• Hi Brittany,
    I’m glad to see you back on the forums, I hope that means you are feeling better. Being I have a coexisting diagnosis of Mastocytosis there have been periods where I have had to start with one food that I can tolerate and slowly build from there. I think I’ve probably tried close to every protein shake on the market! Personally pla…[Read more]

  • Hi Coleen,
    I have a co existing diagnosis of Ehlers Danlos Classical Type. I do believe this is the root cause of my PH. I’ve had many prolapsed organs, hiatal hernia etc. I originally sought diagnosis when my daughter (now 33) was 19-20 and having odd joints sublax or dislocation. Ribs, sternum etc.
    When you live in your body as you see n…[Read more]

  • I know this sounds rather simple but it may help. I went through a period with restless legs related to histamine waking me up, I also have mastocytosis, so I can relate!
    A friend who occasionally deals with restless legs and when it occurs she says it’s horrible , she will put compression knee high socks on and it gives her a lot of relief. S…[Read more]

  • Hi Brittany,
    I hope you get better soon and will be able to get back home. We are cheering for a fast resolution of your problems!
    Judie

  • Hi All,
    I just purchased a Polar fitness tracker for my birthday present.
    I do Les Mills on demand exercise programs which are wonderful and broken down to 4-5 minute rounds alternating muscle groups, body pump my favorite is a barbell strength training workout. I got hooked about 10 years ago when they had a dvd series through beachbody.com.…[Read more]

  • Hi Chris,
    Your case sounds similar to mine., I also have RA which was found 3-4 years ago my PAH was diagnosed last July… my average pressure was 31 so it’s considered mild per right heart cath but I have very similar symptoms as you. My 6 minute walk is good but walking a half mile to the store was causing shortness of breath. My echo were 5…[Read more]

  • Judie posted an update 8 months, 3 weeks ago

    I am curious for those not on continuous oxygen do you use oxygen when you fly? I have not been symptomatic but I decided to check my pulse ox while flying and I was shocked to see high 70’s-80’s. I felt fine but now I’m concerned that I should use my O2 when flying. I was newly diagnosed last summer and my PH has improved on aggressive medic…[Read more]

    • Hi Judie,
      When I’m flying, each airline has a list of approved portable oxygen tanks that they allow and I think inogen is one of them. I would check the regulations of airline that you are flying on. I also needed a medical note of necessity by my doctor (this wasn’t even looked at but it was something that I had with my just in case while…[Read more]

  • Britany
    I too have to do low impact. When I get burning sensations I stop as I take the burning as my body telling me it doesn’t like what I’m doing.
    I do yoga, Pilates and weight training all of which I can control the impact and keep it low. My Pilate workouts have left me with sore worked muscles for 2 days so even though it is low imp…[Read more]

  • I have been ok but my only carry on problem is my portable oxygen it causes me to be thoroughly inspected every time. Plus my mast cell stabilizer comes in foil packaging so that always suspect. In the end I feel safer bc they are thorough. I’m thankful I still travel with little issue.
    We are spending more time in San Diego CA as it’s much eas…[Read more]

  • Hi Libby,
    My spouse is supportive but doesn’t want to worry about what’s ahead as we will deal with it as needed. I am diagnosed with mild PAH and have more or less the same outlook. I am 62 now at age 24 I was diagnosed with lymphoma which I have been cured of for 36 years. I learned to not get ahead of myself emotionally and deal with fac…[Read more]

  • Judie replied to the topic Breathing exercises in the forum Exercising with PH 12 months ago

    I think we are all different and perhaps it is an individual question for our doctors. I do practice Pilates and I hold my breath for a brief pause before exhaling. If I feel it’s not good I just go on and let it out ahead of the class instructions. I am reading a book the science of breath which is about calming our nervous system through b…[Read more]

  • Kathleen,
    I also have Rheumatoid Arthritis which I see a Rheumatologist for. I also have a genetic condition called Ehlers Danlos Classical Type which is felt to be the cause of my PH. Because I see a Rheumatologist I am able to have pain meds prescribed as both conditions can cause acute pain as well as the
    every day chronic pain I deal with…[Read more]

  • Hi Everyone,
    I use an O2 concentrater for night time while sleeping. I often wake up in the morning with my fingers and arm (s) tingling. I check my O2 sat and it is, 97, 98 or 99? Any idea if related? Has thi# eve4 happened to you?
    Judie

  • Hi Constance,
    What is a POC? I live on the beach 40 minutes from Tampa airport.
    Glad you had a good trip Did you use O2 on the plane.? I fly mostly delta they didn’t want to label my O2 being I didn’t use it on board. I wasn’t particularly comfortable with this bc what if I had needed to use it.
    One time they tagged it medical device but s…[Read more]

  • I use a concentrater at home at night at 2 liters. I purchased an inogen machine which I mainly use when I walk on my treadmill. If I walk around my house instead I am still ok without O2. It has come in handy with air travel as I need it between gates and at times exiting the plane on an uphill ramp.
    I have to call the company I bought the…[Read more]

  • Judie posted an update 1 year, 2 months ago

    Potassium balances salt. Having a moderate potassium diet will help ionically lower salt. I am an x nurse I still work but no longer clinically. Most of my experience comes from learning and dealing with my genetic connective disease disorder Ehlers Danlos, suspected as my cause Pulmonary Hypertension. Ehlers Danlos can cause third spacing…[Read more]

  • Martina
    When I saw your picture I wondered if you were flushed. I didn’t want to suggest anything because we are all different. When you list all of your “allergies” and your asthma it makes me wonder if you can have a mast cell disease. If you see an allergist ask about this because of your trouble with food. Since eating a banana can cause…[Read more]

  • Judie posted an update 1 year, 4 months ago

    Chris,
    You are totally right about getting PH treated quickly to prevent progression. This is why I hustled to get my CT scan and lung scan within a week so I could get an 8:20 am appointment with my Pulmonologist the last day before he went on vacation. I was scheduled for 3 weeks later. Tomorrow I increase Cialis to 40mg. I have had a…[Read more]

    • Hi Judie,
      it seems to me that you are keeping the best attitude possible. It is easy to get caught up with thoughts about how our bodies were prior to diagnosis and how much we were once able to do. When I get caught up in these thoughts this can easily lead me to become depressed and makes it harder to get myself out of that hopeless mindset.…[Read more]

  • Judie replied to the topic What are you taking? in the forum Treating PH 1 year, 4 months ago

    Thanks for sharing Terry. Good luck with your upcoming test.
    Peter, so you are one 3 meds for PAH? I am in the beginning of trying to figure out what will work for me and what will not. I also have RA which I am on xeljanz for and finally have gotten it reapproved for another year. Without prescription coverage the cost is $35-40 thousand a…[Read more]

  • Judie replied to the topic What are you taking? in the forum Treating PH 1 year, 4 months ago

    I am halfway through week one on Cealis. I can feel ease in my breathing although my symptoms are still there with exercise 🙃. I double the dose a week from Saturday, I feel ready to increase it now but of course I will follow my doctors instruction. When I return to see the Pulmonologist on 8/23 we will add a second med. I have no idea how…[Read more]

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