You are too sweet… I’m still trying figure it out! I’ll take it though. My pulm. doc prescribed Breo Ellipta which seems to have hit the off switch on my SOB, at least for now. 😊

I do know what SOB means … LOL, thanks to you!

@Des that is such great news! It can take time for medical results and how a patient is feeling to catch up with each other. I hope both keep going in the right direction for you!

Hello Colleen!

First of all, thank you for the list of abbreviations!! I may understand this “foreign” language using them.

Secondly, I used O2 for my first walk test about 6 months ago. The second was done without oxygen. I made it a little over 1100 feet. Between my 2 meds I seem to be doing better… or so I was told.

Have a lovely weekend.

Desiree P.

@Des another excellent question! I think most of us can relate to how confusing abbreviations can be when diagnosed with PH and learning about the disease. I laughed at your being thrown by SOB because that made me pause, too, the first time I heard it used!

This subject is important, and I will create a topic for it ASAP. In the meantime, here…

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@Des Good question! As far as I know from experience caring for my son, yes, patients should wear their oxygen for the 6-minute walk test at the prescribed rate they use daily. You are expected to carry or pull your own portable oxygen tank, and the flow rate is not usually changed during the test.

Has any of our members on prescribed oxygen have…

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@Des is a new member who informed me that she has been approved for a Co-Pay.org grant. Having been diagnosed only a few months ago, she thought it would be nice to put some resource information out for others. I thought her suggestion fits well with @jen-cueva post and column.

@Des can you share the process you went through to apply for…

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@cullen-steele good point! We always made your medication and medical supplies a priority to grab whenever you were going anywhere. Sometimes you would leave without”normal” necessities but those you could either “live” without or your loving mom would return home and grab them for you. 😆

@Steve Sallee Darn, there is always something, isn’t there, but stay on top of the skin cancer as you are, and put the rest of your energy into what you enjoy…like cars! Thank you for updating us. It’s good to hear how well you are doing and inspirational to those considering a transplant.

@Rivegauche610 a Good Friday miracle is very special! What a blessing! I am so happy for you! How are the injections going so far?

@jen-cueva you will blink, and July will be here! I’m so excited for you and the baby because between you and Manny, he is going to be the most loved and spoiled baby ever! Congratulations!

As a patient or an exhausted caregiver, do you ever catch yourself looking at healthy and/or seemingly carefree people with envy?

I would never wish ill will, especially PH, on anyone, but some days it’s hard not to resent how easily good health can be taken for granted.

I was once one of those people untouched by a life-altering illness, and I…

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Ever been hit with a case of sticker shock when paying for medical bills or everyday essentials? You’re not alone.

Last month , I shared some personal financial struggles and what I’m doing to stay afloat in my PH News column, “Do you find yourself going broke while managing PH? You’re not alone.”

Managing the cost of PH is a big… Read more

Are you currently in the process of being listed for an organ transplant, in the transplant process, or have already received an organ transplant? One of the most common issues patients encounter throughout their transplant journey is the cost of medication. 

Here is a resource that can compare medication prices and find verified… Read more

Thank you. It has been a rather challenging time, the PH having little to actually do with it. My wife of 15 years, and I are no longer together. I am not lonely because she herself is not here, but because now I am firmly in the old age phase of life with all its attendant problems of loneliness, encroaching infirmity (here’s where the PH… Read more

What a fantastic video from our very own Britt Foster, now Brittany Taylor! (Yes, she’s married now!) Many of you know how much Britt contributed to our forums, and this video is no exception.

Like Britt, I’ve learned that date nights don’t have to be big productions. I’ve written before about how to make them less physically demanding while…

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Hi @cullen-steele , Oh, I didn’t realize you weren’t aware of my past work as a nurse. Thank you for your kind words, that’s very sweet of you. I do miss nursing, but now I feel I can help others in a different, more supportive capacity.

And I’m a fan of both ER and Grey’s Anatomy as well! But as I mentioned to Kev, I agree they don’t always do…

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Great point, Kev! I’ve also noticed that movies often fail to humanize patients. Also, they sometimes trivialize the gravity of a rare disease diagnosis, treating it as if it were as common and manageable as a cold.

