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    • #21687
      Colleen Steele
      Keymaster

      A member within our PH forums recently shared that she has Vasoreactive PH, which is a rare form of this disease. What I have read about this form of PH is that the small minority of patients who have it may benefit from an oral calcium channel blocker and not have to proceed with other PH treatments.

      Although it might be easier to treat, the symptoms and struggles of PH are just as real for these patients.

      Do you have Vasoreactive PH and if so, share your story with us. What treatments are you taking and what has been your greatest struggle?

    • #21718
      Jen Cueva
      Participant

      I know several other PH friends who do have this type of PH. They usually do well on CCBs( calcium channel blockers).

      The only issue I’ve heard or thought about is what if they’re not responding to CCBs. Often, that is a struggle.

      • #21724
        Brittany Foster
        Keymaster

        Yes,
        my issue is kind of similar to this because my vessels really have a hard time responding well to medications. Usually it just goes from one extreme (either too constricted) or when they dilate I end up getting a lot of symptoms like headaches that are really hard to manage. I do well on the beta blockers that I have though and I have a new medication that I am going to begin today that hopefully will improve the strength of the muscles both vascular and the larger muscles in general.

        • #21734
          Colleen Steele
          Keymaster

          Brittany,
          I am so happy and hopeful for you now that you can start this new medication. Keep us updated on how it is going!

        • #21779
          Jen Cueva
          Participant

          Hey Brittany, I am so excited that you are starting this new medication. I am hoping and praying that this offers you some relief so you can start to feel some better.

        • #21794
          Brittany Foster
          Keymaster

          I actually just got the text message that the medication got delivered to my pharmacy so I am looking forward to picking that up later today ! I will probably want to start it tonight so that the side effects don’t feel too bad in the morning. I know it may be a hard titration process and it stinks to have to start it a few days before the holiday, but when my body adjusts I am sure that it will all be worth it. I NEED to feel better than I have been lately and I KNOW that any bit does help!

        • #21835
          Jen Cueva
          Participant

          So happy that you are getting started on this med. I hope that you took it last night and do not have any negative side effects. I hope and pray this is something that will help you feel better overall. I know that you have been struggling for some time, now. You certainly need a break and fast!

          Please do keep us posted on how things are going.

        • #21839
          Brittany Foster
          Keymaster

          Jen,
          I will for SURE keep you updated! I will text you tomorrow and let you know how it’s going. I will be starting it today actually. Last night I had weird numbness in my left arm (where my bypass graft is) I called my cardiologist and we may have to do imaging on it soon depending on what my home nurse hears today when she comes here. Last time they couldn’t hear bloodflow well at all on my left side so I’m a bit concerned with this numbness. Just didn’t need anything else throwing off my body. I really hope I can start it today. It’s always hard to start a new medication when prior symptoms are so bad it’s like you question how much more symptoms and side effects you can possibly handle.

        • #21851
          Colleen Steele
          Keymaster

          Brittany,
          I hope it all works out for you today and the side effects aren’t more than you can handle. It would be a great thing to be thankful for this holiday so I’m praying for the best news from you.

        • #21858
          Brittany Foster
          Keymaster

          Thank you Colleen ,
          The medication that we have is certainly something to be thankful for and I consider myself privileged to be able to get access to the medicine that I have and have it covered by my dads insurance.

    • #21736
      Diego
      Participant

      I’m part of this subset of PAH patients that respond well to high-dose CCB (calcium channel blockers).
      I was diagnosed almost two years ago and, similar to most of us here, I was given 2 to 3 years to live.
      I was initially taking Bosentan until my second right heart Cath when a vasoreactive test was performed and it was positive. I take a very high dose of Diltiazem and the symptoms are not that aggressive anymore.
      I guess I’m somehow lucky but at the end it is the exact same roller coaster we all are on, you never know how things will work.
      Being vasoreactive is not definitive and the good response to CCB can end anytime and I will have to start taking specific PH meds then.

