June 22, 2022 at 10:03 am #34798
Many with PH take diuretics to manage fluid and help with congestive heart failure (CHF). This is often a balancing game and often a challenge.
This is especially important as the temperatures start warming up. If you’re like me, summertime is when I struggle the most with this balance to manage excess fluid and keep hydrated.
Thursday, June 23rd is National Hydration Day. Let’s share how we stay hydrated. What tips do you have that help you manage hydration?
June 23, 2022 at 1:06 pm #34821
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?
June 23, 2022 at 2:40 pm #34824
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?
June 24, 2022 at 1:38 pm #34846
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.
June 23, 2022 at 2:55 pm #34826Jo Ann whiteParticipant
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!!!
June 24, 2022 at 1:41 pm #34847
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?
June 23, 2022 at 3:36 pm #34827Janet BarryParticipant
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.
June 24, 2022 at 1:44 pm #34848
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!
June 23, 2022 at 4:05 pm #34829Brenda DenzlerParticipant
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.
June 24, 2022 at 1:47 pm #34849
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.
June 23, 2022 at 8:52 pm #34836DorothyParticipant
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.
June 24, 2022 at 1:51 pm #34850
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.
June 24, 2022 at 5:59 pm #34851
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.
- This reply was modified 1 week ago by Colleen Steele.
June 27, 2022 at 10:31 am #34860
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.
June 25, 2022 at 2:21 pm #34856
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.
June 27, 2022 at 10:39 am #34861
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.
June 27, 2022 at 1:05 pm #34872
June 28, 2022 at 3:27 pm #34883
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.
June 27, 2022 at 1:48 pm #34873
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:
June 27, 2022 at 1:52 pm #34874Jo Ann whiteParticipant
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.
June 28, 2022 at 3:31 pm #34884
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.
June 28, 2022 at 4:22 pm #34889
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.
June 29, 2022 at 10:41 am #34902
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.
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