got to go!

[jen-cueva]

Hi @mknevada, wow, that’s strange about not hearing back from the doctor. Do you see Dr. Sahay or another PH specialist in the Houston area?

I’m sorry you’ve had to deal with this and not get any relief.

Wow, the Cayman Islands sounded beautiful and relaxing until you had to leave there, too, because of the Hurricane. I guess living in the Houston area, you are a tad more comfortable and flexible about traveling during those months.

However, I’m happy you had some fun adventures there before leaving. It sounds like you made tons of new fun memories. Rest up after that and take care of yourself. Keep just posted on how you’re doing- hugs, my PHriend.

[kygon]

@JenC I don’t know that I am one for spreading “Hope” as our daughter died so quickly from this awful disease, and sometimes I get pretty panicked that my husband is trying to follow her in her footsteps! I of coarse have hope that he will end up sticking around for a very long PHight! And I do love to hear from people like yourself who continue to beat the odds and continue their PHight, honestly hearing from people who continue to beat the odds really has helped me rebuild and maintain my own hope! I will send my email and see what the 30 days of PH is about though, I think awareness is important just not sure I have what it takes to inspire, sometimes, with my anxiety and grief I think all I could possibly inspire is fear and deep breathing exorcises hahaha

[jen-cueva]

Hi @kygon, you have such a heartbreaking story to share about your daughter, but you can also share how you manage to get through each new day. Bryan is now diagnosed with PH and the challenges you and your family struggle with.

You may not think you offer hope, but your story and comments, even here in the forums, benefit many of us more than you realize. It may help others open up about loss and how they manage after, especially when there is some familial PH. Think about it, no pressure, hehe.

[jen-cueva]

Happy PH Awareness Month, PHamily and PHriends. How will you increase awareness and lend your voice this month? Let’s share PH with at least one new person this month.

Speaking of awareness and advocacy, fellow PH columnist @mike-naple shares how important it is to take a call to action and vote. You can read more here.

Mike talks about the local level; I have contacted all my local members of Congress and received letters and emails back from most. I tried calling Gov. Newsom to declare a proclamation that November is PH Awareness Month with no response. I am calling again today to follow up. With many other PHriends here in CA, I am sure he will see this through.

[jen-cueva]

Happy November Awareness Month, Y’all! Does anyone have anything planned to help raise awareness this month?

I’ll be sharing stories in our <b style=”background-color: var(–bb-content-background-color); font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>BioNews Community Spotlight throughout the month. I always enjoy reading through others’ journeys, and we can all learn from each other.

Our news team wrote an informative article about how our PH community around the world is helping to spread awareness. In the article titled, Living PHearlessly is goal for PH Awareness Month and beyond.

You can read the full article below. Please share some of your thoughts below, and let’s talk about this.
https://pulmonaryhypertensionnews.com/spotlight/living-phearlessly-goal-ph-awareness-month-november-beyond/?cn-reloaded=1

pulmonaryhypertensionnews.com

Living PHearlessly is goal for PH Awareness Month and beyond

The pulmonary hypertension community will be living PHearlessly, and raising funds for research, during PH Awareness Month this November.

[vanessa-vaile]

Trying to reply but not having much luck

[jen-cueva]

Hi, @Vanessa Vaile. Can you share in a message or here what you are trying to respond to and why you are having trouble? Are you getting an error message? I will ask our tech team if they have any suggestions.

[delois-tweedy]

Jen, I’m so thankful to read about how people all over the world spread the education and awareness about PH. I am still wondering why so few people seem to even know about it . (I was one of those people up until about 3 years ago.) One way I’ve found to spread the word in my little part of the world, is to wear tee shirts. I have 2 – one that promotes Pulmonary Hypertension Awareness and another that is for Rare Disease Awareness (featuring the zebra, of course!). When I wear these, it never fails for someone to ask about what it means or what is PH. This gives me the opportunity to educate; I can get on my little soapbox at times!

[jen-cueva]

Hi, @DeLois Tweedy. I am thrilled that you find this interesting. I love the pictures of you in your T-shirts. This is one way we can spread awareness. Yes, wearing those, people will begin to ask questions and spark interest, or maybe they are nosey.

Thanks sfor sharing, keep on PHighting and wearing those Tees, my PHriend.