Pulmonary Hypertension News Forums Forums Our Community Upcoming Procedures What is on your medical calendar for May?

  • What is on your medical calendar for May?

    Posted by Colleen Steele on May 1, 2024 at 12:13 pm

    It’s May 1st, May Day! Are you feeling happy because summer is approaching or are you yelling, “May Day-May Day” because your calendar is packed this month with medical appointments?

    What is on your schedule? Tell us about it so we can offer our support.

    Colleen Steele replied 1 month, 1 week ago 4 Members · 22 Replies
  • 22 Replies
  • Randolph Reynolds

    Member
    May 1, 2024 at 6:49 pm

    My reply didn’t go through

  • Colleen Steele

    Member
    May 2, 2024 at 8:41 pm

    This is what May is looking like for @Randolph Reynolds .

    Glad to see you back on line Colleen. As for May, if you ever saw the musical, Camelot, with Julie Andrews singing ”Tis May” that is the way I felt in May 1964. This May I have my six months checkup with my PAH specialist. It is a bother, three tanks required and some volunteer to drive the 110 miles to PHX.

    I read Debbie Moores comment about two much oxygen. I hope that her pulmonologist knows what she needs. That issue is a new one.

    Now ensconced into a ’retirement’ place – big hotel actually – and have seen only one person with an oxygen bottle but she was also in a wheel chair. I feel out of place here. It was a decision we had pondered for a couple of years.

    • Colleen Steele

      Member
      May 2, 2024 at 8:48 pm

      Thank you @Randolph Reynolds it’s great to be back!

      How have you been feeling? Will you be addressing any concerns during your 6 month check-up? What day are you going? I’ll say a prayer for your travel there and of course for the appointment itself.

      I’m sorry to hear you don’t feel like you fit in at your new home. Give it time and hopefully your feelings will change. Do they offer activities and social events there that you and your wife can attend?

      • jen-cueva

        Member
        May 21, 2024 at 12:10 pm

        Hi @Randolph Reynolds. Did you alreday have your PH clinic appointment this month? How did things go? Did you have questions or concerns, and did you get answers?

        Are you adjusting any better to your new living arrangements? It sounds like fancy Assisted Living; when I saw patients at those nice places, the Chef would often invite me for lunch, and the food was pretty tasty. Also, it would depend on dietary requirements. At another one where I worked as a nurse manager, I came in early, and the chef there would ask if he could make me breakfast. He made bacon, sausage, grits, eggs, and toast most mornings for the staff. Now, that was the best-smelling place at breakfast time! It reminded me being at my late grandparents home as a kid- minus the buttermilk biscuits.

    • jen-cueva

      Member
      May 6, 2024 at 2:13 pm

      Hi, @Randolph Reynolds. I’m sorry you feel out of place at the Retirement Center. I hope you and your wife will feel more comfortable in time. I know you were dreading this move going into it, but you and your family thought it needed to happen.

      Most of these “swanky” places have activities on the ground and outings where they take you and drop you off. Do they offer that? If not, maybe find a writing group or some fellow Veterans you can chat with.

      When is your PH appointment in Phoenix? Does the same friend usually take you each time, or can you switch it up? Do you have any questions or concerns to bring to your PH team?

      Please let us know when it is. I’ll pray all goes well, buddy. Hopefully, you are working with someone on your mental health, too. This transition is significant for you and your wife; I can only imagine the emotional toll. 🙏

  • jen-cueva

    Member
    May 6, 2024 at 2:57 pm

    This month is pretty light, with only a few medical appointments. This afternoon, I see my PCP and have labs. However, because May is Mental Health Awareness Month, I have my therapist appointment and follow-up with my psychiatrist.


    Although not on the medical front, my mom is visiting for several days for Mother’s Day. Manny bought her a ticket to surprise me. That was until I was going to send her flowers for Mother’s Day, and he told me last Sunday. It’s her first time to visit us here. So, we are all excited to see her. 💜

    • Colleen Steele

      Member
      May 7, 2024 at 8:08 pm

      @jen-cueva I think adding your mom to your medical calendar is appropriate because I’m sure her visit will boost your mental wellness and we are all about whole body health here!

      • jen-cueva

        Member
        May 8, 2024 at 10:46 am

        So true, @Colleen; overall health is something we do focus on. Thanks for that reminder to us all. 💜

        Do you have any appointments this me? How about Cullen? Is he good with his appointments for a bit?

        I know that @Carol Volckmann also had a few things planned this month. Carol, do you want to share any apopointments you alereay had or looking to later this month?

