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    • #14741
      Brittany Foster
      Keymaster

      I know that many of us on the forums, myself included, are on a water pill like lasix. There are some days where I notice more water retention than others. My doctors usually have me weigh myself 2 days out of the week to get an understanding of where my “average” weight is. As woman, we can fluctuate a few pounds from one day to the next so getting an average is best.

      I keep track of my weight especially when monitoring my water retention. Based on the number on the scale I am advised to go up on my lasix to get rid of the water weight and help with the stress is puts on my breathing.

      Do your doctors request that you check in with your weight and weigh yourself? How many times a week/month do you do this? Do you change medications or treatment based on the number?

    • #14746
      Jen Cueva
      Keymaster

      Yes, Brittany, I, too am on several diuretics. My PH Doc was having me weigh daily, but since we adjusted my diuretics earlier this year, I only weigh a few times per week.

      You are correct, as women, we tend to fluctuate a pound or more up and down, so she also stressed that I go by how I feel as well as checking for swelling to my legs, feet, hands, and belly. I take my usual diuretics but always have a prn dose to use as needed. I’ve gained like 6 pounds since my hospitalization last year, so we have a new average weight and I feel ok to go up or down 2-3 lbs.

      I think this is a very important topic for newbies as well as reminder for us long term PHers as well. We are all different and our bodies adjust to things so differently, but all should be monitoring for fluid retention , either by symptoms, weigh, or both,

      • #14756
        Brittany Foster
        Keymaster

        Jen,
        Good point about paying attention to our body and our symptoms too. Sometimes it could be a couple extra pounds of water weight simply from drinking more water or around our menstrual cycle where we as woman have a few extra pounds. If it’s not producing symptoms it’s probably not an issue but I know that if my weight continues to increase without any other cause then I bring it up to my doctor. We know what our “normal” is.

    • #14763
      Jen Cueva
      Keymaster

      Exactly,
      I think,especially for newbies, we tend to think the Doctors all know best, without sounding rude, we learn our own bodies and our “ norms” and often need the doctors to listen to us…this is why it’s so important to have such a good patient/doctor relationship. I trust my doctors, but I also know they respect me and know after living with this daily for years, I, too, know myself quite well. My hubby knows my norms, quite well too, I must say, lol 😂

      • #14766
        Brittany Foster
        Keymaster

        Jen,
        Thats awesome that your husband is able to know what your normal is too. My boyfriend will pick up on when I’m having an off day and he has been getting better at that. You’re right that a good doctor and patient relationship has to be one where they listen and learn from us as much as we learn from them. They need to listen to LISTEN and it’s okay if they don’t always have a response. We should be their best teachers.

    • #14816
      Constance
      Participant

      Good morning Brittany

      Well it has been a while since I commented but felt compelled to communicate on this subject. In February of this year my Doc put me on an aggressive regimen of diuretics I take two of them and my daily dosage is 165 mg per day. One kind 20 mg tablets 3 tablets by mouth 3 times daily and the other 25 mg 1 tablet once daily. Also my doc has restricted my fluid intake to 2 liters per day, because my sat level was tanking and because of my weight gain during the previous 5 months. That and the additional weight made breathing really a challenge. So, I took my doc very seriously restricted my fluid intake and set out to lose weight, since February I have lost 30 pounds. What a fantastic difference that has made. I forgot to mention my doc suggested I weigh myself daily in the mornings and keep a daily diary which I did and continue to do. I can only say, I am feeling so very much better since I lost weight and I am continuing to follow my docs plan and lose another 30 pounds.

      Connie

      • #14818
        Brittany Foster
        Keymaster

        Hi Connie,
        It’s great to hear from you. I’m sorry that you were dealing with the added fluid weight and that this was causing these symptoms for you. It seems like you and your doctors have a good plan and that you are following it closely. It’s always good when you can see the improvements happening because it makes it easier to WANT to follow your plan each day. Keep us updated with your weight loss journey ! Besides the water intake and the medications, are you changing your diet or trying to exercise as well? Have your doctors recommended a nutrition plan for you or exercise that you can do?

