• jen-cueva

    Member
    June 23, 2022 at 1:06 pm

    I used some coconut water in my morning smoothie that morning. Coconut water is said to help with electrolytes/ hydration. I can use that in place of water since I am trying to maintain my fluid restriction.

    But although it’s known to have electrolytes, Mayo Clinic reports it’s no better than plain water. Yeah, I read this after I used my coconut water. I guess I’ll go back to plain water, although I do like the electrolytes benefit.

    Have you used coconut water to rehydrate?

  • debbie-moore

    Member
    June 23, 2022 at 2:40 pm

    Hi @jenc.  I do not like the taste of coconut, so chances are I wouldn’t drink it.  However, how do you make your smoothie?  What goes in one?

    • jen-cueva

      Member
      June 24, 2022 at 1:38 pm

      Hi @debbie, I am not a huge fan of coconut either. I don’t taste it in my smoothie. But my smoothies have been lately mixed berries, fresh and frozen, a half of a banana I usually have in the freezer, and spirulina powder. I recently started adding this powder, a blue-green alga with many health benefits, including hydration and antioxidants. I only put a tiny amount( 1 tbsp is what it says) as it would not taste good on its own. I also add a few prunes or dates, whatever I have, ice, and a tad of water and blend.

      I only make these on days when I’m not hungry to get some vitamins and nutrients. You can add peanut butter for protein if you like and spinach, whatever; I’ve used a little leftover pineapple too at times.

  • jo-ann-white

    Member
    June 23, 2022 at 2:55 pm

    Had been using just water and tangerine juice with breakfast. Thought boost and ensure might guarantee I got enough protein but discovered that I gained a lot of weight. They may be nutritious but they also have a lot of calories!!!

    • jen-cueva

      Member
      June 24, 2022 at 1:41 pm

      Hi @jo-ann-white, do you mix your tangerine juice with water, or do you have both at breakfast? I suggest you look into other protein drinks that may contain less sugar. I know my dad is a diabetic, and he used the Walmart brand, Equate for Glucerna, and likes the vanilla and strawberry only.

      Are you restricted on fluids by your PH team?

  • janet-barry

    Member
    June 23, 2022 at 3:36 pm

    I’m really looking forward to all of you sharing in this forum. My nephrologist is concerned about my hydration. My last checkup she said I need to hydrate more. It is so frustrating hearing this. Thanks in advance for your suggestions.

    • jen-cueva

      Member
      June 24, 2022 at 1:44 pm

      Hi @jbarry28, sorry you’re so frustrated trying to stay hydrated. I have the opposite issue, LOL.

      But maybe eating foods high in water like cucumbers and watermelon may help. Be cautious of watermelon if you have diabetes or need to limit sugar. Because I’m restricted on fluids, these two foods are my weakness in the summer months.

      Try adding lemon and other fruits to the water for flavors. I like mint, too. Like @brendad53, I also like iced tea mixed with water, and I add lemon.

      You got this!

  • brenda-denzler

    Member
    June 23, 2022 at 4:05 pm

    I have been a hydrator for decades. I always have unsweetened iced tea or water with me, and I sip on it constantly. The thought of being told I can’t do this is very uncomfortable for me.

    • jen-cueva

      Member
      June 24, 2022 at 1:47 pm

      Hi @brendad53, I can relate to that uncomfortable feeling. If you don’t have CHF or kidney trouble, maybe they won’t limit your fluids. Not all are limited.

      I was a hydrator, too. And now limited because of my history of CHF and stage 3 kidney disease. But I do OK until summertime.

      Keeping something with you is important. I try to tell my mom to grab her water bottle of a glass of iced tea when I talk to her.

  • dorothy

    Member
    June 23, 2022 at 8:52 pm

    I fill a pitcher to a certain level each morning. It should be empty within 24 hrs. Keeps one honest. We all think some days we have had more to drink than is true. I think it would work in the reverse too.

    Premier Protein with 30 grams of protein might be a better choice for JoAnn White. It only has 170 calories compared to Boost with 250 calories, very little sugar.

