Pulmonary Hypertension News Forums Forums PH Care and Treatment Diet and Nutrition Live Better With Pulmonary Hypertension with These 9 Tips

  • jimi-mcintosh

    Member
    August 15, 2018 at 9:51 pm

    I agree that a healthy diet is great for you mentally, physically and medically.. I eat right, small amounts, with a host of vegetables and fruit.. Nothing seems to help with this bloated stomach, leg swelling and full stomach. Has anyone found anything that works?

    • brittany-foster

      Member
      August 16, 2018 at 7:01 am

      Hey Jimi,
      As far as the stomach bloating goes, I know that there are certain high fiber veggies that can contribute to gas and bloating. I try to stay away from that. I take diuretics (water pill) and also take meds for GI reflux and gas . They have over the counter type stuff to combat gas and bloating. Maybe worth asking the doctor about what is okay to take. I try to do abdominal exerices about 10 minutes a day too when i can. I stay away from too much dairy too because that bloats me! Have you seen a GI specialist about bloating and swelling ? For me, it’s also related to things i eat and i try my best to avoid those

    • kathleen-sheffer

      Member
      August 16, 2018 at 1:10 pm

      Good points, Brittany. Diuretics should help with swelling, and avoiding certain foods, like very salty foods. I have always had reflux too, and taken meds for that. After my transplant was diagnosed with gastroparesis as a result of nerve damage. This means I need to eat small but frequent meals, chew well, and avoid fatty foods. Initially I was told to avoid high fiber foods as well, but I found out that consistent fiber in my diet actually makes me feel better. Have you seen a GI doctor, Jimi?

    • mary

      Member
      November 7, 2018 at 12:49 pm

      I do not know if this info will help anyone but will share it just in case. I am 72 and also have Pulmonary Fibrosis. I have been dealing with this combo for 15 years. I am now beginning the downhill road but have no complaints about that. 10 years ago, I discovered that a modified ketogenic diet helped me enormously. This meant that I consumed 85% of my caloric intake as fat (either saturated….butter/cheese from grass-fed animals, grass-fed meat, pasteured chickens and their eggs) and mono-unsaturated (olive oil and avocado oil). I then consumed ~13% as protein (~50 grams) and 2% carbs. This program allowed me to remain stable for 14 years. However, now that my PH is increasing again….30….I am having to further modify my diet. I am constantly battling respiratory acidosis (too many carbs) with dehydration (not enough carbs). (I went off the SKD diet for 2 years and experimented with a low carb diet during that time. I speculate..but cannot be certain…that this change turned the tide for me.) I am now back on a variation of the SKD…the modified SKD (mSKD) as I need more carbs to prevent dehydration.

      For those who are unfamiliar with SKD (standard ketogenic diet), it is a very high fat (85% of total caloric intake), moderately low protein (~ 10% less than what is normally suggested), and extremely low carb (less than 20 grams but greater than 5 grams). The modified ketogenic diet (mSKD) allows up to 30 grams of carbs. This means that fat is 75%-80% of TCI (total caloric intake) instead of 85%. I am noticing that I do better with my protein in liquid form (as protein is dehydrating.)

      Consuming fat (4oz per day) never causes me fatigue. In fact, it energizes me! However, about 1 hour after consuming protein or carbs, I need to take a nap. After protein, I can usually get away with about a 30 min. nap. However, after carbs, I need a 2 hours nap….if carbs are greater than 10 grams per meal!

      There is a great deal written about “nutritional ketosis”. That is NOT the nutritional program I have been (or am currently) eating. A good website that can give more info about SKD is
      ruled.me/keto-diet/

      • brittany-foster

        Member
        November 7, 2018 at 1:11 pm

        Hi Mary,
        It can certainly be frustrating and also time consuming to figure out what works and doesn’t work for your body. I guess everyone responds to different types of nutrients differently. I have never heard of the connection with fluid and carbs before. I wonder why that happend? Is it due to the break down of the carbs or that more fluids might be needed to properly break them down in your body? Now I’m curious. I have heard if carbs making people tired though! I try to stay away from too many carbs for that reason. I don’t need anything else adding to my fatigue. That’s for sure ! I hope you find a balance that works for you and your body’s needs!

      • mary

        Member
        November 7, 2018 at 1:50 pm

        Brittany, Although I don’t know the ‘why’ of carbs holding water, I know they do. When I switched from my mSKD to a low carb diet (~70 grams of carbs per day), I gained 20#! Then, within 2 weeks of switching back to mSKD, I lost those 20# and have stabilized. I could hardly breathe with the extra 20# as they were all in my upper abdomen. I felt as though I had been given a new lease on life when I lost those same 20#…all from my upper abdomen! How many grams of carbs can you eat before you get too tired to function. My limit is about 10. mary

      • brittany-foster

        Member
        November 8, 2018 at 6:40 am

        Mary,
        For me, I usually eat my carbs (i tend to stick to whole grains) in the morning for breakfast and then the rest of the day I don’t have much. I feel a bit bloated after eating carbs but they also are important for me to eat for my energy levels. But bread and starchy foods I try to avoid throughout the day except for breakfast! That’s my splurge!

  • marjorie-okie

    Member
    August 16, 2018 at 2:20 pm

    Well I’m the example of eating wrong. I am quite overweight and was told by my pulmonologist to lose 60 lbs. I am addicted to food so I struggle. I have actually been referred for lapband surgery but they may not do it for oxygen dependant PH patients my primary care Dr said. I haven’t been seen yet so don’t know. I have Distolic PH so no medications available for me. I am on 24 hr 3L of oxygen.

    • kathleen-sheffer

      Member
      August 16, 2018 at 3:22 pm

      Hi Marjorie! It’s true that any sort of surgery is risky for patients with high pressures. You will have to discuss this with your surgery team, but be prepared that they may not want to operate on you.

      I have always tended toward being underweight, but have a lot of cravings and love food! Luckily my metabolism has kept up. I understand it is hard to exercise on continuous oxygen, but have you discussed the possibility of pulmonary rehab with your pulmonologist? These programs allow you to exercise at a healthy pace with professional monitoring, and often benefit PH patients.

      What other solutions have you explored for weight loss, or to combat your food addiction? You are not alone, and I know our users would benefit from your experience.

    • brittany-foster

      Member
      August 16, 2018 at 6:17 pm

      Hi Marjorie,
      I’m sorry that you are struggling with food right now. I know for me, I had an eating disorder that went from anorexia to a binge eating disorder when I was in high school. I went from hating food to truly being addicted to it. Something that really helped me with this is a great therapist and a nutritionist. Do you see a therapist or nutritionist? Maybe your doctors would be able to recommend one. Many PH patients see both!

  • jimi-mcintosh

    Member
    August 16, 2018 at 5:38 pm

    I have gotten different opinions, referred to one weight loss center and they recommended a high protein liquid diet, when I am, stage 3-4 on my kidneys. one kidney has cyst and being watched.My cardiologist feels that I can withstand the surgery, will discuss with my Nephrologist and pulmonologist. I do not want to end up on dialysis, by blowing my kidneys on proteins. I eat 1-2 small meals and GP feels that I need to east 3-4 small meals to stimulate my digestive system. I am just trying to get this weight off and realize some quality of life.

    • brittany-foster

      Member
      August 16, 2018 at 6:20 pm

      Hi Jimi,
      I’m sure with everything going on with your health, weight loss is an added stress. I know in the long term, I make progress by nourishing my body and not starving it trying to put off weight quickly.I hope you can get the answers you are looking for when you meet with the doctors. Keep us posted !

Log in to reply.