    • #14829
      Jen Cueva
      Keymaster

      Hi Connie,
      It sounds like you are doing great at getting rid of the excess fluid! When we retain lots of fluid, it definitely makes it even harder to breathe.

      Congrats on working closely with your doctor to get the fluid off and weight! Hope this continues and you are able to enjoy some things you like as you feel better .

      • #14838
        Brittany Foster
        Keymaster

        Jen,
        that is always the hardest part for me when I can’t enjoy the things that I want to ! Or when I can’t physically do them! A lot of me was taken away from terrible symptoms but I’m glad for medications and treatments that help me do more to the best of my ability.

    • #14831
      Steve Stiffelman
      Participant

      Hello All,
      I am new to this forum. I was diagnosed with PAH almost 3 years ago. I see a terrific pulmonologist who asks me every visit if I am experiencing any swelling. A few months ago I noticed swelling all below my waist. I spoke with my nurse and she wanted to to know my weight. I had gained about 20 pounds in a little over 2 weeks. I am always trying to gain weight so I thought it was a good thing. I was told to get to Emergency Room ASAP. I was admitted and spent the next week in the hospital. To make a long story short, I am now weighing myself daily and taking lasix daily.

      • #14839
        Brittany Foster
        Keymaster

        Hi Steve,
        The 20 lb weight gain in that short amount of time would definitely be a red flag for many of our pulmonologists too. I’m glad they were able to get you right into the hospital and took this seriously. Were you experiencing and increase in symptoms when this happened or did you just notice the weight gain? My body is sensitive to a 3 lb increase, nevermind a 20 lb increase! The good thing is that they have a treatment plan for you and hopefully they are seeing the number go down on the scale (even though it seems like you wanted to gain some weight) .

        Welcome to the forums ! Glad you are here and part of the conversations.

    • #14832
      Jen Cueva
      Keymaster

      Hi Steve and welcome to the forums.

      I’m sorry you had to learn about the fluid retention and end up in the Er to get it off! It’s so easy to retain extra fluid for us PHers and definitely something we all should check for as we look for swelling in our legs, feet, hands,and our bellies.

      20 lbs of extra fluid that fast was no fun, I’m sure. I’m glad you are staying on top of your Lasix and daily weights as well. It sounds like your doctor is monitoring as well at each visit. Please don’t hesitate to call them if you think you’re retaining fluid or any other new symptoms.

      Let us know if we can answer any other questions.

    • #14844
      Jen Cueva
      Keymaster

      Brittany,
      So true….I’m so grateful for treatments, meds, and my medical team that I’m able to do more. Of course, we still have days when we aren’t physically able to do things and that gets frustrating, but for me as well, with meds, etc, I’ve come a long way .

      So true about the fluid increase, I only have about a 3-4 lb variance at the most, I can’t even imagine the 20lasso fast, although at the beginning prior to treatment, I looked and felt like the Michelin Man aka roll poly fir those who dint remember those commercials, lol 😂
      I’m so grateful for meds and my medical team!

      • #14845
        Brittany Foster
        Keymaster

        I can picture the Michelin Man but can’t picture you ever looking like that!! I’m thin so any bit of weight gain is usually obvious to me (but sometimes it’s not obvious to my doctors who think “you’re still tiny” . I try to get them to understand that my weight gain looks different than someone who may be overweight and gaining more. It’s more puffiness and swelling for me especially of my hands and midsection .

    • #14846
      Jen Cueva
      Keymaster

      Lol, thanks Brittany! I , too have that issue as everyone thinks I’m tiny, and I’m so not lol

      Every extra pound in my hands, feet, legs and be,my, I definitely feel it , even once I pout in a few extra lbs per doctors request. I feel bloated so fast and it definitely affects my breathing .

      You are definitely tiny, lol

      • #14853
        Brittany Foster
        Keymaster

        Jen,
        I totally get it! The bloat is what makes my shortness of breath worse. I actually get stomach bloat very easily and sometimes it’s not always fluid retention related! I think I’m going to post a new topic today about this to see if anyone else is similar!

