This topic contains 29 replies, has 9 voices, and was last updated by  Brittany Foster 1 month, 1 week ago.

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  • #16128
     Brittany Foster 
    Keymaster

    Many of us are on diuretics to help with water retention and may have been told specific amounts of fluid that we should stick to during the day. I have never been given an exact amount of fluid that would be “appropriate” for me. My doctors just base it off of how I’m physically feeling.

    It can be difficult when figuring out how much water is enough and how much water is “too much” for your body. There are times when I drink 6 cups of water a day and don’t have much bloat, and other days I drink just a few cups and have a lot of bloating and swelling. I try to stick to a good amount of water (usually around 6 cups a day). I try to avoid getting dehydrated. I know when my body needs water because I start to experience symptoms of dehydration like cramping of the muscles, dizziness, and low blood pressure.

    How much water do you usually drink in a day? Do you track your fluid intake? Do your doctors give you specific guidelines for water and fluid if you are on diuretics?

  • #16147
     Robin Webster 
    Participant

    I was told to keep my daily fluid intake under 2 liters, but that wasn’t just what I drink. That is to include fluid from things like fruit, soups, etc. And as far as dehydration, my doctor has told me that he actually wants me to stay borderline dehydrated in order for my PH meds to work appropriately. At first I tracked my fluid intake religiously, but now after five years or so, I can pretty much just tell. I’m on quite a bit of diuretics, but unfortunately due to a G.I. bleed and a combination of huge weight loss, I’ve run into some problems with “low volume” causing acute prerenal failure, so all my diuretics were stopped for three days this past weekend and they have been resumed at half the amount they were before. Hopefully that takes care of that issue, and maybe I’ll even be able to stay at the lower amount. (Previously I was on 80 mg of lasix twice a day with an additional one to be taken at my discretion if I had any edema.) I don’t know if anyone else has run across this, but I’ve noticed that when I take my first diuretic of the day has a huge impact on how well it works. I wasn’t told this by a physician, but a relative who was on it told me that if she took hers very early in the morning (when she first got up to pee and then went back to bed, lol!) instead of when she got up for the day, it worked like crazy … but not so much if she took it later in the morning when she stayed up and started her day. I’ve found this to be absolutely true for me, too.

    • #16162
       Brittany Foster 
      Keymaster

      Hi Robin,
      It sounds like you have a good grasp on the signs your body is giving you when it is feeling off or dehydrated. I hope that he difference in the lasix dosage starts to help. It is always good when you have some type of regimen that works for you and with your body best. I always take mine when I first get up and could NEVER go to bed after taking it because I would probably pee the bed. Although, mine usually works best when I have been up and moving because it gets everything flowing in the right direction and I end up peeing more when I’ve been active at the beginning of the day !

    • #16748
       Lesli Shambly 
      Participant

      I’m consuming a more than 3L water daily, and Feeling a fresh and active on work and healthy as well.

      • #16749
         Brittany Foster 
        Keymaster

        Lesli,
        That’s amazing to hear. Water has helped me so much with flushing out my system. I feel like it is the best “detox” out there. Especially after all the procedures I have been getting that require some level of anesthesia or sedation, it’s important to flush out the system as best as I can. Do you just drink these liters in water or do you use other fluids too in this intake?

  • #16206
     Jessica Kiser 
    Participant

    I’m supposed to stick under 2L but I have trouble. All of my pills give me dry mouth and I’m on a large amount of diuretics, so I end up drinking more. It’s a catch 22 with me. I had a disease other than PH that requires me to stay hydrated because of nosebleeds and then PH where they want me dried out.

    • #16209
       Brittany Foster 
      Keymaster

      Hi Jessica,
      I am kind of the same way because I take medication that has the potential to dehydrate me, but I also have a condition where my blood pressure drops with standing a lot if I’m not properly hydrated and this can cause differences in blood return and blood flow to the body. so I totally can relate to what you’re saying with it being a “catch 22”. Do you end up just basing it off of how you feel? Or when your mouth is dry maybe having something like gum might help to increase some saliva production in your mouth or hard candies? This is something that has helped me !

      • #16233
         Jessica Kiser 
        Participant

        I definitely use gum and mints as a go-to when I’m somewhere that I can’t have water or am hitting my fluid “limit”. But yeah, I typically just base my fluid intake off of how I’m feeling and how thirsty I am. I drink like a horse though, so sometimes it’s super hard to judge.

      • #16353
         Brittany Foster 
        Keymaster

        Jessica,
        I totally get it! I know that it can be so hard to judge how much we are actually drinking and taking in for fluids. Especially because fluid doesn’t necessarily just have to be water. I always know when I overdo it with the fluid intake though because my hands are usually swollen and my abdomen is swollen the next day! Do you get any of these symptoms if you have taken in too much?

  • #16207
     Kimberly 
    Participant

    I’m allowed 2L a day and I take a lot of diuretics. I constantly feel thirsty and have dry mouth. I usually keep sugar free life savers in my pocket to help with the dryness.

