• Hey @contrarymary, I have not been on in a week or so. How are things going for you? If you posted an update in another area, I apologize. I checked some. But I did not see you, so I wanted to check in at your party.

  • This must be a very difficult task. I know that with my Grandma having DEmentia, that alone is tough. ( She does not have PH, other health issues, though) Adding Dementia to PH cannot be easy. I would suggest that caregivers take time for themselves.

    I know that for me, my Grandma not knowing me or even where she is at at times is very hard to…[Read more]

  • Hi Shannon, I have been on Upravi since just after it was FDA approved. I agree with you to let your doctor know to wait before you increase the dosage. I know that with me, a few times during increases, I had to wait an extra week. My PH doctor had warned me that I may need to do that. Your body needs time to adjust. Some need more time than…[Read more]

  • I also have a home fill set -up. I refill 2 small tanks with that. I also use that concentrator at night. The fills seem to take forever. It is good to know that maybe a larger concentrator may help. I have never heard that but it makes sense.

    I also now have an INogen POC. I like to take that if I am busy for more than a few hours. I like that…[Read more]

  • Hehe @brittany-foster, I sent it to my hubby. He says he would get even bigger calves pedaling that. I would not be a great driver, either.

    • LOL I definitely would NOT be in the driver seat on that one. My boyfriend is more than double my body weight so that’s a big HECK NO from me hahaha! He actually does some of his arm workouts by just lifting me up and curling my weight lmfao. It’s hilarious actually and funny for me!
    • HeHe @brittany-foster, that doctor sounds cool. I love it!
      I do not have a “hospital clothes drawer” but l have a bag and my hubby and daughter know what I need usually. I like the idea that you and your Mom do, buy new PJs when you have a planned hospital stay. I would add unplanned visits, anyone can go to TJ Maxx or Marshalls and pick me up a…[Read more]

    • Wow, so cool! I have not seen a bike like this. I know I have tried the E-Bikes, electric, and was still exhausted afterward. Like Brittany, I have been on a bike where 2 people pedal and I would pedal a little and take breaks. This was in Galveston. I will have to show my hubby this bike.

      Thanks so much for sharing, @colleensteele. I hope that…[Read more]

    • Too funny, ladies. I think that Denise needs to share the link to her comfy Bali bra. I had 2 appointments earlier and I am back home and ” braless”. I am glad that I am NOT the only one that seems to be I PJs more than. “real ” clothes.
      Some days, getting dressed just takes too much time. Let’s not forget about the extra laundry. Just a few days…[Read more]

    • Jen Cueva posted a new activity comment 2 weeks, 4 days ago

      LOL, Brittany and Colleen- I felt like they were calling me out, but that is OK. I felt like I made the news and a positive way.
      • Jen Cueva posted a new activity comment 2 weeks, 4 days ago

        Hey Brittany, I do have more leg pains at night. For me, I think it is a lack of movement and blood flow.
        • Jen Cueva posted a new activity comment 2 weeks, 4 days ago

          Brittany, you do not how happy this makes me know that you made it to Philly! I am sure that you will do amazing and excited to hear more about your trip.

          I like your thinking, “taking advantage of NOT being in the hospital”. You so deserve a break. Enjoy Philly, have a safe trip home.

          • Jen Cueva posted a new activity comment 2 weeks, 4 days ago

            Thanks, Colleen, I know that you mentioned that, too. I was just reminding others who may pop in.

            I hope that y’all are doing well at your house for the new year.

            • Jen Cueva posted a new activity comment 2 weeks, 4 days ago

              Hey Brittany, For me, if I am purchasing shoes, I tend to shop later in the day when my feet are the most swollen. I would suggest this for your ring, too. Some days, I can barely take my rings off and on. I have had them resized a few times through the years, Hehe

              I am sure that you will be fine. They also make these bands inside that are…

              [Read more]

            • Hi Colleen and Brittany,
              Sorry, I’m late to the party here, hehe

              I am like Brittany and retain fluid easier so I’m on fluid restriction. It’s a balance game for me depending on what I’ve eaten, physical activity, and the weather, etc..

