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Not New, but it’s been Awhile!
Hello PHers,
It has been a long time since I’ve posted, but life has a way of getting in the way, right? I am a long-time PH survivor having been diagnosed in 1967 as an infant. My PH is secondary to congenital heart disease (ASD, VSD) and possibly transposition of the great vessels and pulmonary embolism. I’ve had 3 open-heart surgeries, two as a toddler and one at 19 when I was pregnant with my daughter. Through my youth I saw Dr. Hawes at Children’s Hospital, Denver until I turned 12. I don’t think PH was that understood back then because while I had annual visits to see him, the PH was not followed as closely as the overall cardiovascular system. Cyanotic nails and lips were a big tell and an EKG and Xray were the most used tools. Most of my symptoms before the age of 19 were increased SOB compared to my peers, vertigo when my head was below my heart, and side stitches when walking a lot. Once PH became a large problem again in 1990, life never went back to the “way it was.” I have used oxygen since “rediagnosis” and have had many more obstacles on the way: Atrial flutter (ablation), Atrial fibrillation (cardioversion and Tikosyn did not work, constantly in a-fib), bradycardia, two heart blocks, interstitial lung disease (hypersensitivity pneumonitis), a pacemaker put in, and a paralyzed hemi-diaphragm. I worked full time until 2022 when the memory loss I’d been experiencing was finally diagnosed as cerebral amyloid microangiopathy. At the same time, I was diagnosed with brain bleeds (due to the CAA), a stroke, and Chiari Malformation. I really believe I was born on the Island of Misfit Toys! The hardest part for me has been going on disability. I hate not being independent and relying “the system” to facilitate life, but I also know that I am no longer able to fulfill the obligations of work. I try to keep occupied, which really isn’t that difficult with my increasingly slow-cooker brain. 🙂 I am not eligible for transplant due to the new illnesses and there are really no drugs that I can add for PH that won’t have side effects exceeding the advantage of taking them and no drugs or surgery for the other illnesses due to exacerbation of PH. I am grateful that Colorado has acknowledged the need for assistance in dying because I know I don’t want to live past my ability to take care of myself. After all that, though, I have to say that I’m very grateful to have lived with PH due to the support of excellent doctors (Dr. David Badesch, Dr. Joseph Kay, both at University of Colorado Hospital) and mental health therapy. I know this is a lot, but I want to be able to help those who might also have issues with more than one problem. If you have questions about any of the things I’ve touched upon, please feel free to ask.
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6 Replies
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@LisaMichele I cannot imagine going through all that you have and still having the empathy to share your story with the hope of helping others! If you are interested, I would love to interview you sometime for my column. https://pulmonaryhypertensionnews.com/life-as-a-caregiver-colleen-steele/
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Lisa
Your medical history and the treatments you endured could be a lecture in any medical school. I was astonished. Not only your impressive ‘endurance’, if that is the correct word, but something special about you that bespeeks of a love of life.
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Lisa, Randolph is right! There is something very special about you and it comes through in your writing. While I am sorry you have had to endure so much, I also know that you have a vibrant spirit and that is why you were able to go through all this,and continue working, no less. So take the time you need at this point of your life. Know that were PHers are all with you, anytime.
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Thank you for the replies. . . you know how to welcome a girl! 😉 Colleen, it sounds like you have a full plate right now – you are in my prayers, as are your parents – and I understand a bit of the struggle you are facing in caretaking older parents. My Mom is 95 and is headstrong and feisty, but dementia is getting worse and worse and I try very hard not to lose patience. You would think as someone also struggling with cognitive loss that I would be much more empathetic, and for the most part I am gentle and patient, but there are days when the fatigue and temper get the best of me. I hope you take good care of yourself and that you have a support system of your own. It’s a lot, and you deserve rest and relief as well.
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@LisaMichele, I can’t thank you enough for your honesty regarding the occasional lack of patience with your dad. I struggle with this as well. Like you, I would like to believe I am mostly kind and helpful, but stress and worry sometimes get the best of me. Dementia is a difficult disease to live with for the patient and their loved ones. My dad turns 95 on Friday, and my mom is 87.
I am so tired most days because caring for my parents is a 24/7 job. How do you manage the responsibilities while dealing with the exhaustion that PH also causes. I can’t imagine!
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Hi, @LisaMichele , I deeply appreciate you sharing your experiences with PH and other health challenges. Your openness, given everything you’ve endured and what lies ahead, is both inspiring and insightful. I’m certain many others here can relate to your journey, as you share it with such honesty and grace.🙏
As a former hospice nurse myself, before my own PH diagnosis 20 years ago, I want to applaud your strength, vulnerability, and unwavering desire to help others. While reading your post, I was struck by how, despite all you’ve been through, you radiate resilience and gratitude. Your acknowledgment of the support from your PH doctor and mental health team speaks volumes about the importance of seeking and accepting help. Thank you for being a beacon of strength and hope, my dear PHriend.💜🌅
“I really believe I was born on the Island of Misfit Toys! The hardest part for me has been going on disability. I hate not being independent and relying “the system” to facilitate life, but I also know that I am no longer able to fulfill the obligations of work. I try to keep occupied, which really isn’t that difficult with my increasingly slow-cooker brain. I am not eligible for transplant due to the new illnesses and there are really no drugs that I can add for PH that won’t have side effects exceeding the advantage of taking them and no drugs or surgery for the other illnesses due to exacerbation of PH. I am grateful that Colorado has acknowledged the need for assistance in dying because I know I don’t want to live past my ability to take care of myself”
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