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    • #24631
      Jen Cueva
      Keymaster

      Living with PH for over 15 years, I have heard about many who have changed their diets due to PH. I know some who are now vegan, low-carb or keto, whole-foods, and so many others. Have you changed your diet or eating habits since your PH diagnosis?

      For me, I eat like a toddler. I even have a blue small toddler plate that is divided into 3 sections. My hubby says that I eat like a bird. I tend to “graze” throughout the day. My appetite is decreased most days. Too often, after I cook dinner, I m too tired and short of breath. This makes eating more difficult.

      I use my oxygen some times to see if that helps. Because of this, I tend to go for chopped salads, soups, smoothies, grilled cheeses, and/or quesadilla. These foods are softer and require less chewing AKA oxygen. I love veggies, and although I am not vegan, I eat little meat.

      What dietary changes have you noticed since your PH diagnosis? Do you tend to “graze” like a toddler too? If so, how are you getting your nutritional intake each day?

    • #28742
      Jen Cueva
      Keymaster

      I was planning to post a similar new topic today but found this one. I am slowly getting some of my appetite is back. But, as before, I am eating like a toddler. I prefer finger foods, soups, and things that require less chewing and energy.

      Nutrition is so important when PHighting PH and other illnesses. We need to fuel our bodies.
      What about you? Do you think that your PH symptoms and/or PH treatments affect your appetite? Let’s talk more about this.

      • #28752
        Colleen Steele
        Keymaster

        Cullen was never a good eater. In fact, I had so much trouble nursing him the pediatrician said I had to switch to formula because he wasn’t getting enough nutrition. We were told his PH developed probably around when he became symptomatic at age 6, but I have always been suspicious that he was born with it. His inability to nurse is something I look back on and wonder if that was the first sign. His brother latched on right away, no problems.

        He was always a picky eater but as his PH progressed he started eating less and less. His doctor advised him to graze throughout the day, so that is what he would do. To believe it or not, he has always LOVED salad, and his doctor was always pleased with that. @mamabear007 are you saying your son’s doctor told him not to eat greenery? If so, what was the reason behind that?


        @jenc
        last year I wrote a column about this topic. In it are some tips on what Cullen use to do to help him, if not gain weight at least not lose more, and help him maintain some strength.

        The Struggle Is Real: Losing and Gaining Weight Due to Illness

    • #28749
      V.R. Peterson
      Participant

      The only change my son made after his diagnosis was to cut out salads and (especially) kale. When his doctor put him on blood thinners, he was told more more greenery. That has been hard for my son as he really, really liked kale.

      • #28756
        V.R. Peterson
        Participant

        @colleensteele, yes, I’m saying my son’s doctor told him to not eat greenery. When a person takes Warfarin or Coumadin, green foods affect the INR and make it harder to control the bloods clotting factors.

      • #28765
        Jen Cueva
        Keymaster

        That is too bad, @mamabear007. It is awful not to enjoy foods that you enjoy. I do know that the blood thinners are a huge no-no for the greens. I am happy that was the only change. Has he always had a fair or good appetite?


        @colleensteele
        , I have had other post-transplant friends say that no spinach, greens, etc., because of infections. I think that was an older thought. Was Cullen limited on eating greens early post-transplant?

        Thanks to you both, mommas, for sharing.

        • #28777
          V.R. Peterson
          Participant

          Yes, @jenc, he has always had a healthy appetite, except when the PH medications wrecked his stomach to the point he had a hard time eating anything. Thankfully, now that he’s off those meds, his appetite is back to normal.

    • #28759
      Colleen Steele
      Keymaster

      @mamabear007 it is a blessing, I know. He got the short end of the straw on many things but some he managed to avoid. I’m sorry your son has has to deal with it.

    • #28764
      Jen Cueva
      Keymaster

      Thanks for sharing that column, @colleensteele. I find it interesting that Cullen and I enjoy some of the same items. I have made smoothies with protein powder and add in fruits and veggies. Crackers and cheese is something I will eat and toast. Avocado is great for potassium too.

      I think as time passes, my appetite will return, which was not huge, as I mentioned.

      I had never heard of the Loseit app. I have always used My Fitness Pal to track my water and food. But, since discharge, I have not even bothered to use it. I will; I am certain eventually.

