• Dear Brittany,
    So sorry you have hit a rough patch again. If I could stand on my head and make it go away, I would. In the meantime, hang in there. I hate being in the hospital too and hope you are back home real soon.
    Thinking of you and sending love and great big hugs.
    Wilma

  • My good b.p. is 100 on up. If higher number is below 90 I am to take a pill but not the adempas. I do not like to do that because it is counteracting the adempas. Have only been in that situation a couple of times.

  • I have been taking Adempas since last week of March, 2019. Blood pressure was closely monitored since was normally on the low side. It seems to be OK and went for review in July. All numbers were up. Doctor was happy with results. Will be going back in September and am hoping for more good news.

    Wilma

  • Terry,
    Less than a year ago I had a pulmonary embolism and all that goes with it. Later my doctor told me I was clear and would probably never have another clot. After about a month I was feeling same as before the embolism. After another scan it was determined that there were more clots coming and they did not know from where.
    Kind of a long…[Read more]

  • Dear Brittany, You are on my mind. So glad to hear you are recovering and out of ICU. So many prayers are coming your way, know you will feel better each day. Love and big hugs, Wilma

  • Wilma Doan posted an update 5 months, 1 week ago

    Welcome to the new moderator, Colleen Steele.
    The only news I have is that I am getting along well with Adempas and have made it to 2 mg. I will have the tests over again in July and see the doctor. Hoping he will find that the drug is helping. Still on oxygen.
    Wishing you all well with your treatments.
    Wilma

  • Wilma here. Happy to hear you will soon be enjoying food again Brittany. I wish you the very best.
    I have finally started with 1 mg of Adempas Am looking forward to good things happening. So far – so good. I may be having some slight side effects but barely noticeable. Thank goodness I do have fairly good tolerance to those things. My…[Read more]

  • Hello dear friends and a new friend, Susan Licht.
    I hope you are all doing well.
    Sorry I haven’t written lately, had and still have some computer problems. Besides that I have no big news. Met with the surgeon at Mayo last month and he told me he definitely would not operate. I was not too surprised. Now the options left are the balloon or…[Read more]

    • Hi Wilma,
      Thank you for the update. It’s always great to check in with our members to see what’s going on. Everyone certainly has such busy lives when managing this illness and I know keeping up with everyone can be difficult. Online groups definitely make that part easier for me because it’s less tiring to chat online than it is to hold…[Read more]

  • Wilma Doan posted a new activity comment 9 months ago

    Hi Ron, Started writing and lost what I had written. Might find it and might not. The main thing I wanted to tell you is that you will probably need to go thru a doctor to get into Mayo. I have been working on this for two months. Finally got thru all the tests and then waited for consultation. It has been changed several times. As of right…[Read more]

    • Thanks, Wilma,
      I lived I Scottsdale, AZ for years so I know how it works. I will pray for your Peace and that you have a great peaceful day, each day. I am in the process of working out all the details. God bless you, dear, your such a sweet lady.
      Your Dear Friend
      Ron Cole Thanks for your thoughts.

  • Wilma Doan posted a new activity comment 9 months, 4 weeks ago

    Vanessa, have been thinking I would have some information to pass along but my ‘consultation’ time has been changed three times, from the 19th to the 27th of December, and now the 16th of January. Same as you, I think I have had every test known to man plus a few more. In the mean time, hang in there and have good holidays. Will write when I…[Read more]

    • Wilma — that sounds like my follow up schedule, changed three times since mid November, currently for January 9. One of the nurses from my PH team calls about once a week. The specialty med desks are attentive and helpful too. I cannot say the same for my primary at the local hospital.

      But I worry that your consultation delays also mean…[Read more]

  • I am on oxygen only at night right now. 100% Shea Butter was recommended to me for my nose being dry and it is safe around oxygen. My husband bought it at a medical supply store.
    Wilma Doan

    • Hello Wilma, so Happy to be your friend,
      write anytime, love to hear from you

      Ron Cole.

    • Hi Ron, Started writing and lost what I had written. Might find it and might not. The main thing I wanted to tell you is that you will probably need to go thru a doctor to get into Mayo. I have been working on this for two months. Finally got thru all the tests and then waited for consultation. It has been changed several times. As of right…[Read more]

      • Thanks, Wilma,
        I lived I Scottsdale, AZ for years so I know how it works. I will pray for your Peace and that you have a great peaceful day, each day. I am in the process of working out all the details. God bless you, dear, your such a sweet lady.
        Your Dear Friend
        Ron Cole Thanks for your thoughts.

  • Wilma Doan posted an update 1 year ago

    I didn’t really want to use facebook so I deactivated it. I hope that is not a problem. I was diagnosed with PH. my pulmonary doctor, he said he did not know how to treat me so have an appointment Nov 5, hoping to have more info. In the meantime have read many of your experiences and they almost all fit me. I had a pulmonary embalism and…[Read more]

    • Wilma,
      I’m so glad you found us here on the forums. I find that this is the best place for me to go and vent what I am going through and just connect with others who genuinely care and “get it”. I am sorry that you are going through so much right now and are in the beginning stages of all of this as far as testing and treatment goes. I hope that…[Read more]

    • Wilma, that’s been my story— and from what I can tell, not an uncommon one. I’m a little ahead of you on the cycle and just finished the daunting battery of tests and starting treatment program. Tired and somewhat overwhelmed but relieved to have reached this point. Six months ago I wasn’t sure I would

      • Vanessa, have been thinking I would have some information to pass along but my ‘consultation’ time has been changed three times, from the 19th to the 27th of December, and now the 16th of January. Same as you, I think I have had every test known to man plus a few more. In the mean time, hang in there and have good holidays. Will write when I…[Read more]

        • Wilma — that sounds like my follow up schedule, changed three times since mid November, currently for January 9. One of the nurses from my PH team calls about once a week. The specialty med desks are attentive and helpful too. I cannot say the same for my primary at the local hospital.

          But I worry that your consultation delays also mean…[Read more]

  • Wilma Doan became a registered member 1 year ago

    • Hi Wilma,
      Thank you for registering with the PH forums. I can see that you are still in the process of filling out the profile. Are you a PH patient or a caregiver/loved one of someone with PH ? How did you hear about the forums? I’m glad you found us here. This is a great community of support and understanding. I am one of the forum moderators…[Read more]

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