New to the Group

[Roger Bliss]

Welcome to the forum. There is lots of good info on here as well as support. Don’t worry about meds that don’t work. I have had 4 or 5 that didn’t work, including Tyvaso……they made me worse. Right now the only PH med I am on is tadalafil.

I too miss some of the stuff used to do. I try to appreciate what I can do. There are millions of people n much worse shape than me…..many are kids. A positive attitude and keeping busy is what keeps me going.

[jen-cueva]

Well said, @Roger Bliss! And you share how you keep busy and keep a positive attitude; that is so true of you! But it’s also a great mindset to remind others that we should be grateful for what we can do; many are worse off than we are. As Roger mentions, I, too, think about the little ones who struggle daily with PH. Although they are some of the most resilient, my heart aches for them.

How’s your summer going, Roger? How’s ME? Take care of each other!

[Roger Bliss]

Jen

We are having a GREAT summer. I am feeling better than I have in years. Been real busy at work. I seem to feel my best driving around in circles in my dump truck. ME is very busy with gardening. She has a green house, garden and flower beds. Had to build an enclosure around the garden to keep the moose out. What they don’t eat they stomp on.😉

Granddaughter got here last night and the rest of my sons family will be here next week. Gonna have company till the 2nd week in August……life is good.

I hope you are doing better. Last I remember you were going through a rough time.

[jen-cueva]

Hi, @Roger Bliss. It sounds like a beautiful summer, and I’m happy to hear it! Wow, I love that Mary Ellen is busy gardening. I grew up around gardens in the summer, so I miss that. Those darn moose, they know what’s good, too.

Enjoy your time with your granddaughter and the rest of your son’s family as they arrive. It’s so cool that they can visit sometime during the summer.

I am doing better, thanks. I am hoping to avoid so many doctor appointments, too. But improving labs helps, so I’m getting there. Thanks so much for your concern; it means a ton. You’re so thoughtful. Enjoy your time and eat some fresh veggies from that garden for me.

Take care and enjoy family time.

[Lynda]

Hello Colleen,

My name is Lynda and I live in Texas today I celebrate my 60th Birthday and to be honest 2 1/2 years ago when I was diagnosed with PAH we really didn’t think I would see my 60th Bday. At the time I was in heart failure required 6 l of O2 to complete a 6 min walk test. I have never been on the meds you are on, I have been on Opsumit, Tadalafil, Lasix and Nifedipine. Today for my 60th birthday I walked on a treadmill for 1 mile without oxygen and without my heart rate getting above 100. For me it is very important to have close friends and family for support and my belief that GOD’S got this!

[jen-cueva]

Wow, Happy 60th birthday, @Lynda! What a blessing!

I LOVE your share about when you were diagnosed and are now on medications and how great you did on that treadmill—without O2 and keeping your heart rate under 100!🙏🎂

I would agree a strong support system like close family and friends, along with faith, are all important and help me to manage my PH daily.

Thanks for sharing, Lynda, and I wish you many more birthday celebrations. I began calling my birthdays “bonus” birthdays because when diagnosed in 2005, who would have thought? Thanks to God, my care team, and researchers!

Did you have a big celebration for your 60th?

[Roger Bliss]

Happy Birthday!!

[Col]

Dear Roger and Lynda, thank you for responding to my introduction. You have no idea how amazing it is to hear others accounts of what they have been through. Both of you are very special; understanding and sharing your support! Just to know there are beautiful and supportive people like each of you warms my heart in a way that I haven’t felt in years. God Bless you both.

Roger, your understanding of not tolerating meds and Lynda, your incredible story of making it to your 60th birthday…..both of you have made my month in your support and understanding.

Thank you from the depth of my heart. 💖💖

[Col]

I would love to hear more about each of you. To the degree of what you are comfortable sharing. I am a type A personality and I managed 3 offices of a bank before my diagnosis. I traveled for work between offices and met amazing people and worked 50+ hours a week. I thought I had it all figured out. I was engaged to an amazing man. But once the voracity of PAH showed itself; multiple hospital stays, the doctors prognosis in January of a 50/50 survival rate for the next 6 months, things fell apart. My friends of 20+ years couldn’t handle mortality talks; my engagement ended after he told me honestly he couldn’t handle what was happening.

Things are looking better now but I miss people, I miss so many pieces, but then I feel extreme guilt because I have the greatest doctors and my Mom; who has supported me in every aspect.

