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    • #22371
      Sarah
      Participant

      I’ve suspected COPD for some time, due to all the breathing meds they have me on, but they didn’t tell me until today. Now I’m wondering if my PH had been dx earlier, I might not have developed COPD.

    • #22377
      Jen Cueva
      Moderator

      Hi Sarah,
      I am sorry to hear that you have now been diagnosed with COPD. That has to be tough when already dealing with PH. I hope that now with both diagnoses that you will be treated with the best treatments for you and get some relief.

      What is your most bothersome symptom? Did they change or add anything new with the COPD diagnosis?

    • #23306
      Carol King
      Participant

      I meant to ask about COPD where this thread first began. Glad someone did. I had a right heart cath some 14
      years ago and was told I had mild, late on set PH. I used cpap and oxygen at night for 13 years and until about 3 years ago did fine. As I became more short of breath, I went on oygen full time. That was mentaly hard to adjust to. My heart doctor wanted me to see a phulmary doctor. It took me sometime to find one near me. Finally I chose one that was in the clinic where a ph specilist from Dallas comes 4 times a year. I wwent for ph but was diagnosis of copd and put on new medicine, Vallera. It has helped but still have nagging cough.
      I feel I need second opion. Am I just tired? I am 83 and my lack of activity has comtributed to weight gain that I know is bad for me.
      I read the forum but usually stay quiet. Have found lots of help. Thank you for the comiments.

    • #23309
      Brittany Foster
      Keymaster

      @carol-king I am so glad that you have joined us on the forums ! I really hope that you know our members are amazing people and will be here for any support you may need. Things like COPD definitely can put more stress on the heart. With the lower oxygen, you may have some type of exertional PH. This is something that isn’t always diagnosed with a standard heart cath or echo. They would need to do an exercise cath (this is only done at a few centers but you could ask your doctor about it if you feel like you would benefit from having this diagnosis and being properly treated for it). What types of things do you enjoy doing to stay active?

    • #23313
      Jimi Mcintosh
      Participant

      PH, PAH, COPD, Asthma, are all very similar , shortness of breath, wheezing, dry coughing, excess mucus production. All are frequently mis-diagnosed, they are progressive in that one follows the other. Asthamatic as a child,PH as an adult, different meds.

      The prognosis is the same, all require a life style change. I cannot tell which one I am being treated for. I have been reading about new approved treatment options, that may benefit us all

    • #23336
      Brittany Foster
      Keymaster

      @jimi it’s so hard to tell which illness is the one that is flaring up. For me personally, I have so many overlapping conditions with similar symptoms that when one flares up I can’t tell whether it’s neurological related or heart related sometimes. That’s always such a challenge for me. But when the treatment options overlap it makes it a little easier to manage!

    • #23345
      Jen Cueva
      Moderator

      Hi Carol,
      Glad that you are here. You have been given some great advice from Brittany and Jimi. An exercise echo or cath can be done at most PH centers. You mention a doctor from Dallas. Are you in Texas? I am, but closer to Houston.

      Often, if possible, patients need to travel a few hours to a PH center. How far are you from Dallas? If your local hospital doesn’t have this available, maybe this is an option. I am sorry to hear about your difficult time trying to get answers. It is so tough when we have multiple issues that affect us.

    • #23349
      Joyce Sandberg
      Participant

      Hi Sarah,
      I was told that my PH (CTEPH) is secondary to my mild COPD. You may have had the same.
      Joyce

    • #23354
      Brittany Foster
      Keymaster

      @joyce-sandberg thank you for sharing this, Joyce. It’s true that many people can have secondary forms of PH caused by another condition (either lung or heart related). I know that for me, mine was caused by my congenital heart defect prior to repair.

    • #23391
      Alfred Gronroos
      Participant

      Hi, nice set of topics – I was diagnosed with COPD 5 years ago and now after right heart cathe the cardio doc stated severe pulmonary hypertention, – they added high blood pressure med and another water pill. Is that all the meds I need for the shortness of breathe I experience? I do a nebulizer, Spriva and pro air inhaler. I read here of other meds that I know nothing about. And I have sleep apnea, on oxygen setting of four twenty four seven. My cardio doc is very nice but not a lot of explaining to me about PH. And I think I know the basics about it. But not long term and I want the long term even if it is a struggle. This forum is great. Sorry that others have these problems but it is helpful. Al

    • #23413
      Rosemary (Rose)
      Participant

      Hi.I have been following the PH news for quite some time. It has been very interesting and helpful. I finally joined last night. Reading this topic really caught my attention as I have verycsimiliar conditions. I have PH that they think stems from World Health Organization (WHO) classes 2 and 3. Heart and lungs. I also have COPD, OSA, and heart problems. Left Ventricular Hypertrophy, Left Ventricular Diastolic Dysfuntion and heart enlargement. I am on a bi-pap at night, and oxygen 2 liters 24/7. And of course high blood pressure. I have also had many bone and spine surgeries; and still have several herniated discs. There is no PH clinic here in Idaho Falls. That would be so great. My pulmonologist is the only one in our area that is on the PH board. I see his PA mostly and he is really trying to help me but I feel there is alot of confusion surrounding PH. For example PH and/or PAH. I have heard that they are considered the same but then I have also heard that they are different and require different medications. I have become my own advocate and am trying to research and learn what is the best way that I can have better quality of life and hopefully that will lead to a longer quantity of life. I have 4 separate doctors. My regular MD, my cardiologist, my pulmonologist and my pain management Dr. I try to keep them all informed on everything. I just had several tests again including another right heart cath. I should have the results in about a week. This is the first time I am posting here so I hope it goes through. Maybe I should be posting in a different place…