    • #16210
       Brittany Foster 
      Keymaster

      Hey Kimberly,
      Before I read your post I posted a similar suggestion to yours about the lifesavers ! It does help me with dry mouth to have some type of lifesaver, mint, or sour hard candy to have!

  • #16428
     Jen Cueva 
    Participant

    Definitely a catch 22 here ! It’s often hard to maintain the balance and what works one day may not the next, for me, anyway!

    I was just put on 1.25 liters per day , although they want me to be more conscious about the “ free “ water , so soups and other liquids I am cautious but more so with just free water ! I have kidney disease as well so my PH doc and Nephro try to work together ! My PH Doc for years ( previously) never had me on fluid restriction!

    As I just told them both , the meds make my mouth so dry , so often I keep jolly ranchers, tic tacs, and other hard candy to suck on. Definitely don’t suck on ice , when my iron was so low I ate ice and got so bloated !

    • #16438
       Brittany Foster 
      Keymaster

      Jen,
      you’re so right that what works one day for fluid intake might bloat you another day ! I find that it also depends on what I eat and the hidden sodium content in foods too. When I used to go out and drink with friends I noticed that I would INSTANTLY get swollen because of the alcohol. I haven’t drank in months because of what has been medically going on with me, but it was incredible how fast my hands would swell up and my face was always swollen the next day. If I went to a party with rings on, I would always leave with them in my pockets because it HURT when they would swell.

  • #17637
     Oleh Korniienko 
    Participant

    More than 2 litres in a day,i think.

    • #17646
       Brittany Foster 
      Keymaster

      That’s really good Ole! My doctors recommend around that amount to me too. Is this something your doctors have recommended? Do you have a limit on your water intake ?

  • #17660
     Colleen Steele 
    Keymaster

    I thought what @robin-webster said is interesting. I haven’t heard a doctor suggest before to stay borderline dehydrated in order for PH meds to work appropriately. That must be a difficult balance to maintain thought, keeping yourself from getting too dehydrated. Robin, I can relate to what you said about soups, fruit and other sources counting as fluid intake. When my son had PH and on a lot of diuretics his doctor was satisfied with counting these other forms of hydrating as his fluid intake count. I can’t remember what his requirement was when he had PH, I think it was 1.5-2 liters if possible.

    Since post-transplant he MUST drink 2.5 to 3 liters a day of water, no substitutes. This is because he has kidney disease now caused by transplant medications. If he does not drink enough every day he starts to not feel well and when he had PH, he would get migraines from dehydration.

    Drinking a specific amount of water every day is not easy. I sympathize with this challenge that you all face every day, especially when you are taking diuretics. It’s not an easy balance.

    • #17661
       Brittany Foster 
      Keymaster

      Colleen,
      It can be so tricky, especially with co-existing conditions that require more hydration . Personally, I have bladder and bowel conditions chronically and i also have to take lasix (since my surgery I am not on double the dose that I was on before). I am getting a lot of my nutrients in through shakes and drinks with blended up fruits and vegetables because softer foods just feel better for my esophagus right now. But the liquid that I put into it is also added into my intake.

      It’s hard with the lasix though because I have chronic retention problems because of the nerves around my bladder being destroyed by a spinal condition my family and I have. So you can imagine what it’s like when I feel like I have to go more with the lasix but some of it doesn’t come out. Sometimes this requires catheterizations which is just a pain in the butt to do on my own.

  • #17714
     Jimi Mcintosh 
    Participant

    I drink over 3 liters a day, they reduced the amount of water pills
    Due to decline in kidney function,
    Always thirsty. My CHF seems to be the same, though, I feel weaker everyday

    • #17716
       Brittany Foster 
      Keymaster

      Hi Jimi,
      That seems like a lot of water but I’m glad that you’re able to drink that much. Do you get bloated from that amount that you take in? I cam barely do 2 liters and I get a lot of bloating going on if I don’t take my diuretic medication.

    • #17720
       Jen Cueva 
      Participant

      Wow, Jimi, that’s a high fluid intake! I have chronic kidney disease and my Nephrologist and PH Doc limit my fluids and I’m always thirsty, as well.

      I’m like Brittany, I know for me , I would definitely feel bloated and experience increase in shortness of breath with that much fluid. You mention that your CHF is no different, mine gets worse when I have too much fluid. I know that our bodies are all different , with that much fluid and decrease in diuretics , along with poor kidney function, I’m just surprised that amount of fluid doesn’t really affect you . It’s great that you are able to tolerate that much fluid per day .

      • #17736
         Colleen Steele 
        Keymaster

        Jen, my son’s kidney disease must still be at an early stage because the opposite is true him, his doctor wants him drinking as much water as possible. He is required to drink 2.5 liters a day but if manages more, than great! So far his symptoms have been more blood pressure related so he is on 2 BP medications and a diuretic was just added last month. He hasn’t been on a diuretic since he had PH. From what I am hearing from you and Jimi, it sounds like as things progress balancing the need to keep the kidney’s hydrated but not overdoing the fluid intake is going to be tricky.