    Doti

  • jen-cueva

    Member
    June 24, 2022 at 1:51 pm

    Hi @dorothyirwin-browning, that’s precisely what I did when I started a fluid restriction. I was using that well-known hospital plastic water pitcher at the bedside. I was told to fill it to a certain amount each day.

    Unfortunately, we also forget that soups, jellos, and other things count as fluid. For me, this was the most challenging part.

    Thanks for your suggestion of Premier Protein. I know many buy that at Costco and Walmart and like it, too. @jo-ann-white.

    Your suggestion is helpful, and I bet many will learn from it. Thanks so much for sharing.

  • Colleen

    Member
    June 24, 2022 at 5:59 pm

    Cullen’s hydration has been a struggle all his life. When he had PH it was finding the perfect balance between getting enough fluids but not overdoing it (he was on diuretics).
    Since transplant and his kidney disease diagnosis it’s hard for him to overdo it. It’s more of making sure he gets enough.

    When Cullen had PH his doctor told him exactly how much she wanted him to drink in a day and had him keep a chart. Things like soup, watermelon, smoothies, freezer pops etc., counted but he was not to rely only on them. He had to drink a certain amount of water too.

    During the summer he would often much on ice chips. This seemed satisfying because he was getting the crunch in that he missed from not eating salty things like chips.

    Since his transplant he constantly has a bottle of water with him. When his labs are off and he needs to drink more he uses a water bottle that shows how much you drank so far.

    • jen-cueva

      Member
      June 27, 2022 at 10:31 am

      Excellent points, @colleensteele! Yes, we can’t merely depend on jello, soups, etc. for fluids. We need water, too.

      I bet this was a big adjustment for Cullen, going from one side to the other post-transplant and now being told to drink up! But, even at his young age, he sounds like he’s done an excellent job to try and stay on track whatever the doctor orders. He’s such an inspiring young man!

      Yes, I recall being told often to use ice chips during the summer. But I loved munching ice, like a large Sonic cup of that soft fluffy ice, and that was a huge downfall when I was limited. Although I would sometimes enjoy this as a snack, I don’t think I felt like it took the place of chips for me, LOL. But I do get the point.

      I have a large 32 oz thermal cup teal that a friend bought me once, and I fill it but can’t drink all of that water in a day. There are times when my PH team and kidney doc allow a bit more, thankfully.

      Like Cullen, with my history of CHF and kidney disease, it’s often a difficult balance and then toss in my diuretics. Some days I’m thirsty all day, which usually means I need a little extra. That’s if my swelling is controlled.

    • brenda-denzler

      Member
      July 3, 2022 at 9:48 am

      I am surprised to read that Cullen has a kidney disease diagnosis. I know he’s had a lung transplant, and I had thought that he was all better. Makes me sad to think that he’s now battling kidney issues.

      • Colleen

        Member
        July 5, 2022 at 8:18 pm

        @brendad53 Cullen had a heart and double-lung transplant almost 8 years ago. He’s been battling stage 3 kidney disease for the past 6.5. It was caused by his transplant immunosuppressants.

        Knock wood his kidney disease has been stable for the past few years thanks to patiently working out trial and error with BP medications and changing his diet. We have been told it is possible for him to remain stable for a very long time and that is what we of course are hoping for.

        Thank you for your concern. I appreciate it!

  • debbie-moore

    Member
    June 25, 2022 at 2:21 pm

    I thought I was doing well with my 60 oz of liquid/day until y’all chimed in with counting jello and watermelon.  How in the world do you measure jello and watermelon as a liquid? I just cut up a watermelon a couple of days ago and have had some every day.

    I have another question. @jenc you mentioned adding spirulina powder to your smoothies that it adds hydration.  If you are getting liquids in isn’t that hydration?  Or is hydration how your body handles the liquid?  We have this “hydrate” product at the store that is for coffee.  I have a hard time selling it because I don’t understand it.  Any light y’all can shed on liquids vs. hydration I would appreciate.

    • jen-cueva

      Member
      June 27, 2022 at 10:39 am

      Hi @debbie, I wouldn’t be so concerned with the jello and watermelon unless you’re eating a large quantity. Those are things to keep in mind. But you still need plain water, too. I know it’s a bit confusing and often is easier once you know about how much of what your body can take before you start retaining fluid and swelling.

