@carol-volckmann How are you feeling? Is your doctor trying anything new to help you?

@mikebennett Thank you for sharing your experience with Sotatercept and the decision you made regarding Remodulin. I appreciate that you pointed out that the effectiveness of any PH treatment, as well as its side effects, is different for everyone.

My son was on IV Flolanand triple oral therapy. He went through a period of doing very well and…

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I’m not sure this should be an either-or question. I was in a clinical trial for Sotatercept, so have been on it about 3 years now. I was on IV remodulin with sotatercept when I started, and was doing well. But for a lot of reasons (risk of infection, quality of life, etc.), I tapered off IV Remodulin. On Sotatercept alone (+ Ambrisentan…

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Thank you Cullen for your insights and support. Absolutely we need to just keep going.

You have gone through so much beginning at such a young age. You truly are an inspiration.

Thank you again for reaching out. Always my very best and warm wishes.

Hi @carol-volckmann , I am sorry to hear about the current struggles you are facing lately especially regarding your ability to breath. I know this can at times feel especially discouraging especially when it impacts our daily activities or other activities we enjoy doing.

With that being said as you mentioned the change of weather can often have…

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@carol-volckmann I am so sorry to hear that you have not been well. I’m sure the heat isn’t helping any! Lack of sleep is also a heavy brick to add to the pile of complications you are carrying. Is there anything I can do to help you?

My husband bought me a heated eye massager many Christmases ago. I thought he was crazy because it looked…

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@carol-volckmann Thank you for the update, although I wish it were better news! I am sharing it here to make sure all of our members find it.

Update from Carol: Hello Colleen, I have not been feeling great. My shortness of breath has gotten worse. Trying to do my daily walks is difficult in warm weather, so I don’t go as often nor as long.

I will…

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Have you used Amazon for prescriptions? If so, what was your experience?

Due to a change in insurance, using Amazon for prescriptions recently became an option for my son and me, but I declined. I especially had concerns about relying on them to fill and deliver specialty medications.

I have read reviews that justify my concerns, but what are…

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How is everyone doing this month? Have you had any appointments or one coming up that you would like to discuss?

Good question! @Debi How has your cardiac input been?

@Debi If you are going to be unique, not having symptoms is a wonderful way to be unique! Thank you so much for sharing your experience!

Welcome to July! I hope our Americans and Canadians enjoyed the 4th and Canada Day!

What is on your medical calendar this month? Is there anything coming up that you would like to discuss?

We are here to offer support!

Hello there Jen Cueva,

It has been a Minute! I am on Adempas, and Opsumit and just began to feel Sooo much better that I just got busy doing life and I forgot about the forum ….

So what brought me back? UPTRAVI has just been added to my list of prescription and I DONT like the side effects. So Back to google to find out info on it and the Forum…

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Debi,

I am on the exact same medication as you are. Have your doctors said anything about cardiac output since you started Winrevair?

Taking one day at a time. Feeling blessed to be seen out and about. Grandkids get most of my attention. I truly don’t have any reason to complain. I know that PH can dramatically affect my health at the drop of a hat, so, I try and keep a positive outlook. It isn’t always easy, but worth it!

I feel like an anomaly when addressing this question. I don’t get hot and I am constantly cold. It is in 80’s today in NE and I have on sweat pants and a sweat shirt. I am thinking the lowering of blood pressure due to meds may be contributing to this. So no need to manage hot summer months in fact I prefer it hot and humid.

Winrevair is a game changer. My therapies initially were ambrisentan and tadafil. On Winreair (also called Sotatercept) since July 2024. My original number for pulmonary pressure was 62. Recent test shows I am in a very normal range at 22 ! I had an intermittent test 6 months ago – I was at 32. This medication works to bring the…

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@cindy-bee That is fantastic news! I am so happy for you! Has this improvement increased your ability to be more active and if so, what have you been up to? Love hearing from you!

Hi everyone, you may have already received the invitation, but I wanted to let you know about a new group in the forums called PH Conversations!

This group exists to provide the PH community with a supportive place to connect, ask questions, and share experiences. There is no pressure to post, but I wanted you to know about this new space we…

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@Debra Gonzales How did those 2 appointments turn out? I hope you have been approved for the treatment that will help you the most! I hope you will share your experience with Gpl-1 over time. I really hope it has been approved and will help you!

Any of our other members have experience with Gpl-1?

@Jennifer Beaty thank you! It helps others when we share our experiences. 🙂

The Winrevair imust be working! My PA pressures from February 2025 were 57mmHg. I Started on Winrevair June 2025 and my PA pressures are down to 28. We cut my diuretics to half of what I was taking. I feel much better than I did this time last year. That is definitely a plus!

I’ve been taking Winrevair for about 6 months after taking Remodulin for 8 years. The only difference I can tell is that about a week before my shot is due, my breathing is a little more difficult. Otherwise, it’s working well for me. I am also taking Adempas.

I see my primary on the 24th. I want to discuss starting on a Gpl-1, now that medicare will cover it. I can afford the $50. I am hoping she will prescribe it. I am pre diabetic. I have read alot on how it can help with inflammation. I also have psoriatic arthritis and fibromyalgia. I have discussed it with my Pulmonologist and rheumatologist…

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Hello Colleen and Jen, sometimes as Jen said back in ’24, we just don’t know what we need, we are stuck and struggling.

We also live in a neighborhood that everyone looks after each other. Dick is 87 and I am 82 we are the seniors.

When I was struggling and Dick was also having a difficult time a neighbor texted me and said, “I just made a…

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Hi Cullen, all of the above. Your column is extremely useful and important. Making a list of your questions, bringing uptpdate medications and bringing a caregiver, family member or friend is crucial. Trying yo remember everything is nearly impossible. Bringing a note pad to write down your doctor’s reconmmends.

I also try and make the…

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Preparing for doctor’s appointments with pulmonary hypertension can be overwhelming. It can help to prepare in advance so you have a plan of what you want to discuss upon going into your appointment.

 

There can be many different ways for PH patients to prepare for their doctor’s appointment. One helpful strategy is to make a list of details…

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@Debby I’m sharing your update here and hope others on Winrevair will share their experience with you.

Began with Tadalafil 5 years ago when diagnosed with PAH. (Previously I was being treated for heart disease having had a stent, valve replacement, and pacemaker.)Currently am taking Opsinvy, Spironolactone, but also Eliquis and Furosemide…

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I currently take Letairis, Tadalafil, Spironolactone and have been for 12 years. My doctor decided to add Winrevair to my regiment because I had been feeling more short of breath, and fatigue I could not shake, plus the usual PH symptoms. My RHC also showed my PA pressures were at 57mmHG.

I am hopeful my PA pressures have declined. I do not…

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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?