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    • #31798
      Kelli Warden
      Participant

      I feel like a crazy person because I feel like everyone thinks my COVID fear is irrational.  I haven’t seen my grandson in almost 3 years and I’m sure my daughter was upset with me because I wouldn’t let her come see me. My husband and I haven’t eaten out since March 2020 and his sister was in town yesterday and he told me he was going to go eat breakfast with her and I freaked out. The thought of the restaurant in one of the most conservative cities in Texas scares the crap out of me. It’s to the point that I’m wondering if I’m agoraphobic but I still get out and go to the grocery store when I need to, I just take over the top precautions. I’m not sure if I should be posting this in the mental health board or the Covid board so forgive me if I put this in the wrong place. I just want some opinions on the fear I have. I just know I don’t want to be in the hospital with Covid and pulmonary hypertension right now.

    • #31799
      Colleen Steele
      Keymaster

      @kelli-paige we aren’t strict about where you post topics. If at least something you mention goes with a forum than that helps.

      This is a good question and I’m sure one many of us have had. I go with the standard, do what you feel you need to do to keep yourself safe. It’s just really hard to get others around you to practice the same amount of caution.

      Maybe evaluate what your quality of life has been over these past 3 years, because that is important to consider. I think there are steps we can take these days to protect both quality and quantity of life.

      For example, before being seen at a clinic or going in for a procedure, some hospitals are requiring Covid tests beforehand. You could think about requesting that from relatives who would like to visit. If you still feel nervous, ask them to wear a mask in your home or visit with them outside in an open area. You could also only meet with people who have been vaccinated.

      Just a suggestion. I’m interested to see what other members have to say.

    • #31805
      Kelli Warden
      Participant

      Thank you Colleen, I’m always interested in other peoples thoughts.

    • #31806
      Terry
      Participant

      G’Day Kellie,

      Mate  thats a good question . I’m assuming you have had the double jab yourself if not ……..  They say that if you are vaccinated and get covid the odds are it will be mild .How mild for PH sufferers I don’t know but I accept we have to live with Covid  . Thats not to say you can’t set out boundaries for your own wellbeing and peace of mind but be mindful of not becoming paranoid. What Colleen says is on the button  ‘no jab no entry ,wear a mask inside’ . IMO until most of population are  vaccinated ,like for the flu, restaurants are one place where I would be selective . Outdoors ok, decent ventilation and spacing between tables ok, waiter wears a mask ok .

      But then again I’m living in a country with rules on what we can do and where we can go re covid until we get to 80% vaccinated later this year.

       

       

      .

       

    • #31807
      Roger Bliss
      Participant

      I don’t think anyone can tell you how to deal with this. I can tell you how I deal with it. First off I have CLL (a form of Leukemia) along with PH. My odds of surviving covod aren’t good. I got my 2 vaccines last winter and just got a booster the other day. The vaccine doesn’t work well with Leukemia or patients with organ transplants.

      Things make me nervous, but I don’t let it drive me nuts. My wife just got her 1st covid shot a couple weeks ago. Our son, his wife and granddaughter were up here for a week or so. The kids have all had covid and got over it. However, they have a tendency to go out. They spent a day at the State Fair. I still hope they didn’t give me the bug from the fair. I am glad my wife finally got her first covid shot as I was nervous over that. Only reason she got it was so we could drive through Canada and get to AZ for the winter.

      I pretty much go to work, where my risk is minimal. I do go to stores etc, but stay home a lot. Then again I lived like that before covid. You have to find a happy medium between driving yourself nuts over covid and living your life.

    • #31809
      Kelli Warden
      Participant

      Thanks for the answers, I really appreciate the opinions. I live in the Permian Basin in Texas, a very right wing oil town & it’s barely 40% vaccinated. I’ll keep on doing what I’m doing because it makes me feel safest. Have a great, safe day y’all.

      • #31812
        Jen Cueva
        Keymaster

        Hi @kelli-paige, you are not crazy, but this COVID stuff can certainly makes us think so.

        I also live in Texas, outside of Houston, so I also understand that concern.

        Everyone has offered some excellent support and tips. I do think that we all must do what we feel is safest for our families and us.

        I ended up with COVID last year. My hubby is an essential worker, and we think we both got it from his work. We were super cautious. I almost did not make it.

