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    • #15843

      Considering I was feeling pretty gross at the start of the week (though still so considerably better since surgery, which completely turned my life back around to the positive), I wanted to ask:

      When do you contact your CF clinic about symptoms?

      How long do you wait after starting to feel sick? Or what do you wait for? For example, do you wait until you have a fever? Until your mucus is a certain shade of green? (Which, by the way, is one of my favorite songs by Incubus. Here’s the acoustic version). Do you wait until you’re coughing a certain amount or feeling a certain thing?

      I tend to wait as long as humanly possible and doubt myself all the way. (“Am I bothering them? Am I being too dramatic?”) Because I am Deaf and must email to communicate, I always worry my team is going to be like: “Good gosh! Another email from this girl?” I am, as you could imagine, a little loquacious.

      What about you?

    • #15844
      Paul met Debbie

        Well, I don’t think about what they might think. They know me by now, and I am always myself. So I feel free to call or email them anytime I have a question. It takes less time for them to answer my email or phone question than when I would come and visit them. At this time in covid-land, I think they prefer doing everything at a distance themselves. And it is their job after all, you know? I don’t want to deprive them of an income by never calling. 🙂

        So that is the answer also: when I have a question about my health, then I notify. Mostly I have then experienced some relapse in my condition, tried to remedy it myself and also have formed a possible solution and want to have their opinion or just inform them about my decision, or request a recipe for another antibiotic I decided to try. Mostly they agree with my choice, sometimes they have another good idea.

        These things always seem to happen on a friday evening, and I sometimes don’t feel comfortable waiting until monday morning until applying my own solution. I always have some antibiotics at hand for situations like these, so I don’t feel compelled to wait if I think things might get out of hand. Then on monday I inform them and we talk further. My sputum cultures are almost never usefull anyway, and an antibiotic will take 2 days at least to show effect. So I prefer to take a headstart.

        For me, several factors can be important. I can tolerate some increase in infection or inflammation activity. I then try to compensate for that for instance with an increase in daily medication or a change in medication and see how my body reacts to that. But when this does not help and when I get too tired to do my normal fitness routines, this is a hard clue to take action. Fever also can be, especially when it lasts more than a couple of days and tends to increase.

        Another pointer could be when my airway condition is starting to impact my sleep. I really need my sleep, physically and mentally. Years ago, when still suffering from recurring nasal polyps, this was also my cue for scheduling an operation: if I couldn’t sleep well from a blocked nose, I was very motivated to get rid of them and an operation started to seem suddenly strangely attractive.

        So, I mostly listen to my body without thinking too much about it. When things get too uncomfortable, I take action. If my normal solutions do not work, I contact my center and ask for their input. If possible, I wait for a little while until applying that, to see how I feel about their suggestions and sometimes modify and ask for advice again if it doesn’t feel right. I know my body and my dossier much better than any doctor ever could. So sometimes I feel they didn’t consider every aspect that is important in my eyes. But we always solve this together.

        PS I had to look up “loquacious”, thank you for this word! I hope this answer is not too loquacious. There, I used it in a sentence – it is real!


      • #15846
        Jenny Livingston

          The answer to this question is ever changing for me. I used to wait until I was horribly sick, then wait a bit longer. To be fair, I had an incredibly difficult time understanding the signs my body was sending and at the time, my relationship with my team was nothing like it is now. I’d let myself get so incredibly sick before realizing/admitting that I needed to be hospitalized.

          But I’ve gotten better at that. Over the last 8 years or so, I’ve been very in tune with my body and I’ve gotten very good at listening to it. I can tell when I’m dealing with something viral and not-yet-sinister, and when something deeper is brewing. For me, changes in sputum and shortness of breath are huge indicators, even more so than fever (we joke that I fever if someone looks at me wrong). That is, I was very good at knowing what my body needed before Trikafta. Now, I experience symptoms so differently and have a much harder time reading my body’s signals. Fortunately, I now have a really good relationship with my care team and never hesitate to reach out. I’ve had several questions and one recent sickness that they’ve helped me with recently.

          Now, I will always err on the side of caution rather than waiting it out. Although, I do sometimes wonder if they see my name and think, “Oh, geez, this girl again…” I haven’t let it stop me. 🙂

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