This topic contains 15 replies, has 4 voices, and was last updated by  Brittany Foster 4 months, 1 week ago.

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  • #17652
     Colleen Steele 
    Keymaster

    We have a new subforum dedicated to the discussion and support for our members living with PH and co-existing conditions. I hope you will feel open to sharing your experiences there and in return gain helpful information from others going through a similar journey. Let me or Brittany know if you have any questions or topic’s that you would like addressed in this new forum.

  • #17657
     Brittany Foster 
    Keymaster

    Something that is always a challenge for me living with co-existing conditions is the game “does this require an emergency room visit?” or my personal favorite, “what could be causing these symptoms/ what condition is in a flare now?” Sometimes it’s really hard to tell. Another good thing to discuss would be medications because sometimes one medication can interfere with another condition. The list could go on and on!

  • #17664
     Robin Webster 
    Participant

    It certainly is a challenge to become your own triage nurse, so to speak. I’m getting fairly good at it, even though it’s a job I never would have signed on for intentionally. lol! It really is like a game. When I feel awful and I know it but I don’t know why, I just drag out all the medical devices I have on hand and start taking my vitals and ruling out one thing after another. My husband works all three shifts and often he is sleeping and hears she casually holler, “Heads up. We might need to go to the ER.” Usually doesn’t pan out, but the few times it has, he has become about as good an “ambulance driver” as I am a “triage nurse.” Oh, my goodness, you just have to laugh or you’d do nothing but cry.

    • #17679
       Colleen Steele 
      Keymaster

      Robin, you and your husband are quite the team! You are an amazing self-advocate! I can’t imagine the challenge of sitting there, not feeling well and trying to nail down which condition is causing your symptoms. I’m sure what often happens is one thing flares up and others follow. I’m sorry you are dealing with so many health concerns. We are always here to listen and support you whenever and however we can!

    • #17682
       Brittany Foster 
      Keymaster

      Robin,
      Laughter does go a long way! I like your sense of humor and your comparison to a triage nurse. It’s so true. I often feel the same way with all of my medical devices. I usually start with the oxygen and heart rate then work my way to the more technical equipment like the blood pressure machine, sometimes the equipment to test blood levels (not sure if you have anything like that) . It can get very overwhelming but it definitely allows us to really know our bodies best!

  • #17668
     Jimi Mcintosh 
    Participant

    Re: Adempas, I have been on it for 3 years, it provides some relief, but I am still “winded”, walking up stairs, inclines. If you miss your doses for 3-4 days you have to start titration again. I could walk 1.5 to 2 miles before on adcirca and tyvaso.

    RE: Aspiration and regurgitation, I thought it was the norm, I was on several meds for it, that helped, then they discovered that some of the meds , have nasty side effects. I now cut my meats into small portions and eat slow. I have started to choke on melons and some fruits.

    • #17675
       Colleen Steele 
      Keymaster

      Thank you Jimi for sharing your experience with Adempas. I’m glad to hear it is giving you some relief. That information might be helpful to @carol-alexander

      I think acid reflux is common but I’m not sure how much aspiration and regurgitation is, which is why I asked. It sounds like you have learned eating habits to help reduce those issues. You probably already do, but make sure you keep your doctor well informed on how frequently you are experiencing these symptoms. It’s awful when the medications that are suppose to help you causes more discomfort. It’s such a challenge and I hope you and your doctor can figure something out that will better help you!

    • #17683
       Brittany Foster 
      Keymaster

      Jimi,
      I can relate to your symptoms of regurgitation and aspiration. It has to be one of my scariest symptoms that I have. I am worried about the aspiration in particular because this happens for me at night. My recent surgedy that I had helped a lot with the regurgitation part and i am glad to be able to hold down food but I am having trouble with aspirations due to the reposition of my esophagus. Currently getting a test done on this soon actually to see if the shape of the esophagus is now causing this to happen. Makes me nervous because it really disturbs my sleep. Do these symptoms have an effect on your sleep too ?

