What is your experience with Winrevair (sotatercept) or prostacyclin therapy, such as Remodulin or Flolan? If you have been treated with both, what differences did you notice when you switched from one to the other?

Take a moment to read “Winrevair, prostacyclin therapies work differently to improve PAH outcomes,” by Lindsey Shapiro, PhD. It…

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Reaching out again to see what everyone’s medical calendars are looking like this month. Are there any concerns? Are you hopeful about starting a new treatment? If you don’t have appointments this month, do you have any fun plans to share with us?

I think this is a good topic to revisit and I will do so by responding to @Linda Concoby . Having someone validate your feelings is like an emotional hug. Instead of jumping in with, “It will be ok,” or “It’s not as bad as it seems,” it is more comforting when someone begins with, “You are going through a lot, of course you are upset”.

I…

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We are expecting high temperatures and severe thunderstorms in NJ over the next few days. Thankfully, we have air conditioning.

If you don’t have air conditioning, how do you stay cool and regulate your PH symptoms during heat waves?

@JoliefromThePHlip-side

Forgive my inability to figure out something simple, but I am interested in hearing the podcast that you referenced. When I click on the link, it takes me to the PodBean site, but not to the actual podcast. There was a time when I was more adept to computer skills, but, unfortunately, not so much anymore. I recently…

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How do you honor the memory of a loved one who has passed? Is there anything special you do to celebrate them on birthdays or anniversaries?

The sad reality of PH is that many of us know someone who has passed away from this disease. Are there any PH-related ways that you remember your PHriends? Perhaps a fundraiser in their name, or light…

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Sorry, I misspelled Aidan.

How wonderful, exciting, and proud you must have been watching Cullen walk up to take his diploma. It must have warmed your heart – probably shed a few happy tears. And how special Adian and his girl friend was there to help celebrate 🍾 🎉. Happy thoughts. What a WIN for you all. Warm hugs 🤗❤️

@JoliefromThePHlip-side very true! Advocating for PH should not be about the recognition for doing so. I hope highlighting what people are doing for PH might inspire others to step up tp the plate too. Again, thank you for all of your efforts!

@carol-volckmann I will keep all of you in my prayers, including your sister’s kids. I hope your visit will be short enough that the stress of it doesn’t affect your health. I’m so sorry you are going through this. My heart truly goes out to you!

No plans to come out to WA but Aidan and his girlfriend came out last week for Cullen’s graduation.…

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You’re so kind. You are also a great voice for the community. Thank you for all you do!

We don’t do this for a thank you or a pat on the back. We volunteer our time and talents to advocate for the community, BUT it really is nice to hear that we’re appreciated. Is it not?

Thank you Colleen for checking in to see how we are doing. You are so sweet to ask. My sister is on Hospice care and the pain meds are working for the most part. All 4 children will be there next week which could be very difficult as 3 out of the four are so dysfunctional – I am very concerned. Dick and I will fly down to CA to see the kids…

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Thank you, Cullen, for your excellent feedback on this. You have made good points that I missed.

I would love to hear thoughts from other members. Would anyone like to share?

@carol-volckmann checking in to see how your week, your sister’s, and Dick’s have been?

@JoliefromThePHlip-side You are a great voice for the PH Community! Thank you!

When you look at your medical calendar, do you feel like a June bug bumping into porch lights, or peaceful like a summer breeze?

Do you have something coming up in June that you would like to discuss with us? Please share so we can support you.

How has this week treated you? Are you planning or hoping for some big wins over the weekend? We would love to hear about your wins, big or small, PH-related or not. Are you planning or hoping for some big wins over the weekend?

When diagnosed with PH and/or receive a transplant, many specialists are often added to your medical team. Hopefully, they all give you excellent care. But do you have a favorite doctor or two?

I hope you do! But don’t forget that they are human too. They have lots of patients to prioritize. They might not remember every detail of your medical…

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I also wrote a column about it. I hope that others see the importance and begin to advocate. We all must stand up for ourselves and one another. Thank you so much for your comment!

https://pulmonaryhypertensionnews.com/columns/legislative-advocacy-make-difference-ph-care/

Thanks so much! That was last year’s post, but I’m still advocating for the SOAR Act. I have recently gone with PHA again to advocate for it. I have the podcast here. I’ve been a cohost for the podcast this season.

https://phinsights.podbean.com/e/pha-advocacy-on-capitol-hill-how-patient-voices-shape-policy/

With the summer season around the corner, I’ve been hunting for PH-friendly recipes that don’t skimp on flavor.

I recently stumbled upon a Grilled Key West Chicken recipe from the Sodium Optional blog that looks perfect for the grill or air fryer.

I just picked up some coconut aminos to help cut back on sodium, but I’d love to learn…

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As we grow closer to the summer months, temperatures are quickly starting to rise into the upper 90s or higher. Looking back on my time with PH or even at my time post-transplant, I know just how quickly these higher temperatures can start to affect breathing, fatigue, daily activities, or even increase the concerns of skin cancer. 

With… Read more

Sweet Colleen, I cannot tell you how much your thoughtful and kind words warm my heart ♥️ and are so comforting. You’re right, you don’t have to be in the same room to feel the love – I certainly feel yours. Thank you Colleen 😊 you are a dear and very special woman. I am sending you warm hugs of thanks.