      My apologies; I am probably confusing you, too. When I speak of hydration properties, I think more of adding electrolytes. I’m guessing that’s what the coffee product you mention is. If you read about it, I would guess you would see it contains things like potassium, magnesium, and sodium, to name a few.

      My kidney specialist told me not to rely on things like Gatorade
      as they tend to make you more thirsty. But said I could mix a little with water at times. Also, some hydration packs and drinks contain extra sugars that most of us don’t need.

      Does that help you a little? But if you are eating a fair amount of fruits, veggies, and drinking water, that is usually adequate. I tend to do this more when I know I’m lacking. This would be, for me, muscle cramping, spasms, headaches, and other signs of dehydration.

      • debbie-moore

        Member
        June 27, 2022 at 1:05 pm

        Good afternoon @jenc.  That helps.  I’m having portion sizes of the watermelon.  I know I haven’t been as thirsty having my cucumbers and watermelon.  It is hard trying to learn and balance everything.  I love the forums because I do learn something every time I read.  Thanks.

      • jen-cueva

        Member
        June 28, 2022 at 3:27 pm

        Hi @debbie, yeah, adjusting and learning new habits takes time. I have a small watermelon that I’ll be cutting here soon.

        Paying attention to the portion sizes of these water-rich foods helps. I’m happy that you’re learning from the forums. We learn from our amazing members daily.

        The recipe that @colleensteele shared below sounds refreshing. I’ve made lime, cucumber, and mint. It’s refreshing, so I bet this one is too.

        I’ve sometimes tossed a few frozen berries in my water if I have any extras in the freezer. Mint alone is refreshing, too, as are cucumbers.

        Thanks, @colleensteele, for sharing that refreshing water link.

  • Colleen

    Member
    June 27, 2022 at 1:48 pm

    Hey, a friend posted this to social media and I immediately thought of all of you. I haven’t tried it yet but my friend has and she said it is very refreshing. If you aren’t a fan of cucumbers she used a mini cucumber and said you really can’t taste it.

    ………………………………

    If you’re tired of boring plain water, try Cucumber Lemon Mint Water! This refreshing beverage is not only hydrating, but it also has a light, slightly sweet flavor with no sugar. It’s budget-friendly and easy to make.

    Click on the link below for the ingredients and recipe:

    Cucumber Lemon Mint Water

  • jo-ann-white

    Member
    June 27, 2022 at 1:52 pm

    I am restricted to 1500 ml of fluid daily, mostly water with occasional tangerine or cranberry juice and high protein boost. Watermelon is my fluid restriction downfall if I forget to count it!! I am not diabetic and have maintained a pretty stable weight for three years now. Remain stable on tadalafil and two years now of Tyvaso nebulizer. Opsummit and steroid inhalers did not work for me. On 4-6 liters of oxygen 24/7.  Main thing is low salt diet and restricted fluid intake to preserve kidneys and prevent excess water retention. Plus aerobic exercise and squats and marching in place. Just takes a lot longer to do everything. Dealing with this disease is very time consuming.

    • jen-cueva

      Member
      June 28, 2022 at 3:31 pm

      Hi @jo-and-white, like you, watermelon will quickly push me over my fluid limit. I only buy the personal-sized ones and share them with my hubby. Do you also tend to do this with cucumbers too?

      Yes, unfortunately, managing PH is time-consuming and exhausting some days. What is your greatest challenge this week?

      Kudos to you for your exercise. I’m trying to get back into some exercise, too.

      • Colleen

        Member
        June 28, 2022 at 4:22 pm

        People also react to foods differently so listen to your body. For example, I really enjoy watermelon but it doesn’t take much of it to make me feel bloated and uncomfortable. I retain that fluid faster than I do others for some reason yet Cullen has never seemed to be as greatly affected by it. He LOVES watermelon. I often have to remind him to slow down with it.

      • jen-cueva

        Member
        June 29, 2022 at 10:41 am

        Excellent reminder @colleensteele! We don’t always think about this with food, but our bodies react differently like meds.