        My PH team would not allow me to get the vaccine for a while. I was extremely paranoid while waiting. For me, taking those extra precautions for so long was in my head. I still experience anxiety in some areas. I refuse to eat indoors here. I have grocery pick up or delivery.

        But, I also went to celebrate my daughter’s birthday with her in San Diego last month. We almost canceled, but I am grateful that we did not. It was unbelievable the difference in people there versus here. No one was in my space. We ate most of the time outdoors. Many were wearing masks and taking precautions themselves.

        Sorry this ended up so long. My main point is to show how we must make these decisions when they come up based on how we feel.

        For me, it can often be a struggle to find a balance of taking enough precautions while trying to have some quality of life. Does that make sense?

        This is an excellent question and valid concern, Kelly.

    • #31813
      Kelli Warden
      Participant

      I appreciate the response Jen…..good answer. Would you mind elaborating more on your COVID experience? Did you have to be hospitalized? I would really like to hear about it. I know everyone has a different experience.

      • #31815
        Jen Cueva
        Keymaster

        Hi, @kelli-paige; yes, I was hospitalized after a week or 2 at home with no improvement. I ended up in ICU.

        Ironically, this week my column shares a little more about that. But more on post-COVID. Here is a column sharing a bit on my COVID experience.

        I have a few other columns about COVID after that. And look out this Wednesday for my newest update.

        Take care and stay safe, my PHriend.

      • #31873
        Joyce Sandberg
        Participant

        Hi,

        Last April I booked a future cruise for December 2021 to celebrate my birthday.  I was optimistic that Covid would have settled down and in control.  In reevaluating the present Covid situation, we decided to cancel with Carnival.  While cancelling, I was told that oxygen users would not be allowed to cruise at this time.  I was never given notification of their new policy.  As it did not matter, as we were not feeling comfortable going as their policy allowed for a percentage of non vaccinated guest aboard as long as certain protocols were followed.

        They offered a full refund or an upgrade with perks for a future cruise.  We decided to take the refund at this time.

        There are 3 cruise lines that are not allowing oxygen users on board,

        Carnival, Princess and I believe the 3rd to be Norweigian.

        So much for planning ahead.

        • #31879
          Jen Cueva
          Keymaster

          Oh No, @joyce-sandberg, I am sorry about your birthday cruise plans. I know that you and your husband made this decision to protect yourselves.

          But, that is crazy that they did not call or notify you of this new policy about those of us on oxygen. Interesting that you found several cruise lines with this or similar policies.

          Thank you for sharing this information in case others plan a cruise.

          Again, sorry about the cancellation of your big birthday celebration. You would have thought when you booked it that COVID would be a memory only. Sadly, it seems like it’s here for a bit longer.

        • #31884
          Colleen Steele
          Keymaster

          @joyce-sandberg I have heard that there are a number of cruise lines not allowing oxygen dependent passengers on board. I question how much it is a safety concern and how much it is to keep other passengers from worrying that the O2 need is Covid related.

          In any case, I’m sorry you had to make the decision not to go and upset for you that you weren’t notified about the oxygen to begin with. What if you hadn’t canceled.

          I do think there are some cruise lines that allow oxygen but I don’t know who they are.

    • #31826
      Kelli Warden
      Participant

      Jen-

      Thanks so much, I’m going to read them all! 🤗

      • #31827
        Kelli Warden
        Participant

        Jen,  I read your column & couldn’t stop my tears. I’m so glad you made it through that, that was so traumatic. I immediately went to Instagram to see if I could find you to follow and realized I was already following you. Thank you for sharing your experiences with our community.

        • #31837
          Jen Cueva
          Keymaster

          Aww, @kelli-paige, you are so sweet. I am sorry that it had you in tears. It was one long journey or is, I should say. Your words mean so much.

          Oh, I am like you as I often am not sure if I follow someone or not. I usually have to double-check if they ask. I need to work on that. I try to do social media on Wednesdays, but I am on more or less some weeks.

          I am grateful that you enjoyed my column between the tears. LMK if you have a favorite one.

    • #31829
      Mendo Bruce
      Participant

      Kelli,

      Are you vaccinated? If it has been more than 6 months since your 2nd shot, have you had a booster?

