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    • #22315
      Colleen Steele
      Keymaster

      Happy New Year! What is on your 2020 medical calendar so far, especially in January? Share your upcoming appointments, procedures, new treatments and concerns with us so we can support you through the journey.

    • #22360
      Anonymous
      Inactive

      Well I have a list like always. Something new is I have several ingrown toenails that are being removed on January 15. Never had any problems with my feet before I normally get a pedicure once a month. But now I can hardly walk or wear sneakers. So hopefully this gets cleared up. Who knew ingrown toenails could be so painful? Lol I also need to find a new pain medicine. I have stopped taking Morphine (my choice) my body got so use to it, like I was craving it, even in the middle of the night. I had to stop. I was on it for 3 years. It was hard to get off of but I am glad I did. I haven’t taken it now since October. I see my Pulmonologist in January. I have started Adempas and he would like to add Uptravi? Not sure how I feel about that. Side effects sound terrible. And starting new medicine gives me high anxiety. Well that’s about it for now! I think that’s enough. Lol take care

      • #22364
        Colleen Steele
        Keymaster

        Shannon, ingrown toenails are very painful. I’ve had them before but luckily I did not have to have them removed professionally. It’s good that you are having them taken care of because I have heard that they can actually develop into serious problems. Hopefully you will feel so much better once they are removed.

        Congratulations on successfully stopping the morphine. I can imagine how challenging that must have been. How have you been feeling since you stopped taking it and past the cravings?

        My son was never on Adempas or Uptravi but as you know, several of our members are and I hope will jump in to share their experience. Wishing you the best on whatever you decide.

        Happy new year!

    • #22372
      Mary Easley
      Participant

      I get to start 2020 transitioning from Tyvaso (inhaled treprostinil) to IV Remodulin (IV treprostinil) on January 7th. Getting more and more anxious as it draws closer. Doc will get the party started with an unsedated right heart cath, always so much fun! Then the party games continue and I get a central line in my chest as a party favor. The fun will continue with the titration of Remodulin and after a few days I will leave with lovely parting gifts ~ 2 pumps, a fanny pack (always so fashionable), and a large box of medicine and supplies. What better way to start 2020?

    • #22374
      Jen Cueva
      Keymaster

      Hi Shannon, Happy New Year. I experienced an ingrown toenail in high school and it hurt like heck. I am happy that you will have them removed soon to give you some relief.

      I am happy that you were able to stop the Morphine, but I also hope that you are not in pain and need pain relief.

      I am on Uptravi and Revatio, not Adempas, but I am doing well on it and was told I may need IV treatments before it being approved. I have the flushing, headaches, etc., but the worst of the side effects for me was when I titrated up the dosages. I was well prepared for the side effects by my PH team. The leg pains for me is probably the worst side effect. I know that we all are different. Please keep us posted.

    • #22375
      Jen Cueva
      Keymaster

      Oh, Mary, I love how you describe your transition as a party. It sounds like a pretty big party with lots of anxiety and nerves to add to your other party favors. It sounds like your PH team has explained the transition pretty well, and with much excitement. Hehe

      Sending you positive vibes and prayers on Jan.7, and coping with the transition. The transition to your Tyvaso to an IV pump is a pretty scary ordeal. I would be nervous, too. It sounds like you are in good hands. Please do keep us posted on the big New Year’s party.

      We will be here for support. We have some amazing and caring moderators and members here.

    • #22376
      Jen Cueva
      Keymaster

      Well, after reading the previous comments, I feel like I am pretty boring. Hehe

      I have a few appointments with my hematologist/oncologist. I have an Echo and a follow up with my PH doctor, too. I forget the exact dates but these are in January. I also have a dental appointment that I am most dreading, after not making it last year. Those appointments are often skipped. Which reminds me, I did make it to my Gyne already this week.

      Now that I typed this all out, it sounds busy, but mostly routine stuff.

    • #22380
      Mary Easley
      Participant

      Thanks Jen. I remember reading about your canoe trip with (I believe) your daughter and son-in-law. Very inspiring. I’ll post to let y’all know how the Remodulin party is rocking.

    • #22381
      Jen Cueva
      Keymaster

      Thank you for the kind words, Mary. That canoe trip was one of my first columns. I appreciate the support.

      I know that you’ll be “ rocking” the Remodulin party.

    • #22663
      Jen Cueva
      Keymaster

      Hey @contrarymary, I have not been on in a week or so. How are things going for you? If you posted an update in another area, I apologize. I checked some. But I did not see you, so I wanted to check in at your party.

    • #22666
      Mary Easley
      Participant

      Remodulin party lasted longer than expected. Started 2 days early when I went to local ER for worsening cough & SOB. Thought they would give me a breathing treatment, wave some IV lasix at me and kick me to the curb. Wrong! Admitted me, released me 90 min before scheduled RHC at Loma Linda an hour away. Spent Tuesday through Saturday morning in the ICU before being transferred to step-down cardiac unit. While at Loma Linda I won the Triple Crown: influenza A, pneumonia, & a sinus infection. Granted, I could have gotten it at Temecula Hospital, but I have never been so weak in my life. Discharged last Wed and slowly getting stronger.

    • #22674
      Brittany Foster
      Keymaster

      @contrarymary wow that is the “Triple threat” right there! I can’t even imagine having the flu, pneumonia, and a sinus infection all in one. No wonder why you were feeling so terrible. As bad as it probably was to be in the ICU, at least you were being monitored very closely. Whenever I am in the ICU I don’t even recall being in there from all the medication that I am usually given. When I had my heart surgery I was in there for a few days because of the drainage tubes still draining out, but I only remember briefly waking up right after and talking with the surgeons (well I thought it was right after but it wasn’t). I am guessing that you didn’t end up getting your right heart cath and that they are probably looking to do this when you are more recovered? Just take things one day at a time as cliche as that sounds because it seems like you have really been through a lot!

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