      • Colleen Steele

        Member
        May 9, 2024 at 6:08 pm

        @jen-cueva I see my new cardiologist on Monday at 2. I’m long overdue to see one. My heart has been acting up a bit since Brian’s passing but I think it’s just grief and at times, possibly panic attacks. But I’m going to the cardiologist to make sure it isn’t something more concerning.

        All of March and now April has been filled to the brim with doctors appointments either for Cullen, my mom or my dad. Cullen has a new patient appointment with an internist tomorrow and my mom has a podiatrist appointment on Monday before my appointment. More are scheduled for the month but I’m trying to focus on them day by day.

      • jen-cueva

        Member
        May 14, 2024 at 10:05 am

        Hi @Colleen, good luck at the cardio today. I hope they will order some tests to be sure this is nothing concerning. However, grief and panic attacks are worrisome, too. Do you already see someone for mental health?

        Again, you are busy with your parents and Cullen’s appointments, but I’m grateful you are carving a little time out for self-care.

        I’m sending you hugs, positive thoughts, and prayers, my dear friend and FWW! 🙏

      • Colleen Steele

        Member
        May 14, 2024 at 5:54 pm

        @jen-cueva weeelll…I rescheduled. My mom had a podiatrist appointment in the morning and it’s been a battle to get her to agree to seeing one. It was very much needed! I found out the office was behind for at least an hour and I would have never made my appointment in time. I rescheduled it for July 1st but I’m going to have to reschedule again. My sister-in-law, husband and son will be here visiting from WI at that time. I know, I know…I need to learn how to make myself a priority but I couldn’t in these 2 cases. I’ll let you know when the new date will be.

      • jen-cueva

        Member
        May 16, 2024 at 3:10 pm

        Hi @Colleen, sorry that you didn’t make your appointment. Maybe you can reschedule it before that time arises. That way, you can get in there shortly after that date.

        Of course, you’re always such an incredible caregiver. But I worry about you taking care of yourself!🤗

  • Terese Tuohey

    Member
    May 7, 2024 at 2:57 pm

    help! my reply isn’t going through.

  • Terese Tuohey

    Member
    May 7, 2024 at 2:59 pm

    I keep getting ERROR: Your reply cannot be created at this time.

  • Terese Tuohey

    Member
    May 7, 2024 at 3:02 pm

    but my error message does go through

  • Terese Tuohey

    Member
    May 7, 2024 at 3:02 pm

    6 dr appts and so far all is good.

    • Colleen Steele

      Member
      May 7, 2024 at 8:10 pm

      @Terese Tuohey are you still having problems posting?

      6 appointments already in May? You have been busy! I hope everything went well? Anything from the appointments that you would like to discuss?

    • jen-cueva

      Member
      May 8, 2024 at 10:43 am

      OMG, what a busy month, @Terese Tuohey! Is it me, or do you like these medical marathons every six months? How are they going, and how many do you have left? What questions or concerns do you have?

      I’m sorry you had trouble posting. I’ll let our tech guy know. Please let us know if this continues to be an issue. But your comment of help made me laugh this morning.

      🤗

    • Colleen Steele

      Member
      May 22, 2024 at 4:45 pm

      @Terese Tuohey that is good to hear!

      Please let us know if you are still having problems posting. Private message @jen-cueva or I what you are trying to post. We will do it for you then reach out to tech support for help with your posting issues.

  • jen-cueva

    Member
    June 1, 2024 at 9:52 pm

    I’m sharing an update from yesterday; technically, his appointment was in May. But as @Randolph Reynolds said, the site didn’t like his inputs. His update is below.

    “Hi to all- I just had a visit to my PAH specialist. He suggested I consider Winrevair. As I didn’t know much about it I searched Bionews. In this forum the problem of bleeding that came up concerns me. I have a call into my specialist because he suggested that I become part of the clinical study. The three injections a week as I recall at $14K an injection. If it will improve my right heart pressures and strengthen my arteries it may be worth it. It has been a decade since I was diagnosed. It would be nice to stop the deterioration.”

    Randy, thanks for the update. Please keep us posted as you talk with your PH team about your bleeding concern. Also, update us if and when you plan to begin the Winrevair(sotatarcept).

    • Colleen Steele

      Member
      June 4, 2024 at 4:04 pm

      @Randolph Reynolds it’s good to ask questions and research before making a decision. Unfortunately there are always pros and cons…may you experience more one than the other if you decide to go with the treatment! I hope you will keep us updated.

  • Colleen Steele

    Member
    May 2, 2024 at 8:51 pm

    Oh @Blue I am so sorry to hear that! Are you seeing any improvement since she has been hospitalized? I hope a plan is in place that will successfully get her better stabilized.

    How are you doing with taking care of yourself through this bump in the road?

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