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    • #34328
      Jen Cueva
      Keymaster

      Our PH healthcare team often suggests a heart-healthy diet that can be challenging and steal some joy from eating.

      Today is National Eat What You Want Day. If you could eat anything you want today without health consequences, what would that be?

      This can be a fun and enjoyable topic. But also serves as a reminder to pay more attention to any specific dietary recommendations with PH.

    • #34334
      Colleen Steele
      Keymaster

      @jenc I’ve been craving lobster lately. The boys and I didn’t go out for Mother’s Day because Cullen had assignments due and Aidan was busy searching for a place to live. He’s moving to Louisiana in June to be closer to his girlfriend. The same company he works for in WA hired him there so he is all set in that regard.

      Anyway, Aidan wants to take me and Cullen to Red Lobster this weekend to celebrate a belated Mother’s Day. I’m looking forward to it.

      I know what Cullen would love to eat without having to ask him…a Reuban. He LOVES those but it’s hard to find a place that makes a good one. It’s funny that is his favorite because it’s always been my moms too.

      So what about you Jen, what would you eat today if you could?

      • #34342
        Jen Cueva
        Keymaster

        Yummy, a lobster does sound good, @colleensteele. I hope you and your boys make it to Red Lobster this weekend. Do they still do the endless lobster there? I love those cheddar bay biscuits, too. I haven’t been in years.

        Aidan is moving to cajun country, huh? How are you coping with him leaving in June? That must be tough as I know how close you are with your boys. It’s hard when they are so far away, but they also need to spread their wings; I know, bittersweet. Please know I’m here anytime you want to talk.

        I like a good Reuben too, which was Manny’s fave, and I started tasting his. I usually would get a french dip with extra cheese and au-jus. MMM. But seafood anything sounds much better to me. We did have In-N-Out burgers last night, but I didn’t eat much.

    • #34338
      Jill Upshaw
      Participant

      Lobster sounds pretty good. The Palm has really good ones. Been craving fruit and salads so that fits right in. I like it when the fresh strawberries come in. Yesterday, I had really good seafood fajitas with queso and chips and a margarita. Came home and had a bout with pulmonary edema…..

      • #34343
        Jen Cueva
        Keymaster

        Your meal yesterday sounds so good, @upshtcx, minus the pulmonary edema. I have also been eating many fresh berries and blood oranges lately. Also, I ate some watermelon a few days ago, but it wasn’t quite ripe enough for my taste.

        Seafood fajitas, chips, queso, and a margarita, are yummy! It sounds like you enjoyed a delicious meal.

      • #34383
        Colleen Steele
        Keymaster

        @upshtcx agh, I’m sorry about the pulmonary edema but that meal sure sounds delicious! Dare I suggest that the occasional treat in moderation might be worth the after effects as long as they aren’t too severe? What are your thoughts about that?

        • #34394
          Jen Cueva
          Keymaster

          Hey @colleensteele, speaking for myself, not @upshtcx, I enjoy the occasional treat and pay for it later. Usually, I’m improved within a few days. But I also have needed to use an extra diuretic I have as required at times. Although I wouldn’t suggest this frequently, occasionally is the keyword for me.

          But our bodies react differently to sodium; I know some PHriends who won’t touch a single tortilla chip because they swell that fast! I’m thankful that it takes more than 1 or 2 for me since I could eat my weight in chips and salsa before PH.

          Is Cullen one who followed his dietary guidelines in full, or would treat himself occasionally? I would guess he’s a ” follow the rules ” by line kind of guy.

    • #34367
      Jenney
      Participant

      If I could eat ANYTHING, it would be a big juicy burger with the works and crunchy fries and onion rings! But…. That’s IF I could. I’ve been experimenting with all kinds of fish since I was never much of a fish eater before and I’m enjoying that. Altho I was diagnosed in 2018, I never had a knowledge doctor until last month so I’m still navigating unknown waters

      • #34378
        Jen Cueva
        Keymaster

        Hi @jenneyeiklor, how have you been? I haven’t seen your post in some time. Are you managing OK?

        I could skip the burger, but the crispy fries and onion rings are more my jam.

        I love chicken and seafood. What types of fish have you found you prefer best? I try to make fish once a week. I usually buy salmon and cod, maybe other fish depending on what’s on sale and what I plan to do. I also enjoy shrimp and typically have some in my freezer, too. It thaws quickly and can be utilized in many dishes.

    • #34368
      Debbie Moore
      Participant

      I would love a big bowl of boiled peanuts!  Can you tell I’m from the south?  But the sodium is out of this world.

      • #34379
        Jen Cueva
        Keymaster

        LOL, @debbie, a southern gal by birth here, I immediately caught that! I’ve not been a fan of most boiled peanuts, but I have not had them in years. I had some in Mississippi years ago that I did enjoy but never found any like those again. They had a little kick in them, too. Oh yeah, I can only imagine the sodium in those. But taking that out would make them bland.

