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    #31
    Virginia, if he has an oximeter he can check his level. This is how we helped my mother deal with her anxiety of not having O2 on hand after her very bad flu in 2019. She checked her level every AM and charted it but also if she felt anxious at night.

    ANN
    There comes a time when silence is betrayal.- MLK

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      #32
      Originally posted by stillstANNding View Post
      Virginia, if he has an oximeter he can check his level. This is how we helped my mother deal with her anxiety of not having O2 on hand after her very bad flu in 2019. She checked her level every AM and charted it but also if she felt anxious at night.

      ANN
      Hi Ann....I was trying to tell someone about your mother and realized I could not repeat the details. She lives in MA too? Who arranged for her to get the shot? Sorry I am lazy and did not go back to find your post. I asked my oncologist when he called yesterday but he had no info for me. John is just so frail...any info would help.
      LInda

      Ps people in my area of the country were all getting emails from medical portals they use...telling us not to call asking about the vaccine since no one has information. I got such an email also.
      Last edited by Lazarus; 01-16-2021, 03:20 PM.
      Linda~~~~

      Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..

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        #33
        ((((((Hugs to All)))))) ~

        Virginia ~

        I think that your brother should call his physician(s) on Monday to tell them what he's experiencing. I recommend that he monitor his O2 with his pulse ox, which should also show heart rate, several times a day, and chart the time, the SATS, and the heart rate. He should have a BP monitor, so I would add this to the "vitals check." This information might be helpful for his doctors to determine his condition, whether there is a pattern, whether the drops in SATS or increases in heart rate are concerning, however erratic it may be.

        He should ask his doctors for an order for O2 tanks at home, which I imagine they would provide depending upon the results of his charting. As I mentioned in my previous post, an O2 tank can be there "just in case" O2 is needed. A concentrator is usually reserved for people, who need O2 continuously.

        The noise to which he referred must have been from an O2 concentrator, because tanks don't make noise. And, O2 concentrators are large and take up a lot of space. They can be moved room to room, but they have to be plugged in. A tank is portable and can go outside. Tanks provide about 4 hours of O2, where concentrators are intended for people, who need 24/7 O2.

        We had tanks and concentrators for Jonathan and Jim, because they might need O2 intermittently, but if they got sick, they would need it continuously for days/weeks/months.

        At a minimum, I think your brother should have 3 tanks on hand right now.

        Jim wasn't prone to anxiety, but when he was gasping for breath, he became extremely anxious. He said it was very frightening, and the more anxious he was, the more difficult it was to get his breath. In John's car, he needed the window rolled down, even when he was on O2. He also became claustrophobic, which was part of the anxiety.

        I would sit beside him on his bed, speak to him calmly, gently stroke his back and across his shoulders, help him breathe in through his nose to the count of 4 and breathe out through his mouth to the count of 8. This exercise calmed him.

        Not to put a damper on their social life, but I think they may be pushing the envelope after just getting over (or testing negative) from COVID. They both went through a major ordeal, and they're not spring chickens. I think they should be resting as much as possible and staying away from others, until they've fully recovered. They are probably vulnerable to other viruses, like a "simple cold," or the flu.

        Perhaps these outings were over exertion for your brother. He needs a longer time to heal, and he needs to be careful because of his heart condition. So, if you can encourage them to stay home for another week and just rest, I think that would be best for them.

        Walking to and from the car, and getting into and out of the car is also exertion.

        Please ask me any questions. I'm here to help.

        Many prayers on the way for you, your brother and SIL, and everyone here.

        Love & Light,



        Rose

        *Virtual Hugs Are Germ-Free!
        Last edited by Earth Mother 2 Angels; 01-16-2021, 04:38 PM.
        Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

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          #34
          Linda,

          Mom is in Pennsylvania and no one has arranged her vaccine yet. Her cardiologist said that the healthcare group (a PPO) was working on it. She intends to call her primary on Monday.

          You might be remembering that they had a visiting nurse go and give her a flu shot this fall and have had Quest visit for blood draws and even sent someone to do a portable ultrasound.

          I am also getting memos from my portal but without much information.
          ANN
          Last edited by stillstANNding; 01-16-2021, 05:29 PM.
          There comes a time when silence is betrayal.- MLK

          Comment


            #35
            My brother is checking his O2 with an oximeter. I think it was Ann that asked about that. He also has a BP meter (in fact several) that checks his heart rate along with his BP.

