Anyone else with pulmonary hypertension and mac

Posted by Elaine @laneyk, Oct 22 5:00am

I had Mac 10 years with successful treatment ending in 2016. In December 2023 I was diagnosed with mod to severe pulmonary hypertension. I have not been able to take many of the medicines and now I have a recurrence of Mac. I’m a frail 84 yo woman. I have been losing weight constantly. I was just in the hospital where the Mac was discovered. Taking the meds for Mac continued to make me lose weight 10 years ago. I have lost weight steadily with the PH and now I’m going to take the three mac drugs. I’m wondering how I’m going to handle more drugs. I’m 100 lbs now. With Mac first time I couldn’t eat much. Does anyone have suggestions on diet with both diseases? Nothing tastes good.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

pacathy | @pacathy | Oct 22 6:00am

I'm so sorry. You've sure been thru a lot.
Here's a link Scoop posted recently on the subject.
https://www.nationaljewish.org/NJH/media/ProEd/NTM%20Patient%202019/MacDonald-Nutrition-Guidelines.pdf

kpger | @kpger | Oct 24 9:13pm

I know you must be miserable and I feel for you.
Do you have bronchiectasis as well? I'm interested to know how your PH was diagnosed.
Take care.
Karen

Elaine | @laneyk | Oct 25 9:21am

I just do the best I can. All in all, I guess I’m doing pretty well. I can’t get out because breathing is hard. I’ve not heard Bronchiectasis term mentioned but reading what it is I’m sure I have as well. The addition of the medicine for MAC will put me back a little. I’ve just started that.

The PH was diagnosed after I fainted. I had had other times of nearly fainting but managed to get to safety. This time I knew it was coming but had no rescue spot. After that fainting I went into hospital and had an echo. Which showed that I had severe PH. I then had Right heart categorization which further showed PH. My feet and ankles were swelling really bad. The increase of SOB was just thought to be worsening COPD and not followed up as it should been. The first 24 hours of admission I excreted 6 liters of fluid after IV lasix. 2 weeks ago I was diagnosed with return of MAC. I have not been able to tolerate some of the medications for PH due to side effects. At this point we dont know if the MAC is causing increased SOB or worsening of the PH. That remains to be seen after treating the MAC. Other than my lung problems I am in good shape. No other problems but arthritis. I sorry to write a book but it’s a long story.

pmmar1 | @pmmar1 | Oct 25 11:26am

I am 80 years old, in good health, and am not on the Big 3, which I stopped almost 3 years ago due to the side effects. I am a patient of NJH and for a year consulted with their dietician for guidance with my ID doctor's recommendation. I am 5'4" and weigh 91 pounds. I did not lose weight during this time of early diagnosis because I have weighed around 95 pounds all my life and weight varies daily anyway. The fear was I would lose more weight after my diagnoses of MAC/BE/and a lung fungal infection. Working with a dietician who understands MAC/BE can make all the difference and she/he can give you the guidance you need.

I suggest you consult, like I did, with a dietician in order to at least maintain your weight if you are able to do so. If you are unable to, you may want to try Boost Very High Calorie (VHC) nutritional drinks (500+ calories per 8 oz), which can only be bought online (Amazon). My dietician suggests 2-3 of these a day to at least give you 1500 more calories above the food you eat during the day.

Best Wishes!