        Like Cullen, I love watermelon, too! I bet we could put one away together. Although I only get the smaller pieces. LOL

        Here is another helpful sheet that shares tips for staying hydrated while limiting fluids.

        Healthy Hydration Tips

  • brenda-denzler

    Member
    July 3, 2022 at 9:56 am

    Talking about hydration and fluid retention and kidney function, etc……..

    Do you find that sometimes your kidneys are busy doing their job, and sometimes they slow down and don’t do as much? So you adjust your hydration accordingly?

    PS — All this talk of watermelon. It’s one food I’d like to like, but just can’t. My mom told the story of the first time I had watermelon. I was about 2 years old. I took a bite and said, “It’s good. But I don’t like it!” And that has been my opinion ever since. It looks good. It sounds good and juicy. But the taste? Blech!

    • jen-cueva

      Member
      July 5, 2022 at 10:47 am

      Hi @brendad53, you don’t like watermelon? So strange; I don’t think I know anyone else who doesn’t like watermelon.

      My current kidney function is stage 3, so my kidney functioning and hydration requirements are pretty stable at this stage. Now, if there are reasons I am losing water or fluids and start to feel dehydrated, I can increase fluids by a few ounces or suck on ice.

      • brenda-denzler

        Member
        July 5, 2022 at 4:46 pm

        I want to like watermelon. And cantaloupe. And honeydew. But, alas!

        You know, I’ve read that people who get a diagnosis of some really gnarly condition grow accustomed to dealing with it. Not happy about it. But accustomed to it. And when later on they have reason to envision themselves with another really gnarly condition, they think, “Oh, I’d rather have what I had/have. At least I understand how to live with it! This new thing sounds really unpleasant.”

        That’s where I am with PH and especially with the thought of kidney problems because of the drugs used to manage the PH. They sound scarier to me than cancer, right now! 🙂

  • Colleen

    Member
    July 7, 2022 at 4:57 pm

    My husband is weaning himself off of soda. Her ordered through Amazon, Hint, a fruit infused water (not seltzer).

    I tried it and was pleasantly surprised. It really is just a hint of flavor and it doesn’t taste artificial. It is very refreshing nice and cold from the fridge.

    They offer 25+ flavors but if you try it remember to stay clear of the grapefruit one if it interacts with your medication.

    I don’t think it is offered in stores. You can purchase it directly from Hint or from Amazon.

    Here is a link to the company: Hint

    • jen-cueva

      Member
      July 8, 2022 at 12:49 pm

      Hi @colleensteele, I have had Hint waters and enjoy them. I like the watermelon and blackberry flavors the best out of the flavors I’ve tried. It’s like adding fresh fruit to my water minus the calories. It’s just a “hint,” as the name infers.

      An excellent tip to think about medication if going to try the grapefruit flavor. So many drugs interact with grapefruit.

      Kudos to Brian for working to give up sodas. Is he stopping cold turkey or slowly tapering off? What’s his favorite soda? What about you?

      • Colleen

        Member
        July 8, 2022 at 3:40 pm

        @jenc he likes what in my opinion is the worst soda to be addicted to…Mountain Dew…Diet, but that doesn’t make much of a difference health wise.

        I drink Diet Coke but only a can or two a day. Brian’s soda addiction is much worse. He tried cold turkey but was getting headaches so he is slowly limiting how much of it he drinks in a day.

      • jen-cueva

        Member
        July 11, 2022 at 1:12 pm

        Aww, Mountain Dew and Dr. Pepper were my faves years ago, @colleensteele. But now, if I have a soda, it’s a mini Coke. But it’s not daily, not even once per week. But instead of coffee, I am drinking one this morning, coincidently.

        I’m glad that Brian is weaning down because caffeine is tricky to stop. How is enjoying the Hint waters? Was he much of a water drinker before? I like water, so I have no problem drinking it, but I prefer flavored waters.

        Manny enjoys the bubbly waters, which helped him get over his Coke and diet Coke drinking; now, he only has one occasionally. He likes the blackberry bubbly brand and La Croix and a few others. Kroger had at one time those seltzers waters flavored like Coke and Root Beer, he loved the Coke one, but it seems like they discontinued or only carry that at certain Kroger stores. It actually had a Coke-like flavor, weird.