Hey PHriends,It’s the middle of the month, so let’s check in! How is everyone doing? Do you have any new or recent appointments you’d like to share updates on, or could you use some support from the group?

I had a routine dermatology appointment today, and thankfully, all went well! They froze a small spot on my wrist and sent a sample…

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Hey @cullen-steele , I believe we can all learn from each other’s experiences and discover how to offer better support. The sheer amount of preparation before a trip often leaves me feeling exhausted before I even depart. Can you or others relate?

Hi my dear PHriend, @carol-volckmann , How are you and Dick doing? And how’s your big guy, Mr. Cloud?

I’m so happy to know I could bring you a few smiles and positive thoughts. Your kind and thoughtful words really touched my heart.💜 We are all so over the moon with excitement!

I’ve been busy with KK, trying to manage my health and work a…

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Hi @cullen-steele , how are you doing? Did you recently enjoy some time off for Spring Break?

Thanks for your well wishes!

Hi @Rivegauche610 I was so sorry to hear about your difficulties with the VA and the loss of your Malamute. However, I’m incredibly grateful to know that Merck has granted you patient assistance. What a blessing!

Good luck with your new malamute. When do you think you’ll be taking that trip?

Considering everything on your plate recently, how…

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@Rivegauche610 I am so glad to hear this, this is amazing news! @Colleen-Steele and I were just talking the other week trying to brainstorm ideas on some solutions to your problem. I am happy to see that you were able to find some assistance with your medication. hopefully as you mentioned a year from now you won’t even need the medication anymore!

@carol-volckmann l I really like your suggestion of keeping a to go bag with you at all times. You never truly know when you are going to need even the simplest of supplies in a medical emergency. That being said, what kind of supplies do you keep packed in your to-go bag besides your medical supplies? Is there anything specific that you…

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Hello, PH community!

Check out this video we recently posted. If you have followed Brittany’s columns in the past, as well as interacted with her here, I am sure you will enjoy this one. Britt talks about having a social life with pulmonary hypertension, and how she conserves her energy for making time with family and friends.

It can… Read more

So much to think about with a chronic disease like PH. @cullen-steele, @Colleen and @jen-cueva @jen-cueva plan ahead. Researching hospitals, PH centers, having your meds with you always and I also have a “go bag” in the car of what I might need to be more comfortable in the ER and hospital. The meds are always in their prescription bottles,…

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Thank you for this, but something of a miracle happened on Good Friday. I learned Merck’s Patient Assistance Program had approved me for a free year of Sotatercept. It arrives tomorrow and I begin injecting it next week. Eventually I will stop Ambrisentan and then maybe also Tadalafil so as to eliminate the vexatious nasal congestion.

Hi @Rivegauche610 I am so sorry to hear about the complications you have been having with the VA. I know issues with insurance / the VA is one the most common issues that I hear about from patients whether it’s regarding PH or transplant.

I have a website that may be of assistance in helping you compare medication / prices and possibly find…

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Congratulations @jen-cueva You must be so excited! 💜

@Steve Sallee I wanted to congratulate you on your transplant anniversary! I know that my own transplant team has been after me about seeing a dermatologist so I feel that your update in a way is just another passive reminder of how I need to make that appointment. It’s wonderful to hear that despite the small bumps in the road you may be…

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@jen-cueva I was surprised to learn that you were a nurse! I am sure you made an amazing one! I agree with your comment regarding how shows like ER and Greys Anatomy aren’t the best at always depicting Chronic issues. While ER is still one of my favorite shows it can at times make these issues seem like they have quick and easy fixes.

@Anna…

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@jen-cueva these are all excellent examples of things to do especially when looking at longer trips. I know I do the same when I am traveling the first thing that I consider or research is the distance between me and the nearest hospital and whether or not they will be able to properly treat me if there is an emergency. I also like your tip…

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Thanks, Jen! Yes, it’s a great show. I hadn’t even watched any medical dramas previously. I especially like that they humanize the patients, and don’t merely describe their conditions.

