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    • #14847
      Bailey Vincent
      Keymaster

      I have read the advice about cancelling all non-urgent medical appointments amid the COVID-19 outbreak but I can’t help but wonder: What does compliance mean during the coronavirus?

      I have an important appointment tomorrow that is not medically urgent (I’m not in pain at this moment) but it IS in the sense that it’s dealing with something that can become urgent/cause me pain historically and it was made about 6 months in advance. I’ve been waiting for this appointment for awhile, but also assume it might get cancelled like so many other things have been recently.

      Is avoiding hospitals the most compliant move right now, or is going like you planned? How are YOU personally handling these sort of decisions?

    • #14852
      Jenny Livingston
      Keymaster

      I was supposed to have CF clinic (a post-pneumonia follow up) on Monday. As recently as Thursday, I had spoken to my nurse coordinator and we’d decided that the benefit outweighed the risk and we planned to keep the appointment. But by Sunday night, things had changed. I got a call from the PFT lab at 9:00 pm. They were letting me know that they were cancelling all PFTs until further notice. The following morning, I spoke with my doctor and nurse coordinator and they both said that all appointments that weren’t urgent would be cancelled.

      So, to me, it’s all about risk vs. benefit. If it had been a routine clinic appointment, I probably would have cancelled sooner. But since it was following a recent bout of pneumonia, it seemed important. However, now it’s entirely out of my hands as my hospital/clinic is making the calls from here on out.

      I wonder (and worry about) how all this will play out. The thought of not seeing my doctors unless it becomes urgent is unnerving to say the least. I’m curious, did you end up keeping the appointment?

    • #14856
      Jason Schwefel
      Participant

      Well, I had an appointment scheduled for yesterday, non-CF, a chiropractor appointment but an appointment nonetheless, and I cancelled that at the beginning of week without a thought. Personally I would wait at least two weeks to see how this all plays out before going to an appointment. Everyone’s level of comfort going in a medical facility setting is different but that is my own gut feeling.

      Now, to the other side of the compliance coin…I am currently under quarantee hopefully until tomorrow. I had to be tested yesterday for covid, or the doctors thought it necessary to be tested because of my “chronic illness”. 14 days ago now on March 5th at a retirement party I may or may not have had contact with a confirmed infected covid individual. Like I said this was 14 days ago and thankfully I have had no signs or symptoms other than the “normal” CF symptoms or allergies this time of the year. “Do you have a cough?” was one of the questions, ummm yes, I do I told you I have CF…LOL

    • #14918
      Paul met Debbie
      Participant

      Compliance most of all now means: don’t get infected and stay home!

      I can only speak for the situation in the Netherlands now which is becoming nastier every day. It’s not as bad as in Italy, but it might get that way soon if the rate of infections and hospitalizations does not diminish quickly. IC’s are near their maximal (and extended) capacity almost and will reach that in days rather than weeks. Due to years of subsequent cutbacks in healthcare, we only have 1/5th of the IC capacity (beds, staff, equipment) of our neighbor country Germany. Perhaps they are willing to help us – talks are being initiated. The Netherlands was always presented as a modern country with a first-class healthcare system. Now it seems this is only the fair-weather situation. We have protected ourselves much better against the water than against a pandemic. You can’t win ’m all.

      I go from the presumption that everyone, especially in healthcare, is possibly infected with covid-19. The official numbers don’t add up at all, because there is too little testing going on and not all the cases are counted as covid-19, even if the GP is convinced it is. For some strange reason, we don’t seem to have enough testing capacity in this country. Only one hospital in the north of the Netherlands seems to test everything that moves to protect the patients and their own staff. This is frowned upon by the minister of healthcare because it’s not the official policy. They have bought tests from different manufacturers, while the rest of the hospitals only have the Roche test equipment, of which there is a shortage. Hopefully the government will change this policy and start testing like the WHO advises. For that, they will have to start buying testing material immediately. Pressure groups are already pushing for that to happen.

      Elderly people with comorbidity in many cases decide not to go to a hospital with covid-like complaints if they would need to be intubated, because of the expected bad outcome. They die at home with palliative care. Without an official test, they will not even turn up in the covid death-statistics.

      There is a big shortage of protective clothing and masks in hospitals, so in some cases the masks and suits are worn for half a day long (until the break) instead of changing them after every patient. If I would go to a hospital or even to my own GP with covid-like complaints (which could easily be from a normal flu – the difference can only be known with a test, which is not available or will take a day to produce a result), I run a risk of getting infected with covid just by being examined in the same room as my doctor. Because testing on covid-19 is more or less random, it mostly does not become clear whether me or my doctor are infected. They try to separate suspected covid patients from others in the triage, but this is hardly possible without testing and isolating everyone, because many covid patients that go to the doctor or hospital triage at first present only mild symptoms while deteriorating fast in the course of the next 12-24 hours.

      For me it’s clear that this situation means: I don’t get near any healthcare worker if not absolutely necessary. Absolutely necessary to go to a hospital or visit (or be visited by) my GP in my opinion are now only cases in which I think that I suffer from a possibly life-threatening situation, because going to the hospital or GP might also be life-threatening itself. These are rapidly becoming medieval times with impossible choices for both patients and healthcare workers.

      So, if possible, I will try to handle other situations than these myself as best as I can. Of course, I can and will ask for instructions from my GP or specialist by telephone or email if I am unsure. But I will think (at least) twice before having eye-to-eye contact with any healthcare worker. Even when they use their protective clothing, because that might protect them (they are on the inside), but not me if in the hours before they have been examining many covid patients in the same suit.

      Again, I am talking about the situation in the Netherlands only. Everyone is advised to really get informed about their own situation. In my opinion and experience, this requires much more than just reading the official bulletins of the government. And please use your common sense and your intuition – you are the wisest person when it comes to your own healthcare!

      Take care and stay at home,
      Paul

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