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    Originally posted by SCI-Nurse View Post
    I have a little different perspective on this than most since I live and work in NYC. I do not think that this was a media panic- I don't think that we acted soon enough. That being said, I don't believe that we realized what we don't know about the virus. I would put anyone with a compromised respiratory system in the high risk category. Our statistics are showing that the one caveat is that asthma does not seem to be a co-morbidity with a lot of impact. And much of the "pneumonia" that we thought we were seeing is now being attributed to pulmonary emboli (multiple very small ones). The survival rate for people who end up on ventilators is low -but the information that is not shared is that these people are probably some of the sickest people I have EVER seen and I work in a Hospital System that is known for treating the sickest of the sick. They also don't tell you that the longer you are on a ventilator, the less likely you are to survive. Many of these people are on a ventilator for a long period of time - contributing to their mortality rate.

    I think that the only way we got over the crest of this virus was isolation. I know it is not fun, but believe me when i say this virus is lethal - and it doesn't care who you are or what you do. I think it will be interesting to see long term outcomes on people that were hospitalized in the ICU and compare them to other groups that have been in ICU's. I am not sure that there will be much difference in the long term consequences of this pandemic.

    Sorry for the long rant - what we don't know is much scarier than what we do know.

    ckf
    ckf,
    Your point of view is appreciated. This is a frightening and very serious disease that will leave behind many survivors who are then disabled. We who are already disabled are at greater risk, which is just one more reason to accept the inevitability of death, accept that we have no idea when it will come, but when it does it may be very speedy. I'm pushing myself past the reluctance to handle details of my trust documents, and especially to make sure my executor has all my financial passwords. Obviously I trust her.

    Comment


      Organize all of your important documents into a binder, using folder pockets to hold things such as wills. You can also three hole punch copies of the important documents and keep the originals somewhere safe. Equally important have a spreadsheet of all passwords, account numbers and phone numbers of everything that may need to be cleaned up should you demise. Make sure all of your beneficiaries are in order. Also place all of your important documents such as birth certificate, etc. in here. Obviously if you have a safety deposit box you can keep the originals there, but be damn sure someone else has a key and is authorized to access the box.

      And then, while you're stuck at home with time to spare, start a document thinking about everything that may need to be dealt with after you pass on, especially important if you live alone. This would include the locations of files, etc. in your house/apt, if you have any wishes for disposing of assets, and what I found important since I keep a lot of personal information on my computer, a list of all the important PC folders and their contents. Back up frequently.

      Make a list of all of your aides, should you private hire, their phone numbers for someone to contact and if you want them to be given some type of financial severance. Obviously, anybody that is really important can be included in your well. I have no spouse or dependents and my main caregiver has been with me for over 26 years. She can certainly use a nice bequest from my home sale over other family members who are on civil service pension and are comfortable.

      The best thing you can do is to not leave a mess for someone else to clean up.

      Work on it now while you have time. It's a responsible thing to do anyway regardless of the current pandemic. Once you start it you'll see it does require quite a bit of time, especially the main document of directions, plugging up every uncertainty of someone else may have to deal with once are gone.

      Comment


        Originally posted by Tetracyclone View Post

        I understand this but also have concluded that, were eI intubated during COVID 19, I would be so ill that recovering to the point I was independent again is highly unlikely. I've seen enough of rehab for this lifetime. When I discussed my thoughts with my family Practice Dr. he said he understood and did not disagree, given known information. He is sending me a form where I can check off all the "Do Not"s and put them in my hospital emergency bag.

        Such decisions are highly individual. it is always smart to prominently display your wishes to hospital personnel.
        Sounds like you’ve though this one through. I just didn’t want anyone thinking they’d have a better chance of survival if they declined being intubated. P It absolutely makes sense to be DNI if you don’t think the risks and pain of being intubated are outweighed by the increased chance of survival such as your example.

