• Posted by amyballou69 on January 3, 2025 at 6:57 pm

    I’ve had pulmonary hypertension since 2012. Shortness of breath and dizziness along with syncope were my life in the beginning. The NUMBER ONE MOST IMPORTANT THING YOU CAN DO TO HELP WITH YOUR BREATHLESSNESS IS LOSE THE WEIGHT!! The doctors don’t tell you either. They prescribe, prescribe prescribe but couldn’t tell me how to manage my fluids or that losing the weight would make a day and night difference in my life. I was 220 pounds, 5’7″ when I got diagnosed. Couldn’t do stairs whatsoever. When I stood up from sitting i was fainting all the time. I was knocking on death’s door and I felt like total crap. Even with oxygen I was unable to get enough Oxygen. It took me over a year but I lost the weight by limiting my total calories to 1500 a day, sometimes 1200 total. When i reached my goal weight of 130, (even when i had only lost 25 pounds), I felt so much better. None of the High Risk meds they put me on did that, like Adcirca, Letairus and Uptravi, Opsumit. None of them improved my breathing and I was always gasping for air from the littlest bit of physical activity. The more i lost the more it helped. I started beating all my previous 6-minute walk tests too. And most importantly, I’m still here which is the BEST positive side-effect from losing the weight. It is hard to lose weight, we all know that but the facts are, no other PH treatment helped my breathing more. All the meds cause side effects but weightloss improves quality of life tremendously, and the improvement is felt from losing as little as 15 pounds. I feel like they should definitely be telling us how huge of an impact that losing weight has on your ability to breathe! If I hadn’t lost my weight I know in my heart that I wouldnt still be here twelve years later with this disease. You can do it! It is TOTALLY WORTH IT. Not being able to catch my breath was the scariest feeling I have ever experienced before. It makes you full of fear and reminded me I WAS actually dying, which made me depressed and hopeless. Save your quality of life. It’s worth going hungry for that! Take care!

    jen-cueva replied 1 month, 1 week ago 2 Members · 1 Reply
  • 1 Reply
  • jen-cueva

    Member
    January 7, 2025 at 10:16 am

    Hi @Amyballou69 , what an amazing job you are doing with weight loss! Was that large amount of almost 100 pounds over the last 10 years? How long did it take you to get to your goal?

    No doubt, if somoene is overweight, losing some of that weight lessens the strain on our hearts. So, you should feel better. But I wouldn’t think that alone is what is making you feel better. However, I am thrilled it has been a “lifesaver” for you.

    As always, do what is best for you and your body under the supervision of your PH team. Also, it sounds like you could do more, so exercise was new, and that, too, can help us become stronger.

    For me, the weight I was carrying around at diagnosis was extra, primarily fluid. And losing weight through the years hasn’t helped me. But my treatment plan is what has helped me and my mindset. This shows us how we all do differently with PH.

    Thanks for sharing, Happy Nerws Year, Amy!

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