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    • #11675
      Brittany Foster
      Keymaster

      I’ve noticed that the scale fluctuates a lot when I am experiencing difficult symptoms and an acute illness on top of my chronic illnesses. My weight can either decrease due to symptoms of PH that are uncomfortable and hard to manage, or it can increase. It’s especially difficult when I feel as though I don’t have much control over the factors that make this happen.

      Losing weight in a short amount of time due to illness or gaining weight leave me with even more physical symptoms. When I have weight loss I feel more fatigued, less energy, and feel more pains in my body. When I have weight gain from medications or from fluid retention, I feel more sluggish and it becomes difficult to breathe.

      Not only does this fluctuation affect me physically, but it impacts my mental health too. I feel more depressed, anxious, and my body image suffers.

      Do you notice changes in your weight living with PH? How does this impact your symptoms? Do you feel a difference emotionally when you lose or gain weight? Do you struggle with body image?

    • #11697
      Jimi Mcintosh
      Participant

      My weight fluctuates 2-5 lbs everyday, I take the maximum in direutics trying to spare my kidneys. No diets have really worked, exercises causes shortness of breath, dizziness and fatigue. I have looked at surgical options, but risk is too high. I wish for just a few days to run,and play with my grandkids

      • #11701
        Brittany Foster
        Keymaster

        Hi Jimi,
        It is always hard to find the balance and be motivated to have a specific diet when it feels like it doesn’t do much for you and your body. The fluid retention and taking diuretics is hard and I’m sure just adds to our level of fatigue. It’s hard to keep up with kids and no matter how much we will our bodies to keep up , they can’t! Very frustrating! I understand your feelings.

    • #11986
      VK
      Participant

      Interesting topic. Some weight fluctuation is normal, I would think – It makes sense given that most people consume 2-5 pounds of food and drink per day, and proceed to, for lack of better words, evacuate it over the next 2-12 hours. Even a typical water bottle (24 oz. or about 700 mL) is 1.5 pounds.

      I wonder if for those of us with PH the weight matters more, because (this is not just a body image issue) the slightest amount of extra weight, even and especially due to a full stomach, can really wreck our breathing. To address Britt’s and Jimi’s concerns, that means a little bit of weight in the wrong places can make us feel extremely uncomfortable even though we’re not in any danger.

      I think it’s a good idea to talk to a pulmonologist and maybe gastroenterologist about these concerns. Mine told me that I shouldn’t ever eat to a full stomach or consume more than 16 oz. of liquid within a 1 hour time span. But you need to balance out and make sure you have adequate nutrition.

      • #11990
        Brittany Foster
        Keymaster

        VK,
        thank you for your response. This is so true that balance in what we are eating and drinking is so important. I struggled with an eating disorder when I was in my teens and at first it was really hard for me to track my weight again to check for large fluctuations. I feel like I have a pretty good handle now on when I am retaining extra water weight from fluid and have to take an extra water pill (lasix) to get rid of that. For me, if my body fluctuates more than 3 pounds in a day I can really feel the difference especially with bloat. Which also adds to the GI complaints and full feeling making me not want to eat as much because of the discomfort! It’s a hard thing to balance and sometimes the help of doctors or a nutritionist that they recommend would be helpful! Curious, does anyone see a nutritionist/dietitian for this?

    • #12956
      denny
      Participant

      I guess my fluid retention is average , 3 -5 lbs every day . Take what my PCP says is a strong diuretic and by afternoon it is usually back to base line .
      My ongoing question is why at baseline do I still have the bloated belly ?
      I am way old and not concerned with my appearance but look for anything that will help me breath .

      Denny

      • #12957
        Brittany Foster
        Keymaster

        Hi Denny,
        Are you being seen by a PH specialist too or a cardiologist? I would definitely bring up this question to them in particular. Bloating in the stomach can be from a variety of things including congestion with the heart. This is why I would suggest asking them. Even with the diuretics I still experience bloating and shortness of breath from it. I am on oxygen so either bump up the o2 or take an extra few breathing treatments when my doctor advises me to. I would definitely mention this to them though especially if the bloating and shortness of breath had worsened at all or has been going on for a bit.

    • #12958
      denny
      Participant

      Thank you for responding Ms. Foster , I am seeing a Pulmonologist who says he can act as my Cardiologist as well .

      Using O2 12 – 14 hours a day , really the only time I feel good anymore .

      The pulmonary doc. did a echo cardiogram , the only thing I remember was pressure at 56 ?????? .
      Not looking for miracles , just want to be as comfortable as possible while here .

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