Pulmonary Hypertension News Forums Forums PH Care and Treatment Diet and Nutrition Do Your Doctors Want You To Weigh Yourself?

  • Do Your Doctors Want You To Weigh Yourself?

    Posted by brittany-foster on November 8, 2018 at 2:06 pm

    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?

    jen-cueva replied 1 year, 1 month ago 11 Members · 53 Replies
  • 53 Replies
  • jen-cueva

    Member
    November 8, 2018 at 9:59 pm

    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,

    • brittany-foster

      Member
      November 9, 2018 at 9:47 am

      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.

  • jen-cueva

    Member
    November 9, 2018 at 7:35 pm

    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 😂

    • brittany-foster

      Member
      November 9, 2018 at 7:39 pm

      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.

  • constance

    Member
    November 13, 2018 at 12:18 pm

    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

    • brittany-foster

      Member
      November 13, 2018 at 3:39 pm

      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?

  • jen-cueva

    Member
    November 13, 2018 at 7:47 pm

    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 .

    • brittany-foster

      Member
      November 14, 2018 at 7:44 am

      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.

  • steve-stiffelman

    Member
    November 13, 2018 at 7:58 pm

    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.

    • brittany-foster

      Member
      November 14, 2018 at 7:47 am

      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.

  • jen-cueva

    Member
    November 13, 2018 at 9:31 pm

    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.

  • jen-cueva

    Member
    November 14, 2018 at 9:56 am

    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!

    • brittany-foster

      Member
      November 14, 2018 at 10:55 am

      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 .

  • jen-cueva

    Member
    November 14, 2018 at 4:22 pm

    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

    • brittany-foster

      Member
      November 15, 2018 at 5:22 am

      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!

  • constance

    Member
    November 15, 2018 at 11:40 am

    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.

    • brittany-foster

      Member
      November 15, 2018 at 11:53 am

      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!

  • constance

    Member
    November 15, 2018 at 11:44 am

    I forgot to wish each of you a Happy Thanksgiving.

  • jen-cueva

    Member
    November 16, 2018 at 2:10 pm

    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 👍🏼

    • brittany-foster

      Member
      November 16, 2018 at 3:50 pm

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

  • Deleted User

    Deleted User
    July 12, 2021 at 3:56 am

    My doctor asks me to weigh myself every two weeks.

    • Colleen

      Member
      July 12, 2021 at 1:55 pm

      @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?

  • Deleted User

    Deleted User
    July 13, 2021 at 6:21 am

    It seems to be getting better now

  • jill-upshaw

    Member
    July 15, 2021 at 2:16 pm

    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.

    • jen-cueva

      Member
      July 15, 2021 at 4:53 pm

      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.

  • jen-cueva

    Member
    June 13, 2022 at 11:30 am

    I wanted to share this important post again for any new members. Does your PH team ask you to weigh yourself? If so, is this daily or less often? How do you manage your fluid intake and increase or decrease in weight?

  • cathy-brown

    Member
    June 14, 2022 at 3:41 pm

    This is timely for me because I was super tired this weekend and my husband asked me to check my oxygen levels. My saturation was quite a bit lower than normal, so I weighed myself and found I was 3 pounds heavier. I left a note for the doctor. The nurse told me the next day to double up my diuretic for a couple of days, but by then I had lost a pound and my saturation was back to where it usually is. I almost never have swelling in my ankles or feet though. I think I carry it in my belly.

    • jen-cueva

      Member
      June 15, 2022 at 2:30 pm

      Hey @catbrown, I’m sorry you experienced so fluid retention. Like you, I tend to swell in my belly often. I also do still get swelling in my feet and ankles. But my stomach is usually the first and most of my swelling.

      I’m happy you weighed yourself and let your nurse know. It sounds like that extra diuretic did the trick for you. How are you feeling afterward? Keep an eye on your potassium when you take different diuretics. You may want to eat an extra banana or avocado for a little extra potassium.

      Take care of yourself. Maybe you should weigh yourself more often.

    • jen-cueva

      Member
      June 27, 2022 at 11:02 am

      Hi @catbrown, how are you doing with this fluid retention? Have you had any other problems with this after this last incidence? I hope that you’re keeping cool.

