This topic contains 24 replies, has 6 voices, and was last updated by  Jen Cueva 5 months ago.

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  • #17875
     Brittany Foster 
    Keymaster

    Lately I have been paying more attention to where fluid accumulates in my body. I am on a lasix of 20-60 mg depending on the fluid retention. I have a 2 liter goal of fluid daily and am also responsible for determining just how much of the diuretic medication I need.

    To help with determining my dose of lasix for the day, I weight myself in the morning (anything more than 3 lbs gained overnight usually is a sign that I need more lasix). Another sign for me are the outward symptoms of swelling. In particular, when it’s really hot out or when I have retained more fluid I notice that my hands and forearms get more swollen. When I can’t put my rings on anymore know this is one of my symptoms. Sometimes my face gets puffy and my stomach feels extra bloated.

    Paying attention to these physical symptoms really helps me to gauge how much medication I need. What are some of your symptoms that may alert you that you’re retaining fluid? Do your doctors allow you to play with your lasix dose depending on how much extra water you’re carrying or is it just a set dosage every day?

  • #17882
     Jen Cueva 
    Participant

    Great topic, Brittany!
    I am on a scheduled dose of Lasix and Aldactone but I also have control on my evening dose as it depends on my fluid retention.

    I also weigh myself at the same time (or about) and I go by that as well as my puffy (swollen) hands, legs, feet, and belly. I find it hard to get my rings off and on as well. I also tend to feel it when my belly bloats as I cannot eat much and feel full faster than usual. I also tend to have more shortness of breath, even with basic activities. My legs also get really heavy , almost like lead and I know I am retaining fluid, or as my hubby’s says,” looking like a puffer fish.”

    I think that the longer that we live with these issues we tend to know more of what may be extra fluid versus over eating , etc.. and therefore we know more about how our bodies react to the extra fluid. I know it can effect us all in many different ways.

    Yes, this heat definitely causes me to having an increase in swelling. I am on a limited fluid intake as well.

    • #17896
       Brittany Foster 
      Keymaster

      Jen,
      I know being limited on fluid, on the lasix dose, AND in the heat is hard because we don’t want to get too dehydrated either so it can be difficult to balance it all at first. I try getting fluid through what I eat too like eating watermelon when it’s hot out or pineapple or any fruit really that gives some hydration along with it.

      The puffiness and swollen stomach also prevents me from eating a lot so I try to make sure to have more calorie dense snacks in between (when I can eat) because I know the actual volume of what I can intake is limited on these days but I still need the calories for nourishment.

      • #17902
         Jen Cueva 
        Participant

        Let’s try this again, I was typing earlier and not quite awake, I guess. I must have accidentally hit a button and “ poof” went my comment.

        Yes, Brittany, it’s a very tough balance and for myself there is not much room to teeter with. I also love watermelon and pineapple. Just last week, I was reminded from my PH nurse that I need to cut back on my watermelon due to the high water content and how it’s affecting my fluid retention. ( I know, what fun she is ! )

        I’ve found that adding coconut water to smoothies and juices can be helpful with hydration as well. Celery has a high water content too, if I have some on hand, I add a little to my juices at times.

        When I have the dreaded belly bloat and unable to eat much, I tend to eat veggie soups, fruits, and smoothies. I also have a few protein drinks usually on hand to help as well.

        Ironically, you started this discussion as I’m up 7 lbs since Friday morning. If y’all need me , I’ll be in the “ loo”, hehe .

      • #17906
         Brittany Foster 
        Keymaster

        I’m actually going through the same thing right now and am up 4 lbs overnight ! I KNOW it’s definitely not related to what I’m eating and I am moving around a lot more and just being on my feet more through the day sometimes really makes me fluctuate. With increased activity I also get more retention! There is some increased moisture in the air too so i’m sure that’s adding to it. I have already been running to the bathroom multiple times this morning and am just getting back from going to breakfast with my boyfriend so I need my stomach to take a good break!

      • #17910
         Jen Cueva 
        Participant

        Ughhh, sorry Brittany! I know the extra fluid can make us miserable.

        On a positive note, breakfast with your boyfriend, Yay!

        I, too, have been up and not in the recliner with my feet up. I was outside in the heat some Saturday as well, so that makes me swell more.

        Yes, increased activity definitely causes me to have more fluid retention. During a few hospital stays,( some new doctors) a doctor may tell me the diuretics are lower and you’re not retaining fluid like at home, I’m thinking , Duh, I’m in bed and y’all won’t even let me get up except on a bedside commode. Geez….common sense , it never fails, they send me home on lower dosages of diuretics and within a day or so, the fluid starts coming back, as I am up and doing my usual activities.