    • #17689
       Robin Webster 
      Participant

      Jimi,
      I don’t know if this is helpful for you or not, but I recently had a couple of lengthy sessions with a nutritionist. She suggested that with my combination of medical issues it might be beneficial for me to following an eating plan as if I have gastroparesis (even though no one has specifically diagnosed me with that.) I have found it extremely helpful to not only eat five or six small meals a day and to take very small bites and chew much more than I ever used to, but also to follow her directive to not drink while I eat. I couldn’t imagine what a difference that would make, but it absolutely did. I am to drink liquids either half hour before or half hour after eating my small meal. I do sometimes need a sip or two of water to help get the food down. But I find that when I ignore that advice and drink a whole glass of something along with a meal, I really don’t feel too good afterward, and it’s usually then that I have a lot of uncomfortable bloating and indigestion during the night that keeps me from getting any real sleep. I think it falls into the “can’t hurt, might help” category. Nothing to lose by trying it out for a while. My other thought was that maybe you can get your fruit and melon consumption by treating yourself to a fancy, high-powered blender. I love to make mine into smoothies!

  • #17688
     Robin Webster 
    Participant

    I don’t have any information on how many PH patients come down with cancer, but I know that when it happened to me it was my immediate presumption that I would surely die because I couldn’t see how my body — in the condition it was in — could withstand the necessary treatment. (Even my sister-in-law, who is a nurse at a major metropolitan hospital, told my younger daughter to prepare for me to die, because with PH I’d never make it through chemo, surgery and radiation.) If there are any among us who get a cancer diagnosis, I just want to do anything I can to reassure them not to allow themselves (or anyone else) to make negative assumptions. Every single person is different and every cancer treatment experience is different. Here I am five years later — cancer in remission. Your attitude is at least half of the battle. No matter how grave the news may sound or how thick your medical file looks, be sure your oncology team is looking up and AT you, not down at the file. And be sure they are willing to work hand in hand with your PH team. If they don’t have experience treating someone with PH, find a doc who does have. We are special cases, yes, but we’re not impossible cases. If anyone in particular wants to talk about having PH while fighting cancer or having primary biliary cholangitis, I’m very willing to lend an ear or any advice.

    • #17695
       Brittany Foster 
      Keymaster

      Robin,
      Thank you for reaching out and for being a source of support for any of our members who has battled through similar conditions as you, especially cancer and PH. I can’t even begin to imagine the combination of those two. That must have been so hard on your body physically. You are so strong mentally and have such a good outlook that I know that must have helped you in more ways than you can even know. I’m so glad you’re still here and offering us your support and care.

    • #17696
       Brittany Foster 
      Keymaster

      Robin,
      As I’m reading this I can relate to this plan of eating too. I find that eating smaller , more frequent meals through the day helps a lot. It leaves me feeling less bloated, more energized and more satisfied from food. I love making smoothies especially adding super foods into them that are all blended up. I love the taste of avocado but my friends who don’t like them sometimes put them into a fruit smoothie. You can barely taste it but it packs the smoothie with more dense nutrition that is really good for your body! Adding super foods is one thing I really try to focus on.

    • #17706
       Colleen Steele 
      Keymaster

      Robin, your words of wisdom based on your personal experience of having both Cancer and PH will be a blessing to those just starting out on this scary journey. I have made this the topic of the day for our new forum. Thank you for being as open as you are about all of your health challenges and diseases. It takes courage to advocate for yourself but also courage to speak up and share what you are going through. I hope in return you will read other’s stories among the forums and find them to be of great encouragement and support to you too!

  • #17747
     Jimi Mcintosh 
    Participant

    Strangest thing happened last Friday, I ate a small portion of water melon and started choking and regurgitating. Tried honey dew same thing. I have been developing issues and allergic reactions with a host of foods. I do not know if it is the disease or the medicine.

    • #17749
       Colleen Steele 
      Keymaster

      Jimi, it sounds like this problem is really increasing for you. Have you had a conversation with your doctor about maybe having an upper GI series or upper endoscopy?

    • #17758
       Brittany Foster 
      Keymaster

      Wow Jimi,
      I can really relate to what you are going through. As you probably know from reading my pre-surgery posts, I had a lot of problems with dysphagia (difficulty swallowing). Mine was due to a structural problem with the heart that was causing compression of my esophagus. It might be a good idea to reach out to your PH specialists too. They could possible do a quick CT scan if you request one just to make sure there is nothing structurally going on. I am now also dealing with functional problems and loss of function in my newly positioned esophagus and the doctors aren’t sure if it was the compression that made this so slow or if there is something contributing to it. For me, they did an esophagram which is an xray with barium to look at how things are moving in the upper part of the GI tract. I would take Colleen’s suggestion and definitely ask or request further imaging.

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