  • md-abul-kalam-azad

    Member
    June 26, 2022 at 12:33 am

    My son is a patient of PH. His is 20 years. he is taking reocigut 2.5  pranol 10 and ramopril  and ambrisanten along with others medication. he also started selexipag  400 for last couple of week. He is suffering for angiokeatoma. Lots of angiokeatoma found under his panic. It bleeding very often. I found in the internet it is happen because of the medication of blood vessel dilators. can some one give me advice because the doctors here in Bangladesh is not very experiences of the disease.

    • jen-cueva

      Member
      June 27, 2022 at 11:00 am

      Hi @azad, I’m sorry that your son is having such a difficult time with bleeding from his angiokeratoma. What area are you saying is bleeding? Because this is a benign tumor, blood vessels rupture under the skin; this is usually not a concern. But if it’s bleeding more than usual, I would mention it to his medical team.

      Yes, most all PH treatments dilate the blood vessels. Was this a concern before he started treatments? @jordinr, do you have any thoughts on this?

      I hope the selexipag titration goes well for him. Will he be increasing this week or next?

      • md-abul-kalam-azad

        Member
        July 25, 2022 at 5:27 am

        Hi I am sorry for reply late. Because I was in trouble during this month. My son is suffering much bleeding from angiokeratoma and cough. Some time bleeding comes from cough, When bleeding comes he become very week can not walk and he face breathing problems as well. He is having Selexipag 400 in the morning and 400 in the evening. He can not tolerate this medicine. Specially in the morning when he lake the medicine along with other medicine he does not feel well till evening. his blood pressure become very law. If some one can help me in this regards I would be very grateful to him/her. It is very unbearable for me to see the condition of my son. The doctor here in Bangladesh does not know the treatment of this disease even they do not admit the patient in the hospital.

      • cathy-brown

        Member
        July 25, 2022 at 11:43 am

        Selexipag is a hard medicine. I had nausea, vomiting, headache and overall body pain with it. I found it was much worse if I didn’t eat a full meal (not just a snack, but a meal with protein and fat) when I took it. I also had much worse side effects when I didn’t get a good night’s sleep. I also had to sometimes spend a few weeks at a stable dose before increasing. Fortunately, I did not have bleeding, so I can’t offer any advice there. My blood pressure is low but not so low that it causes problems. I wish so much you had access to good medical care. Praying that your son improves.

      • jen-cueva

        Member
        July 25, 2022 at 2:01 pm

        Hi @azad, I am sorry that your son is having such difficulty. How old is he again? I take Uptravi (selexipag) 1600 mcg twice per day. But I also take it with food, as @catbrown suggests. I’m doing pretty well on mine, but I’ve been on it for several years.

        Is your son anemic, too? It sounds like he could be, which will cause increased shortness of breath, weakness, pale skin, etc. With all his bleeding, asking the doctors is probably a good idea.

        Unfortunately, I am uncertain who can help you because you’re in Bangladesh. Do you know if they offer any other PH treatments there? Is a larger hospital nearby where they may have more knowledge than you can travel with your son?

        My heart aches with you as I imagine this must be so frightening and painful to watch your son. My thoughts and prayers are with you both. Please try to talk with his doctors and let us know what they say.

      • md-abul-kalam-azad

        Member
        July 26, 2022 at 6:04 am

        Hi Jen Cueva He is 200 years old and weight is is 53 kg. No my son is not anemic. Anybody can help me for online consultation for my son. If I had an opportunity to consult with experience physician it would be very helpful for me.

      • jen-cueva

        Member
        July 26, 2022 at 12:31 pm

        Hi @azad, do you mean your son is 20 years old? Also, that means he’s about 116 pounds. They may give him too much medication, or he may do better on another PH treatment.

        I hope and pray that you can gain better access to care for your son. I found this online. Is this anything you’re familiar with?
        Free PH Treatment Bangladesh

        I also found a medical center in India and other areas per their website. Maybe you can research these options.

        I’ll also check to see if I can find any PH specialists in the states who may be willing to do an online consult. But the problem with that is getting treatment for him.

        My heart aches because I know you want your son to get some relief and feel better soon. Hugs and prayers are coming to you and your family.