      • #17751
         Jen Cueva 
        Participant

        Colleen, I’m glad to hear that your son is early in his kidney disease and seems to be stable! I do recall you mentioning his main issue is high blood pressure, I hope that is better controlled now with his meds.

        Yes, balancing the hydration versus dehydration and then throw in congestive heart failure , and it’s tough. I think learning what our bodies can tolerate , which is often varied, is key. For instance, this time of year, I find I swell and retain fluids quicker.

        It’s very interesting how different our bodies react to these diseases and meds.

      • #17755
         Brittany Foster 
        Keymaster

        Colleen,
        I definitely can empathize with your son on those blood pressure medications. What medications is he taking if you don’t mind me asking? I am on metorprolol 50 mg during the day and 100 extended release at night. It is more for my heart rate control vs blood pressure control though. I know these medications can be really helpful for high blood pressure though but they unfortunately sometimes have some annoying side effects.

        Jen, I can’t even imagine being on that high of a level of lasix !! You must have been on those giant horse pills of potassium too. Were you electrolyte levels checked often? Even when I was just moved up to 60 mg during the day after my surgery, I had to have electrolyte levels tested and had my potassium pills that I usually just opened up and put in pudding! I also swell and retain fluid more easily with the warmer weather coming up. It’s as if my veins just seem to bulge out too in my arms and hands and my fingers get so swollen! No rings for me this time of year !

  • #17729
     Jimi Mcintosh 
    Participant

    I was on 160mg of Lasix daily and
    2.5mg of metolazone 2-3 times per week.
    Kidney function declined and polycystic
    Right kidney acting up. Now it’s 80 mg
    Lasix per day. I am going to see another Nephrologist, I think the fluid intake is to much, but I wake dehydrated, glucose level is in normal
    Range, no colored sodas, 1 cup coffee.

    If you see someone towing a portable “Jonny on the job” , that is me. Lol
    My anxiety level goes up if the interstate shuts down
    Goes up if the interstate

    • #17730
       Colleen Steele 
      Keymaster

      I like your sense of humor Jimi although I’m sure the situations you find yourself in sometimes are not so funny. We use to tease my son that he liked touring public bathrooms because no matter where we went, he always had to go…darn Lasix. I sympathize with your kidney issues because my son is going through that now, although at the moment he is pretty stable. I’m hoping he stays that way for a long time. I hope your new nephrologist figures out a better dosing and/or medication for you. Let us know how it goes.

    • #17753
       Jen Cueva 
      Participant

      Lol JImi, I can relate !

      I was on 360 mg of Lasix and 100 mg of Aldactone daily and then 5 mg of Metolazone several times per week. That was to help my CHF, although it took a toll on my kidneys , hence now I’m on 80-120 mg of Lasix daily and 100mg of Aldactone daily. My Nephrologist took me off the Metolazone, as it drained my electrolytes so fast.

      Do you have that issue? I’ll definitely be following you on the road as I know you’ll have the portable john , hehe

    • #17756
       Brittany Foster 
      Keymaster

      Jimi,
      What are you symptoms with the kidney problems that you are experiencing right now? I have had some kidney reflux since I was a child from a conditions that I was born with of my lower back and sacral area so my bladder function has been pretty impacted for as long as I can remember. Sometimes it causes me to self catheterize which is a giant pain in the BUTT when taking lasix too. I hope you don’t find yourself having to self cath because of your kidneys. Does your kidney specialists work well with your PH docs?

  • #17748
     Jimi Mcintosh 
    Participant

    The biggest issue in any treatment program is getting the providers to
    Put those giant egos down and talk to each other. Most medical notes are on line easily viewed by all involved in your care. Be knowlegible of what you are prescribed and why, question the reason, share the information, remember a drastic mistake, affects you the most. I provide them notes from
    The other one. If you are being hospitalized, make sure everyone is aware of your needs, your speciality meds are not readily available in most pharmacies, like with Adempas, 3 days missed, you start titrations again.

    • #17754
       Jen Cueva 
      Participant

      Yes, so true, JImi!

      I know before, I had to take all of my PH medications to the hospital, now at my PH Hospital, they have all of mine except Uptravi. That’s a move forward in the right direction , I’m thinking.

      Good luck in your search for a new Nephrologist. It’s very important that we “ vibe” with all of our doctors.

    • #17757
       Brittany Foster 
      Keymaster

      Really good advice Jimi!
      I know for me, I am lucky that my medical team responds pretty quickly to online emails or messages in the patient portal online. That makes a world of difference especially when going through any ER or experiencing an emergency. it helps to bring specialty medications with us too because you’re right that sometimes that pharmacies have a delay in ordering medications or they don’t always have exactly what we need.

      I am lucky that my doctors now all are in close communication with one another but it certainly hasn’t always been like this. I had to do a lot of self advocating, doctor “shopping” for the right fit for me, and had to find a good primary care doctor. That was really key for me was having a primary who is on top of everything going on and wants to communicate with the specialists and takes the time to actually KNOW when I’m in the hospital and calls me. I feel like that’s unfortunately so rare to find a doctor to do that !

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