Doing OK. One of the side effects of my anti-rejection meds is the small growths you get on your skin. Well, one of them became cancerous. They cut on me but didn’t get it all. I will be getting radiation after I heal up. There are always tradeoffs in life. But the benefits of my transplant outweigh all of it. I am in the process of…

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Oh my, oh Mimi what absolutely joyful news you bring on this beautiful Spring day! Wonderful news, wondrous gift Mimi and Papa and of course, KK. Thank you so much for sharing ❤️. Your grandson will bring you countess joy, laughter and so much love. New born Baby’s breath – there is nothing like it.

Our warmest wishes for you all and sending…

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Well, I was premature in February. My PH doc put in the demand (enough of this “requesting” with the VA here) in February but we misinterpreted the signals. The VA said no again, and I was all ready to appeal through formal channels with the backing and help of our VA patient advocate. In the meantime, after leaving me and the house last…

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I know it’s been a while since I’ve been active in the forums, my work with the Bionews advocacy team has kept me on my toes!

But I’ve missed this community so much and think of you all often. How is everyone doing? Can you believe it’s already April?!💜

I also have some incredibly exciting news to share…. I’m going to be a grandma (Mimi) in…

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What an interesting topic and a great conversation starter, @cullen-steele !

Managing a condition like PH involves navigating numerous factors that impact our lifestyle, and vice versa. Like you, I’ve found that travel requires significant advance planning. Before any trip, I research hospitals with dedicated PH centers. If none are available,…

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What’s on your April calendar? Are there any appointments, treatments, or maybe something new, you’re concerned about? How can we best support you? 

Whatever this month brings, you don’t have to go through it alone. We’re here to support each other every step of the way! 

Feel free to share what’s ahead for you or how you’re feeling as you…

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HI, @Reen312 , II’m Jen, one of the forum moderators, and I’ve been a PH patient for 21 years. You’ll see me here from time to time, along with Colleen and Cullen.

It must be incredibly frustrating for you and your husband, Bryan, to be going through this process to get his disability approved. I’m so sorry that you have to navigate all of…

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What an incredible piece from @Anna Jeter! Thanks for sharing this, Kev!

This is the third article I’ve read about the new show The Pitt, and it’s clear it’s hitting on topics other medical dramas haven’t dared to touch.

Like Anna, I binged medical dramas like Grey’s Anatomy and ER all through nursing school. Even now, I’ll catch a rerun, and…

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Hello, PH community!

I enjoyed this column by Anna Jeter. She writes about many of the frustrations she’s had with medical dramas in the past, and how they are often woefully inaccurate. As a patient with pulmonary hypertension, she stopped watching these shows for a long time because they tended to romanticize or dismiss the realities… Read more

Hi @Colleen-Steele , the experience you brought up is another great example. While on this topic I think another important topic or experience that many patients are likely to go through on a daily basis is how they prepare for their daily activities. For example, before I went anywhere whether it was school, shopping, to a friends house, or…

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How has living with PH affected the way that you set boundaries throughout your life? Do you find it difficult at times to set boundaries, whether it has to do with your medical or personal life? 

When living with something like PH, we can often forget to set our own personal boundaries. Whether it’s our own personal, professional, or… Read more

WOW! I had no idea how excruciating the disability appeal process can be! My anxiety level climbed just reading this, so I can only imagine what it has been like for both of you! I’m so sorry you are going through this @Reen312 ! If you don’t mind, please keep us updated because your experience might help someone else through theirs.

Has any of…

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Excellent topic, @cullen-steele .

Another example is when you were in grade school and we “tested” the hospital accross the street from your school to see how they would handle a minor situation. Not only were they overwhelmed with your IV Flolan but it was obvious they lacked knowledge about PH. We had a written letter signed by your PH…

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Living with a chronic illness like PH can control many aspects of your life in different ways. Whether it comes to how you plan for vacations, where you decide to work, what you eat, what hospitals you go to, or even where you decide to live. 

While these impacts can all be frustrating and at times upsetting, they are unfortunately all… Read more

Fortunately, it seems to be a pretty smooth ride at the moment regarding the Remodulin. I have done the mixing of the medication so many times now, I could probably do it blindfolded lol. We had to send in an appeal to the appeals council For disability, because the judge who made a decision on December 2nd 2025, made legal errors in his…

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