How is your week going?

[jen-cueva]

Hi, @Colleen , like minds- as I was about to post a weekly check-in! Again, I can’t tell you how much I’ve appreciated you caring for everyone here as my hand/wrist heals. I’m thrilled to be back with you all and without a cast!

Congrats on the positive appointments for Cullen last week! I hope and pray that he continues to be stable. But also a huge round of applause as he is already done with his Junior year at college! Time flies- although I know Cullen may disagree! Having him home all summer will be nice and also a big help! Do you or he have any plans for the summer?

Yes, you recently hit the 2-year mark without Brian, and having such a big anniversary around the same time must have been difficult for you. Keeping you close in my heart and prayers, my dear PHriend!

[Colleen]

Thank you as always for the kind thoughts and words @jen-cueva ! You and I make a good team, as Brian would say. Thank you for caring for everyone here while I’ve been out sick.

As Jen knows, I caught something, not Covid, but even though it’s May, I believe it was/is the flu. It took me a week to feel better but I have a cough that sometimes feels like it’s getting worse instead of better, and now Cullen has come down with it. So far it doesn’t seem like he has it as bad as I did and I’m praying that continues to be the case!

How is your wrist doing, Jen?

[jen-cueva]

Aww, your comment from Brian about us making a good team made me smile big, @Colleen .🤗 I’m grateful you are feeling better, except for that lingering cough. But so worried about Cullen now, hope and pray he is over it soon, too. I know he just came home for summer, so being sick is never good, but over summer break and when he’s been doing so well, I worry. Please keep us posted.

Have your parents been OK and not caught it? Hopefully neither of them catch it, now.

Do you all have any plans in Jersey for the Memorial Day weekend? What did you enjoy as a child most summers along the jersey shores? Was it always a beach time or more BBQ at home?

Thanks for the update and as always, we look out for one another!

[Colleen]

@jen-cueva and forum members, I’m sorry for being absent a lot this week. I thought I was on the mend when my fever broke, but the cough got worse. Monday will be the start of week 3, and the earliest my doctor can see me is Wednesday. I’m hoping I will improve by then and can cancel the appointment.

Cullen is sick but so far not as bad as I have been. I actually think my dad started this because he had a slight cough first. Thank God his never got bad and my mom, knock wood, has been fine so far. I have done my best to stay clear of them and when I have to be near them I’ve worn a mask and washed my hands a lot.

No plans for the weekend. What about you?

[jen-cueva]

Oh darn, @Colleen – I’m so sorry, my sweet FWW and friend! It seems you can’t catch a break lately. Like @carol-volckmann , my heart aches. I’m sending you extra gentle love, hugs, positive thoughts, and prayers that you are feeling much better by Wednesday!

It sucks that Cullen has caught it, too, but I’m thankful it’sn’t as bad. Hopefully, it resolves quickly for him, too. What can we do to help support you and your family?

Please don’t worry about the forums. Our members are so supportive and communicate with each other, too. Take all the time you need to rest, drink fluids, eat, and take medications. Listen to “Dr.” Cullen!😘🙏

[carol-volckmann]

Hello sweet @Colleen , yes, you certainly have been on a roll coaster of emotions. My heart aches for you.<div>

Brian will always be with you cheering you on, encouraging you, supporting you every step. It has to be so very tough for you. I wish I could push the clouds away and let the sunshine warm your heart with the wonderful memories that you will always have to hold on to.

I am thrilled to hear Cullen’s accomplishments finishing his junior year! He has fought so hard, endured so much. Taking the summer off will be so good for him – spending time with Brian’s parents, going to the shore with you all this will energize his soul and yours too having him so close.

Will you be seeing Aiden this summer? I hope you all will be able to get together this summer and have some play time at the shore!

I pray for you Colleen and want to surround you with warm hugs filled with love ❤️.

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[Colleen]

@carol-volckmann You and @jen-cueva have a gift for making people feel better with your words and compassionate nature. Thank you!

I don’t know if I will get to see Aidan this summer. He was promoted and summer is the busiest time for roofing. I would like to go to WA for a week to visit him and friends but I think leaving Cullen with my parents to care for on his own would be asking too much.

Do you have any plans for the summer?

[jen-cueva]

Hi @Colleen , you are so very kind. I’m here to offer you the care and support you need as you recover from this flu or whatever else might be troubling you. You always show compassion and kindness to all, so we want to do the same to you.

Aidan is an impressive young man, especially given his achievements at a young age! I’m sure you’re incredibly proud of him as well. Perhaps once the busy summer season winds down, he could NJ or something. You and Brian have done an outstanding job raising these two remarkable young men: well done!💜

Rest and hope you can begin to feel better over the Memroial Day weekend!🙏

[jen-cueva]

@carol-volckmann Your kind and encouraging words to Colleen truly made my day. They radiated warmth, like sunshine, helping to speed up Colleen’s recovery.🌞

Thank you, dear PHriend. I’m thinking of you, Dick, and Cloud, and sending extra love and hugs your way for a peaceful and relaxing Memorial Day weekend. Do you have any special plans?💜

[carol-volckmann]

Colleen you must be so proud of Aiden! He is doing so well, enjoying his work (I hope?), and a promotion!!

