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

I have started a topic on this… Do you find medical abbreviations confusing?

@jen-cueva Thank you for sharing this!

If any of our members reaches out to this resource please share your experience in contacting them and if they were able to help you.

There is a lot to learn when diagnosed with pulmonary hypertension (PH), and medical abbreviations don’t make it any easier. Long-term patients might forget how confusing abbreviations such as 6MW, PFT, RHC, or, on a funny note, SOB, can be.

A newly diagnosed forum member brought this to my attention and inspired this topic for conversation… Read more

No, one drug trial was enough for me. Side effects from participating but briefly has left me with insidious gastro problems. But then I’m extremely lucky, while originally diagnosed and still have ‘serious’ PH, I get by with only one drug, ambrisentan 10mg. Doc says I am unusual. Yeah. Let’s keep it that way. I do feel for you guys fighting…

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@jen.cueva@bionews.com Hi Jen. Yes, I would be interested in this trial as an add on therapy.

Right now I am on trespostinol IV Hickman line continously 24 hrs,, Latiris and Ambersentin both oral pills. My PH is pretty stable so as an added medication would be good.

I will be seeing Dr Leary this coming Tuesday and plan to talk with him after…

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Hey @Colleen and forum members, I did want to share a link that I recently learned about from the American Lung Association. I’ll share the link with you all below and hope that maybe one of the resources will benefit at least one person in the forums.

https://www.lung.org/help-support/financial-assistance-programs

A new clinical trial is testing a potential add-on therapy, ROC-101, for people with PH. It’s bringing both hope and important questions.

Here are a few of the highlights I took from the article, titled “Trial testing safety, effectiveness of add-on PH treatment kicks off”.

• ROC-101 is an add-on therapy designed to work with your…

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Hi Cullen, I tried to log on and answer your questions but my posts never went thru, so … I will try again.

Hospital stays as you know are pretty uncomfortable. I try and bring in my to-go bag which stays in the car – a small comfy hospital gown, charges for my devices, my kindle, slippers, bath-robe, toiletries, moisturizer, a list of my…

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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