Tagged: 30 Days of PH, PH Awareness Month
- This topic has 13 replies, 4 voices, and was last updated 4 months, 4 weeks ago by Jen Cueva.
October 29, 2021 at 2:26 pm #32283
Do you have any plans to spread PH Awareness in November? Please share with us if you do!
A great way to do it would be to share part of your story in the “30 Days of PH” project. There is still time to do so!
Were you recently diagnosed (Under a Year) and think you don’t know enough yet to have anything to share? I bet you are wrong. You would help many feel less alone by sharing what this past year has been like for you. If you are interested in sharing the beginning of this journey in “30 Days of PH” message me your email address and I will provide you with more information. Only looking for 300-400 words and a picture.
November 1, 2021 at 2:58 pm #32298
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.
September 2, 2022 at 1:26 pm #35742
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?
September 6, 2022 at 4:12 pm #35753
@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!
September 7, 2022 at 12:52 pm #35762
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.
October 4, 2022 at 3:41 pm #36050
@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 🙂
October 5, 2022 at 7:13 pm #36057
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!
October 10, 2022 at 4:59 pm #36085
Thanks Colleen, I’ll take all the prayers I can get 🙂
October 7, 2022 at 6:40 pm #36070
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.
October 10, 2022 at 4:58 pm #36084
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!
October 11, 2022 at 2:50 pm #36104
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.
September 7, 2022 at 1:46 pm #35769kyParticipant
@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
September 8, 2022 at 12:28 pm #35778
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.
November 1, 2022 at 12:29 pm #36303
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.
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