        • #34380
          Debbie Moore
          Participant

          They would be horrible with even just using a little salt.  They also taste different depending on the peanut you boil.  I love the Spanish peanuts, not so wet and lots of nuts in the shell.  Sometimes I’ll eat chickpeas and tell myself they are as close as I can get to boiled peanuts.  I’ll have to look up their sodium.  Now I’m hungry.

        • #34390
          Jen Cueva
          Keymaster

          LOL, @debbie, I hear you about taking away the salt. Maybe it is the type of peanut it was that made a difference. But, I also know the many different spices that add to the sodium. The hot ones, aka cajun style, must contain more. Of course, that’s why I would like it the best.

          Here is a bit of nutritional info for the boiled peanuts. Of course, these are canned, which I don’t like, and like most canned foods, maybe higher in sodium. One serving is 420 mg of sodium.

          Here is a recipe for some with much lower sodium, although they sound bland to me. I wonder if those salt-free seasonings would work to make these more flavorful?

          Of course, another recipe but with cajun seasonings increases the sodium back over 400 mg per serving.

          Do you boil the chickpeas like peanuts? I wonder if that helps. But the texture and no shell would be the difference for me. I’ve made air-fried chickpeas for snacks, and those were OK but not this taste profile.

          Now, I want some cajun boiled peanuts; it never fails! Hehe

        • #34436
          Debbie Moore
          Participant

          @jennc I just rinse the chickpeas out of the can and munch on them.  No cooking necessary.

        • #34442
          Jen Cueva
          Keymaster

          OK, and those raw chickpeas taste similar to boiled peanuts for you? It’s interesting, as I’ve only eaten them raw in salads and mixed with other ingredients. It sounds like a fix when you’re craving those hot boiled peanuts.

          I’ve seen many chickpea recipes on Pinterest; I see those baked or air fried and seasoning for snacks.

          If you like spicy and can get the cajun boiled peanuts, I bet you’ll want those, too. Yummy.

      • #34381
        Jenney
        Participant

        Hi Jen Cueva, no I haven’t posted in a long time because I was drifting at sea on trying to navigate PAH on my own. I live in a very small rural area and I had no real access to a pulmonologist that was knowledgeable with PAH. Last November I was visiting my daughter and son-in-law 300 miles from home as they prepared for the birth of my first grandchild. I was taken suddenly ill and sent to a hospital in Connecticut that also had no knowledge of PAH. After almost 2 weeks in the hospital with my O2 stats in the ’80s, they finally managed to stabilize me for gallbladder removal. I’ve been struggling to get back to normal from that and in the meantime my local hospital got a pulmonologist who is very knowledgeable in PAH!

        I am scheduled in June for testing. I had already been diagnosed with pah in 2018 by my original pulmonologist who had vague knowledge of pah, but had no further testing after that. I was put on ambrisenten at the time and then put on to tadalifil. Tadalifil landed me in the hospital unable to breathe. Once I have these follow-up tests done in June my new pulmonologist is going to talk to me about remodulin or tyvaso.

        So that’s the story of the last 4 years of my life! Since the gallbladder surgery I feel my health has not been as strong as it had been before it. So the timing of a knowledgeable pulmonologist has really given me hope that there is a way for me to get my strength back.
        <p style=”text-align: left;”>As for the fish I really like cod and tilapia. I also enjoy salmon on occasion.</p>
        Thank you for checking in on me!

        • #34382
          Colleen Steele
          Keymaster

          @jenneyeiklor congratulations on your first grandchild! Boy or girl?

          I found myself clenching my teeth as I read your update. You have been through so much and without proper medical support. I’m keeping my fingers crossed for you that the new doctor will be able to finally do the proper testing and have the knowledge to provide the best treatment plan for you.

          PH treatments can be very helpful and improve quality of life but it’s important to have them prescribed by a doctor who is familiar with them. Proper dosing is key and I wonder if that is part of what when wrong for you with Tadalifil. In any case, there are other treatment options. Please keep us updated and feel free to ask us questions so we can help you.

        • #34391
          Jen Cueva
          Keymaster

          Hi @jenneyeiklor, what a plot twist when you were there awaiting your first grandchild. Congrats. Was this a boy or girl? How’s that new grandbaby growing?

          I’m so sorry that you’ve found yourself in such difficult situations. It was quite an emotional read, so I can only imagine how you have been feeling about this all.

          But. I’, grateful that you decided to come back and join us and share some of your experiences. June will be here before you know it, and I’m hopeful the new pulmonologist is knowledgeable and can find the best treatment for you to offer some much-needed relief.

          It often takes a little bit to adjust and find the best treatment plan and dosage, but it can be a world of difference once you do.

          What day is your appointment? As we get closer, please keep us posted so we can send you positive thoughts and prayers if you wish.

