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Meet your new co-forum moderator!
Hello! My name is Cullen Steele. I’m new to the PH forums, but many of you may already know a lot about me through my mom, Colleen Steele. I’m joining her and Jen Cueva as a co-forum moderator, focusing on PH and transplant.
For those who don’t know me, I was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) when I was 8 and placed on triple therapy, one of which was IV Flolan. I did well on treatments for 5 years until I needed and received a heart and double-lung transplant on August 7, 2014.
There can be many challenges that come with living with a rare disease like pulmonary hypertension. As someone who was diagnosed at an early age, I was granted an interesting yet unfortunate perspective on this. I not only saw how this impacts children, teens, and young adults as they grow up, but experienced it myself firsthand.
I’m 11 years post-transplant and would also like to share this experience with you. I’ve gone through the transplant evaluation process, know what the wait for the call is like, and experienced a dry run, in which the donated organs were not viable to use. I know what recovery is really like and what it takes to stay well post-transplant.
My experiences with having PH and having received a transplant have heavily influenced my academic career. I am in my senior year at Immaculata University as a double major in Social Work and Sociology, and a minor in Psychology.
I am looking forward to engaging with all of you, and I hope to cover topics that will interest you the most. I am open to suggestions.
What topics would you like to see me cover regarding PH and/or transplant?
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15 Replies
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Welcome Cullen! I look forward to reading more, about the journey already taken as well as your future journey.
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@V.R. Peterson I appreciate your warm welcome and look forward to getting to know you and our other members!
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Well, hello and welcome, Cullen! I feel as thought you are part of our PHamily already! And I love the beard in your ID picture! My name is Terese and I’m happy you are joining us! All the best for your future!
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@Terese Tuohey thank you for your kind words and welcoming me to the community! The feeling is mutual as I already feel a part of the PH family and I look forward to helping it grow.
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@cullen-steele I am thrilled that you are here to help with forum moderation. Your personal experiences and the career path you are on will offer a lot of support to our forum members. They are all wonderful, and you will soon discover that they will help you in many ways, too!
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Welcome, @cullen-steele .It’s so exciting to have you join us here as a moderator. You will offer such a unique perspective here to our incredible forum members. We’ve heard so much about you through the years, now maybe it’s your turn to spill the beans on, @Colleen ! Together, we should be able to keep her in line 🤣.
I’m eager to hear more from you, as I know your experiences will resonate with and benefit so many others. I do have a question for you: what has been the most challenging aspect of life post-transplant, especially given the already complex stage of life you were in at the time?
How’s your summer been? What are you most excited about as you go back to school later this month?
I’m not here every day, but if you need anything at all, don’t hesitate to reach out! Welcome aboard, my buddy!
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@jen-cueva Hi Jen, thank you for such a warm welcome! Everyone has been so kind and welcoming so far. Although I know you fairly well I still feel like a stranger to many of those in the community. Despite this everyone has been extremely welcoming and kind and I am eager to share my experiences and grow within the community within the coming weeks as a moderator.
When looking back at some of the most challenging aspects I have experienced post transplant I personally believe this would be a mixture of relearning my medication and changing hospitals. I won’t go in-depth on this now as I will likely make a separate post on this later. Starting with relearning medications what I mean by this is that since I was listed for my transplant due to Pulmonary Hypertension after my transplant I no longer was required to take a majority of my PH medications and these medications were instead changed out for my new transplant pills. One of the discharge requirements by my transplant team was that I actually had to memorize the long list of new pills and recite them to my team before I could be considered for discharge.
The other massive challenge that I have had to experience several times being a pediatric patient is the changing in hospitals. This change was both the change from pediatric to adult care and the massive change from hospital care in one state to another as we no longer had my PH/transplant care at Stanford. This was extremely stressful at the time as due to my complex case it took around 1 year for my care to become re situated with my new team in Washington.
My summer has been busy so far. Due to this being my senior year I have spent a majority of it preparing for the school year either searching for colleges for my masters or internships / jobs. Something I’m really looking forward to upon returning to school is that I saved nearly ALL of my electives for senior year (haha). So while yes I do still have some core classes I need to take I have a few classes I can pick and choose with and study what I want!
I’ll try not to bug you too much with questions and hope to make your job (and my moms) easier!
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Cullen, please don’t think of asking questions as “bugging us.” I’m sure your mom would be the first to tell you that every forum member needs help at times, even moderators.
I’m equally as confident that, while our members will learn much from seeing your story from a first hand perspective, we’ll also be happy to answer any questions you might have. Again, welcome! 💜
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@jen-cueva There are no beans to be spilled about me! 😁
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Welcome Cullen!! We have all heard so much about you and your journey you will be such an asset to forum members. Your perspective will be so helpful. Your whole family has been through so much and the challenges continue.
Thank you for putting yourself and sharing your journey … and CONGRATULATIONS 🎊 going into your senior year!!
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Welcome from one of the very distant PHers.🦘 You’ve had a tough time of it, so my thoughts have often been with you and your family. I wish you much success in your studies and good health. My Doc thinks I probably had Idiopathic PH from childhood, and I now realise why I had physical limitations. But, at 83 years old I’ve never been better – at least that’s what I reckon. Hang in there kid. It’s all ahead of you. ❤️❤️
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Welcome. I also have idiopathic PAH, but was diagnosed as an adult. I’m sorry you had to grow up with it. Glad you’re on the forum.
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In my column this week, I welcomed Cullen to the forums. I hope what I shared about him might encourage others to join the forums, especially those pre- or post-transplant, or considering it as an option. Please feel free to share the column with anyone in the PH community you think might benefit from Cullen’s support as our new moderator.
https://pulmonaryhypertensionnews.com/columns/welcoming-son-newest-ph-news-forums-moderator/
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Welcome Cullen. My name is Steve Sallee. I also had a lung transplant. I also experienced a Dry Run. I will be 5 years post transplant this December. Best decision I have ever made was getting the transplant. I was 62 when I got my new lungs. Haven’t needed oxygen since. Glad to have you aboard.
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@Steve Sallee Hi Steve, thank you for the warm welcome and congrats on 5 years! I can also happily say that my transplant was the best decision I made as well and I am happy to be joining the community.
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