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    • #26310
      Jen Cueva
      Keymaster

      A few weeks back, most of y’all know that I was hospitalized. I had some “seizure-like” activity that my PH doctor thinks is more Neuro and thus needs further testing. I did consult with a Neuro team inpatient but needed an outpatient Neurologist to follow-up. I find the recent post discussing this to be ironic.

       

      I was also having some pre-fainting or pre-syncope spells and I continue to have this feeling and feel lightheaded. I am awaiting a virtual visit with the outpatient neurologist and insurance approval on some other testing the PH doctor wants.

      In the meantime, I wanted to share my most recent column. I write a bit more about my experience. I often struggle with if something is PH related or something more. Do you struggle with this? How do you handle this?

      Give it a read and let’s talk about it.

    • #26342
      Jimi Mcintosh
      Participant

      I like you are never certain if the “chicken came before the egg”. Anything new is it related to the PH, or is totally something new, I experienced the spinning,light-hardiness, nausea and feeling faint. Now it is “cataracts, holes in macular,poly cystic kidney with a structure, holding fluid”, thank God it is not COVID-19.

      Yesterday looking thru hospital records from March it was noted left chamber enlargement , stricture, angina and kidney holding fluid. None of this was discussed before being discharged, cardiologist stated that some, if not all maybe contributing to PH. Weight-gain and anemia were risk factors.

      I would just love to get someone to list my illness’ in a flow chart, that shows what is the main priority and if all of these planned surgeries and test will improve my quality of life. There are days when I feel lost and hopeless, like climbing in my bed and waiting it out. What do I treat with the highest priority and what things, if removed or fixed will not change the longevity or quality of life.

      Being able to discuss these things with our group, makes me feel a part of something greater and I am not alone. Our sharing makes me realize that we all suffer with similar medical issues at different stages. We are all different, but so similiar. COVID 19 is causing some of the critical patients to experience breathing issues, serious fatigue and limb weakness. Is PH just another “opportunist virus” that attacks our bodies, when triggered and may respond to an antibody.

    • #26347
      V.R. Peterson
      Participant

      I’m so sorry you experienced this, and just as sorry that you don’t have an answer yet. @jenc, you’re in my thoughts and prayers as you work your way through yet another maze of health issues.

    • #26352
      Jen Cueva
      Keymaster

      Big hugs, @jimi! My heart aches for you as I understand what you mean. There are times when I want to run and hide. Well, I cannot run-hehe. But under the covers is usually more like it.

      I agree that having the forums to share our feelings and experiences helps a ton! We learn that we are not alone. Being a patient is frustrating, and each condition that we add to PH complicates things that much more.

      Just this morning, I told my pain nurse, “my first about 10 years with PH was easy when I look back. Then my kidneys were involved, then it just spiraled.” Life with PH is far from easy, but I meant as I look back, it was less complicated then when trying to do procedures or add a new medication. Maybe If I had a huge check-list attached to my body that would alarm them.

      I am sorry that you, too, are finding yourself dealing with this. Thinking of you and sending prayers that you will get answers, also. Take care, buddy.

    • #26353
      Jen Cueva
      Keymaster

      Thank you, @mamabear007, for your thoughts and prayers. As you know, not having the answers and the patience to get them is the worst part!

      How are you doing this week? Are you still making masks? How are your son and his wife (nurse) doing? COVID is still in most areas; how are things there? Hugs.

    • #26361
      Colleen Steele
      Keymaster

      @jimi I think “outsiders”, even when sympathetic to the PH, really have no clue just how much patients have to fight for their life. They don’t realize that often it’s not just PH but a tumultuous affair between the disease and co-existing conditions. You are going through a lot and many of us, I’m sure – caregivers included, can relate to days of wanting to climb into bed and stay there.

      You worded so well the feeling of understanding and support that the PH forums provide. It makes Jen and I so happy when we hear that the forums are helping others as much as they do us. Thank you for always being open to sharing your story and emotions. We are all in this together.

    • #26365
      V.R. Peterson
      Participant

      Thank you, @jenc. I’m not currently making masks. I’ve got several that only need the casing sewn on before they’re done. I got burnt out a bit, but I’ve got plenty of fabric, filter fabric and elastic so I can start again. Everybody in my life who wanted one (or more) now have them, so the rest will go to charity. I just need to get up the gumption to start cutting and sewing again.

      Oh, and the family and I are well.

    • #26377
      Jen Cueva
      Keymaster

      Well said, @colleensteele! We are in this together! I am amazed daily at the support and vulnerability shown by this amazing group. It makes my heart happy.


      @mamabear007
      , I am happy to hear that you and the family are doing well and staying safe. I can imagine you are burnt out after months of making masks. What hoppy are you doing now? You are always doing something to keep busy.

    • #26388
      V.R. Peterson
      Participant

      @jenc, I’m working on a crocheted afghan for a friend. Her mother passed before it was finished, and she asked me to finish it so she could have something to remember her mom.

      How are you doing? Any answers yet?

    • #26394
      Jen Cueva
      Keymaster

      Hi @mamabear007, I am sorry to hear about your friend’s mom passing. I am happy that you are finishing it for her as a moment. That will be something that she can hold on to as a comforting memory of her mom.

      Thanks, no answers yet. Unfortunately, I have a snag with insurance again. I will remain hopeful. I appreciate your support.

    • #26412
      V.R. Peterson
      Participant

      @jenc, I’m praying that you find resolution soon.

    • #26414
      Jen Cueva
      Keymaster

      Thank you, @mamabear007, you are so kind and thoughtful. I hope so, too. I hope your week is going well.

      -Hugs from Texas

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