Watching after your Mom and Dad may be something Cullen would be happy to do. Have you asked him what he feels?

Collen if you came back to WA for a visit, I would love to see you. However, if your time is short you do not want to load up your plate overflowing and be exhausted 😴.

Our plans for the weekend is pretty much stay away from the roads, work a bit in the garden and on Monday put our flag out in honor of those who have fallen fighting for this country. After Monday bring our flag back in as we are not very proud of the direction this country has taken.

I hope you and Cullen make it to the shore and feel the wet sand between your toes – let your shoulders relax and just breath in that Atlantic Coast air! We do miss the Atlantic sea air.

Loving hugs and thank you for being the caring person you are – you always put a smile in my heart ❤️.

[carol-volckmann]

Hi sweet friend @jen-cueva Thank you for the extra love and hugs. Dick, Cloud and myself love ❤️ them!!<div>

A quiet weekend for us, a little garden work, walks with Cloud and put out our flag to remember those who have fallen serving thus country – bringing it back in on Tuesday ’cause not very proud of what our country has become 😢.

We three are well and enjoying our Spring. Please tell me you and Manny are going to take it easy, cuddle up and stay out of the hot sun!

Sending you 💓 lots of love, positive vibes and hugs – thinking of you in your favorite PJs…. hehe.

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[jen-cueva]

Hi sweet PHriend, @carol-volckmann , iIt sounds like you, Dick, and Cloud had a wonderful and relaxing Memorial Day weekend! On my end, I spent a few hours on Saturday with Manny at a Veterans’ fundraiser, followed by some beach time on Sunday. The sunshine and cool ocean breeze provided the perfect reset—thank you for asking!

As I write this, I’m sitting outside on my patio in my swing chair, soaking in the fresh air and warm sunshine. The gentle melodies of my wind chime occasionally drift through the breeze, creating such a peaceful moment.💜🌞

[Teri]

Hello! I’ve been a silent follower of PH News since 2021 and feel like a guilty stalker for news, fixes and support. So, I’d love to be more of a present contributor and not just a taker!

I was diagnosed with Limited Scleroderma and PAH in 2010, with no recommended treatment plan until 2015 when everything went south! Have a wonderful team of Drs. at UCHealth Anschutz Medical Center in Denver CO and have been on meds for PAH,(Letaris, Adcirca) PVOD,(Uptravi) ILD,(Rituximab infusions), Right heart failure, (Diruetics) and have just started Soltatercept/Winrevair injections in March @45mg. for the infamous new 4th Pathogen! Oxygen 24/7 has been my best friend and sidekick since 2015 and I’m currently at 10-15 ml per exertion and 8ml rest.

So I am curious about side effects of Winrevair…I don’t know if my side effects are from a Flu virus that took me out for the month of April and now most of May. I can relate to the Flu bug that you and your son are coping with Colleen. The cough lasted 4 weeks, but it’s been the nasal congestion, nose bleeds and extreme muscle/joint and fatigue that have zapped by ability to function daily.

In everything I’ve read and been told by Drs’.; Nose Bleeds, Headaches and low platelets are most common SE. I already have telangiectasia all over my hands, torso, and face and since my stomach, esophagus and lungs are bearing the brunt of the scleroderma in my hardening organ vessels, I haven’t noticed any bleeding to speak of. Yaaaay! The joint and muscle pain are horrible. I’m a busy 68 year with a fun Online Cookie Decorating business and don’t do well with being slowed down. My Faith in God’s plan and zest for living is strong.

The other great news is that since I’ve now had 5 Winrevair injections of 0.3-0.7 ml., I’m able to maintain my 02 at 8ml. while driving and buzzing around my office. I’m noticing definite hope…but if it is at the loss of QOL daily function…I’m really stumped. I’m hoping the Flu caused a flare in autoimmune response for my body/joint and fatigue instead of the Winrevair. Any thoughts or testimonials?

Tweet Blessings!

Teri

[jen-cueva]

Hi @Teri Lewis , Are we connected on Instagram, by any chance? I know someone who decorates cookies and runs an online shop. My memory isn’t the best, so I apologize in advance if I’ve forgotten!

As you know, managing multiple coexisting conditions alongside PH can be incredibly challenging, especially when you’re trying to figure out if something is a side effect of treatment or related to another health condition. I wish I could offer you clearer answers, but unfortunately, it often comes down to trial and error. Please know that you’re not alone in this, and it’s not unusual to feel overwhelmed by these struggles.