      • md-abul-kalam-azad

        Member
        July 27, 2022 at 3:27 am

        Dear Jen Cueva
        I really grateful to you for your quick response. You mentioned that you found PH centre in India please sent me the contact address, because India is very convenient for me. I went several times in India and visited 5/6 best hospital with my son and every where we were regretted. I will be highiy grateful to you if you can arrange a online consultation with a doctor experienced in this field for my son.
        regards
        Azad

      • jen-cueva

        Member
        July 27, 2022 at 1:21 pm

        Hi @azad, I previously shared the links in the post if you click on the highlighted text. Again, I’ll share what I found online in India and the surrounding areas for Pulmonary Hypertension. I’m not sure if you have had your son seen here or not.

        Narayana Health

        They have a chat option, and you can set up a consultation. My apologies; I can only offer you names and suggestions. I’m not capable of setting up appointments for you online. But if I think of anything else that may benefit you and your son, I’m happy to share it with you.

        I’m sorry that you feel your son is not being treated as needed. It does look like he is on several PH medications. Please mention these concerns to the team there.

        I’ll share the Find A Doc link from PHA. These are the PH doctors in the US. They also have a link for outside the US in Europe. Feel free to find one and contact them. I wish I could do more. Please let us know if you contact anyone and how that goes.

        Find a Doc- PHA

        PHA Europe

      • md-abul-kalam-azad

        Member
        July 27, 2022 at 11:55 pm

        yes, we went several times Narayana Health in India. But they said we are not capable to treat your son. only option is lung transplantation but this is not very easy option.

      • Colleen

        Member
        July 25, 2022 at 8:37 pm

        @azad my heart goes out to you! I don’t have experience with this medication but my first thought is maybe the dosage is too high for your son. @catbrown what are your thoughts. If anything is this a treatment they can lower then slowly increase?

        @azad do you know if there are any other treatments that might be available for your son?

        Like Cathy, I wish you had access to better healthcare. I’m so sorry for your son and for you. For what it is worth, I will keep you both in my prayers!

      • md-abul-kalam-azad

        Member
        July 27, 2022 at 3:51 am

        I visited dozens of doctors in My country, India and Thailand as well but nobody gave me the alternative treatment except the on going treatment. My son is taking the medicine listed bellow
        1. Tab.Selexipag 400 1 0 1
        2. Tab. Ambrisentan 5 1 0 0
        3. Tab. Riocigut 2.5 1 1 1
        4. Tab. Frusemide 40 0 1 1/2
        5. Spironolacton50 0 1 1/2
        7. Tab. propanol 10 1 0 0
        8. Tab.Ramipril 1.25 0 0 1
        9. Tab.Digoxin 1/2 1/2 0
        10.Tab Omoprazol 20 1 0 1

      • jen-cueva

        Member
        July 27, 2022 at 1:31 pm

        Hi @azad, I also found this article online, and this is the doctor who writes this article. He may be someone you could connect with, too. This is an interesting article if you can read through some of the medical jargon.

        PAH Management in Asia

        His contact info is ∗Address for correspondence: Dr. Erik Fung, Division of Cardiology, Department of Medicine and Therapeutics, 9/F, LCWCSB, Prince of Wales Hospital, 30-32 Ngan Shing Street, Shatin, NT, Hong Kong SAR, China. E-mail:
        E-mail Address: [email protected]

      • Colleen

        Member
        July 28, 2022 at 12:43 pm

        @azad I was concerned that your son wasn’t receiving sufficient treatment but many of the medications you have listed my son was also on. There are other PH treatments available that could benefit your son but I’m glad he is on something.

        Did you say he is eligible for transplant? My son is about to celebrate 8 years post heart and double-lung transplant. It is a decision we have not regretted. If you have any questions about transplant please let me know.

      • md-abul-kalam-azad

        Member
        July 31, 2022 at 6:34 am

        Dear Ms. Colleen,
        Thank you very much for your quick response with email. I hope you are fine. Transplant is not easy in Bangladesh or in the Indian subcontinent. The facility and doctors are not available in this Indian subcontinent. My financial support is not enough to bear the cost of transplant. I wish to take treatment with an expert doctor in USA or any other country with. regards Azad

      • Colleen

        Member
        August 1, 2022 at 4:06 pm

        @azad I am so sorry to hear that! It sounds very complicated. Do you know how to go about seeking transplant in the USA or another country. I fear that this will be just as costly if not more so. I do know you wherever your son is listed you will be expected to live close to that hospital the entire time he is listed and for at least 3 months post-transplant.

