• Colleen,

    I am not a candidate for transplant, but I do continue to have goals and dreams. One of the things that I have been reminded of recently because of my nephew playing is my desire to get back on the ice again. I am not sure if that will ever happen, especially in a competitive setting. But hockey was always something that helped relieve…[Read more]

  • Brittany Foster posted a new activity comment 2 days, 4 hours ago

    Kathy,

    I have never heard of CBD flowers. Is this something that is edible or is it something that you use the oils or scent from? Just curious about how that works ! I have heard of a lot of edible products and oils, but not the flowers.

    • @colleensteele and @mamabear007 thank you both for your well wishes and thoughts. Colleen, this has also happened to me more often than not. Especially when it has to do with my breathing or something after surgery. I usually end up with some type of collapse in the lower part of my lungs after I am given sedation. Usually it is a typical response…[Read more]

    • Brittany Foster posted a new activity comment 2 days, 6 hours ago

      Hi Naresh,

      I wanted to welcome you to the PH forums. Colleen Steele and I are both the forum moderators for the group. From looking over your profile it looks like you have congenital heart disease with your ASD and the PH. Is the congenital heart defect what has caused your PH for you? You certainly aren’t alone with that. I also have a…

      [Read more]

      • Hi Foster,
        Thank you. I am having ASD by birth came to know about it in 2009 and my doctor said it cannot be repaid because of PAH. But at that time I did not had any symptoms and they put me on sildinafil, digoxin, blood thinner & furosemide. But later i slowly started experiencing shortness of breath. In 2015 I stopped Furosemide and my…

        [Read more]

    • Brittany Foster posted a new activity comment 2 days, 6 hours ago

      Joanne,

      This is a great idea to get them off of a site if you can. Usually I get my laxatives off of a site too because they come in up to 200 quantity. When I use 5 a day it ends up running out pretty quickly so I’d rather buy more when I can. Good suggestion! Thank you !

      • Janet,

        Thank you so much for the prayers and for your support. That really means a lot to me. I will keep everyone updated on how things go.

      • Do you have PH and liver disease. Either fatty liver, fibrosis, liver cirrhosis etc? On past imaging studies it was suspected that I have fatty liver disease. I am not a drinker but liver disease is something that many with heart conditions end up developing. A lot of those in the congenital heart disease community now see a liver specialist as…[Read more]

        • Brittany, your comment about not being a drinker brought to mind how vulnerable PH patients are to the assumptions of others.
        • Brittany Foster posted a new activity comment 2 days, 9 hours ago

          Hi James,

          I am glad that you found these forums. This has been a great place to talk about symptoms, meds, treatments, or just every day life. So feel free to write a post at any time. I am one of the forum moderators with Colleen Steele. If you have any questions please don’t hesitate to ask. I see that you were originally just given…

          [Read more]

        • Brittany Foster posted a new activity comment 2 days, 9 hours ago

          Hi Sandra,

          I am one of the forum moderators with Colleen Steele. Welcome to the forums ! Please reach out to either of us if you have any questions at all. I saw from your profile that you have a combination of treatments and therapies that you are currently on. How have these been working for you? What do you feel like is benefiting you…

          [Read more]

        • Brittany Foster posted a new activity comment 2 days, 9 hours ago

          Lizzie,

          I love that last part “the faster you walk the longer you live” My great great aunt who lived well into her 90s walked every single day EVERYWHERE. She never owned a car. She would carry all groceries back and forth to her small house in what would be considered a really poor area. But she was amazing and had so much stamina. In…

          [Read more]

        • The tube saga continues for me. I just wish that things could go smoothly with my feeding tubes. But unfortunately, as many of you who have been following know, that hasn’t been the case. I am not the only feeding tube patient that has had difficulty with sizing of tubes, placement of tubes, and the comfort of them.

          My last trip to the hospital…[Read more]

        • Brittany Foster posted a new activity comment 3 days, 3 hours ago

          Kathy,

          This is good to know for those that are interested in trying CBD products etc. I would be on the side of caution when it comes to smoking anything though, especially with vaping. It has the same dangerous side effects as smoking tobacco. Before doing this it definitely would be wise to talk about it with a doctor.

          • Brittany Foster posted a new activity comment 3 days, 8 hours ago

            @kylie2002 Thank you for sharing your story with us. I also have a few nodules on my lungs that they watch with xray and ct scan. I am sorry to hear that you have had those bouts of bronchitis. Have you been given a right heart cath to determine your pulmonary pressures or did they see the elevated pressures on the echo? I had a bronchoscopy…

            [Read more]

            • Thank you so much for ur response. You made me feel a lot better and a laugh is nice too ! Knowing someone with PH had a bronchoscopy and got thru it helps. The dr said it’s high risk cause of the PH so I’ve been terrified. Looking forward to learning more about PH and all of you too ! Thank you!!
              • Bronchoscopy went fine yesterday . They said might cough up some blood but I had not until this afternoon. I guess still within normal but still unsettling to see now . Did that happen for you Brittany?
              • @steelcity Thank you so much! I really appreciate your kindness. I hope that you are having a good day so far. As GOOD as it can be !

              • Brittany Foster posted a new activity comment 4 days, 5 hours ago

                Shannon,

                I am so sorry to read this about having to stay in bed. As always, you can come to the forums and chat with us here any time of day and we will always do our best to get back to you pretty quickly. I usually do other work for BioNews during the day so I am on for a few hours here and there through the day but try my hardest to get…

                [Read more]

              • @shannon4jk I totally understand the feeling of being like you are drowning without being in any water. Sometimes that is how it feels when I try to take breaths in, especially after working out. And oddly enough, this DID happen to me and my legs hurt like this and I became really dizzy and on the verge of collapsing. This is what sent me to the…[Read more]

              • Brittany Foster posted a new activity comment 4 days, 5 hours ago

                Hey Shannon,

                I know this post was for Joyce but I just wanted to respond too. Especially about the diarrhea while travelling and making sure to stay hydrated. Something that has helped me with restoring hydration is a combo of water and something with electrolytes in it like Gatorade. You have to make sure that you have the two in combo…

                [Read more]

              • Sometimes with the start of a new year comes different regulations on medications either because of the state regulations or because of the pharmacy regulations. I have noticed this with my refill of some of my pain medications. My doctor was giving me a larger amount to last me a few months, but with the new regulations it is only allowed a…[Read more]

              • @margie-novak so true ! It is so crazy that medicines that we really need can be almost impossible to open. I have even been in hospitals where the nurses take FOREVER and have to get out these special scissors to even open up a medication that I really need in a timely manner . The healthcare system can be crazy that way ! It is a good idea…[Read more]

              • @steelcity so true and a much needed reminder to take things slow and actually stop to enjoy things in life. I feel like I have been so used to living in fast forward and always looking towards the next thing instead of just taking time to appreciate the here and now. It’s hard to maintain this mindset but on really hard days I have to be reminded…[Read more]

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