            Rose, trying to get him to stay in is like pulling teeth. He thinks he does too much of that already. The Doctor told them they would not have to worry for 60 to 90 days and they are not contagious. However, I can see where he might get a cold or something like that. He doesn't feel that any of his Doctors will give him O2 at this time, but he is going to ask. He is seeing one this week. I asked him about his cardiologist and he didn't seem to feel that he would. When he had the big tank his then PCP had prescribed that. That PCP retired in 2020 and he is with a new practice. I am just glad his wife is there with him. She would not hesitate, I don't think, to get help if he got into trouble.

            This afternoon when I called him he was breathing like he was out of breath. He said he was not at that time. I think he was not beside his phone and had to get up to get to it and he says he is just so weak that that was causing him to sound like that. I noticed that his breathing was becoming much more even sounding before we hung up.

            Rose, I appreciate your concern and I am going to tell him again. I told him that I had talked to you and that you had experienced a lot with your sons and husband.
            Virginia

            Comment


              #36
              Dr. Jennifer Ashton, who is a consultant on the ABC TV network, stated this morning on Good Morning America that after receiving both doses of the COVID vaccines, people will still be able to get COVID. She said that the vaccines do not prevent COVID, but they will help to reduce the severity of symptoms.
              Rose, I wonder if this means that you're still able to get COVID if you happen to be in the 5% for whom the vaccine wasn't effective. According to this, thousands of patients were given the vaccine and a few still got COVID, and the researchers determined that the vaccine is 95% effective--which is very effective, of course. But there's still a chance that you could get COVID.

              From the New England Journal of Medicine (December 31, 2020), "Safety and efficacy of the BNT162b2 mRNA Covid-19 vaccine":

              Only registered and activated users can see links., Click Here To Register...
              SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

              Comment


                #37
                Originally posted by Howie View Post
                What I've been wondering is, how does the virus affect someone who doesn't take an MS drug? Has anyone heard of someone who has MS (like me), but takes no MS drug (like me), and still has their revved up immune system intact (like me), getting COVID virus?
                In this study 20% of the participants were people with MS who weren't on disease-modifying drugs who got COVID-19. While the article doesn't state much about how they did, it does indicate that some of the people on the interferons or glatiramer acetate had a milder case of COVID-19 than those who were on other MS drugs or not on MS drugs:

                Only registered and activated users can see links., Click Here To Register...
                SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

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                  #38
                  There have been news stories about shortages of oxygen and oxygen equipment in at least NYC and California. Certainly, if someone needs it they should have it.

                  For my mother, the hospital documented that she did not need it and was off of it for several days before discharge for severe flu in 2019. At home, she was anxious, especially at night. The pulse oximeter was just the concrete evidence she needed.


                  With CoVID 19, a patient’s condition can get better then worse again so having a baseline and staying in touch with a primary practitioner seems wise.

                  ANN
                  Last edited by stillstANNding; 01-17-2021, 03:46 PM.
                  There comes a time when silence is betrayal.- MLK

                  Comment


                    #39
                    Originally posted by stillstANNding View Post
                    Linda,

                    Mom is in Pennsylvania and no one has arranged her vaccine yet. Her cardiologist said that the healthcare group (a PPO) was working on it. She intends to call her primary on Monday.

                    You might be remembering that they had a visiting nurse go and give her a flu shot this fall and have had Quest visit for blood draws and even sent someone to do a portable ultrasound.

                    I am also getting memos from my portal but without much information.
                    ANN

                    Thanks! My brain has been lazy lately. I must have mixed up a whole bowl of information ingredients. My soufflé of misinformation has deflated!
                    Linda~~~~

                    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..

                    Comment


                      #40
                      Still working on the question about whether a person who's been vaccinated against COVID-19 can still get the virus--this article in MedPage Today (January 7) made the situation clearer--"Vaccinated But Sick with COVID-19":

                      Only registered and activated users can see links., Click Here To Register...
                      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

                      Comment


                        #41
                        ((((((Hugs to All)))))) ~

                        agate ~

                        Thank you for the links, particularly the Medpage one. It makes sense that the body needs time to develop immunity after the vaccination. I notice the word used is "protection" rather than "prevention." It may just be semantics, because the definitions of the two words are closely aligned.

                        I have a feeling we'll be wearing masks, washing our hands, and social distancing for a long time. A year wouldn't surprise me. We'll reach 400,000 U.S. deaths by this evening, I suspect. As for prevention, this could have been prevented, if we were told about the severity of the virus and protocols were in place to protect us last year at this time.