Hi @jen-cueva I think this is a really good question. I think this question is best answered by just doing whatever makes you the most comfortable. For example, in the past I have been fairly open to some research or clinical trials while others I have flat out turned out down. A great example of this is when I had PH where during this time I…

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Hi Colleen, I actually think this device could have great applications if successful for not just PH but also for other diseases or individuals suffering from similar symptoms. After taking a quick read through of the research study that this was on I discovered I learned a few things. These bracelets are put on at 2 weeks at a time and for…

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@JoliefromThePHlip-side I was not aware of the S.O.A.R Act! Thank you for bringing this to my attention and to others’. This is advocacy at its highest level.

@Tracey I hope you didn’t feel pressured into responding. I just want you to remember that no matter how long it’s been, you are always welcome to pop back into the forums. I had a feeling you were still going through a lot. I’m sure work contributes to the stress at times, but I hope it’s also a welcome distraction in some ways, just as…

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@Aunt Lizzie Gastrointestinal issues are no fun! It’s so disappointing how often side effects can ruin the potential of a new treatment. But on the bright side, one treatment for severe PH is truly amazing! May that continue for you!

@carol-volckmann I wish I could give you a hug! I am so sorry to hear about your sister. I am certain that knowing you are there to offer love and emotional support IS a help to her. You are a very comforting person, and people don’t need to be in the same room as you to feel that.

I’m sorry to hear that Dick’s walking is becoming a…

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I often think about your growing family, and I am so excited for all of you! What a blessed baby he will be!

Thank you @jen-cueva

@jen-cueva It sounds like KK’s maternal instincts have kicked in, and she is following in the footsteps of her great role models, you and Manny! A baby can certainly influence the dynamics. How is becoming a grandmother affecting you and your PH? I’m hoping it is having more of a positive effect than negative.

Hi @Colleen-Steele , thanks for revisiting this topic. You’re right, dynamics certainly do change over time.

I’ve noticed a shift in my family, especially with KK during her pregnancy. She’s taken on more of a protective role, often checking in on both me and Manny. While I’m sure her pregnancy has influenced this change, I also think it’s…

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Thanks for sharing this, Colleen. Marisa did a great job covering the highlights in this interesting article.

Like you, I don’t think a wrist sensor can replace the six-minute walk (6MW) test. However, I believe it could serve as a supplementary tool to provide a more comprehensive long-term record of physical activity in children.

You’ve hit on…

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Hi @Colleen-Steele , and forum members,

I have some other resources I’d like to share, but I’ll need a moment to go through my endless notes and find them.

In the meantime, everyone is welcome to contribute. You can also find several copay assistance links within the treatment topics in that subforum.

Hi @Colleen-Steele , apologies for my delayed response. You are so right, time is flying by! KK just started her bi-weekly doctor’s appointments, and we are all so excited and feel incredibly blessed. Our “Lil’ Dude” will be here before we know it!

I was just telling KK this week that I might need to join her for the Baby 101 class the…

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Hi @Aunt Lizzie , I’m sorry to hear you experienced gastro issues while trying the new treatment. It’s frustrating when side effects get in the way, but it sounds like a true blessing that your “unusual” self only needs one pill for your PH treatment. I’m right there with you in hoping it stays that way for a long, long time!🤗🤞

You’re so…

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Thinking of you this week, my dear PHriend, @carol-volckmann !🤗

I hope you’re doing okay. I was wondering how your visit with Dr. Leary went and if you have any updates you feel comfortable sharing.

How are Dick and Cloud doing? The three of you have been on my mind, so I just wanted to reach out and send my love.

Sending you an abundance…

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Oh my Tracy, you really have been on one heck of a Rollercoaster 🎢 😳. Glad to hear that the new valve is working 😊 that is very good news!

Trying to process everything you are going through at the same time building a new business model has to take so much of your energy and be so exhausting. I can understand trying to put this together…

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@Colleen sorry I kinda dropped off the radar. I wish I could say that I’m stable but I’ve just got a lot going on. Honestly I’ve been trying to hide for a while, I’m having a hard time processing. The new valve is in and seems to be working ok, but I’m still dealing with high pressures, a dodgy liver and even more dodgy kidneys. And I’m… Read more

@cullen-steele Hi Colleen, dose not surprise me at all that the Go-Bag you fixed for Cullen had all the essentials plus comfy items to make stays in the hospital just a wee bit more comfortable.

Thank you for asking, Dick’s balance issues are not getting any better and he does need to walk with his walking stick . Frustrating, but he keeps…

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@carol-volckmann we know all about the To-Go Bags. I made sure Cullen and I always had one in the car, packed with necessities and some comforting items that help make hospital stays more comfortable.

How are you and Dick doing?

@Tracey I’ve been worried about you. Do you have any updates for us?

@LisaMichele I was just thinking of you and wondering how you are doing. Can we offer our support/encouragement in any way?

It’s almost swimming season for many of us. How do you manage your oxygen so you can swim?

I think this is an important topic to revisit. It has been my experience that the family is constantly evolving once PH becomes a part of the dynamics. Everyone is aging, big life events happen, new jobs, new schools, new friends…so many things can be affected by PH.

How are you and your family doing? How have you evolved and how do you see…

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“Wrist sensors reveal physical activity gaps for children with PH in study,” by Marisa Wexler, MS, discusses how the findings may help develop metrics for use in clinical trials with kids.

At first, I felt annoyed because the findings seem to be stating the obvious: “Children with pulmonary hypertension (PH) engage in fewer and shorter… Read more

The lovely month of May is here! What is on your medical calendar? Do you have any appointments, procedures, treatments, or other experiences you would like to share with us so we can support you?

Whatever is on your calendar this month, I hope it includes some time for relaxation and/or fun. We would love to hear about those plans, too!

Colleen, Good Luck! You will most likely be inundated by responses! Thank you and be well.

Des