        I prefer plain water over bubbly; I’ll save the bubbles for my wine.

      • Colleen

        Member
        July 11, 2022 at 5:05 pm

        @jenc I have to say, Brian has always been really good about drinking water, unfortunately he also drinks a lot of soda too.

        He ordered Hint in exchange for the flavor he is losing from not drinking soda.

        I don’t mind bubbly seltzer type of water but Cullen hates it!

  • jen-cueva

    Member
    July 12, 2022 at 12:09 pm

    Aww. so Brian is great with keeping hydrated. It’s just his soda habit he needs to cut back on. I’m proud that he’s working towards that goal. I know you must be, too.

    I heard some get it on base for cheaper by the case. Manny’s cousin ordered some online a while back and was told it was like 69 cents per bottle there or less. I also see it on sale at the grocery store often. I pick up a few bottles only at a time.

    LOL, like Cullen, those bubbly seltzers take some getting used to. I can do Ok with a few flavors only.

  • terry

    Member
    July 27, 2022 at 6:01 am

    I have been taking a diuretic with the macitentan and tadalafil for a month now and seem to have increased energy levels BUT it takes a bit longer to recover if I go too far and the heart pounds a bit hell   I even almost jogged all the way across a pedestrian crossing the other day but thought I might fall over so slowed . My daily aim is to drink seven  decent glasses of water a day plus my usual five expresso black coffees. I’m feeling good compared to previous EXCEPT I have a bone to pick. I reckon you mob ,mob being the opp.sex, have taken the burn the bra revolution a step too far. For both  my third and fourth covid booster shots and I end up with  a sore  arm for three days and aches and pains for 24 hours . My misses and my three daughters have their shots and after an hour or so nothing ,nada ,nil effects. I’m convinced that female scientists have added something to the vaccine that causes adverse effects on males only . Thats a step too far so STOP it.

    • brenda-denzler

      Member
      July 27, 2022 at 11:35 am

      Your post made me laugh, Terry. My first inclination was to respond simply with “Mwah-ha-ha!!!!” (Picture me rubbing my hands together with evil glee!) “We are now moving on from burning bras (figuratively speaking) to burning jock straps! Mwah-ha-ha!” 🙂

      But seriously, I just ran across this news article and thought immediately of you:

      Sex matters when it comes to immune responses to vaccines and viral infections

      Your complaint (tongue in cheek though it was) actually has some basis in fact, it would appear! 🙂 Hope you are feeling better soon.

      Brenda

      • jen-cueva

        Member
        July 27, 2022 at 1:49 pm

        Hi @brendad53, thanks for sharing that article relating to @terry‘s post. It was quite an interesting read. But I did notice a hint there; you were saying he is an “older male,” or older Mate in his case, hehe.

        Take care y’all. Thanks for the laughs. We need some laughter daily.

      • brenda-denzler

        Member
        July 27, 2022 at 2:04 pm

        Well, unless he had triplets — all girls — at the age of 10, I’m guessing Terry is long enough in the tooth that if he goes walk-about, this means going around the block now. I can picture it: He’s plodding along, dragging an O2 tank behind him with one hand, and holding one of his espressos in the other, sipping on it all the way. 😉  In fact, he may be one of those mates who’s survived the 60s…twice!

      • jen-cueva

        Member
        July 28, 2022 at 11:06 am

        LOL, @brendad53, I almost spit out my iced coffee on my screen. Thanks to you for that vivid description of our Mate, @terry. I’m sure he can add to this and keep this story going.

        You too would be a comedy show if we had you in one place together. I can see it now, the skits you can grace us with. Hehe.

    • jen-cueva

      Member
      July 27, 2022 at 1:42 pm

      LOL, @terry, of course, your post makes me laugh. But first, do you drink 5 espressos per day? No wonder your heart is pounding, Mate.

      On the issue of the male vs. female reactions to vaccines. Like @brendad53, I have heard that and look forward to reading the article she shared. But I’m sorry that your arm and body were sore for three days. Maybe the burning the bra days did help us somehow, LOL.

      Hopefully, you’re feeling much better and all done with your boosters for now. Take care and keep us posted on what’s new, Mate.