    • #14859
      Constance
      Participant

      Good morning all,

      Sounds to me like all of us each have our own story to tell. I have gained overall a total of 70 pounds in the last 2 1/2 years,BUT since February I have lost 30 which means I only have 40 pounds to go to get back to my original weight, and perhaps I can even lose a few more after that. My doc just told me to watch the amounts that I eat NO SALT AND TO LIMIT MY PREPARED FOODS. which I have been doing. 47 years ago I weighed over 310 lbs. I got down to 125 and looked anorexic. I got married in 1996 some loving person gave us a bread machine for a wedding gift OMG within months I had gained so much weight that I cut the cord off the bread machine and threw it in the trash. In 2000 I started my own business. So I am very active so watching what I eat keeping my fluid intake to 2 liters per day, taking my meds as prescribed and I have a low impact cardio exercise video which I do as well (with my doctors approval). Anyway this pudgy person is losing weight and thrilled about it. I am so excited. The only thing I am really dealing with is somedays I am so thirsty and drink more water than I am supposed and boy do I pay the price. But all in all I am doing terrific and I love sharing with all of you, however, today I feel like I have confessed, LOL thanks to each of you.

      • #14861
        Brittany Foster
        Keymaster

        Connie,
        I am so glad that you are doing the right things for you body. I also try to do some low impact cardio workouts. My favorites are youtube videos from the group Popsugar Fitness. They have a really good 20 minute video and I modify some of the moves. They usually have someone in all the videos to modify it too. Eating well and limiting the water intake is something that many of us have to be conscious of. Carbs are my weakness so I can relate to your story about the bread machine espeically if it’s homemade it must be way better. There are great recipes online for low carb bagels that actually come out pretty good. If you want some good seasoning ideas, Mrs. Dash brand has really good seasoning to make your food taste less bland (especially when we have to be careful for the extra salt and processed foods). Hope you have an awesome holiday too!

    • #14860
      Constance
      Participant

      I forgot to wish each of you a Happy Thanksgiving.

    • #14888
      Jen Cueva
      Keymaster

      Constance,
      Way to go as you’re taking care of your body and watching your food and water intake!

      I did want to mention, if anyone eats ice , as I tend to do when my anemia pops by, that will definitely give you more fluid than if you’re not eating the ice. That needs to be calculated as your extra fluid .

      Omg a bread machine would be a problem for me too, as I’m a Carbie as well and fresh warm bread is definitely a weakness for me lol

      Brittany, yes that belly bloat is awful, even a few pounds as I’m feeling it lately , it’s definitely uncomfortable and affects my breathing as well.

      Hope y’all have a Happy Thanksgiving as well and enjoy lots of yummy food 👍🏼

      • #14891
        Brittany Foster
        Keymaster

        Hope you have a great Thanksgiving too, Jen! Thanks for all your great contributions to the forum and your great advice !

    • #31083
      Anonymous
      Inactive

      My doctor asks me to weigh myself every two weeks.

      • #31089
        Colleen Steele
        Keymaster

        @Amelia from my experience caring for my son, weight seems to be something doctors monitor carefully on PH patients. The sicker my son got the more he lost weight and struggled to gain. It was a real battle.

        But it’s not just overall health doctors are concerned about, I believe weight can really affect treatments as well. It’s a delicate balancing act.

        How are things going with your weight? Are you having any struggles?

    • #31095
      Anonymous
      Inactive

      It seems to be getting better now

    • #31114
      Jill Upshaw
      Participant

      I weigh daily and sometimes twice a day. I am on lots of diuretics also and I can gain as much as 10 lbs in a day. I try not to let that happen. I also take a lot of potassium and get levels to monitor my potassium. Twice my potassium was way below the danger zone so I watch it closely. If you go up on your Lasix, you might want to verify your potassium dose with your doctor.

      • #31121
        Jen Cueva
        Keymaster

        Hi @upshtcx, I, too, weigh myself daily. I can skip a day now and then but like you on many diuretics, I can go up quickly. I think that especially for those who are on diuretics and /or have a history of congestive heart failure, daily weights are important.

        Of course, listening to what your medical team suggests is what is most important. We are all at different stages and on different medications.

        A great point to remind others to ask about increasing extra potassium; those low potassium levels can cause some horrible chest palpitations and irregularities. Plus, drinking potassium is horrible, and the iv route burns to go in. I, too, have found myself with this complication a time or two.

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