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Do You Keep Notes On Your Own Medical Care?

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    • #29222
      Colleen Steele

      As many of you know, I am a caregiver to my son who had PH and is now 6 years post-transplant. I’ve neglected my own health for way too long and now I’m playing catch-up.

      Last week I finally kept an appointment with my rheumatologist and was shocked when told he hadn’t seen me since 2018. So, lesson one, time can fly when you lose focus on your own health.

      The doctor asked when and why I stopped my rheumatoid medication. I couldn’t remember when but I know it’s been a while. I also couldn’t remember why. I guess that I must have been having better days and thought I didn’t need it. I didn’t tell him that during a significant flare up week’s ago I considered re-starting the medication using what I had left of the medication. It was expired so I decided not to.

      Guess what? The doctor read in his notes that my cardiologist told me to stop taking the medication because it was too dangerous for me to take with my Long QT syndrome. I have a very vague memory of this.
      We are waiting to hear from my cardiologist for his ok to try another option that should be safer for me.

      Lesson two, it wouldn’t hurt to maintain a medical binder for myself the way I do my son. It won’t be nearly as bulky as his but apparently it’s necessary.

      Do you keep a binder or at least notes regarding your own health? If not, has my experience inspired you to start doing so?

    • #29226
      Jen Cueva

      Oh no, @colleensteele. I am grateful that you kept your appointment. I am sorry that you are now awaiting the cardiologist a[pprcval for another RA medication. At least this doctor read that note, so you know this.

      I hope that they will find a safe alternative for you.

      I do know that caregivers often neglect their care. I usually update Manny’s medications. During this last hospital stay, he had to figure it out on his own. Thankfully he is only on a few meds. But if my CRS kicks in, it helps that he is familiar with his own meds. I realize that this is not the norm.

      I do think keeping a binder for yourself or even a note o your phone may help. It depends on what works best for you and how many meds you take. Interesting that you posted this now; yesterday evening, I updated my med list.

      Good luck on yours, and let us know what med the doctor thinks you can take.

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