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  • Tracey replied to the topic Update on Tracey in the forum Upcoming Procedures 1 week ago

    Hi everyone,

    Thanks for the positive thoughts and prayers. It has been so helpful knowing that there are people out there who understand what I’m going through.

    I had a balloon inserted via angiogram on Wednesday to open up my mitral valve and thankfully that seems to have worked for my heart. Fortunately the Professor doing the procedure…[Read more]

  • Hi @colleensteele it did make it extremely difficult to quit and I, together with a nation of other smokers, felt really resentful because the decision to ban tobacco made no sense. It was a politically motivated decision by a corrupt government

    Will I start smoking again?? My head screams no bur my body screams YES PLLEASE. You’d think after 3…[Read more]

  • @kelliwarden dont be embarrassed quitting is one of the toughest things I’ve had to do. It really is very difficult and being thrust into the situation has actually made it more difficult because you’re resenting that this is not something you choose to do
    Some organizations have actually taken the government to court over this test the…[Read more]

  • Hi Everyone,

    This forum and particularly this topic couldn’t have been more timely for me.

    I was brought up with a very strong work ethic and have always been taught that I have to make my own way in life.

    I have had my own business since 2000 and have given every ounce of my soul to making it work and succeed. I love the work I do and even…[Read more]

  • Thank you everyone for the suggestions and support. It is great to know you’re not alone.

  • Hehehe I have the most wicked and detrimental of all vices- smoking too much for too long.

    When I was first diagnosed I went cold Turkey and that lasted about 3 months but then I couldn’t anymore and I started again.

    Fast forward Corona virus. When my government announced lockdown they also announced the banning of the sale of all tobacco and…[Read more]

  • Hi @jenc

    Yes I was booked in to see everyone on the 30th but having spoken to my doctor tomorrow we decided to bring that up to next week Wednesday. The doc is concerned about the fatigue and fluid retention.

    Hold thumbs it’s just a say trip.

    The fur babies love having someone new to run round the garden with them.

  • I’m limited to 1L of fluid a day – difficult for a coffeeholic – and 80mg of Lasix

    But I’m still battling with fluid retention. Its always in my ankles and lower lega and particularly my belly. I often look a good few months pregnant.

  • Hi Everyone,

    Thanks for the topic. I’m new on all these meds and had an epic stomach failure in my living room the other day. I stood up to go to the kitchen and with no warning it was flooding down my legs.

    Even though I was alone I was absolutely mortified, but thanks to all your s***ty stories I feel so much better 🤗

  • Hi @jenc
    At the moment I am finding it impossible to carry out dialy activities. Getting up for a cup of coffee in the morning is about the extent of my daily activity

    I’m not sure if it’s the PH or the heart failure that is causing this exhaustion but I’m probably sleeping about 18 hours a day.

    I’ve managed to find a part time helper 🤗 so he…[Read more]

  • Tracey changed their profile picture 1 month ago

  • Hi Everyone,

    I guess my diagnosis was almost by accident. When I think back now the signs were there for a long time but totally misunderstood.

    As you know I come from a 14 year background with lupus so I am so accustomed to feeling ill that its normal for me. For me it’s a good day if I can get out of bed without wanting to cry.

    I think it’s…[Read more]

  • Tracey replied to the topic Welcome Tracey in the forum Welcome! 1 month ago

    Hi Everyone from a very chilly little village in SA

    @dawnt thanks for the response. I guess I just have to get my head around the PH. It’s funny I’ve lived with Lupus for so long and it never scared me or felt like it was threatening. This just seems different to me. I think its because the diagnosis was around such traumatic circumstances and…[Read more]

  • Gee, I’d love to attend that but its 3am South African time. Nothing keeps me from 😴

  • Tracey posted a new activity comment 1 month, 1 week ago

    HI Jen,
    Forgive me if I’m repeating myself, I sent you a long post on my emotional state and happy to share the post, but don’t see it here. Please let me know if yo got it or not because I really would like to share what I said with someone.
    • Tracey posted a new activity comment 1 month, 1 week ago

      Hi Jen,
      Yes more than happy for your to share my story.