        Well, definitely may be a “ meeting in the ladies room”, remember that sing ? Hehe

      • #17935
         Brittany Foster 
        Keymaster

        LOL Jen you always find a way to make me laugh in your comments ! I can relate because you would think that more activity would get some of that extra water retention off the body but for me, when I am doing more physical activity I notice and increase in my body holding onto the fluid more. The humidity and days when there is a lot of moisture in the air (even when it rains) but body swells more easily too. Luckily I am able to stay on top of things and can just adjust things and see if that helps out.

        We know our bodies best. I have had trouble in the past with them not having the correct dosage and not having specialty medications available through the hospital pharmacy. To avoid the confusion (and sometimes extra stress on the body) I just remember to take my medications with me when I go to the hospital and just stick to doing what my normal home meds are.

      • #17953
         Jen Cueva 
        Participant

        Hehe Brittany, well you know we have to laugh at these things….

        We sure do know our bodies best, I’m glad I have some control over my diuretics as well, for times like these .

  • #17916
     Colleen Steele 
    Keymaster

    I know a young woman who had PH and immediately after transplant her weight dropped dramatically. Apparently she was retaining a lot of fluids prior. I think because my son’s heart was so damaged by the time he was diagnosed his struggle was always trying to gain weight. Sometimes he would fluctuate a little and he would feel frustrated because his doctors would credit fluid retention instead of actual healthy weight gain. Because he was so thin the retention wasn’t so obvious except when he was wearing socks. The red band on his skin from the elastic was always a tell when he was having fluid issues. I also would notice it under his eyes, sometimes it would get so bad they would look swollen.

    He LOVES watermelon just like the both of you and he thought, “What a great way to get my water requirement in!” Except he would eat way too much of it and…well you can figure out the result. Brittany, I remember his lasix dosage often being adjusted but I don’t think we where ever given the freedom of using our own judgement. That being said, there where times when my son would talk me into delaying a dose because he wanted to enjoy an activity without needing the restroom every 15 minutes. I think his doctor was ok with this as long as he didn’t totally skip a dose.

    • #17934
       Brittany Foster 
      Keymaster

      Colleen,
      my doctors were always more lenient with me when I was a child, especially with allowing things like sports and they would allow me and my mom to judge when I needed some medications and when I didn’t. We had the proper education on it to make our own judgement and I still do for a few of my medications. I like to think of medication management as something that I HAVE the control over. It makes me feel like I’m taking a more active role in my health. I started to be a better judge of that when I was transitioned into adult care too and this was one of the ways I could feel more responsible for my health and made me pay more attention to my body every day.

      I can totally understand about him wanting to hold off on a dose of that medication especially because he didn’t want to be going to the bathroom every 15 minutes ! I had coffee with a friend today and luckily the bathroom was close by because as many people on lasix know, when you gotta go you just GOTTA go hahahah!

    • #17954
       Jen Cueva 
      Participant

      Ohh Colleen, your post just reminded me that I forgot watermelon when I stopped by the store on my way home. I guess it’s better that I wait with this extra fluid. I could eat an entire watermelon if I knew it wouldn’t cause increased swelling.

      I can relate to your son wanting to hold the Lasix until after an activity. I think we all need to do this at times. We can let our doctors know but most, in my experience have been OK with it.

      Like Brittany, I find that having the control over my meds, helps me as so many other things are out of my control.

      • #17962
         Brittany Foster 
        Keymaster

        Jen,
        my feeling EXACTLY about the control thing. It is one of those areas of my life that I know I DO HAVE some type of control over what I put into my body and choosing to take care of my health and take my medications each day. It feels like a privilege to be able to control something as simple as taking medication (but hey, I’ll take what I can get for control hahahaha)

      • #17984
         Jen Cueva 
        Participant

        Hehe Brittany, yes, I agree , I will take all of the control that I can get!

        You mention to Carol about your massages for lymphatic drainage, I am sure that could be beneficial. Do you have to pay for these visits out of pocket or is this something that you have found your insurance covers? I think this is a great tip, as well as using the ice when elevating your legs. Most of us do have issues with overall circulation.

      • #17989
         Brittany Foster 
        Keymaster

        Hi Jen,
        I have also found that a lot of my Phriends have trouble with circulation. We are certainly not alone in trying to manage that. It just depends on the day sometimes for me and is another part of this condition that is hard to control and prepare ahead of time for. But the massage that I get I pay for but I think there are some medical massage therapists that would be covered. Maybe your treatment team knows of someone? I’m sure depending on how they put it through insurance there is a chance that it could be covered for that.

