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    • #22731
      Colleen Steele
      Keymaster

      What PH treatments are you currently taking that you contribute to an improved quality of life? What are you able to do now that you couldn’t before you were placed on this this treatment(s)? In what ways did you improve physically and how long did it take for the treatment(s) to start making a difference for you?

    • #22738
      Shannon
      Participant

      This is a great topic! I really hope people jump in and give some positive outcomes. I am at the end of my rope and could really use some advice or feedback on what is working for other people with PH. I understand everyone is different but I need some positivity. My PH is kicking my butt! Or I guess it’s kicking my lungs! Lol

    • #22744
      Tricia stagner
      Participant

      I was not aware of treatments available for PH patients! That rather upsets me that I was not told by my doctor! In fact after my most recent echo he said there is no meds or anything that can can or help my condition. Any advice from anyone?

    • #22745
      Tricia stagner
      Participant

      I am like you Shannon. My Ph is kicking my butt!!

    • #22746
      Shannon
      Participant

      Hi Tricia! PH is awful isn’t it? Some days are really hard. They do have treatment available to slow the progression of the disease. I am currently on 2 different meds trying to find what works best for me. Have you seen a Pulmonologist? I think that would be your next step. And then normally a heart catheter is needed to see what level of PH you have. But I hope you find help soon. Unfortunately, depending on what kind of insurance you have getting help is like pulling teeth! I go through this all the time. Are you on oxygen? I can’t even imagine what doctor would have told you no treatment is available for your PH. He/She needs a new job. Being a doctor isn’t for them! I have had to switch doctors a few times to get the help that I need. Stay strong and find a Pulmonologist.

    • #22751
      Colleen Steele
      Keymaster

      This message if from @mamabear007.

      For those not experiencing help from their PH specialist, you might want to look up different treatments listed on phassociation.org, on the Patient tab. There are many resources that will help you learn about various treatments, as well as finding a doctor if you don’t already have a PH specialist. If the cost of your medication is an issue, there’s even a link that lists all the different funding available for various reasons (medications, office co-pays and even non-medical expenses).
      Before my son’s PTE surgery for CTEPH, a type of PH caused by blood clots and scar tissue, he was on three expensive medications. His insurance would only cover Remodulin. The manufacturers of Opsumit and Adempas have a program that provides those medications at little to no cost.”

    • #22753
      V.R. Peterson
      Participant

      Thank you, @colleensteele.

    • #22759
      Tricia stagner
      Participant

      Shannon
      Yes I do have a pulmonary doctor. I also have a heart , kidney and primary doctors as well. I have a really long list of illness . I get really down sometimes because I feel so limited in what I can do any more. I have just recently found this form and it appears very helpful and I am excited to speak to other people who have same or similar problems! I need a new direction to get me motivated again.
      You mentioned meds and ph levels. I have not had a catheter but my doctor does an echo of my heart . He said this most recent test showed that my pressure has increased from 40% to 60%. And he was really concerned for me, insisting I do nothing strenuous. I have not been able to do much of anything for so long now that strenuous never seems to get into the picture. I think now I am also lazy(sad to say).i feel like crying out HELP!!!!

    • #22763
      Brittany Foster
      Keymaster

      Hi Colleen,

      Some treatments that I am on are oxygen therapy (now at a continuous flow) , bipap, and medications for my heart including a beta blocker, lasix, and a high dose aspirin. This has improved my quality of life because I don’t get as dizzy or light headed when I am using these treatments. Having the bipap and oxygen and making sure my sats are good also helps my mental health because the low oxygen and lack of good sleep makes my anxiety heightened and also leads to worsening depression.

    • #22764
      Brittany Foster
      Keymaster

      @pebbles I know the feeling all too well. Have they ever discussed the possibility of a heart cath with you? This could be a good way to give a more accurate reading and measurement and also a way to monitor how your body will react with a medication and if your vessels and arteries will be responsive to it. I get the feeling of just wanting to scream out for help and I have had this feeling lately too as things are starting to feel very overwhelming in the things that I can and can not do right now. I was just hospitalized so I have to take it easy for the next few days. I try to still stay as busy as I can during the day. What types of things do you do in the day for YOU?

    • #22786
      Tricia stagner
      Participant

      Hi Brittany,
      I will need to ask about the cath but it may not be possible with the severity of my 2008 heartache. It damaged my left side so severely the doctor called it hamburger. That was a really bad year for my health. They replaced my mitral valve with a mechanical valve. That choice was due to my age of 55 at that time. I will be be 67 in just 2 weeks. I had a pacemaker defibrillator placed in august 2012 and have already had one surgery to replace the battery(feb.2019). I am on warfarin and water pills and metoprolol tartrate and prednisone And oxygen and 3 inhalersand a nebulizer. And other meds for other things. I also have stage 3 moderate kidney failure. I just s real mess!! I have more bad days than good it seems so if I get a good day I tend to go over board a little bit. I have good friends willing to help with house work, laundry or flower beds. I no longer turn down their help as I don’t want to live in a pig sty. But I would still rather be able to do it all myself!! I hope you are feeling better now after you hospital stay. I was in there twice last year . I understand trying to get better! God bless and thank you and Shannon both for your advice and support. I means a lot to me.

    • #22829
      Sheriden
      Participant

      Tricia, I am so sorry about your health challenges. Clearly there is a lot more going on in your body for the doctors to consider. Perhaps they consider the PH secondary to everything else and consider the echo to be sufficient given everything else. My prayers to you and your healing journey…..

    • #22863
      Tony Wiley
      Participant

      Hi my name is Tony. Iam currently on Adempas,Uptravi,Opsumit it is my wonder Drug.It has really made a Difference in my life. I have no Physical restrictions
      Thank God, I Pray for everyone.

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