      Having a daughter that is a registered dietician helps, too. Although, her suggestions are not always things I like, hehe.

      • #28775
        Colleen Steele
        Keymaster

        @jenc the main things Cullen was told to avoid post-transplant was unpasteurized products, blue cheese grapefruit juice and raw fish including sushi. He was also advised to not eat at buffets. He was never warned against greens at all, just to make sure everything is washed well.

        • #28781
          Jen Cueva
          Keymaster

          I am happy that Cullen was not limited to greens, like salad. Yes, @colleensteele, I have heard many that had to limit it. But I think he is getting it at home, and it is prewashed; it is safe. I cannot account for any restaurants. I can certainly understand why no buffets. I have never been one for buffets, unless it may be unlimited crab legs, lol.

          Thanks again for sharing your stories.

    • #30884
      Jen Cueva
      Keymaster

      Hi @autumn2021, I wanted to tag you in this post because you asked about foods when struggling to breathe. Does your dad have PH and MS, both?

      I also will share a link to an earlier column that I interviewed my daughter, a Dietician, about tips for those with PH. Low sodium was not mentioned much because I have a rare incidence of low sodium. Most with PH are on a low sodium diet.

      What has your dad’s medical team suggested as far as diet? Most PH doctors have suggested a heart-healthy diet. But again, each PH team is different and patients, too.

    • #30886
      Eileen
      Participant

      Hi Jen. Yes he has MS and PH but I didn’t know that he had PH until I heard a dr on a zoom call say it he doesn’t tell me everything.
      yes eating things that doesn’t require chewing as much sounds like a good thing I could do . Very helpful.

      • #30887
        Colleen Steele
        Keymaster

        @autumn2021 when you heard that your dad has PH were you already familiar with the disease or did you have to research it? Either way, it must have been quite a shock to hear. MS and PH are difficult diseases to be battling alone, but together, I can image how challenging it must be.

        May I ask how well your dad understands the PH diagnosis? Are you able to attend appointments and help advocate for him?

        Many clinics these days have a nutritionist available for patients to talk to after appointments with their specialist. It wouldn’t hurt to have your dad or you as his doctor about a brief consult with on. Just a suggestion.

      • #30918
        Jen Cueva
        Keymaster

        Hi @autumn2021, that must be challenging for him to manage both MS and PH. We also have an MS website. You can join both sites and forums if that will be helpful for you and your Dad.

        The link to our MS News Today site offers some excellent columnists, podcasts, and forum moderators, too. My good friend, Jenn, is the host of the MS podcast. I learn many tips from listening, although I do not have MS.

        Like Colleen, I am curious as to how much your dad understands about both PH and MS. I can understand him not telling you anything. As a parent, we want to protect our kids. But it also makes things more complicated as a caregiver.

        Does he have any appointments with either his PH team or MS team coming up? I agree that maybe being there to help him understand and learn more will be better for you both.

        You made a huge step in joining us here, so kudos to you. Please let us know how we can best support you as you navigate this new journey with him.

    • #30900
      Jean
      Participant

      The main dietary change for me is watching sodium levels.   Things like chips have always been my go to snack so that’s changed drastically.   I use Mrs Dash seasonings most of the time and they are sodium free and very tasty.   If you haven’t tried them I highly recommend that you do. I don’t miss salt at all. I’ve had no issues with edema  which is great.  I’m a planner so have weekly meal plans including snacks. I usually graze on things like baby carrots or celery  sometimes with a bit of dip.

      • #30919
        Jen Cueva
        Keymaster

        Hi @jeanl, I love that you plan your meals. I often try and do that and did great before my COVID incidence last year.

        But, I have started to cook a bit more again and have started somewhat planning. It helps to have items precooked or at least planned as snacks, etc.

        I do cut and wash out fruits and veggies and try and prepped them ahead for snacks. I often have found that I pay for them, but I am just too darn tired some weeks. It helps; my hubby has been my prep guy more lately as far as peeling and chopping.

        I think my daughter had helped me do that because we did it together when she lived at home. She was here this past week, and we did not cook but twice the entire week. But, we did not eat at home each day.

        What is your favorite snack that you enjoy instead of salty chips? I know several brands make lower sodium white corn tortilla chips that are baked, which I enjoy.

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