I’m sorry if I’m unloading; I’m so excited to learn more about each of you and how I can support both of you through your PAH journies.

Thanks for listening….

[jen-cueva]

Hi @Col, I’m also a type A personality and worked in nursing before my PH diagnosis in 2005! Like you, I miss my old self, work, and friends. But, I’m grateful that in this new journey, I’ve found new friends who can relate, who understand, and who’ve been in similar situations with PH or another chronic or rare disease.

I’m saddened by what you’ve experienced thus far, but grateful things are looking up for you. You should know that a great knowledge PH team and a strong supporter, like your mom, helps. I’m married with a young adult daughter. PH changes our relationships and family dynamics. But you can get through this with a little help.

It sounds like you are trying to reach out for support, which is incredible and often the toughest part of this new journey. If you ever wnat to chat, we are here.

[Roger Bliss]

Col

I am willing to share my background. I am open to any questions. I got a personality…..just don’t know what type I am??😇

We lived above the arctic circle here in Alaska teaching in a couple Eskimo villages and living the subsistence life style…..hunting and fishing for food. We were 800 miles from the nearest road. I got involved in dog mushing out there and liked it better than teaching. Became a professional dog musher…… owned a tour company and took tourists back in Denali Park on 2 and 3 day dog mushing trips for many years. Even ran the Iditarod a couple times. Needless to say I was in top physical condition back then.

Today I would be lucky to harness up a dog, let alone run a team. I am grateful for what I had and enjoy the memories and pictures from that time.

For the last 26 years have spent running around in circles in my dump truck (had PH for about 8 years) and am still doing it at 70 with PH and cancer. My truck is just a giant pickup and is easy to drive. When I get stuck, the younger guys on the job jump into action. They wrestle chains around and hook me up to a dozer to get pulled out. They all know about my PH. Actually most people are amazed that I have PH and cancer and keep on going. The neighbor kid comes over and helps me service my truck…..grease, oil change and wash. I have figured out ways to get around my limitations. You should be able to do it too.

I am big on testing my limits. Go as far as you can go, then next time try and go a little farther.

I will admit you younger people have it rougher than me. Being an “old fart” strangers just chalk me up to old age.

[Col]

I also have a question for each of you if you wouldn’t mind answering. How have each of you dealt with physical limitations and the frustration and guilt that goes along with it? Or did you each not feel this way?

[jen-cueva]

Hi @Col, I’m sorry you are struggling with the guilt of your physical limitations. After almost 0 years,m I sometimes struggle with this. It depends on the day. I know that therapy has been a great help in finding ways to cope when this occurs.

I make a to-do list of three tasks(I do go over some) at most each day. Because I’m a Type A personality, I need to feel productive every day. But I’ve had days when, if I don’t check my tasks off, I am OK with it. Other days, I am dead set on getting things done.

You’ll find my most recent column, published today, helpful. I’ll share it below.

https://pulmonaryhypertensionnews.com/columns/letting-go-control-challenging-life-rare-disease/

As you read, you’ll learn that this is an ongoing battle with me, and I’m continuously working on coping. Hugs to you, my PHriend! And know you are not alone. Some days may be worse than others. 🤗

pulmonaryhypertensionnews.com

Letting go of control is challenging in life with a rare disease

Columnist Jen Cueva likes to take charge of her life, but the unpredictability of PH forces her to practice letting go of control.

[jen-cueva]

Hi @Col, Thanks for sharing some info about yourself. Yes, many feel isolated and lonely after a newer PH diagnosis. But now you’ve come to the right place, where you can feel support. We’ve been there and know this feeling too well.

As you experienced and described so well, it’s often a rollercoaster. I’m sorry to hear how you reacted, Tyvaso. I hope that Winrevair will work better for you. But I’m grateful for your fur baby and best friend.

Yes, I also have days where I miss my life pre-PH, even though it’s been almost 20 years for me. I’m grateful to do some work at home and help others by sharing my experiences with PH, offering hope, and advocating for PH and rare diseases.

To learn more about others, look through the Introduce Yourself forums, where others share more about themselves. You can also reply to and comment on those if you like. We are happy you are here and grateful to support you. Your questions and contributions so far are amazing!

[Col]

Dear Jen, All I can say is Wow! I’m so thrilled that I reached out! Thank you for sharing your experiences with navigating PAH; it seems a positive attitude is a must! 😊Thank you so much for sharing your ideas to manage type A personalities a little better,lol.