  • Colleen

    Member
    July 28, 2022 at 12:51 pm

    I am late to this comedy club but I’ve been having a blast catching up @terry, @jenc, @brendad53. I love how you can be both so helpful and hilarious at the same time!

  • terry

    Member
    July 29, 2022 at 12:18 am

    There you go, correct as usual. Hell I’m good. You had me going there Brenda re that interesting article until I realised it was written by a female scientist as a ruse.  I was in my twenties in the sixties and thesedays I hear about all the shenanigans that went on by people who were not there and I ask “where was I?” . All lies . Jen ,mate, one real expresso has about a third the caffeine of a mug of brewed so five expressos over the course of the day equals … You have heard about the stages in the days of the life of a male.
    Sex sex sex, sex sex money, sex money money ,money money money , money money toilet , toilet toilet toilet . Well since I have been on the diuretic guess where I’m at. Gotta go,see ya.

     

  • dorothy

    Member
    July 30, 2022 at 3:34 pm

    Although I found this site hoping to learn about my long-term diagnosis with PH, I have to say I devour humor anywhere I find it and am so glad to come upon it here.  Thank you.

    I also just read something Colleen wrote about her trying to see herself as more than just a caregiver after so many years of intense caregiving.  What a gifted writer.  Colleen, can you make it more widely available at this site?

    Dot Browning

    • Colleen

      Member
      August 1, 2022 at 4:27 pm

      @dorothyirwin-browning thank you for reading my columns and sharing how much you enjoy them!

      When you scroll to the very top of the forums you will see a “Home” tab. Click on that then hover your mouse over “Columns” and select a PH columnist you would like to read. I promise they are all excellent!

      But here is a link to my personal page. I am published every Monday.

      Live as A Caregiver

    • jen-cueva

      Member
      August 2, 2022 at 11:57 am

      Hi @dorothyirwin-browning, I agree with you; we all need to find that humor where we can. I’m grateful that you are benefiting from the forums and columns.

      So true; @colleensteele is such an outstanding writer. I always learn from her topics.

      Working in nursing, I tend to relate to some extent. Like @colleensteele, it’s challenging when the tables turn and you’re not the caregiver you once were.

      I love that her son, Cullen is so empathetic and loving as he tries to care for his mom and make her put herself first, for once. My heart melts every time.

  • jen-cueva

    Member
    August 4, 2022 at 11:48 am

    Hi @karene, you may find this post helpful, too. How do you stay hydrated in that Vegas heat?

    • Karen Endelman

      Member
      August 4, 2022 at 12:24 pm

      I’ve changed my habits from guzzling water all day to sipping water when I need to.  I was having edema issues but am on 2 diuretics that are working really well together. I work from home so I am able to put my feet up on a chair while I work until it gets uncomfortable.  Moving around throughout the day also helps the edema.  And, because of the extreme heat we can have out here, I try to get things done outside  the house in the mornings before it gets too hot.

      • jen-cueva

        Member
        August 4, 2022 at 1:00 pm

        Yes, @karene, I was also a water gulper before this started. Now, I’m on a limited fluid intake, so I fill my water bottle with my daily water limit. I sip on that throughout the day and with taking meds.

        Working from home and putting our feet up helps. Also, moving around, as you mentioned, will help the edema in our legs.

        Are you only a water drinker for fluids, or do you enjoy tea and coffee at times, too?

        Do you enjoy summer fruits and veggies with high water content, like cucumbers, watermelons, etc.? I have some cucumbers I peeled and sliced ready for snacks and salad in my fridge this week. I enjoy watermelon less often because it’s too easy for me to eat my weight in that stuff.

      • jen-cueva

        Member
        August 4, 2022 at 1:01 pm

        Yes, @karene, I was also a water gulper before this started. Now, I’m on a limited fluid intake, so I fill my water bottle with my daily water limit. I sip on that throughout the day and with taking meds.

        Working from home and putting our feet up helps. Also, moving around, as you mentioned, will help the edema in our legs.

        Are you only a water drinker for fluids, or do you enjoy tea and coffee at times, too?

