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Finding comfort in a (perhaps) strange place
I’ve talked about my love for clinical research more than once here. I also mentioned that I was a clinical trial participant this past fall. This particular study was fast-paced and short term. I traveled to my hospital once a week for 6 weeks, and two of those visits were 12-13 hours long. During this time, I was able to see members of my care team face-to-face (something I’ve dearly missed since COVID precautions have kept me out of clinic) and I realized… this was one of the highlights of my entire year!
When you’ve spent your whole life in and out of hospital and clinic settings, it all becomes normal. You build meaningful relationships with the people providing care. You become accustomed to the sights, sounds, and feeling of the hospital in a way that can, strangely, provide comfort. At least, this is the case for me! I love my healthcare family and a hospital setting feels like my second home. My sister thinks I’ve developed some form of Stockholm Syndrome. 😂
Taking part in something I love to do and getting to see members of my wonderful healthcare team in person were things I appreciated more than ever this year!
Have you been seeing your care team in person throughout this year? Have you missed in-person contact with your care providers? If you were away from you hospital/clinic for a while and returned under COVID precautions, I’d love to hear what that was like for you.
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2 Replies
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I definitely miss my CF Care Team. There is a great one at State University of New York (SUNY) CF Clinic in Syracuse, NY. I have been going there for 22 years now. After I was first diagnosed in 1992, this clinic was only for pediatric patients. By 1998, I could get in and saw a pediatric CF doctor for the first year until and adult doctor joined the team. In all the years I’ve been going there, only one member of the team was– to put it in polite terms–less than helpful, but she retired a long time ago. Telemedicine is helpful in this pandemic, but I miss the team.
Judy Moreland
age 71 with CF -
I have not been there since 2018. 2019 we decided to skip my annual and 2020 was covid-cancelled. Since then I regularly – when needed – contact my team for advice. I hope summer 2021 will be safe again to do an “in person” visit and see my cf-nurse and pulmonologist again, do some lab-work and the odd scan or x-ray. It all depends on the covid-vaccination of course. Might be a nice topic also – I am not at all sure yet if I want to belong to the first group of vaccinees.
I can’t say that I ever felt any comfort in a hospital, I am always very aware of the infection risks, even on a day-visit for my annual. And being hospitalized is my utter extreme of dis-comfort. I feel very unsafe there. People are nice enough though, that’s not the problem. But can I mention infection risks again (abysmal cleaning going on there), bad beds, terrible food, the worst coffee, mistakes with medication, the dehydrating temperatures – aargh! I will do almost anything to avoid that place.
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