• I cam do only 3 minute walk after that my oxygen drops and I start to cough and cough and can’t breath.

  • Carol alexander posted an update 3 weeks ago

    Well i’am struggling with mInus and both day a nite does anyone have any problem with this?

    • You really have had a hard time lately Carol. I’m so sorry! What sort of problems have you been having?
      • I’m so sorry to hear about your struggles lately, Carol. I am thinking of you! What would you say you are struggling with the most right now? Personally, I have been struggling with things too and have been learning that struggle is something that I need to accept as being part of this reality or I will feel defeated every time I have a…

        [Read more]

    • Carol alexander posted an update 4 weeks ago

      @brittany-fosterHi Brittany I just read your last article,l couldn’t have said it any better about what happened to me .Heart ,racing short of breath not beating right etc but doc nothing wrong finally One Doc said you have ph so my journey has begin. Carol

      • Hi Carol ,
        Thank you for reading my article. I’m sorry that you relate to that experience of waiting on a diagnosis and not knowing what’s going on. I feel like sometimes the fear of the unknown is worse because we don’t know what we are up against. Once you do know what the problem is it’s like a relief but also so new which is in itself…

        [Read more]

    • Carol alexander posted an update 1 month ago

      @jimi Hi Jim thank you for the information much appreciated
      Carol

    • My lower legs bother me and the tops of my feet and ankles swell

    • Carol alexander posted an update 1 month ago

      Stay well everybody

      • Thank you Carol! I am glad that you are experiencing some type of relief from the many side effects that can accompany a new medication. It is brave of you to keep “hanging in there” and pushing through the discomfort even though I know some days are harder than others. Please keep us update on how your appointment goes at Penn and let us know…

        [Read more]

    • Carol alexander posted an update 1 month ago

      It seams like the Adempas is working ok now side affects are gone things were tough for a while. Still having trouble breathing when I exert myself. Have an appointment at Penn In Phil ph center next bone scan

      • Thank you for the update Carol. I’ve been wondering how the Adempas has been working for you. It’s always hard getting through the early days of a new medication or dosage change because you never know if the symptoms will subside or linger. I’m glad yours has eased up! Let us know how your next appointment goes and the bone scan.
        • Hi Carol, I’m glad to see you update. I’m happy to hear that the side effects of the Adempas have decreased fir you. I know sometimes it seems those nasty side effects will never pass.

          If your breathing hasn’t improved much with the increase, please let your PH doctor know. It could be you’re just overexerting yourself too much, I know we all…

          [Read more]

      • @jenc Hi Jen started the Adempas ,been on ‘it 3 days just started with the side effects , very sleepy and tired hope I/ will get used to it Carol

        • Good Morning Carol, I am sorry you’re having a tough time with the side effects, I haven’t been on Adempas but I know with all the other oral meds that I’ve been on for PH, my side effects are the worst at the first week or two and mostly while first starting the med and at increases.

          I hope you can get some rest and I know you’ve been through…

          [Read more]

        • Hi Carol,
          just checking in with you. I see that you recently started you medication a few days ago and that you were experiencing some side effects. Please know that all of us are here to support you and to give you words of encouragement through this. Sometimes the titration process of medications can be difficult, but it makes a world of…

          [Read more]

      • @susandahl46 I had a Doc sent to an asthma Doc.who did some tests and sent me to a pulmonary Doc. Had a echo cardio gram ,that is what showed the pressure and the diagnosis

        • Hi Carol,
          I also presented with some of these symptoms initially. I’m glad they found yours through an echo. Did they also do a right heart cath to get a picture of everything going on on that side of the heart and your main pulmonary artery? Mpre invasive than echo but definitely the gold standard for diagnosis.
        • @brittany-foster Hi Brittany you are such a brave girl hope your rehab goes smoothly God bless you
          Carol

          • @carol-alexander thank you so much for your kind words. I hope things go smoothly too. I have been testing out my oxygen levels and when they are in the high 80s I don’t feel as bad as I did before because my heart rate is a lot less high now after the surgery. When it drops into the low 80s which it unfortunately did today I notice the symptoms…

            [Read more]

        • Adampas can anyone tell me if they are are taking any other meds with their Adempas Carol

        • @colleensteele
          It is so hard when a parent passes away,I keep telling myself. You have ph you feel it you know it it’s taking a toll, but you can’t help the way you feel what to do especially since you are so close to the parent.cant take new meds doc not now until you calm down .what to do

          • Carol,
            I’m so sorry you are going through so much right now. That’s such a scary feeling knowing that you don’t have much control over what’s going on with your body. Especially difficult when it’s taking such a toll on you physically (and I’m sure mentally too) . Know that we are always here for you whenever you need to vent about any of it ! Big…[Read more]

          • Carol, allow yourself to grieve. I haven’t lost a parent but I can only imagine how heartbreaking it is to experience. Your emotional wellness is as important as your physical. I know you are worried about both and that is the challenge. Stay in touch with your doctor to help him evaluate when you might be ready to proceed with your treatment. As…

            [Read more]

        • Start well rveryone

        • Carol alexander posted a new activity comment 1 month, 3 weeks ago

          I called my doctor and you were right he said to hold off until I settle down. Thank you for your kind words I need them. Carol
            • I was fairly certain he would agree. I’ve been thinking of you all day.

            • Great big hugs , Carol! I’ve been thinking of you ! Definitely know you’ll be grieving as this was your Mom, be gentle with yourself and know we are here if you need support. Hugs from Texas 🤗
            • @jenc ,sorry I didn’t get back to you sooner my mother passed away this morning it’s been a rough time.souposedto start my new adempas to day I don’t know just say a prayer Carol

              • Oh @carol-alexander, I’m so sorry for the loss of your Mother. I know that this must be heartbreaking to say the least. Please know I’m keeping you and your family in my thoughts and prayers. Due to the circumstances, it may be better to wait a few days for the increase, I would let your doctor know. Please accept my condolences and know we are…

                [Read more]

              • @carol-alexander I too am so sorry to hear about the passing of your mother. You will remain in my thoughts and prayers! I agree with Jen, talk to your doctor and maybe hold off on the adempas. I’m sure your doctor will understand. We are here for you!
                • I called my doctor and you were right he said to hold off until I settle down. Thank you for your kind words I need them. Carol
                    • I was fairly certain he would agree. I’ve been thinking of you all day.

                    • Great big hugs , Carol! I’ve been thinking of you ! Definitely know you’ll be grieving as this was your Mom, be gentle with yourself and know we are here if you need support. Hugs from Texas 🤗
                  • @colleensteele I was wondering when it is alright to get a second opinion. Will it cause a problem with your Doc.

                    • The closest to a 2nd opinion experience that I have come is when my son was running out of time and it was advised that we double list him. He was listed at Stanford in CA and just when he received the call we were wrapping up double listing him at a hospital in WA state. The big difference was that the hospital in WA could only do a lung…

                      [Read more]

                  • Hope you are up and well real soon. God bless you Carol

                  • Stay well

                  • Load More
                  Copyright © 2017-2019 All rights reserved.

                  ©2019 KLEO Template a premium and multipurpose theme from Seventh Queen

                  CONTACT US

                  We're not around right now. But you can send us an email and we'll get back to you, asap.

                  Sending
                  or

                  Log in with your credentials

                  or    

                  Forgot your details?

                  or

                  Create Account