And you couldn’t be more correct; we are all very lucky to have what we have and when I think of people who have been impacted by so many diagnoses that are worse, I recognize how blessed I am.

Then you for the link; I’m so excited to read it!

I can’t even begin to explain how much it means that the 3 of you reached out so quickly! My thank yous could never express my complete gratitude and excitement at making new connections.

You all are amazing people!

Thank you all so much from the bottom of my heart!❤️

Please take the best care everyone!

Colleen

[jen-cueva]

Oh, @Col, I hope to help others, so it’s a pleasure to assist when possible. I find others want to know they are not alone, and that’s true; we aren’t. We all have dark seasons, but it is much better when we know others have been there and made it through. Plus, I continue to learn from you all, even after almost 20 years with PH. So, thank you for taking the time to open up and share some about yourself and what you are currently struggling with.

Together, we PHight stronger! I hope you enjoy that new column piece.

Take care, and know we are almost through yet another week! 🤗

[Colleen]

@Col it is our pleasure to welcome you and see you engaging in the forums right away.

BTW- we not only share a first name but my grandmother’s maiden name was Mcgarrity and I’m from South Jersey!

I look forward to getting to know more about you and your PH journey.

[carol-volckmann]

Hi @col I just saw your post and also want to welcome you. This forum has been so supportive for me and so many others. You are not alone. A huge step was the fact that you reached out!!

Yes, your life has changed but you can still reach out to others, join groups that your interested in – it could be book clubs, art courses just something that interests you.

One of the difficulties with this disease it others think you look great and do not understand. I made the mistake of confronting an individual for parking in a handicap spot when he told me he had PH. It reminding me how others may see me. I’ll never make that istake again!

I also found some friends who just could not understand, I do not see them much anymore, others that are willing to listen, help when I need it and are supportive stay close friends. This includes some family members- that hurts but I cannot change them.

I wish you all the success on this new med. I wish in the future I will be able to be on it as well.

Sending you lots of positive thoughts, lots of laughter and joy, keep on moving. 😊🤗

[jen-cueva]

Hi, my sweet PHriend, @Carol Volckmann , I just wanted to say thanks for the lovely welcoming message you shared with @col. I know she too, will appreciate your thoughtful words and support. 🤗

[carol-volckmann]

One more comment Colleen… give Halah a bug HUG 🐕 he will be right beside you!!

[Col]

Good Morning Everyone! I just wanted to thank each and every one of you for the incredible welcomes! All of you are so beautiful, brave, and absolutely amazing!

I’m sorry I haven’t written back sooner; lately I have really been in a dark place that seems all encompassing at times. This is when I go into my self isolation time because I don’t want to come across as ungrateful or say the wrong thing. But the fact that each of you took the time to welcome me means so much! I hope all of you are doing well and again, my sincerest thanks for all that each if you have said and for the encouragement!

[carol-volckmann]

Good morning Col, so glad you reached out. It seems those dark places show up sometimes and we shut down. I believe the important thing is knowing we will get through the dark times and we will keep learning what coping exercises work to bring us back into the light.

I am so sorry to hear some of your friends of 20+ years are unable to cope with your health issues and that your engagement was broken off because he was unable to handle it. I would thank him for his honesty and feel thankful that he is no longer in the picture as you need people who love you and are able to support you.

You have so much to live for and so much to give even with limitations, you can fill your heart with interests that are meaningful. When you get down, please don’t feel guilty about it – pass through it and hold that beautiful fur child 🐶 close and feel the unconditional love ❤️.

[Colleen]

@Col I’m sure you are quickly realizing that the forums is where you can share anything that is on your mind and you will never be judged for it. Many of us are familiar with that dark place and come here to find light again. I hope you will continue to do so too!

[Col]

Dear Carol, Then you so much for recognizing where I was at and giving me such great advice! You are truly so beautiful, resilient and I’m so grateful to you.

Sometimes it’s difficult for me to share and the fact that you know and understand means the world to me!

How are you doing, Carol?💗🏵🌸🌼

[carol-volckmann]

Dear sweet Col, you have been through so much dealing with PH, friends, family and dealing with limitations. Just remember, Type A person, you are so strong and knowing you will deal with whatever comes your way.

