• susi-steppins

    Member
    April 23, 2021 at 10:14 am

    Good morning @colleensteele and @tammac816 .
    This is a very big problem for me.
    When I was originally diagnosed last July I was in the hospital for 7 days and from the time that I was checked in until the time I was released I lost over 30 pounds in water weight by being on heavy duty diuretics.
    After I went home I lost more water weight and over the course of 2 months I lost a total of 58 pounds.
    Sounds crazy but it is true.
    Since then the water weight keeps creeping up on me and is a constant problem.
    The balance of medication is tough to pinpoint and it changes all of the time.
    Since I started taking Ambercentin the problem has gotten worse.
    I take a lot of diuretics daily which means it is difficult for me to leave the house at certain times of the day.
    I have to time my outings around my medication and sometimes set an alarm to wake myself up to take my meds very early and then I am up every 20 or 30 minutes.

    I also take a lot of potassium in pill form, but I also supplement with making sure I eat a lot of potassium rich foods.
    I have found a water that is sold in some stores by Nestles called Active.
    I drink at least one of them daily.
    It has almost 800 mg of potassium in it.
    Natural things you can do is walking, putting your feet up when sitting, making sure you get enough rest.
    You can also ask your doctor about dandelion root.
    It is supposed to be a natural diuretic.
    Also, coffee is supposed to be good.
    There is a lot of information on the internet about natural diuretics.
    But if it gets too severe you may have to ask your doctor about medication to help you.
    I hope you find some relief.
    Keep us posted on how you progress.
    I may learn from you something that will help me too.

    • Colleen

      Member
      April 23, 2021 at 12:18 pm

      @s-steppins thank you so much for responding to this. You offer lot’s of good advice based on experience. @tammac816 just a reminder that before you add supplements to your diet or even coffee, mention it to your doctor. Because we are all on different medication, have co-existing conditions, etc., some things might not be ok for some people. Susi offered many suggestions perhaps worth looking into.

  • pad2018

    Member
    January 31, 2023 at 4:55 pm

    I know this is an old post but just asking the same question. My mom had a lot of water retention  when first diagnosed . She was double her weight and a lot around her tummy area. Since she got discharged for the last 6 years she has been very steady and it started all over again now since December. We are working with her doctors. Question is what diuretics do you take? She is.on Bumex for a while and the dr is switching it totorsemide from tomorrow. Any of you taking it? Any of you switched like us and did that help?

    • Colleen

      Member
      January 31, 2023 at 5:30 pm

      @pad2018 there are no old posts here. We encourage our members to revisit former topics because what didn’t apply to people at the time it was posted might apply to them now. Thank you for bringing this important topic to the forefront again.

      My son was diagnosed with PAH in 2008 and received a transplant in 2014 so some of his medical history is a little fuzzy to me now. I can’t remember what diuretic he was on when diagnosed but years later he was switched to furosemide and remained on that until transplant. From what I remember the other diuretic was deemed not effective enough.

      Furosemide is a loop diuretic medication used to treat fluid build-up due to heart failure, liver scarring, or kidney disease. It may also be used for the treatment of high blood pressure. I think their choice of furosemide was because he was in worsening heart failure.

      When I looked up totorsemide it’s purpose is identical to furosemide. How is your mom’s heart doing? Increased heart problems can cause an increase in water retention but it isn’t the only possibility.

      The furosemide worked better for Cullen but I remember the dosage frequently being altered between increase and decrease. It worked better but wasn’t perfect. He still had occasionally flare ups but for the most part it stabilized the edema.

    • debbie-moore

      Member
      February 15, 2023 at 1:49 pm

      I take Torsemide.  Four pills every morning.  I have lost 15 pounds of fluid and my BNP is almost normal.  However, it is a daily battle.  As I sit here typing, I can feel the tightness growing in my ankles.  I tried Aldactone and had a terrible reaction, so now it’s my allergic medication list.  I’ve cut out the salt.  That has been a huge help.  I miss it, but I feel better without it. Also, I only have 60 oz of fluid a day.  I feel like I am thirsty most of the day. I hope your mom keeps trying the different diuretics until she finds one that will make the difference.  Also, my cardiologist says when taking the diuretic you should have to go to the bathroom within 30 minutes after taking it.  I wasn’t so she increased from 2 pill to 4 pills.  So make sure to talk to the doctor about dosage as well.

  • jen-cueva

    Member
    February 1, 2023 at 12:37 pm

    Hi @pad2018, I’m sorry to hear about the increased fluid retention your mom is experiencing. I also tend to retain fluid in my belly and am too full to eat. It’s so uncomfortable, as you already know, seeing your mom deal with this once again.

    I am taking furosemide, Aldactone, and zaroxyln. These work in different ways. Once, my previous PH doctor and head of the heart failure team were going to switch me to torsemide. But we decided not to at that time. He said we sometimes need to switch up the treatments or adjust dosages to be most effective.

    Like your mom, I’ve been on diuretics for almost 18 years. It’s trial and error to see what combination offers the best relief for our unique needs. I find that Zaroxyln helps me when I take it. I only take it once weekly unless I retain more than 6 pounds of fluid. It’s based on a sliding scale.

    But I also have chronic kidney disease from taking these for years. That means we must be careful not to damage my kidneys any further. That can also cause swelling in the tummy. How are your mom’s kidneys?

