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    • #33291
      Jen Cueva
      Keymaster

      A new member, @agenbyte, shares her fear of suffocating to death. She says, ” I have had Rheumatoid Arthritis for nearly 30 years now. I am 77 now.

      Inexorably, the RA became Lupus, and the Lupus became Interstitial Lung disease, and that seems now become PH.

      Maximum 5 years to go. I seem to be coming to terms with dying, but the thought of suffocating to death is what I find daunting. Silly isn’t it.”

      As I mentioned, you’re not alone, Indira. The fear of suffocating to death is not silly at all. We all know how horrible it feels when we aren’t sure we will get another breath in some days, so this makes sense.

      Do you or have you fear(ed) suffocating to death because of PH? Please share your thoughts with us.

    • #33307
      Stephanie Mitchell
      Participant

      As I’m on a ventilator quite frequently, I have a fear of suffocation caused by something happening to the vent and not being able to manually ventilate myself with my AMBU bag. I alway have my AMBU bag close by when I’m on the vent. The problem is when I need to be on the vent, my muscles are very weak and I’m not able to bag myself for long with the AMBU if needed. Therefore, I’m dependent on my hubby to be close by and be able to bag me if my vent goes down for any reason.

      Also, due to my tracheotomy, I have to be suctioned frequently as I’m not able to manually cough up enough secretions. When I need suctioning, the feeling is one of not being able to get enough air and it’s easy to do down the rabbit hole of imagining yourself suffocating on your own secretions.

      I can sympathize with the OP on having a fear of suffocation. It can be terrifying depending on a machine to breathe for you and hoping that it never malfunctions.

      • #33322
        Jen Cueva
        Keymaster

        Hi @stephanie, I can only imagine how real this fear is for you on a vent. As a nurse, I’ve also suctioned patients before and constantly worried about affecting their breathing. This was why I did it in shorter periods than even taught. You being on the other side of that certainly opened my eyes. Now, I wonder how many patients had that fear while I was suctioning them. Most were calm, and some were dependent on trachs and vents, too.

        This would cause an increase in anxiety for me. How is your mental health since getting the trach and on a vent? You continue to push through as it’s your only option, I know. But this must cause some anxiety, fears, and a ton of feelings daily.

        Have you had to use the AMBU bag? Do they give you a backup vent in case you have any issues? YOu know, as they give us backup oxygen tanks for emergencies.

        Thanks for sharing your thoughts and concerns on this topic. I’m sending you much love from SD.

        • #33326
          Stephanie Mitchell
          Participant

          Hi Jen, thank you for sending your love. Love back to you and all my PHriends.

          I’ve come to terms with being on a ventilator. It’s reassuring knowing that it will provide adequate ventilation and oxygenation. My Trilogy vent has a history of being very reliable but there is always the possibility of it failing. Like I said, I always have my AMBU bag nearby just in case. We are on a priority list with our electric company for power restoration and we also have a backup whole house generator.

          If my vent were to fail, I’d have to be manually bagged until I can get to a hospital and be put on one of their ventilators. Our plan is for my hubby to bag me while we call EMS and have them transport me to the hospital. I will probably purchase a backup vent to keep at the house just in case.

          As for your question of using my AMBU bag, I use it before suctioning. I manually bag myself with 100% oxygen for three minutes before suctioning my trach. Then I’ll bag myself again for a couple of minutes at 100% oxygen and then reconnect to the vent. I also use the AMBU bag with 100% oxygen for the times that I’m not catheterized and have to get up and use the bathroom. I have enough strength to bag myself while going to the toilet. The above only applies if I’m not using inline suctioning. If I know I’m going to be on the vent continuously for a period of time, I’ll connect an inline suction catheter. That way I don’t have to disconnect from the vent circuit.

        • #33341
          Jen Cueva
          Keymaster

          Hi @stephanie, I’m in awe to read about the daily challenges you face with your trach and vent. I can’t begin to imagine how difficult this is when your MG flares. But, I’m grateful that you have such a supportive hubby. They certainly are our lifesavers.

          The plan to have a backup vent makes sense, and I can see how this would help reassure you if your vet malfunctions.

          I’m impressed that you can bag yourself at times. I’ve not seen anyone who could do this when I worked in nursing. Each time this teaching was needed, it was always a caregiver. Many of my HD patients had trachs, and a few had vents. This is most likely the reason.