      If you have been fully vaccinated, I think visiting with others who have been vaccinated and even going to indoor spots (that aren’t very crowded) would be reasonably safe despite the low vaccination rates.

      The odds of getting serious symptomatic disease is still very slight, even with this Delta variant.

      A lot depends on your risk tolerance, which is obviously very low, but I still won’t have contact with unvaccinated children or allow them in my house but I do allow unvaccinated adults in the house as long as they keep their distance and there is a window open and good ventilation at the time.

    • #31832
      Aunt Lizzie
      Participant

      Kelli, I think you are probably being as cautious as you need to be.  Do try not to get too worried or stressed about things though.  As long as you are doing what is right for you, that’s all you can do.  I have spoken to a couple of friends who have expressed a bit of concern about becoming agoraphobic.  It had occurred to me also.  I do believe that we won’t be going back to the way things were for a very long time – that’s kind of sad, but inevitable.  Anyway – I never did like big shopping centres or crowded places, but a coffee in a nice cafe with a friend – that I miss.  Stay safe.

    • #31834
      Hall Skåra
      Participant

      I have PH and was very cautions before I got vaccinated. Now I am much more relaxed as I’ve been fully vaccinated for more than half a year. I don’t have any problems meeting other people, going to the store, etc. However, I still take my precautions by frequently washing my hands, keep social distancing, etc.

      I also feel very safe here in my small home town in Norway where more than 97 % of the population above 18 years of age have been vaccinated.

    • #31838
      Jen Cueva
      Keymaster

      Thank you, @mendo-bruce, @auntlizzie, and @hall-skara, for sharing your thoughts with us. I am certain that @kelli-paige appreciates you sharing your experiences.

      It certainly does depend on our bodies and also the area that we live in. For instance, I am in Texas and limited more here. But when in San Diego, CA, I was more relaxed, we were vaccinated, ate outdoors, and most activities were outside.

      Kelli, we all can share our experiences, but in the end, you will do what you feel is best for you. Sharing helps us know that others are struggling with this but at different levels. We respect whatever decisions you make.

      Is this helpful for you?

    • #31845
      Kelli Warden
      Participant

      Thanks all for answering, I love hearing others opinion. @hall-skara I’m jealous of living in Norway with such a high vaccination percentage. I am in Texas & in the Permian Basin which is oil country & mostly conservative. 70% of the people here do not believe in the vaccination & are so careless.

      I will keep on doing what I do & being overly cautious, doing what is right for me. Thanks again, I love these forums.

      • #31848
        Colleen Steele
        Keymaster

        @kelli-paige I believe that when it comes down to it – you have to do what you feel is best for you. It is a good topic though and it has been interesting hearing out everyone’s perspective. So happy to hear that you are enjoying the forums. I look forward to hearing more from you in the future.

    • #31857
      Meghan Nevada
      Participant

      Just keep in mind that life is unexpected and there is only so much within your control. Life is too short to miss out things that make life worth living, like seeing loved ones and friends.

      • #31863
        Colleen Steele
        Keymaster

        I respect Kelli’s point of view because there have been many, many times overs, even pre-pandemic, that I felt the need to be what others might consider “overly” cautious when it came to protecting Cullen.

        However, I have also thought the way you do @mknevada. I take it from the perspective on my son’s transplant. There is so many things that can be detrimental to his new organs and he (and out family) take great care in protecting them, but we also want him to enjoy and celebrate life.

        We took a family trip to Utah 7 years ago after his transplant but Cullen hasn’t traveled since. He is now planning a trip to NJ with me to visit my parents again. We will do everything possible to try and protect him as we travel. He is so excited and his grandparents, who haven’t seen him in 5 years, are thrilled too.

      • #31878
        Jen Cueva
        Keymaster

        This has been such an intriguing topic, @kelli-paige. It allows us to read about others’ views about such an important topic that has seemed ongoing, I know for me.

        How have you been? @mknevada, I am so happy to see you pop in. I love your perspective, too. Life is too short. I thought that I lived by that, then COVID took over my body. Living my life and enjoying those we love is more important now than before. I don’t even begin to know how to explain this.


        @colleensteele
        , I am so excited and happy that Cullen will get to make this trip with you to see his grandparents. That is so important, and I know you, and he both are extra precautions. I am looking forward to hearing about this and seeing some pictures. Maybe this will be a column piece.

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