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We hope to hear from you this holiday season and beyond!
When the holiday season rush begins, participation on the PH forum by members starts to slow down. I understand this is a busy time of year, but let’s be mindful that for some, this can also be a time of emotional and physical struggle.
Let’s be PHriendly and check in at least once a week. Even if it’s a simple, “I am busy but doing well, or I am feeling down and struggling to keep up with the holiday cheer.”
If you have been reading the forums but are experiencing difficulty posting topics and/or commenting, please email me at [email protected] with details of the issues you are encountering.
Let’s work together to get our conversations flowing again.
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16 Replies
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On this Day of Thanks, 2025, let me initiate and subset of infirmitives. It has been seven months since my life was saved in a hospital. It has been four days since I was hit with shingles. Why shingles? The symptoms for me were pain in both sides, feeling feverish without an adnormal temp. After extensive examination of my lungs and chest the doctors’ consulsion was pulmonary edema, that is water in the lungs. Two days later I was able to see a Pallaitive Care Doctor. In that time I developed a large awful looking rash about my back and side. This second diagnosis was correct.
Outside of the discomfort and aggravitation. what I learned was that my imune system suffered due to taking Remodulin (treprostinil) and Adempas. Nothing to be done about that as is necessary. I have been living my life as active as possible but if my imune system falters it complicates everything. BTW, I try to avoid hospitals.
Cheers for the start of our holiday season, especially Advent.
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I am so sorry you came down with Shingles – horrible pain and itching 😡. The only thing that helped me was Gabapentin (nerve meds). Knock on wood since I got the Shingles vaccine I have not had a flair up.
I think when you have PAH and complications it is easy for doctors to zero in on the big stuff and not look for a simple explanation.
I went to the ER because I had some bleeds happening. I was then transported to the University Hospital where they zeroed in on my PAH with a RHC to find out the bleeds and low count labs showed not a PH issue but heart issue. Four days later I was able to come home.
I can understand why the doctors zero in on the big issues first, I am just happy they are also willing to look beyond also.
I hope your Shingles is easing up and that you are more comfortable 😊.
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@carol-volckmann Maybe it wasn’t @jen-cueva but you that I am remembering had shingles. You make an excellent point about how PH doctors especially tend to look at the big issues before more common health concerns. Ironic considering many go undiagnosed with PH for a few years because doctors look at more common concerns first.
How was your Thanksgiving? How are you and Dick feeling? You have both been on my mind!
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Thank you @Colleen for your thoughtful note. You are so right. When it comes to critical medical issues doctors do not seem to look at the bigger issues and so being undiagnosed seems to be the usual. Once you finally have a correct diagnosis (that may take years and many second, third and fourth opinions) then when any medical changes come up, then they point to the big issue. Strange – that is why we must to be diligent and advocate for ourselves.<div>
We ending up not going down to Sacramento for Thanksgiving. Neither one of us had fully gained our strength. We did have a quiet Thanksgiving 🤫 with all the trimmings and lots of leftovers 😋.
I hope your Thanksgiving brought both your boys to the Thanksgiving table and that your mom and dad were able to enjoy having the family around the table. I also do hope you did NOT have to do everything and took time out to sit back and also enjoy 😊 .
Be well my dear friend, take time for yourself and maybe pile on the warm clothes and go to the shore and walk the beach.
Warm hugs 🫂 🤗 filled with gratitude and love ❤️.
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@carol-volckmann I’m sorry to hear you didn’t make it to Sacramento, but it sounds like you enjoyed a peaceful Thanksgiving at home. I’m sure you were disappointed that you weren’t up to going, but it was a wise decision not to push your health beyond its limits.
This Thanksgiving it was just me and my parents. I did all the cooking and it all turned out very well if I might say so myself! Aidan’s girlfriend attends the Univ. of Colorado. He flew out to spend Thanksgiving with her and her brother and invited Cullen to join them. They had a wonderful time and I’m so happy for them that they arranged meeting each other in Colorado.
No shore for me right now but I am going to see Cullen at his university tomorrow (Friday night) for Carol Night. It’s such a beautiful traditon as carols are sung around their huge live tree in the rotunda. I’m really looking forward to it.
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Hello again @Colleen What a wonerful time for Aidan and Cullen to be in Colorado together for Thanksgiving. Quite a commute from WA to CO to be with your loved one.
I can just see you in the kitchen – turkey all stuffed in the oven, mashed potatoes, maybe beans for your veg and cranberry sauce ( you probably made the cranberry sauce with fresh cranberries)! Lots of leftovers 😋 to enjoy over the weekend.
