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    • #11037
      Kathleen Sheffer

        Columnist Rebecca Lidenberg shares how she benefitted from changing her diet in this article. She cut out added salt and alcohol completely, as her doctors advised. “I have never felt better,” Lidenberg writes. “My doctors love the results. I love the results.”

        Have you seen the same benefits from choices you have made?

        My doctors rarely made recommendations for my diet. I was constantly underweight and nauseated so they wanted me to eat whatever I could manage. Since transplant, that has changed, and I’ve had to become fairly disciplined and informed about what I am eating.

        What inspires you to eat well?


      • #11163
        April LeMaire

          The only advice my doctor really made was low sodium and get enough protein. I made the choice to give up caffeine and alcohol because I found the pay off was SO not worth the heart palpitations, nausea, and headache.
          I’ve very recently been trying to switch to a more “plant based” diet, which is how the cool kids say vegan these days. I’d say it’s not going great. We are trying but it is definitely a steep learning curve.
          I hear it’s great for inflammation and I’ve read a couple blogs and books that say it shows results.

          Seems like it’s worth a try… most days.

        • #11169
          Kathleen Sheffer

            I hear you on the caffeine and alcohol. I can handle caffeine post-transplant, but it was not good for my PH heart.

            Are the nausea and headaches you mentioned related to alcohol? I have never had alcohol without all my other meds on board so I pretty much just figure it feels different (bad) for me than it does for my peers. I used to have a single cocktail once a week, but after my transplant gave it up completely because I felt like I had too many other factors to pay attention to and alcohol would only complicate my life. It’s actually been a huge blessing – before, I would spend the whole time worrying about how much I should drink and how I was feeling. Now when I go to bars there’s no question I’m only ordering water (and then I don’t have to split the bill with friends)!

            I don’t think I could manage a vegan diet – I rely so much on eggs and yogurt for my protein. What plant-based proteins are you finding?

          • #11173
            April LeMaire

              Yes I find I get the nausea and headaches after drinking, especially wine for some reason. I can 1 handle a cocktail with low or no sugar every now and then, but really that’s more for my friends/husband than me. I don’t miss it either.

              I do a vegan protein supplement shake to help, but mostly beans and rice. There are actually a ton of vegetables with protein. If you have Netflix, check out Forks Over Knives. It straddles the line of conspiracy theory for me, but they also have a lot of facts.

              I’m thinking this is going to be more of a part time vegan thing for me. Control it at home when I cook, but out to eat, all bets are off.

            • #11175
              Kathleen Sheffer

                Yes! Wine was a big issue for me too. Which is too bad, since I liked it…always made me feel exhausted. I wonder why?

                Shakes are great for getting in the things you don’t want to eat…I am always low on magnesium so I throw in a ton of spinach with my smoothies. I will check out Forks Over Knives – sounds interesting.

                Part time veganism sounds good, as long as you don’t binge when you go out to eat, haha. Don’t want to shock your body. Is your husband trying the diet with you too?

              • #11178
                April LeMaire

                  Yes he is. He is a trooper, but he also eats everything- which is sometimes infuriating. I’m the picky one.
                  So far every recipe has been “ok”, not great, not terrible.
                  I think it’s just going to take getting used to. Of course it’s not going to taste delicious with no butter or cheese! It’s like learning to cook for the first time again. Everything I thought I knew is wrong. By I think with practice and time hopefully I’ll get the hang of it.

                  One major fall back is the prep. Fresh foods don’t cook themselves or magically appear in the refrigerator. Some days I just can’t deal with the hassle. Frozen pizza it is.

                • #11179
                  Kathleen Sheffer

                    That’s true. Cooking a meal zapped all my energy in a day. I freeze my own ginger and spinach and buy frozen fruits so I can always make a smoothie. You can also buy already chopped vegetables to make the prep a bit easier or cook extra to freeze for later!

                  • #11228
                    Jen Cueva

                      Great tips ladies!
                      I, too was able to drink small amounts of alcohol, but now with Uptravi, and even when I was on Orenitram, it’s been no alcohol. I don’t miss it most days but some days it looks so good , like out for fajitas and thought I could share a margarita with my hubby, well it did me in. I feel awful, hot, and nauseated and really exhausted, so I’m done with it. I have kidney disease as well now, so alcohol can cause gout, so I’m better doing without it.

