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    • #15933
      Bailey Vincent

      I was supposed to have my CF Clinic appointment yesterday (telehealth) and I canceled it at the last minute. Considering I had been feeling poorly prior to (with what I think was a sinus infection which was gone after a couple weeks of orals), and am a little more wheezy than normal, I know this wasn’t the smartest thing to do. Still, sometimes my home environment makes Telehealth too tough.

      My daughters both hit their peek mood swings at the same time yesterday, and our house was utter emotional chaos all morning. One teen was raging at me for making her do math (oh the math rage) and the other tween was yelling about something-that-didn’t-even-make-any-sense (newfound hormones are definitely to blame), and I was somewhere in the middle, crippled with back pain, wondering: “Wait… What’s happening?”

      I was so exhausted from it all – and yes, current pain levels did not help the situation- that I honestly thought I’d start sobbing on the Telehealth as soon as I saw my team. So I wimped out and canceled in order to finish my heavy writing work load (So. Much. Work), ride out the sister-warfare, and curl up in my own little cocoon of apathy instead. (Healthy, right?)

      Do you ever cancel appointments or are you really good about keeping them?

      Can anyone relate to this?

      That’s it. That’s my question: “Is anyone out there?” (lol). But truly, I’d love to know if you’ve ever cancelled on your clinic before, and if you feel guilty about it or realize that lives + medicine can be a difficult dance sometimes.

    • #15934
      Tim Blowfield

      So you joined the “Cancel Culture!” Ha Ha! There are times when it is necessary. OH! those teenage hormones. At times all you can do is Love those girls.

    • #15935
      Jenny Livingston

      You and I have discussed the influx of pre-teen hormones in our homes and how catastrophic they can be. 🙂

      I’m very good at keeping appointments. I actually really like going to clinic — whether I’m sick or healthy, I feel like it serves an important purpose and I love my team. Also, I have the deep seated desire to be compliant and amenable; it’s just who I am. Even if I had to cancel for very legitimate reasons (like yours) I’d feel terribly about it.

      My clinic is 2.5 hours away and, as we know, CF clinic appointments can last a very long time. All in all, it’s generally an 8-10 hour ordeal for me. In many ways, I think it’d be easier for me to cancel a Telehealth visit. It seems far less burdensome to cancel a phone call than rearrange plans for an entire day. And I imagine I’d feel a bit less guilty for doing so! (To be clear: I don’t think you should be feeling badly or guilty in ANY way!)

      I believe that most of us on the patient side understand that life and healthcare are difficult to balance, and I’d like to believe that our healthcare providers understand this as well.

      I hope your home is significantly less moody and your pain has subsided a bit today.

    • #15941
      Paul met Debbie

      I once cancelled an appointment years ago because the highway was blocked and I could not get there at all. And in 2019 I cancelled my annual appointment because I had really nothing to report and was absolutely stable for the past 4 years. We mutually agreed that I could skip a year. In 2020 everything was cancelled by the hospital because of covid. So I last saw my team in 2018 which feels ages ago.
      I had several telephone appointments since though so they still remember me, and every month since july I make a home pft and send in the results. So far this works. I think next summer in a covid-low period I might have some other testing done in the hospital.

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