    • #23415
      Brittany Foster
      Keymaster

      @robo2677 Hi Rosemary, I just wanted to let you know that I saw your posting. I know that all of this can be so confusing at first especially when you are first getting a proper diagnosis. I know that with the heart cath results your doctors will be able to take a closer look at what could be going on and will be able to differentiate between PH and PAH for you. This is definitely an important question to ask because the two are treated differently with different options to be discussed for both. I hope that you get your results back soon. Were you awake during your heart cath or did they tell you about any of your results immediately after or did you just go home after?

    • #23424
      Rosemary (Rose)
      Participant

      Thanks Brittany. I had my first right heart cath a little over a year ago. At that one my cardiologist told me I had PH right after that one. Then about a week later he told me more about it and told me to follow-up with my pulmonologist also. He left the room right after my last right heart cath. The hospital said he wanted me to stay for at least 2 hours. Everyone thought he would come see me but he never did. I have an appt with him next week to go over it, my recent echo, and a 7 day heart monitor test. I do another lung funtion test tomorrow. Thanks for the info on PH vs PAH. After doing a lot of research, and reading a lot of posts from this group; I am beginning to understand things a little bit better. I am mostly on inhaled lung medications; a couple of blood pressure meds and a baby aspirin daily. I get so out of breath with very little exertion; and I have extreme fatigue where I literally cannot keep my eyes open. My reg medical Dr has has me going through different meds to see if one works for the fatigue. A lot of them make my heart beat faster and my heart rate is too fast normally so we are trying to figure out what to do. Am I posting in the right spot.

    • #23426
      Colleen Steele
      Keymaster

      @robo2677 you did just fine posting here. You really have a lot going on and I know how complicated things can get when you are dealing with a multitude of doctors. Self-advocacy is so important so I’m glad to hear how focused you are on speaking up and educating yourself about your health. In addition to you keeping each doctor informed I hope they are also communicating with each other, especially whenever challenged with a big decision. Your doctors are having you complete important tests, so that is good. Hopefully that will be able to better communicate the results with you soon and further discuss treatment options. Please keep us posted!

    • #23433
      Rosemary (Rose)
      Participant

      Thanks Colleen. Good I am glad the post went through OK. I know some posts I ended up posting twice today. Sorry. I know that my cardiologist talked to my pulmonologist after my last right heart cath; so I hope he does this time too. I started to realize that I really needed to do research and advocate for myself when I wasn’t feeling knowledgeable and/or sometimes confident in what I was hearing in some cases. Especially when even more health conditions started to be diagnosed. It seemed to me that they had to be somewhat related. And where we do not have a PH clinic here with all the Drs together…I knew I wanted to be able to ask some of the same questions concerning my PH and other heart and lung conditions with all my Drs. I have to say some of the stuff you find can be quite scary at times. I try to stay in acclaimed medical sites and of course in this wonderful PH arena. I am seeing more and more how my conditions play into one another;and why some of my symptoms can get so bad. For instance I found out that extreme fatigue and shortness of breath are symptoms of my PH, my left ventricular heart problems, my COPD, and my OSA. No wonder I am always tired and short of breath. One of my main areas of confusion still is am I on the right medication protocol for all my lung and heart problems. Part of me thinks there could be a better plan. Hopefully, after finding out the results of all these tests (in a week or so) from all my Drs….We will come up with the best plan to proceed. Again I want to thank everyone involved with these PH forums because they have been extremely helpful in figuring out what questions I really need to ask my doctors. I will keep you posted. I was also wondering how the forums are established.

    • #23442
      Brittany Foster
      Keymaster

      @robo2677 Hi Rose, I know that it can feel so overwhelming to be diagnosed with multiple conditions and it is hard to feel like you need to understand all of them. But, the good thing about getting a diagnosis is the more you learn, the more you are able to make sense of some of the symptoms you have been experiencing. That was one of the better moments of getting a diagnosis was realizing “wow all of my symptoms really are starting to make a lot more sense” and when I start having other complaints the doctors are able to put the pieces together more for me. A lot of the things that I complain of are actually signs and symptoms of low oxygen, one of them for me being memory troubles and worsening brain fog or memory.

    • #23530
      Jen Cueva
      Moderator

      Hi, @robo2677, As Brittany and Collen mention, this can be overwhelming, for sure. I am hoping that you will have some better answers soon. For me, before I was diagnosed, many inhalers and medications that doctors tried to help me breathe, made things worse. This affected my heart rate and made my palpitations worsened my breathing.

      It certainly is a challenge when you have several issues that are related. It is like the “chicken and the egg” theory. We often wonder. which came first. I am happy that you found us and hope that you are finding some support.

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