          You’re such an inspiration and remind us that we can do anything handed to us. Have a great weekend, and take care.

    • #33311
      Brenda Denzler
      Participant

      I have had a fear of not being able to breathe for my whole life. I had a bad, bad asthma attack (they said it was) when I was 3 years old and couldn’t breathe. I also had a tonsillectomy at 5 years old during which I think I may not have been adequately anesthetized and experienced what felt to me like not being able to breathe. I’m guessing that this is where my fear of not being able to breathe has come from. The thing about dying that frightens me the most? Not being able to breathe deeply and fully. So as you can imagine, facing a PH diagnosis triggers these fears.

    • #33323
      Jen Cueva
      Keymaster

      Hey @brendad53, it sounds like trauma from your childhood health scares triggered this response for you. It’s only natural that you dread a PH diagnosis. Bt, I also know you need and deserve some answers. The sooner you get a diagnosis, the sooner you can start treatment which should offer some relief. Hopefully, that will help keep this fear at bay and your mental health a bit more balanced. You’ve been waiting too long for a proper diagnosis.

    • #33327
      Jill Upshaw
      Participant

      I had a procedure a couple of weeks ago. I had my 5L per canula and they put a mask on top of that at 10L. Talked to me about the tube, vent, etc and I assured them I was strong enough to get this part behind me. I did very well. But they did put a bite block in my mouth and I was really getting anxious about not being able to breathe and swallow. They put me under with Propathol and Ketamine. As they were doing that, I started easing down and for some reason, something in my brain told me to not be afraid and that I would feel this way when I die. I was then at ease and the procedure went well. Not trying to make any kind of statement other than I think if we surround ourselves with good attentive people, we will end peacefully.We all have fears but for some reason, I have been at ease since then.

      • #33328
        Stephanie Mitchell
        Participant

        Hi Jill, did they put the bite block in your mouth while you were still conscious?

      • #33342
        Jen Cueva
        Keymaster

        Hi @upshtcx, reading your post makes me anxious, so I can’t imagine how you feel. The bite block was given to you before sedation? From my experience, it’s most often done with sedation.

        I’m grateful that you finally felt at ease. You bring up a great point, “I think if we surround ourselves with good attentive people, we will end peacefully.”

        Although this sounds a bit traumatic, it said as it ended well for you; that’s a blessing!

        • #33347
          Jill Upshaw
          Participant

          It was before sedation. They talked me through it. They wanted me to be able to swallow.

    • #33329
      Cathy Brown
      Participant

      This seems like a reasonable fear to me, and I’m glad she brought this up. I think we try so hard to be optimistic and positive in these support groups that sometimes we shy away from this subject. I’m thinking that if you’re at the end stage, you would probably be working with your doctor and hospice to make it as comfortable as possible. They would probably give you medications to calm you and ease the pain, but I don’t know. I think that’s an important issue to bring up with your doctor. I know when my father finally died (after getting pneumonia following heart surgery and spending weeks in the ICU), my sister said it was really peaceful. I’m not sure there’s an easy way to die, but when I got this diagnosis, I consoled myself by thinking maybe I wouldn’t live long enough to get Alzheimer’s like my mom did. Now my doc says I could live that long! Crazy how we think, huh?

      • #33333
        Colleen Steele
        Keymaster

        @catbrown offering hope and positivity to each other is helpful but I agree, it is important to address our mortality and all the concerns that PH places on it. As you know, my son received a heart and double-lung transplant and he would no longer be with us if he had not.

        I belonged to a social media support group for PH parents and thanks to people being open about what end stage PH is like, I knew when my son was at that point before the doctor had to tell us. Somehow it helped. I went into the “big” appointment already prepared that we were going to be told that it was time to list for transplant.

        As hard as it is to hear and talk about the end of life process and death, I believe it is a part of advocacy and awareness that shouldn’t be avoided.

      • #33343
        Jen Cueva
        Keymaster

        Well said, @catbrown. Because I worked in hospice care before my PH diagnosis, helping my patients and caregivers be at peace while offering dignity was my goal. It was never good to watch my patients die. But if I could show them peace and comfort, my job would be done, and my heart would be at ease.

        When it’s my time, I will choose hospice care because I know they help comfort the patients and their loved ones.

        We can offer hope while being realistic. It’s often a topic that isn’t brought up as much as it should. Thanks for your feedback.

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