        Comment


          New video from SPINALpedia on what to do to protect your health in this era of COVID-19:

          https://spinalpedia.com/video/jwgRKoExRd4

          (KLD)
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

          Comment


            I happened to email my SCI physiatrist about some routine business and asked him if he had any SCI patients who were positive. He replied that there were four he was aware of, all had mild cases and all recovered. Frankly, I'm skeptical of such optimistic implications.

            Though I'm not sure he realized I was specifically asking about his SCI patients only and not about his whole rehab patient population, big difference. And then you have the issue of quad versus para.

            Around here, prohealth, a multispecialty and multifacility provider network offers antibody testing without an RX. Either schedule an appointment or simply show up, though the former is preferable. They will call you in your car after checking in by phone.

            Has anybody had the serology testing?

            Comment


              Originally posted by SCI-Nurse View Post
              New video from SPINALpedia on what to do to protect your health in this era of COVID-19:

              https://spinalpedia.com/video/jwgRKoExRd4

              (KLD)
              Great video worth the time to listen .Thank you SCI nurse please post future links to his videos

              Comment


                That is an ongoing research study. The initial study showed a decrease in some hormones after SCI. And the average life expectancy used to be less. But that is why we really push getting vaccinations for flu yearly and pneumonia vaccine etc.. so I think the key word here is somewhat and of course it would vary for the individual.
                CWO
                Last edited by SCI-Nurse; 11 May 2020, 12:05 PM.
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                Comment


                  I was just listening to/watching the Open House video, with Dr. Young, from a couple weeks ago, and he said people with SCI have shown a ~24% mortality rate, with those over 60 up at ~53%.

                  That wasn't great news to hear.
                  "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

                  "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

                  Comment


                    Those #'s were from a study of VA SCI patients.

                    Comment


                    • Norm
                      Norm commented
                      Editing a comment
                      Do you know when?

                    Originally posted by Jim View Post
                    Those #'s were from a study of VA SCI patients.
                    Is that considered statistically representative of the SCI population in general?
                    "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

                    "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

                    Comment


                      Here's the study (haven't read yet) - https://www.nature.com/articles/s41393-020-0529-0

                      Comment


                        I've been hearing the general population case fatality rate has been going down.
                        Last edited by Norm; 16 Sep 2020, 9:28 PM.
                        "Some people say that, the longer you go the better it gets the more you get used to it, I'm actually finding the opposite is true."

                        -Christopher Reeve on his Paralysis

                        Comment


                          From the study on VA SCI patients linked above (while the numbers are scary high this is also part of why):

                          These case fatality rates for Veterans with SCI/D and the overall Veteran population, as well as what has been reported elsewhere for the US population and the world, are overestimates of the infection fatality rate. In each of these populations, individuals with asymptomatic infections are unaccounted for, and individuals with minimal symptoms may not have received testing, particularly early in the pandemic when testing capacity in the US was minimal. Also, it is possible that mild symptoms from COVID-19 in an individual with SCI/D could be misattributed to other medical conditions commonly experienced, such as urinary tract infection. This would bias diagnosis of COVID-19 in individuals with SCI toward cases with greater severity and risk of fatality.
                          "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

                          "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

                          Comment


                            Originally posted by Oddity View Post
                            From the study on VA SCI patients linked above (while the numbers are scary high this is also part of why):
                            I don't think it says anything that skews the stats greatly. Other than the UTI example (and similar misdiagnosis) it is applying the same method as the general population, which is percent of confirmed positive cases. I don't think the misdiagnosis in SCI would greatly skew the numbers (there are probably similar types of misdiagnosis in the general population), since most of us would run to get tested if we even thought it MIGHT be Covid. For comparison, the fatality rate of the general population is about 3% compared with 24% above, and for those 65 and over it is about 15% compared with 53% for 60 and over SCI. Misdiagnosis would account for a very small amount of that dramatic difference.
                            C-6/7 incomplete

                            Comment


                              Maybe, but their base population mortality for Vets who were diagnosed was 7.7%, which is more than twice the base population mortality of non-Vets in general. That suggests there was some inflated accounting going on. If their base rate was more than twice normal their SCI rate could be as well.
                              "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

                              "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

                              Comment

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