      • #21738
        Colleen Steele
        Keymaster

        Diego, I hope the channel blockers will continue to work well for you for a very long time. My son was also on diltiazem for a while but when he went into acute heart failure he had to stop taking it.

        Thank you for sharing your personal experience! I we will continue to hear more from you.

      • #21780
        Jen Cueva
        Participant

        Hi Diego, I am happy to hear that you are doing well and responding to the CCBs. I am hoping that this will keep your symptoms at bay for some time. Thanks for sharing

        Welcome to the PH forums.

    • #21752
      Rebecca Talkie
      Participant

      No one mentioned that the Calcium Channel Blockers could stop working. I am just on 180mg right now. It was raised after one month. My leg swelling is worse and I have gained weight which is the most aggravating symptom because I had weight loss surgery over 6 years ago so I would lose and then NOT gain it back. The fatigue is also bothersome. The dizziness is better but not gone. I cannot get my Dr. to answer me as to life span. He mentioned the three years for those who have different kinds of PH but NOT vasoreactive. He said I will live longer. OK – is it important for you to know how much longer you may have. I am getting the feeling it is important to me to know.

      • #21754
        Brittany Foster
        Keymaster

        Rebecca,
        From reading statistics about how much “longer” I technically have with my type of congenital heart defect, I can tell you from experience that it never helped to research. It usually just made me feel worse and from what I have found, it is just not helpful especially because so many people end up defeating the odds in one way or another and live LONGER than anticipated. I am sure others on here can back up what I’m saying. Just know that everyone’s situation is different and their responses to medications are different too and need to be individualized. It is concerning that your doctors aren’t calling you back. Is there a nurse or nurse practitioner in the office that you could speak to in the meantime or do you have a primary doctor that can give the specialist office a phone call? Sometimes it helps when another doctor tries to call.

    • #21796

      I agree, doing internet research is pretty much futile at this point. I no longer care what I read. Only God knows the date I expire.

      • #21799
        Brittany Foster
        Keymaster

        Christopher,
        My thought exactly! I have beaten the odds numerous times and as long as I have it left in me, I will continue to do so until it’s my time. I don’t plan on that being any time soon !

      • #21837
        Jen Cueva
        Participant

        I totally agree with you both, Brittany and Christopher. Those websites can scare the heck out of someone. I am well past my “expiration” date. Like Brittany mentions, I have no plans to go anywhere anytime soon.

    • #21876
      Rebecca Talkie
      Participant

      I have had no problems with my Dr. office calling me back, I have never called them. When I asked about life span, he just kind of had a vague answer that Yes, those with vasoreactive Pulmonary arterial HTN tend to live longer. I have a feeling that his vagueness has more to do with the fact that this is a rare type plus the fact that I am new to this. As far as “research” goes, I have discovered that most articles that I have found online are many years old. When it comes to medical FACTS, when time passes, things change. New research puts whole new spins on treatments, etc. He told me not to get online. By that time he had said that, I had already been there. I used that to determine what symptoms are, tests that are done, etc. As an RN, I am well aware that things that are found online can be misleading as anyone can say or post anything. Next up for me is another Echo and 6 min walk test and a BNP lab test, all in February. I exhausted myself with Thanksgiving preparations. My son in law was helping me in the kitchen and in fact cooked the turkey on the gas grill. I think I got through it on adrenaline alone and now I am exhausted. It will be 3 days before all the dishes and stuff is put away. But…it was that way before all this.

      • #21909
        Brittany Foster
        Keymaster

        Hi Rebecca ,
        That is great that at least your doctor’s office gets back to you. It can be frustrating though when it feels like they just don’t know ENOUGH about what you are going through or that the research for your particular type just isn’t there. I have had personal experience with the type of heart conditions that I have that doctors just don’t necessarily “know” the outcomes and what things will look like years down the road. At least some things to look out for would be a good start and like you said, information about managing symptoms etc is important to better prepare for what may lie ahead .

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