        Do you enjoy summer fruits and veggies with high water content, like cucumbers, watermelons, etc.? I have some cucumbers I peeled and sliced ready for snacks and salad in my fridge this week. I enjoy watermelon less often because it’s too easy for me to eat my weight in that stuff.

      • Karen Endelman

        Member
        August 4, 2022 at 1:10 pm

        I mostly drink water but like to start my day with some orange juice.  And I allow myself a cup of green tea since my BP is great, though I know we’re supposed to limit the caffeine.

        I do eat fruits and veggies.  Oddly, before I got sick, I was quite healthy 🙂

        When I found out I needed to watch my sodium intake I started reading labels to know where the hidden sodium was.  I found out what the acceptable amount of daily sodium was and monitored my intake.  Turns out I have a low sodium diet.  I don’t eat a lot of processed foods which is a huge culprit is hidden sodium and sugar.  I haven’t been eating out so that also takes away sodium I have no control over.  But honestly, I am craving an eggplant parmigiana hero so that may be my first “cheat” meal.  I now it’ll be loaded with salt but it’ll taste so good!

  • jen-cueva

    Member
    August 4, 2022 at 1:23 pm

    Hi @karene, it sounds like you were and still is pretty healthy minus the PH. That’s always great not to have any underlying health issues added to the mix. PH is complicated enough, right?

    I also like some juices, but I hate to admit I’m so far from as healthy as you are with my diet. But the positive is the weekdays are usually my healthy meals; then weekends seem to be more of cheat meals mostly.

    Fruits and veggies are great for nutrition and other benefits. I admire you for cutting out added sugars. I’ve been working on that with my hubby, but I also enjoy sweets. It’s not easy if you haven’t followed that diet plan for some time.

    My hubby loves eggplant parm over chicken parm. It is yummy. I recently saw a fresh roasted eggplant bake recipe that looked good. If I find it, I’ll share it here with you. Do you have a favorite Italian eatery in your area, or will you cook it at home? That sounds great, and it’s almost my lunchtime here, LOL. I’m in San Diego, not too far from you.

  • dorothy

    Member
    August 7, 2022 at 3:21 pm

    Karen which 2 diuretics are you using?  I take generic Lasix alone.  Dehydration is a biggy for me.  I know of nothing that works to hydrate except fluids.  Anything less than 8 cups of water per day plus other liquids like my soupy diet and orange juice, then I have symptoms of dehydration.

     

    • jen-cueva

      Member
      August 8, 2022 at 1:40 pm

      Hi @dorothyirwin-browning, have you discussed your complication with dehydration with your PH team? Maybe they can decrease your Lasix a little and see if that helps.

      I’m on Lasix, Aldactone, and metolazone. Metolazone is as needed. The others are twice per day. But I have a history of congestive heart failure (CHF) and chronic kidney disease (CKD).

      Dehydration is not good and is no fun. Your medical team should be alert to this complication. Thanks for sharing.

  • Colleen

    Member
    August 8, 2022 at 7:12 pm

    While this topic is still “hot” I thought I would share my column from last week:

    The Heart of the Matter: Grappling with the Dangers of Dehydration

    Let’s just say, I did not take our discussions about staying hydrated seriously enough and ended up having a serious event.

    PHriends, seriously, stay hyrdated!

  • jen-cueva

    Member
    August 9, 2022 at 11:41 am

    Hi @colleensteele, I’m so sorry that you experienced that horrible feeling and symptoms of dehydration. I am also grateful that you made it downstairs without falling and injuring yourself.

    It seems that the caregiving roles have reversed, and now Cullen is taking care of you as you taught him well. His patience is such a calming effect, as I am confident that he also picked up from you through the years. With an expert caregiver as his teacher and his experience with PH and transplants, he has such an amazing, caring heart. I know he will be excellent in his career once he finishes school.

    I’m very thankful for Cullen and his checking on you and getting you to care for yourself. Excellent learning column, but please take care of yourself as you do well for everyone else.

    Your point about over-hydration for PH patients is relatable to many, as this is often drilled into our heads. But we must find that balance for our bodies.

    And yes, grab that bottle of water. Stay hydrated, my PHriends.

Log in to reply.