      • #18014
         Jen Cueva 
        Participant

        Thanks for the information, Brittany! I am sure as you say, a Medical Massage Therapist may be covered based on how they are coded. I may look into that further, once I have a few “free”weeks, lol meaning no appointments. I am sure you can relate!

  • #17942
     Carol alexander 
    Participant

    My lower legs bother me and the tops of my feet and ankles swell

    • #17945
       Colleen Steele 
      Keymaster

      Oh Carol, that can be painful. Is there anything that you do when this happens to help alleviate the discomfort?

    • #17952
       Jen Cueva 
      Participant

      Carol, does it help when you elevate your legs and feet? If the swelling is more than usual, I would suggest you let your PH doctor know.

    • #17963
       Brittany Foster 
      Keymaster

      Carol,
      I get the exact same areas of discomfort. I find that when I have been on my feet for a longer period of time or walking around more I get a lot of calf pain and swelling at the tops of my feet. For me, this has to do with the circulation being limited to my extremeties. Something that helps me is ice and elevation. The ice brings some of the swelling down. I also benefited from massage therapy and she would do something called lymphatic drainage that would help with over all circulation. Have you ever looked into massage therapy? Preferably a medical massage therapist (more for medical purposes instead of relaxation) ?

  • #18030
     Jimi Mcintosh 
    Participant

    I press the front of my legs to measure my fluid retention, I awake with swelling in my hands and my face. Some days, I look like the “Pillsbury” dough boy. Whenever, I have breathing issues I know that I have to reduce my fluid intake.

    I was on 160 mg furosemide, 2.5 mg metolazone 2-3 times per week. Because of kidney issues now it’s 8mg furosemide daily. My average fluid intake is 96oz water per day. The big issue is swelling in hands and toes.

    I learned to take my fluid meds as early as possible to be able to sleep most nights.

    • #18039
       Brittany Foster 
      Keymaster

      Jimi,
      I have heard of people doing that pressing on their areas of fluid retention to check for the retention. usually I notice it in my hands and my hands end up getting very painful at night after a long day or after a day where I am having more fluid retention than normal. Usually on these days my veins in my hands or feet really seem to bulge out. Do you ever notice the change in your veins or them seeming to be more “bulgy” when you have more fluid retention?

      I’m sorry you are having the kidney troubles too on top of this. That is a difficult co-existing illness to have on top of having PH.

  • #18047
     George 
    Participant

    Most of the time I can feel my lower legs swelling and my hands also. I take 80 mg lasix but do an extra 40 if needed. Just went through couple bad weeks at work being out of breath and afib.
    Finally got to doctor and he upped my lasix and procardia. Lost 15 pounds and doing much better.
    That extra fluid makes a big difference. Going to try some exercise this weekend. Helps to read other peoples stories with similar issues. you guys are great.
    I think heat and humidity makes it worse.

    • #18049
       Brittany Foster 
      Keymaster

      Hi George,
      I’m sorry that you were going through a tough few days. I can relate to the arrythmias and increased fluid retention. When I have more fluid on my body or when my heart has to work extra hard, it rebels and I feel the workload of it a lot more. Usually I experience a faster heart rate or a heart rate that is too slow and not compensating for the increased work. This usually makes me feel like I am water logged, confused, and just am not myself. This especially happens when I am in the heat or humid weather for too long. This week is has been humid and rainy where I live and my body is definitely feeling the impact of it. I’m glad that the doctors were able to identify what was going on and I hope you were able to “take it easy!”

    • #18051
       Colleen Steele 
      Keymaster

      George, I’m glad the increased dosage helped! I bet the 15 lbs made such a difference for you. Heat and humidity really contribute to the discomfort. Summer is not kind to fluid retention! Thank you for participating in the forums and it’s good to hear that the discussions are helping you.

    • #18054
       Jen Cueva 
      Participant

      George, 15 lbs of extra fluid is quite a bit, I am sure that was a big difference once you got that off! I hate that you are dealing with this issue.

      I am glad to hear that you made it to your doctor and your meds were increased to help offer some relief. The summer heat and humidity definitely do make a difference . I just had to add a third diuretic to my regimen to help combat my extra fluid.

      Be careful if you’re exercising outdoors, I would suggest you try some indoor exercises , unless you are doing it early morning or late evenings, when it is often cooler.

      Does your medical team have you on any type of fluid restriction? If you mention it before, I apologize, I maybe missed it.

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