    Your mom is fortunate to have such a supportive son. How are you doing? How’s she doing other than the increased fluid retention?

  • hall-skara

    Member
    February 3, 2023 at 3:47 am

    Hi!

    I guess my answer will be a little different. I was diagnosed with quite severe PH in 2005, but I have never had any problems with adema. I have never taken diuretic either. I eat healthy food (no fast food, processed food, etc.) and try to avoid excessive amount of salt. I weight myself at least once a week in order to keep track of my weight and to quickly detect any water retention, if it should occur.

    • Colleen

      Member
      February 3, 2023 at 10:35 pm

      @hall-skara it sounds like you have excellent will power! That is fantastic that you have been able to avoid edema and smart that you don’t assume you always have it under control. Weighing yourself once a week and eating healthy are top notch ways of advocating for yourself!

      • hall-skara

        Member
        February 4, 2023 at 5:10 am

        Hi Colleen. (How do you create the name link, btw?) I should mention that I am not sure that it is my healthy habits that have kept my edema away. It might simply be that it is something with my disease that causes me not to have water retention. However, the way I have been thinking about this from the moment of my diagnosis, is that it will serve me well to live as healthy as possible. A healthy lifestyle will, for sure, not be negative when one is sick with PH.

        So when I am still on mono oral therapy and with no edema 18 years after my diagnosis, I hope that my lifestyle has contributed to it. However, I don’t know – this might just be the way my disease would have progressed anyway.

      • jen-cueva

        Member
        February 6, 2023 at 11:00 am

        Hi @hall-skara, I am happy to hear that you have found what works best for you. Not having any edema is a blessing, and I am sure your healthy habits also contribute to this. However, as you mention, you may be someone who doesn’t have edema. I know other PHriends who have never been on diuretics, too.

        Congrats on no diuretics and oral mono-therapy for 18 years! I’ll be celebrating 18 years next week. However, I was in CHF when I was diagnosed. Thankfully, I’m on fewer diuretics now than I was years ago. I’m also on oral therapy.

        You do such a great job at preventing your PH from worsening. We all should be working towards that, and I do, but I doubt I eat as healthy as you.

        You asked how to create the name link; if you hit “@” and then type the name, it should self-populate a few names you can select.

        Thanks for sharing your experiences. How have you been?

      • Colleen

        Member
        February 6, 2023 at 10:29 pm

        @hall-skara you’re right, this might be the path your PH was going to take no matter what but a healthy life style can never hurt. Many of us struggle to maintain good habits so when I meet someone who has a handle on it I’m impressed. My son is the same way. He can stick to a healthy routine so much better than I can!

        How To Create Name Link: Good question!

        Make sure you are writing in Text mode, not visual. Those 2 tabs are on the top right of of the box in which you are typing your comment.

        Type the @ symbol followed by a few letter of the persons name. So for example, @Jen and just let your curser hover for a moment at the n. Names will pop up and you just click on the one you want. In this case @jenc.

        I hope that helps. If not just let us know and we will do our best to explain better.

      • jen-cueva

        Member
        February 7, 2023 at 11:01 am

        Hi @colleensteele, thanks for clarifying my difficult instructions to @hall-skara for getting the name links to self-populate. You are such a detail-oriented soul. I love it- that’s why we compliment each other so well. I leave out those details or either add too many and talk way too much. You break things down, I admire that in you with so many other qualities. Thanks so much for being the best forum co-moderator with me.

        Hall, if there’s anythinmg we can do, let us know.

      • Colleen

        Member
        February 8, 2023 at 12:42 pm

        Oh no @jenc! I somehow missed your response regarding the name links question. It must have felt like I didn’t think your instruction was sufficient, which I’m sure it was. I have a tendency to over-explain things. Sorry about that!

      • jen-cueva

        Member
        February 8, 2023 at 2:57 pm

        LOL, @colleensteele, no worries. Your response was much more thorough and will help Hall and others who need those tips.

  • md-abul-kalam-azad

    Member
    February 5, 2023 at 3:13 am

    My son also face the edema problem. He takes 60 mg furosemide every day. Previously he took 20 mg. and in has been increased by the years. Can any body tell me the natural ways to reducing edema.

    My son also facing another problem which is called metabolic dysfunction. If some one can give advise in this regards.
    Azad

    • jen-cueva

      Member
      February 6, 2023 at 11:10 am

      Hi @azad, I’m sorry that your son needs more furosemide for the edema. I am unsure if his medical team has suggested a specific heart-healthy diet, but that is the usual recommendation. As @hall-skara shares, watching his diet and limiting processed and fast foods helps.

      Unfortunately, many people experience increased swelling as a side effect of some PH treatments. This may be the case for your son.
      Increased swelling can also be a sign of the progression of PH and should be monitored closely. Have you asked his care team why they think it has increased?

      I’ll also link to a topic that you may find helpful about metabolic disorders and PH.

      Metabolic Basis of PAH

      I hope you are able to find answers and solutions that provide some relief to your son. Take care.

  • md-abul-kalam-azad

    Member
    February 15, 2023 at 12:26 am

    My son 20 years old also facing edema and IBS problem. can any body assist how he can manage naturally this two problem. He very often get lose motion then eat ORS which may causes edema.

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