                        Virginia ~

                        I hope your brother is feeling better today and was able to speak to his physician.

                        Perhaps you could persuade him to stay home by asking him, "Would you rather be at home on your sofa and in your own bed for a week or so, or in the hospital, hooked up to machines, for a month or so?"

                        Or, "An ounce of prevention is worth a pound of cure."

                        Many times, Jim would get up and try to do things, which I knew were too strenuous or tiring for him. When I begged him to sit or lay down, he'd reply, "But I want to help you."

                        My response was, "Thank you so much. You can do that by sitting down, because if you wear yourself out, I have more to do to take care of you." That worked.

                        As a heart patient, your brother may need more time to recover, which I think I said in my last post. That is likely true of most of us here on the forum.

                        ANN ~

                        I'm so glad you said:

                        "With CoVID 19, a patient’s condition can get better then worse again so having a baseline and staying in touch with a primary practitioner seems wise."

                        Clearly COVID-19 is virulent, vicious, and can cause lasting health issues, including heart, lung and nerve damage. I wonder if people, who are asymptomatic have a potential for those lasting health issues.

                        SEVERE ALLERGIC REACTIONS TO MODERNA VACCINE IN SAN DIEGO, CA

                        Approximately 6-10 health care workers, who received their first Moderna COVID vaccination at Pet Park in San Diego, had severe allergic reactions following inoculation.

                        Only registered and activated users can see links., Click Here To Register...

                        Out of 330,000 doses available in this lot of Moderna's vaccine, the state is calling a halt to distribution of that lot during an investigation by Moderna, the CDC and the FDA.

                        Look at California's population. We're gigantic. The fifth economy in the World. If this was going to happen, of course, it happened here.

                        Sending healing, positive energy, and prayers for safety and well being to all.

                        Love & Light,



                        Rose

                        *Virtual Hugs Are Germ-Free!
                        Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                        Comment


                          #42
                          A friend sent me this article and questions. I thought some of you might have thoughts.

                          “ See this NYT article on how the Johnson & Johnson vaccine works:

                          Only registered and activated users can see links., Click Here To Register...

                          I don't know if there are differences between the RNA-based vaccines (Pfizer and Moderna) and the DNA ones (Oxford/AstraZeneca)
                          other than the problem of "cold-storage" (so to speak).

                          Does anyone else? I ask because the new shingle shot has been linked to exacerbations such that my PCP recommends against it.”
                          Linda~~~~

                          Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..

                          Comment


                            #43
                            Thanks for the link to that excellent article. It does say this about DNA vs. RNA:

                            Adenovirus-based vaccines for Covid-19 are more rugged than mRNA vaccines from Pfizer and Moderna. DNA is not as fragile as RNA, and the adenovirus’s tough protein coat helps protect the genetic material inside.
                            This vaccine will involve one dose instead of two, and that really appeals to me. And it just might be available by February or March.

                            As for the shingles vaccine, are you sure that your doctor was talking about the newer shingles vaccine, Shingrix? I believe that the older one (Zostavax) wasn't recommended for people who are immunocompromised because it's a live vaccine but that's not true for Shingrix?

                            Zostavax may no longer be in use:

                            Only registered and activated users can see links., Click Here To Register...
                            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

                            Comment


                              #44
                              Originally posted by agate View Post
                              Thanks for the link to that excellent article. It does say this about DNA vs. RNA:



                              This vaccine will involve one dose instead of two, and that really appeals to me. And it just might be available by February or March.

                              As for the shingles vaccine, are you sure that your doctor was talking about the newer shingles vaccine, Shingrix? I believe that the older one (Zostavax) wasn't recommended for people who are immunocompromised because it's a live vaccine but that's not true for Shingrix?

                              Zostavax may no longer be in use:

                              Only registered and activated users can see links., Click Here To Register...
                              Joan,
                              The post I made was from an MS friend. I will copy your response about the shingles vaccine and forward it to her.
                              Linda~~~~

                              Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..

                              Comment


                                #45
                                Well my coworker who has COVID19 just texted today and said "I feel worse". I'm not sure if the symptoms she has now are COVID or her other chronic conditions are kicking in very strongly but please pray for her. It does seem like a person's condition can worsen with COVID even after they show improvement like others were saying. Eek!
                                Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                                My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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