              Colleen, I think I recall before that you said that your son drinks that much water. I think that’s gre…[Read more]

              • Jen,
                My hands and face easily swell depending on what I have eaten too ! I feel like that and the weather are the two top contributors to extra fluid retention. I swear even if I eat like 2 bites of Chinese food the next day I am so swollen. I am worried about getting my engagement ring back! I hope I got it sized on a day where my hands were in…[Read more]

                • Hey Brittany, For me, if I am purchasing shoes, I tend to shop later in the day when my feet are the most swollen. I would suggest this for your ring, too. Some days, I can barely take my rings off and on. I have had them resized a few times through the years, Hehe

                  I am sure that you will be fine. They also make these bands inside that are…

                  [Read more]

              • Yes, very important point Jen, that we are all different. When he had PH he had to find a very fine balance for his water intake or else risk swelling and other problems. This 2.5 to 3 liter requirement is post-transplant and due to stage 3 kidney disease.
                  • Thanks, Colleen, I know that you mentioned that, too. I was just reminding others who may pop in.

                    I hope that y’all are doing well at your house for the new year.

                • Hi JoAnn, diuretics can certainly contribute to gout. They work on our kidneys. Gout is uric acid buildup that our kidneys cannot flush out.

                  I am on 3 diuretics, although we have worked on lowering them off and on. I do not take anything, like allopurinol, I only take meds then I have a flare-up. It certainly can be painful.

                  I also watch my…[Read more]

                  • I deal with more swelling in the summer too. That must be hard Jen with the fluid restriction and that summer heat too! I would probably just spray myself with a hose any chance that I could get LOL! I overheat so easily too which is funny because in the winter and colder months I can’t keep warm for a second but as soon as summer hits my body…[Read more]

                • Thank you for the kind words, Mary. That canoe trip was one of my first columns. I appreciate the support.

                  I know that you’ll be “ rocking” the Remodulin party.

                • Great question, Brittany. I have been on Revatio at large does for almost 15 years. I am aware of that as a side effect and I have had issues with my hearing off and on. I feel like that I am not hearing well like my ears are “plugged”. I do not have it constantly. I wonder if maybe it is at certain times when my Revatio is at its peak…[Read more]

                  • Jen ,

                    Yes I get that type of hearing too like someone has ear plugs in my ears or like I have them on while under water or something. I didn’t even think about getting it officially tested at a doctor’s office. This would probably be a good idea as a next step for me. I know that over the years my eyes have been getting worse and worse. I used…[Read more]

                • Hi Sarah,
                  I am sorry to hear that you have now been diagnosed with COPD. That has to be tough when already dealing with PH. I hope that now with both diagnoses that you will be treated with the best treatments for you and get some relief.

                  What is your most bothersome symptom? Did they change or add anything new with the COPD diagnosis?

                • Well, after reading the previous comments, I feel like I am pretty boring. Hehe

                  I have a few appointments with my hematologist/oncologist. I have an Echo and a follow up with my PH doctor, too. I forget the exact dates but these are in January. I also have a dental appointment that I am most dreading, after not making it last year. Those…[Read more]

                  • Jen,
                    Your schedule looks a lot like mine! I am actually heading to Philly this morning and am on the bus now. I am going to the BioNews HQ there so I am looking forward to it. I was supposed to go twice already, once in October and once in December but both times I was in the hospital for. I might as well take advantage of the opportunity now…[Read more]

                    • Brittany, you do not how happy this makes me know that you made it to Philly! I am sure that you will do amazing and excited to hear more about your trip.

                      I like your thinking, “taking advantage of NOT being in the hospital”. You so deserve a break. Enjoy Philly, have a safe trip home.

                  • Oh, Mary, I love how you describe your transition as a party. It sounds like a pretty big party with lots of anxiety and nerves to add to your other party favors. It sounds like your PH team has explained the transition pretty well, and with much excitement. Hehe

                    Sending you positive vibes and prayers on Jan.7, and coping with the transition. The…[Read more]

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