I know you will have a very special, spiritual time tonight sharing Carol Night with Cullen – it will warm your heart.
Sending you lots of warm hugs 🫂 🤗 filled with Joy and Love ❤️.
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@Randolph Reynolds I am so sorry to hear that you are dealing with shingles! I have never experienced it, but from what I have heard, it can be very painful. I’m not certain, but I think @jen-cueva has had shingles before, or am I thinking of someone else, Jen?
Were you able to enjoy Thanksgiving at all? I hope so! I know you do your best to stay active, if not physcically then mentally. Have you been working on any writing lately?
How is your wife doing?
It’s always great to hear from you!
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Hey @Colleen , you were on my mind and I just wanted to check in to see if your dad is doing any better. How about you, you and your family have been in my prayers. Is your house in Bellingham okay? Is Adain still living there? The floods have not been an issue fir us as the Olympic mountain range does protect us.
Sending you positive energy ✨️ prayers 🙏 and warm gentle hugs 🫂 🤗 ❤️.
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@carol-volckmann I am relieved to hear that you weren’t seriously affected by the floods! Our home in Kent was safe too. We are on a hill which protected us from the flooding.
How are you? How are you and Dick feeling?
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Thanks for the updates, @carol-volckmann and your home in Kent, @Colleen-Steele . Was Aidan home when it was so bad?
Grateful you all are safe.
Also, they thought I had shingles last summer. I’m still not convinced it was definitely shingles but grateful it’s over. @Randolph Reynolds ? How’s 2026 treating you?
@carol-volckmann , how are you and Dick feeling this week? How’s Cloud doing? Thinking of you all and sending extra gentle hugs and love. 🤗
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Hello sweet friend, hope this note finds you doing well and stable. Thank you for reaching out Jen, it means so much.
I am doing pretty well except for a couple of hospital stays with more bleeds, but am okay right now except for …
Cloud and his black Lab best friend playing and running and chasing and both came running at hit me full on at the knees that I fell and face planted on the payment. The good news – nothing fractured or broken, but really did my right knee in bruised 😢 and with fluid. My face – well, I really look like I was in a bar fight and lost 🫣. That was just 2 weeks ago and I still need a walker to help get around. I am just so lucky that nothing is broken and the dogs thought it was so much fun 🐕🐕.
Dick is fine still struggling with balance and Cloud is one happy camper so long as he gets to play with Hunter.
Thank you Jen for sending 💕 I am holding on to your kindness. Love and lots of warm hugs 🤗❤️.
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Oh no, my sweet friend, @carol-volckmann ! I am so sorry to hear about the accident when Cloud and his friend were playing. Thank God, you were injured worse than you are with your increased bleeding episodes recently! I bet you are still sore from that mishap!
Sending you extra gentle hugs, love, and prayers that you can fully recover from that accident and return to your baseline without the walker. Please know we are here cheering you on and remember one day at a time, sweet PHriend! 🤗🙏😘
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Thank you dear sweet friend. @jen-cueva you always seem to know just what will warm my heart and put a smile on my face 😊.<div>
It is now 3 weeks and my knee is still not better so tomorrow I see the Orthopedic 😳🦴 Maybe I am just being too impatient 🙃.
I have not heard from you Jen to how you are doing and all the challenges you face every day including your work – your passion but also that work can drain your energy. I am sending you positive thoughts of making sure you are taking care of your inner self. Lots of hugs, warm thoughts filled with love ❤️ 😇👩💻🧚♂️💐🌻🌷.
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@carol-volckmann I am catching up and just read about your face plant! The dogs said, “Tag, you’re it,” and were probably disappointed when you didn’t run after them! In all seriousness, ouch! Thank God you didn’t break anything, but pain is pain, and I’m sure you were really hurting! Are you feeling any better?
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You have to careful of what you wish for … especially when calling your dog … “Cloud COME!” and they do, full run with their buddy dog another Retriever and run right through you!! Tag you’re it! For sure! Thank 😊 you for making me smile.
This forum is a healing place for patients and caregivers equally. It is a safe pace to let it all hang out, the good, the bad and the ugly and with the help of people like you and Jen … you can let it out, let go and move on. Moving on sometimes is the hardest part especially the loss of a loved one. But knowing they are there too helping us let it out, let it go and hang on with their help and still their guidance.
Much love @Colleen warm smiles, gentle hugs, gratitude coming your way 💖 ♥️ 😊🦋🌷
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Wishing all my PHriends a very Merry Christmas and Happy New Year! And may you all be richly blessed with health and happiness!
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