Pulmonary Hypertension and Exercise

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IamUndrCnstruction
IamUndrCnstruction Posts: 691 Member
in Fitness and Exercise
Anyone out there with Pulmonary Hypertension? I am a 39yo woman in the process of being approved for a double lung transplant (I have pulmonary arterial hypertension and pulmonary fibrosis). I have been told by the transplant team I must lose 25 pounds before they will put me on the waiting list. I have lost 12 so far. I have changed so much of what I eat, no more refined foods (white flour, white sugar, etc) Veggies, lean protein and some fruits. I have discovered juicing, and am becoming quite the fanatic about it. But...I am stuck now....I need to get rid of these last 13 pounds (and a lot more to reach my true goal of 160, but 13 is what I need for transplant purposes) and the sooner the better. The problem comes into effect in that I am not able to tolerate much exercise, I am not talking "Oh, it's to hard and I am sore" or "Oh I don't have time"..I am talking "Oh look, my fingers and lips are turning blue".....I try and walk everyday for at least 20/30 minutes, but anything more than that I start running into problems.
Just wondering if there is anyone out there who has been through anything similar and what they might have done to help. I tried finding a specific group here to discuss, but didn't see anything.

Replies

  • angelaspagnol
    angelaspagnol Posts: 7
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    Hello.

    My name is Angela. I too have your exact situation. I have Pulmonary Hypertension and Pulmonary Fibrosis. I am on oxygen Part time and feeling Fantastic. If you would like to chat more, Id love to connect.
    I am In Sydney Australia.

    How are you doing at the moment?
  • Mharren
    Mharren Posts: 60
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    Supplementary Oxygen and a weight loss program that is focuses on calorie deficit is what seems in order. When patients are getting ready for heart surgery there are 'emergency weight loss diets' they can be put on that yield reliable results. Perhaps the transplant team can direct you to a physical therapist and a nutritionist that can tailor a diet and exercise program for your special needs.

    Good Luck,
    - Mharren
  • angelaspagnol
    angelaspagnol Posts: 7
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    Im trying to stay on oxygen and eat healthy and do some light exercises to avoid the transplant - I need heart and lung. But after making some minor changes and already seeing some changes, Im starting to get curious as to eliminating any foods that don't serve me.
  • IamUndrCnstruction
    IamUndrCnstruction Posts: 691 Member
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    I send my food diaries to my transplant coordinator once a week. She says I am doing everything right, and wishes I could plan her meals too! I just don't know why I am stuck. Maybe it's a normal plateau sort of thing. I don't know. I do know I am getting terribly discouraged, as I have done so many positive changes and nothing is working. Walking is getting a little easier, but I still can not tolerate much more than say, 3.0 on a treadmill for 30 mins. And I don't have a treadmill, and summer in FL is hard to handle outside for those of us with breathing issues. I do some light strength training as well, so I honestly do not know WHAT to do anymore....
  • angelaspagnol
    angelaspagnol Posts: 7
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    I am doing yoga for breathing and stretching. A rebounder with light bouncing is good to get the body moving a bit.
    I went to an Anthony Robbins Event recently and he some fantastic content about eating better and living with a alkaline diet and also not eating animal flesh and sourcing your proteins through raw foods and other protein sources.

    Good to hear your keeping track with things.

    Are you on oxygen? I am on 3 litres per minute and I use it no less than 14 hours per day - I sleep with it aswell.
    My life has become ALOT easier since I have had that assistance and I even have a portable machine for when Im run down t take around with me.

    Are you on any medications?
    I have heard a lot of the medications for the conditions actually decrease the oxygen.

    What is the status of the transplant at the moment?
  • IamUndrCnstruction
    IamUndrCnstruction Posts: 691 Member
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    I am on o2 24/7, I have a portable unit that I use to go to work, and a concentrator that I use at home. I am on quite a few different meds, steroids and vaso-dialators like Adcirca. They help me, as before I was on the Adcirca I couldn't even walk ten feet without feeling like my chest was going to explode. I have been through the evalutaions for the transplant, and have been approved by the medical board, but they will not put me on the waiting list until I lose these last 13 pounds. Which I am desperate to lose at this point.

    Are you on the list yet, or just starting the process? I am not sure if it works the same way in Australia, as it does here, you probably have a better system there.
  • angelaspagnol
    angelaspagnol Posts: 7
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    Im not on the waiting list as yet, but they know of me. It is a long process here, they want to have all medical areas covered before they even put you on the list.
    Maybe I am not as bad, but I feel better since I have been on the oxygen.
    I really hope you can loose that extra bit so they can out you on that list if you feel that you need it.
    How many litres of oxygen are you on per hour?
    I find that I get better oxygen levels from the continuous flow rather than the portable - I sleep with it aswell and I have it on 3litres per minute.
  • MommyofLily
    MommyofLily Posts: 149 Member
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    I don't have any additional advice, but I wanted to say I'm rooting for you both! My mom has PH. Are you on IV meds? I didn't see you list any IV meds, but I'm familiar with the other stuff you mentioned like Adcirca. My mom started on Veletri in January and it's a rough med to be on, but she seems to be showing minor improvements.

    It sounds like you are doing everything right, just don't give up!! Best wishes to you in fighting those a**hole diseases.
  • IamUndrCnstruction
    IamUndrCnstruction Posts: 691 Member
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    Thanks! I appreciate it : ) Thankfully I am not on any IV meds yet, though I wonder if they would help. They are just trying to maintain me until I get the transplant so they don't want to break out the heavy artillery for fear of messing with my transplant chances. I am glad it is helping your Mom, and I have heard it can be a rough time on that medication. Best of luck and good wishes to her!

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