      Unfortunately there isn’t much of a social security system here, our government and health system are so broken that if you can’t afford to go private you’re in big trouble. Fortunately my medical insurance covers my doctors visits, tests, meds and hospitalisations but does not…

      [Read more]

      • I am sharing this now, Tracey.

        It is only natural to struggle with all that you are dealing with. I am grateful that you have a psychologist to talk to. I am hopeful that you can find some resolution and assistance for a caregiver, even if part-time.

      • Hi Everyone,

        I’m new here, and find this discussion absolutely fascinating. Approximately 5 years ago I went for an eye test and was told by the optometrist that I needed to see an Ophthalmologist, who diagnosed me with cataracts. I went on to have cataract removal surgery, but really have not been able to see any better since the surgery. I…[Read more]

      • Tracey posted a new activity comment 1 month, 1 week ago

        Hi Jen,

        Thanks for the welcome. It has been a very challenging time for me. My doctors put me into lockdown as soon as the news of COVID-19 came out of China so I have been isolated for quite some time now.

        I live in a very small village in the province of Mpumalanga in South Africa which is very rural, but being in such a small…

        [Read more]

        • Thank you, Tracey, for sharing your story. Do you mind if I share this in a post?

          I am grateful that you are staying safe. Yes, my parents are in a small rural area, and that helps during this pandemic. The isolation is the worst part. It sounds like you have some amazing friends who love and support you.

          I am sorry to hear that you have…

          [Read more]

          • Hi Jen,
            Yes more than happy for your to share my story.

            Unfortunately there isn’t much of a social security system here, our government and health system are so broken that if you can’t afford to go private you’re in big trouble. Fortunately my medical insurance covers my doctors visits, tests, meds and hospitalisations but does not…

            [Read more]

            • I am sharing this now, Tracey.

              It is only natural to struggle with all that you are dealing with. I am grateful that you have a psychologist to talk to. I am hopeful that you can find some resolution and assistance for a caregiver, even if part-time.

            • HI Jen,
              Forgive me if I’m repeating myself, I sent you a long post on my emotional state and happy to share the post, but don’t see it here. Please let me know if yo got it or not because I really would like to share what I said with someone.
          • Tracey became a registered member 1 month, 1 week ago

            • Hi Tracey, welcome to the PH forums. I am Jen, one of the forum moderators along with Colleen Steele and Brittany Foster. I am hopeful that you will find some support here and help others by sharing your experiences. Please feel free to contact one of us if you have questions about our forums.

              I read that you have lupus, with your PH. How are…[Read more]

              • Hi Jen,

                Thanks for the welcome. It has been a very challenging time for me. My doctors put me into lockdown as soon as the news of COVID-19 came out of China so I have been isolated for quite some time now.

                I live in a very small village in the province of Mpumalanga in South Africa which is very rural, but being in such a small…

                [Read more]

                • Thank you, Tracey, for sharing your story. Do you mind if I share this in a post?

                  I am grateful that you are staying safe. Yes, my parents are in a small rural area, and that helps during this pandemic. The isolation is the worst part. It sounds like you have some amazing friends who love and support you.

                  I am sorry to hear that you have…

                  [Read more]

                  • Hi Jen,
                    Yes more than happy for your to share my story.

                    Unfortunately there isn’t much of a social security system here, our government and health system are so broken that if you can’t afford to go private you’re in big trouble. Fortunately my medical insurance covers my doctors visits, tests, meds and hospitalisations but does not…

                    [Read more]

                    • I am sharing this now, Tracey.

                      It is only natural to struggle with all that you are dealing with. I am grateful that you have a psychologist to talk to. I am hopeful that you can find some resolution and assistance for a caregiver, even if part-time.

                    • HI Jen,
                      Forgive me if I’m repeating myself, I sent you a long post on my emotional state and happy to share the post, but don’t see it here. Please let me know if yo got it or not because I really would like to share what I said with someone.
                • Welcome Tracey, to the PH Forums! I am one of the forum moderators here along with Brittany Foster and Jen Cueva. Let us know if you have any questions about using the forums. I’m certain that you will receive lot’s of support and information here and help others based on your own experience.
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