          Please know that we are here to support you as you head into this appointment and testing. If you have any questions or concerns, we are happy to help you along the way. You are not alone.

      • #34384
        Colleen Steele
        Keymaster

        @debbie and @jenc my son is about to move to Louisiana and I assume boiled Cajun peanuts are a thing there? I told him to try some and let me know what he things…then bring some home when he visits.

        I assume they are much better than the bagged peanuts at the supermarket?

        • #34387
          Jenney
          Participant

          Thank you Colleen! It’s been very scary for me not knowing where to turn with no access to proper health care. I just sort of gave up and took my medication every day and hoped for the best. Interesting thought on the tadalifil. I think when I see my doctor in June I’m going to ask him about that.

          I have a grandson! Mason! My plan was to retire and move in with my daughter and son in law temporarily to care for him for his first year and I feel very blessed I’ve been able to follow through with that. My son in law is actually a respiratory therapist at Yale/New Haven and he’s helped me by conferring with the pulmonologists that he works with. He actually did that when I was inpatient for my gall bladder surgery at another hospital (ambulance wouldn’t take me to Yale) and the doctors were happy for his help!

          I travel back home to PA once a month for a few days but the drive is very stressful for this small town country girl! But my daughter and son in law take very good care of me, watching my diet and making sure I get out to walk several times a week.

        • #34393
          Jen Cueva
          Keymaster

          Hi, @jenneyeiklor again; so sorry I missed this update when I responded earlier.

          It sounds like you are bonding well with Mason. I have a late PHriend named Mason, who I adored, and my other PHriend has a grandson names Mason; it must be a common one for boys, huh?

          I bet you have your hands full. But I’m so happy that you’re there with your daughter and son-in-law. It sounds like you can work to help each other, which is fantastic!

          This update makes me smile because you sound like you’re safe and surrounded by the love and comfort of your family, plus a much larger healthcare community.

          Your SNL being an RT and having those connections must offer you some relief, especially compared to the lack of care you had access o at home in PA.

        • #34392
          Jen Cueva
          Keymaster

          Hi @colleensteele, yes, those cajun boiled peanuts are yummy. But tell Aidan to get you the fresh ones from a cajun market, etc., not the ones in a can. That will make a huge difference, hehe.

          Beware, if you are like most and enjoy the entire bag, that is a sodium overload for anyone, LOL.

          Please let us know when you get that chance to try them.

          How are you coping with the move? Is he excited, nervous, or a bit of both? He’s such a brave young man.

        • #34438
          Debbie Moore
          Participant

          @colleensteele I’ve not had cajun ones.  But anything fresh is always better

    • #35407
      Karen Endelman
      Participant

      I’ve been lactose intolerant for quite a few years now, so if I could eat anything without repercussions it would be a big bowl of fettuccine alfredo!

      I’m new to having PAH and the docs are still playing around to get the rights meds.  I feel pretty good, blood pressure is good, edema under control, O2 levels are good – so I think about indulging in something that I shouldn’t, but then change my mind (or just chicken out).  I’m sure once I am more comfortable with my diagnosis, I’ll have a cheat meal!

      • #35415
        Colleen Steele
        Keymaster

        Oh, I hear you @karene! I am allergic to pesto but LOVE it! Every now and then I will decide to “give it another try”. It’s never been a good idea. I get horribly sick. Sever stomach pains and vomiting, but hey, sure enjoy eating it! LOL!

      • #35426
        Jen Cueva
        Keymaster

        Hi @karene, I love anything Italian, so chicken alfredo is yummy. But the heaviness in it kills my belly every time; I usually stick with other sauces.

        I understand you want to become more familiar with your diagnosis before you plan any cheat days. I do that on the weekends when my hubby is home and usually Saturday, so I know I have Sunday to rest and debloat as needed, LOL.

        It takes a little time to find the best treatment plan. Our bodies are so different, so it’s far from a one size fits all approach with our PH medications.

        Aww, @colleensteele, I love pesto too, so not fair. Is it the oil or what in the pesto that you’re allergic to? Pine nuts? It sounds like I need some yummy Italian dishes for you both. I had leftover lasagna yesterday for lunch and could only eat a few bites. I usually try and start with a small salad first. Don’t forget that garlic or any fresh bread, LOL.

    • #35530
      Jen Cueva
      Keymaster

      I’ve had a strange craving and wondering if y’all do the same. I love fresh krauts, but this company, Cleveland Foods, has a freshly bagged kraut sold at Sprouts and other stores. They also have kimchi. But the kraut has many flavors. I LOVE the classic caraway. But I do hope to try the whiskey dill and others. I don’t particularly care for kimchi, but kraut, OMG.

      I crave it at strange times and only eat it by itself. It’s good, of course, on Brats, etc.

      This is my craving for the day. Last week when I went to Sprouts, they were out, so I didn’t get it. It’s an occasional splurge when I do crave it.

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