Thank you for asking, I am doing okay. Many appointments ahead for more answers and questions along with joys of projects I love, being with those friends who do understand 🙂 getting together for early dinners ’cause I tire early. And enjoying our fur child about to turn 2 – he is lovable, a clown and melts your heart.

Please be kind to yourself. Sending you warm hugs 🤗, positive energy and joy! 🐕💐🌹🌻❤️,

[Colleen]

@carol-volckmann thank you for always being that candle in the window for any of us who are struggling.❤

[carol-volckmann]

@Colleen Thank you Colleen for such a beautiful image ‘candle in the window’. I think of you and Jen who reach out and touch us all with your uncondional love and support.

Many times I wish you were still in WA so we would be able to meet in person. At the same time I know how important it is for you to be back near your parents and also enjoying the New Jersey shore!

Be well my friend, and do take care of yourself – you are in my thoughts and prayers with love ❤️.

[Col]

Dear Carol, thank you so much for your incredible support and the kindest words. I’ve never felt this supported and I hold you dearly in my heart.

I know what doing just okay is and I just wish you peace, serenity and great days ahead.

You are truly a delight and an awesome woman!🌼🌸🏵🫂💗

[Col]

Dear Colleen, I saw your message but I haven’t figured out this website yet,lol! Can you tell me how I can message just one person? I think I’m a little technologically challened,lol!

And my sincerest thanks to you as well. The strength you carry, the devotion you give as a caregiver through this journey is utterly remarkable! You are a gem!🫂💖💎

[jen-cueva]

Hi @Col, Are you trying to send a private message to someone or tag them in a post? If you want to send a private message to someone, you can click on the member’s name or picture and then click “message” on their page. You can also access your messages by clicking on the box icon in the screenshot I provided and following the circled area at the top. It goes to messages, and you can also start typing a name; it should self-populate so you can click the person and send a message.

I’ll send you a test message to see if you receive it.

[Col]

Thank you, Jen! I received your private message but it says I’m restricted from responding to you. I’m not sure what I’m doing wrong, lol. Like, I said; I’m technologically challenged, lol!🤣

[Col]

Hi Colleen, I received your private message but it says I am restricted from replying. Do you know how I can get around this? Sorry I’m not so great with new tech stuff, lol!🤣

[Col]

Hi Jen and Colleen, could we do a forum on the financial burden that PAH puts on the patient and caregiver when we are unable to work? I would love to hear how each of you deal with this and if it impacts anyone else besides me. What do you think?

[jen-cueva]

Hi @Col, you are right; we all try to manage the incredibly high costs of managing PH while unable to work full-time. Caregivers are often left carrying the burdens, and I am always one to share how fortunate I am that my hubby carries the insurance, but he also carries that burden on his shoulders.

Although we have discussed the financial burden of having or caring for someone with PH many times, we don’t yet have that specific area to share those. But for me, I often share them under the challenges of PH and the treatment of PH. I’ll look at some of those tomorrow and see if I can tag you in on some of them.

When we add forum subforums, we have commented that they will be helpful in the future. But we can also link to PHA’s top financial resources now. I’ll do that below. I made that note to remind you to look for those topics tomorrow on the forums.

https://phassociation.org/patients/insurance-and-treatment-access/financialassist/

phassociation.org

Financial Assistance - Pulmonary Hypertension Association

Español FINANCIAL ASSISTANCEWith or without insurance, pulmonary hypertension treatments can be costly. If you need help covering the co-pay for your pulmonary hypertension therapy, you might want to take some or all of the following steps. This list represents resources … Continue reading

[Col]

Then you Jen, I received your message and replied back! You are the best!💖🫂

[jen-cueva]

Thanks @Col, you are pretty special, yourself, my PHriend.🤗

[jen-cueva]

Hey @Col , it’s been quite a while since I’ve heard from you. How are you managing in 2025 thus far? How’s your PH symptoms? Are you still on Winrevair? Do you notice any improvement at all?

How was your holiday season? I know you were struggling for a bit mentally, is that better? How is your therapy going?

Just wanted to let you know I’m thinking about you. Feel free to post an update when you are ready. 🤗

[Colleen]

@Col I have been thinking of you as well. How are you doing? Can we support you in some way?

[jen-cueva]

Hi @Col , I emailed you last month and no response. Are you doing OK, my PHriend? I know you were having a difficult time mentally and financially when we last connected.

Thanks @Colleen for reading my mind this week by checking on several forum members.