        The following is a link to accredited PH care centers in the USA. If you are able, making calling to them might be a start.

        Click the following: Accredited PH Centers

  • ann-goddeyne

    Member
    June 28, 2022 at 4:32 pm

    My doctor asks me to weigh myself twice a day and watch for weight gain of over 2 pounds a day or 5  pounds in a week to track possible water weight gain. It works to keep me focused on my diet and fluids.

    • Colleen

      Member
      June 29, 2022 at 5:08 pm

      @ann-goddeyne I forget the Cullen’s PH doctor use to ask him to weigh-in 2x’s a day too. If I remember correctly they wanted him to try and do it as the same time every day and log it with his water in-take.

    • jen-cueva

      Member
      July 26, 2022 at 12:33 pm

      Hi @ann-goddeyne, how are you doing with your fluid retention this week? Are you also on a low sodium heart-healthy diet?

      Share some of your tips with us.

  • jen-cueva

    Member
    June 29, 2022 at 10:46 am

    Hi @ann-goddeyne, wow, weighing twice daily sounds like it can keep you busy. Is it because you tend to retain fluid pretty rapidly?

    Mine is daily, but I have been known to skip a day in between.

    Do you follow a low sodium heart healthy diet? What’s your biggest challenge? Or have you learned to adjust to this lifestyle?

  • randolph-reynolds

    Member
    June 30, 2022 at 4:17 pm

    Greetings

    This topic confirms that having PAH requires to be on some sort of diuretic.  In March 2019 I was placed in the hospital for two reasons, I had too many collapses with my portable concentrator and I had severe edema. In three weeks with diuretics plus not eating much I went from 220 lbs to 160 lbs.  My normal weight is 176.  Therefore I work to maintain that weight plus or minus two lbs. I went into the hospital with an Inogen concentrator and came out with a oxygen tank.

    Lasix is the common medication.  I also take a Spironolactone (Aldactone) that counters the effects of diuretics on the kidneys.

    I weight myself every day but only log it about twice a week. So far so good. I do notice that when I have been eating a lot, restaurants, and gain too much poundage it does have some effect on my breathing.  It doesn’t take too long to get things back down.  Usually skip a couple of meals.  I’m in that cycle after celebrating my birthday.  BTW drinking diet colas is a way to do this as well.  They aren’t good for the stomach, I rather drink good wine but some of my medications warn against alcohol.

    I don’t fully understand all of this but where as many of my friends are bulging I am not.

    Cheers to all

     

    • Colleen

      Member
      June 30, 2022 at 5:19 pm

      @ripple76 I agree – diuretics are a necessary evil for PHer’s. Cullen was on Lasix from the get-go. He was placed on something else for a short period of time but I can’t recall what that was.

      It sounds like you have learned well how to listen to your body and nourish yourself accordingly. I think it’s also a good point that sometimes treating yourself, like on your birthday, is ok as long as you do what you need to do to recovery after the celebrating.

      Thank you for sharing your experience with us.

    • jen-cueva

      Member
      July 1, 2022 at 11:39 am

      Hehe, I love your last line, @ripple76!

      ” I don’t fully understand all of this but where as many of my friends are bulging I am not.”

      As @colleensteele mentions, diuretics are often the necessary evil of PH.

      For some, it takes a bit longer to learn how your body reacts to a certain amount of fluid, certain foods, etc. Weighing every day or twice, whenever your doctor orders, is helpful for many who don’t recognize the other tell-tale signs coming from their bodies.

      I often retain fluid in my belly fast, and even 3 pounds makes me look and feel like a potbelly pig. Hence the bulging you mention. But it;’s so uncomfortable when this happens and I can’t eat as I feel so full.

      But my body also fluctuates quickly, leading to electrolyte imbalances more often with my kidney disease. If I treat myself, I usually know I’ll need an extra diuretic and pay careful attention to my body.

      Thanks for reminding us to learn to listen to our bodies; none is quite the same.

  • jen-cueva

    Member
    February 6, 2023 at 11:19 am

    Hi @azad; I wanted to see if you missed some of the responses shared here. Monitoring our weight is essential when retaining extra fluid, like your son.

    Does his specialist suggest daily weights? I weigh daily as per my PH team’s request. This helps me stay on top of managing any increase in edema.

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