                      We try to eat lean proteins, veggies, and whole grains but often splurge. Often when I’m too tired to cook or not hungry , I also make smoothies . I have prepared several smoothie combo bags in my freezer that’s ready to toss in my Vitamix, can add a yogurt, water, juice, or liquid if your choice. Coconut water is one I like to use too, as it’s hydrating.

                    • #11235
                      Kaye Norlin

                        Nutrition has been one of my passions for >3 decades so I was ahead when it came to cutting out those things that aggravate PH and interfere with meds. I haven’t salted my food since 1980 and don’t ask me what I ate before that! I am brining my brisket now without salt for St. Patrick’s Day; it is spicy but quite tasty. I love studying nutrition so much that I did get my Master of Arts in Behavioral Medicine/Health Psychology with a focus on Nutrition and am a Health and Wellness Coach. I gave up alcohol when I was 28- don’t ask how old I am now-which is a no-no with PH and transplant meds. I eat mostly plant-based diet but I can’t see giving up my once per year lobster or my corned beef and cabbage. I am not sure I could do vegan either and it can be difficult to get the amino acids we need but beans and rice are a good source. I do believe and research shows that we really are what we eat so it just makes sense to eat “close to the ground”, all natural, organic if you can. I like plant-based smoothies and there are some on the market that are healthy for PH patients that can be mixed with whatever you want but I can’t use the one I like post-transplant because of some of the ingredients. I have kept a food diary for 15 years because of cancer so I know what bothers me and I find that now I can’t eat some of the things I ate before. My body is weird.

                        The only advice I received from any of my PH doctors was to limit salt and I had to press them for specific information. While some doctors are knowledgeable about nutrition, we have to remember that most doctors do not have to take any nutrition classes during med school so they may or may not know. I have found that even some dietician’s don’t have a clue about PH and just show you labels that read “low sodium” when I have asked them for “no added sodium” products. When in doubt though, ask a knowledgeable doctor or registered dietician; anyone can call themselves a nutritionist (but may be licensed soon). All of my doctors have said that my eating and exercise habits are what has likely kept me as healthy as I was and alive when I my disease took over. So, yes, diet makes a difference; look around at people who eat badly and have no stamina or flexibility and they are often sick with colds, etc.

                        Question, Kathleen, have your transplant doctors cautioned you about yogurt? Mine has said to watch the probiotics in it as some can cause infections. I used to make my own yogurt but can’t do that now unless I use specific cultures. You said you were encouraged to eat whatever to gain weight; that is new for me since transplant- a whole different experience but I weigh less than I did in high school.

                        I do have a sip of my husband’s wine when he opens a new bottle and I want a taste and my transplant team says they will buy the wine when we go back to Italy, as long as I only have one glass and space it between drugs. Wow, with those restrictions, that wine will be at 2PM followed by a nap.

                        With all the research and the focus on mind-body medicine, we all need to know that we do have some control over our health even when we face PH everyday.

                        • #33661
                          Jen Cueva

                            Hi @kaye-norlin and all, this week is St.Patrick’s Day, and I noticed that Kaye shares she brines her corned beef brisket without salt. What’s everyone cooking this week in celebration of St.Patrick’s Day?

                            Kaye, if you have a minute, please hop in and let us know how you’re doing. Feel free to share that corned beef brisket recipe with us. You had me at spicy.

                            One of my neighbors/friends is making a Shepherd’s Pie. I’ve never made one or eaten it. I’ve heard that’s it yummy; I may try it. But I’m trying to come up with something to make to eat with that. Does anyone have any St.Patrick’s Day favorites?

                            I’m not a huge fan of corned beef, but this topic makes me hungry. Hehe

                        • #11258
                          Jen Cueva

                            Great topics and info !
                            Kaye, my daughter just finished her Internship for Dietetics, she’s always educating me on nutrition and we enjoy food and cooking ( on my good days !
                            Food and nutrition as well as fitness has been a huge part of our lives for years , even with my low activity level on bad days. She makes up for us both with CrossFit and other fitness classes.

                          • #37549
                            Jen Cueva

                              Although this is an older post, diet is essential for the PH community. Most often, the recommendation is a low-sodium heart-healthy diet. However, check with your PH team to see what diet suggestions they think will work best for you.

                              PH nurse researcher and advocate @jordinr shared this new resource with me. It’s full of incredible tips. I wanted to share the nutrition portion here with y’all. Check it out, and let’s talk about this. I love the title of this new site, Learn, Live, Breathe PH.

                              PH nutrition

                              Did you learn anything g new? Have you found any new lower-sodium recipes that you’ve enjoyed recently? If so, let us know so we can test it out, too.

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