Dieting and intentional weight loss with PH 2018-07-25T14:21:06+00:00

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  • Em
    Participant
    Post count: 2
    #8003 |

    Has anyone had any luck dieting and losing weight with PH? My husband is a large guy and hes been trying to lose weight with no luck. He cut out all alcohol, carbs, red meat, sweets and we portion control. When he was in the hospital last year a young pulmonologist told me that although he needs to lose weight PH essentially stopped his metabolism. His cardiologist tells us we’d have to significantly limit his caloric intake. My husband can’t exercise due to extreme SOB with exertion and hes getting very frustrated. Drs tell us weight loss will help his PH but he can’t lose weight. Has anyone out there had the same situation an have you been able to lose weight? Thanks!

  • Ava
    Participant
    Post count: 29

    Hi Em,
    I can understand your frustration! What type of PH does your husband have (ie. what caused the PH?) And what PH treatment is he receiving? Finally, what steps is your doctor taking to reduce your husband’s SOB? Does he have lung problems like COPD or is the SOB just from PH? Be wary of doctors saying it’s asthma, unless your husband has a long history with it – the SOB caused by PH actually mimics asthma to inexperienced Doctors, but the difference is that SOB due to PH will completely disappear if they can get the treatment right.

    At my initial diagnosis in 2015 with IPAH I was told by several doctors that I was overweight, and it wasn’t until I saw my PH Specialist that he recognised my ‘weight’ was actually fluid retention (about 20kg, all abdominal, no swollen ankles). High doses of diuretics helped, and to this day I continue to take them (as per my other post, I only need to store 1kg of fluid and I get increased SOB). I am also on a daily fluid limit of 1.5litres (including yoghurt, soups etc). Three months after diagnosis I had lost a fair amount of fluid but was still getting SOB with exertion, at which time my doctor introduced a second PH medication – which made a significant difference, basically eliminating the SOB.

    Depending on what type of PH your husband has, extra PH meds may not help. But they should definitely be looking at fluid retention, which is strongly linked to SOB. Also, have they referred him to Pulmonary/Cardio Rehab? This course usually runs for about 2-3 months, Meeting once weekly, and they will help your husband start doing physical activities within his limits (among other things).

    At diagnosis I could not walk across a room without being so short of breath I was in danger of fainting. For the first three months I used a walking frame (just so I had a portable chair with me and could sit and rest as often as I needed it). Now I walk for approximately an hour most days (I often tell people that the first year after diagnosis all I did was learn to walk again).

    As for diet, I avoid all processed foods and eat fairly small portions. I cut up a dish of fruit in the morning for breakfast, and snack on that throughout the morning. I also have a 200 ml serve (a small cup) of a food supplement called Sustagen (not sure it’s available in the US, but it ensures I get enough trace elements like B12 etc). At lunch I’ll have vegetables with rice or fish, or some kind of lentil or pasta dish for protein (I don’t eat eggs). Then late afternoon I’ll snack on a variety of more fruit, yoghurt, some crackers with cheese, a cob of corn, or if I’m really hungry, maybe some roasted veg with herbs (I might eat two or three little things throughout the early evening). Giving up bread was a major change (its quite high in sodium). Now about the only ‘naughty’ thing I eat is a small amount of cheese 3-4 times a week. Getting rid of the sodium in processed foods is a big step in controlling fluid retention and SOB.

    It sounds like your husband has already made some major changes to his diet (so congratulations – I know how hard it can be to give up that social glass of wine, or cold beer at the end of a hot day!). I really think that Cardio/Pulmonary Rehab would be a good starting point – some people when I did it had COPD and were on oxygen, and were given light exercises to do while sitting. It’s tiny steps to start (be prepared he’ll want to come home and sleep afterwards as it will feel very hard at the start) but over the course he should see some improvement. And I would also be questioning his fluid retention (if they haven’t addressed that) and what they suggest for reducing his SOB (putting it on him to lose weight is ridiculous if the SOB is caused by PH).

    I hope some of this helps, and I’ll wait to hear more about your husband’s treatment.
    Hang in there!
    Ava

  • Darla Stewart
    Participant
    Post count: 3

    Em and Ava – I have a new diagnosis of PH (August 8,2018). And I wish I had read your suggestions Ava 6 years ago! My pulmonary hypertension is considered as happening from Multiple Massive Pulmonary Emboli of unknown cause in both lungs. Warfarin has shrunk the PEs (according to last echo) but the pulmonologist kept saying the warfarin had gotten rid of them. I was referred to a nutritionist who subscribed to the method to trick my metabolism into starting again by eating every 3 hours even into the night since I didn’t go to bed until late. I made food changes, etc. And for a year I lost & gained the same 5 pounds while feeling bloated, weak, and breathing very hard when walking the 8 blocks to work. After deciding I needed a different nutritionist, even though she never actually heard what I was telling her, I went to someone else for one visit before that person relocated and I was back with the original person. I finally said “to hell with her 3 hour crap” and went back to only eating breakfast, lunch, dinner, and trying not to eat after 8:00 pm. I found the LoseIt app that helps me track carbs, proteins, etc. I did not tell anyone for the first 5 weeks that I was refocusing on losing weight because it has been my experience that the minute I do I start being sabatouged. I lost 22 pounds in about 2 months.

    I had a syncope episode on my treadmill and ended up going to cardiologist who did heart cath, vq scan (specks in lungs they were not sure were old or new), stress test (abnormal), and more echos. This final echo was when the pulmonologist finally decided that the warfarin had only shrunk the PEs so that they were scattered and made me not eligible for the major surgery to remove them. My heart is good even with leaky valves and the right ventricle failure that went with the initial hospital stay with the PEs. Heart has no blockages or narrowing. The issue is in the lungs with the scattered small PE pieces blocking capillaries so blood not getting enough oxygen and back to heart. I have shortness of breath with any exertion, and the last two days I’ve been coughing while sitting/resting along with exertion. I’m hoping that is sinus drainage. Only plan the pulmonologist has spoken about is changing my blood thinner and a small mention of a rehab but no details. My insurance has denied the med switch as the warfarin has not failed. That may be appealed as I have arranged an appointment at the University of Iowa Hospital & Clinics for a second opinion with the cardiologist associated with their pulmonary hypertension comprehensive care program. Hoping to get a more detailed plan and options of treatment.

    What you have said Ava on the liquids and cardio/pulmonary rehab makes so much sense after my experiences. Do you have a salt intake quota also? That appears to be the hard level for me to reach. I don’t add salt but some of the higher protein items have much more salt than you might realize.

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