Have you had a chance to discuss these concerns with your medical team, particularly your PH specialists? What do they think about your symptoms? I imagine it must be frustrating to deal with a flare-up of your autoimmune condition on top of everything else. It can feel like solving a complex puzzle. Have you tried anything yet to determine if these issues might be side effects of your Winrevair or another medication?

I’m so glad to hear you want to be more active here. I’m confident you’ll find plenty of support and valuable insights from our incredible forum members. You’ve got a supportive community here, and we’re all rooting for you, my dear PHriend!

[Colleen]

@Teri Lewis Thank you for being a faithful, silent follower. I’m so happy to hear an update from you! Participation is appreciated but not a requirement to be a forum member. We are here to help, and if being behind the scenes and reading is all that someone needs or feels comfortable doing, that is 100% acceptable!

I can’t speak on Winrevair because my son was never on it, but he was prone to nose bleeds. Yes, they can be a side effect from treatments but they can also be a symptom of PH. Sometime the two collide just to make our lives more complicated.

So sorry to hear you have had flu like symptoms too! I am finally over the flu and went right into allergies…tickle in my throat, occasionally sneezing fits, watery eyes. Are you starting to feel any relief?

[carol-volckmann]

Hello @Teri having multiple medical complications has it added challenges as @jen-cueva popted. Jen’s suggestions of reaching out to your team to begin to get a handle on what symptoms and which condition/medication could be a cause is so important.

I was diagnosed with PAH 19 years ago caused by Sclaraderma. I have been on most of the same meds you are on but unable to be on Weinvier because of a low platelets.

My PAH has been stable but the Sclaraderma certainly seems to set me back. I do have part of my team an excellent Rheumatologist who tries to lessen the on going trials of this disease but it is a tough battle. My heart goes out to you – keep the faith! I am now 81 and plan to keep going.

I know it is hard sometimes to get through it all, but with your team working with you , you stay on top of it.

Keep going Teri and never be afraid to ask all your question! Sending warm hugs and positive vibes.

[Randolph]

I attended a Zoom meeting with other PH people. 21 of us, 3 males. I learned that I was one of the rare people on Remodulin. CETPH. Colleen you have endured most issues. If Cullen just completed his second year that is quite an accomplishment for what he has been through. Where I am living there are so many widows. How they cope so well, like you they keep on.

All the people with our health burdens are living admirable lives. Corageous perhaps? Since my return from the hospital and my near death issues it is clear to me that prayer has played the key role in my recovery process.

[jen-cueva]

Hi @Randolph Reynolds It’s wonderful to hear from you again! It sounds like you gained some valuable insight during your recent Zoom call. Was that one of PHA’s routine CTEPH calls? A group of 21 participants is impressive. What a great turnout! Besides offering support to one another, what was the main topic discussed?

Your kind words to @Colleen are so heartfelt and authentic. She’s such an inspiration, and what a proud moment for Cullen to complete another year of college; such an incredible achievement!

Faith and prayer, as you mentioned, are also what keep me grounded and moving forward. I truly admire your courage and the honesty with which you share your experience, it’s both inspiring and uplifting.

What’s next for you in terms of appointments or plans?

[Colleen]

@Randolph Reynolds, I am so grateful you have taken a moment to update us because you have been on my mind and in my prayers! You have been through a lot as well and should consider yourself courageous, too!

Cullen just completed his Junior year of college and in August will celebrate 11 years post-transplant. My husband has been gone 2 years now. We still miss him like crazy but he would be proud to see how well his son’s are doing. Thank you for thinking of us.

Cullen was on Flolan all 6 years of his PH journey. Flolan was starting to get replaced more and more with IV Remodulin. He was one of the few that we knew still on it when it came time for his transplant. It had worked well for him and we were use to the routine so we decided to stick with what was working and not switch to remodulin. But if his heart and lungs and lasted longer it’s possible he might have eventually tried a newer treatment.

How are you feeling? How is your wife?

[carol-volckmann]

Hi @Randolph i just saw your post and wanted to sharecwith you I have been on Remodulin for 19 years along with Letaris and Addcirca. Remodulin has been a life saver for me to keep my PAH stable.

You have been through the wringer, but keep the faith, keep going and feel the warmth surround you. Positive energy and keep reaching out for support.

You are in my prayers, thoughts and sending warm hugs 😊❤️.

[jen-cueva]

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 late July! My daughter, KK, is expecting a baby boy! I couldn’t wait to share this amazing news with all of you, as I know how thrilled you’ll be. It still feels so surreal!🙏

That’s my big win!💙 What’s yours?

[carol-volckmann]

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 you hugs filed with love ❤️.

[jen-cueva]

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 little, but I definitely owe you a proper catch-up soon. Sending all three of you lots of hugs, positive thoughts, and prayers.🤗

[cullen-steele]

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

[jen-cueva]

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

Thanks for your well wishes!

[Colleen]

@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!