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    • #27489
      Colleen Steele
      Keymaster

      It’s important that you develop a heathy relationship with your doctor.

      In a recent column I highlighted the important of getting to know your doctor prior to your first appointment. I provided tips on how to do that. Don’t hold back information and don’t lie, was another key point. I strongly encourage patients to respond to questions and ask their own. Introducing a family member or caregiver to your doctor before an emergency happens is also something that I stressed. Last but not least, treat your doctor with kindness and respect. Remember that they are people too.

      Is there something I didn’t mention that you believe is important in creating a healthy relationship with your doctor? Share your thoughts and experience with us.

    • #27503
      Jen Cueva
      Moderator

      Excellent column and tips @colleensteele. It is so very important to do our homework before we choose a doctor. I know so many who go to an appointment and don’t ask any questions. This is not doing much good for them. As you mention, we need to ask questions, too.

      I wrote one of my early columns about this topic, too. I said, “I want to feel comfortable with, as well as confident in, my doctor. My life is in the doctor’s hands. I don’t know about you, but that one factor makes this relationship high-priority.”

      I love that you remind all to “treat doctors with kindness and respect; they are people, too.” Often some forget this and view them as “just a doctor.” This is one of the most important relationships, especially with a chronic condition.

      How is Cullen taking his care in his own hands with such a transition? He seems like such a mature and “old soul,” so I am sure he id doing an excellent job.

    • #27540
      Sandy
      Participant

      Thanks, Colleen and Jen… very timely topic for me. I am currently in the hospital due to a bout of congestive heart failure. I continue to learn so much about the critical nature of my relationship with my doctors. I’m learning the importance of clearly asking them for what I want, i.e. asking them to confer with one another on an action plan. I’m learning the importance of stating loud and clear what I do not want, i.e. “No, do not order morphine for me. I neither need nor want it”. And I’m learning the real importance of treating them like other vital people in my life… with respect, love, appreciation, and humor.
      Blessings everyone.

    • #27552
      Jen Cueva
      Moderator

      Oh no @sandydenn, I am so sorry to hear that you are in the hospital struggling with CHF. Are they offering you any relief? How long have you been there?

      I am grateful that you are taking your health into your own hands and advocating for yourself. This is so important. I am grateful that Colleen’s column came out just in time. I am proud to hear how you are working with your medical team. I find, at times, that they need our inputs, and most of them appreciate it.

      Hugs and prayers are with you as you improve and get back home. Keep us posted and let us know how we can support you.

    • #27558
      Sandy
      Participant

      Thanks so much, Jen. Got home this afternoon… grateful. In three days, I dumped 7 pounds of fluid thanks to lasix. I am exhausted but am breathing SO much better. I’m scheduled for an outpatient right heart catheterization on Monday to try to pin down whether my PH is coming from scar tissue in my lungs from scleroderma OR from a stiffening of the right side of my heart that is causing fluid to back up in my lungs. Then hopefully they will know who to better manage my symptoms.
      Any of this sound familiar to any of you?
      And Colleen, still holding your family close.

    • #27564
      Jen Cueva
      Moderator

      Hi @sandydenn, I am so happy to hear that you are back at home. Wow, 7 pounds of fluid, I know that has to be a relief. That extra fluid takes a toll on our breathing, for sure. Were you not on Lasix at home? Or, were you on it but a lower dosage?

      Yes, it sounds like they want to do the RHC yo get those answers. Depending on the cause of your PH, that will determine what treatments they can use to help you best. It sounds like you are in good hands. Prayers that your RHC tomorrow goes well, and you get more information.

      Please let us know how we best support you.

    • #27575
      Colleen Steele
      Keymaster

      @sandydenn I am so sorry to hear about your recent battle with congestive heart failure. Isn’t it something how losing that fluid helped you feel much better? Yes, it all sounds familiar to me. For my son it was right heart failure. He eventually was placed on continuous IV milrinone. To believe it or not he attended school with that pump and his Flolan pump. That poor kid had tubes coming out from everywhere under his shirt, but it helped keep him strong until transplant.

      It does sound like you are in good hands. Hopefully your doctor will find the best PH treatment that will help you a great deal and that you are far off from needing milrinone. Please keep us updated.

    • #27679
      Sandy
      Participant

      Hi everyone and thanks for your good wishes. Home for a week now and finally starting to feel stronger each day – YEAH! I was previously on 80mg of lasix per day which has now been increased to 160mg per day. That dosage, plus the complete elimination of salt in my cooking and eating, seems to be keeping the fluid off. I’ve learned alot about signals from my body through this experience. For example, hind sight shows me that this problem was building over several months as I kept gaining weight without explanation. I am so conditioned to think of myself as obese, which I am, that I was writing the weight gain off to fat rather than fluid . . . never even occurred to me. I was also conditioned to look for fluid retention only in my feet, ankles, and hands, when in fact, the majority of my bloat was in my chest/abdominal region. So it’s been a good learning opportunity even tho’ a very scary one.

      And Colleen, your son has to be one of the bravest little boy turned young men that I’ve read about. I envision him in school with all of that equipment hanging on him and it makes my heart ache. What a journey you and your family have had.

      Hope you two ladies, and all of the rest of our group, are staying safe and feeling glad to be alive. I sure am.

    • #27691
      Jen Cueva
      Moderator

      Hi @sandydenn, thanks for the update! I am happy to hear that you are seeing some results and feeling stronger. I was on that dosage of Lasix for years, and only recently could cut back a little. But I am also on 2 others.

      It sounds like you are learning some new tools and tips that are very important and helpful. My swelling happens most often in my belly first. I also see it in my feet, ankles, and hands, but belly bloat for me is my first clue. Do you also weigh every morning and keep track of this? Learning to read food labels to check for sodium and other items is helpful in so many ways.

      I agree with you about Cullen; Colleen son is such a brave little guy. he has now blossomed into an awesome young man, thank God.

      When do you follow up again with your doctors? Take care, and thanks again for your update and important lessons. Many can learn from this.

    • #27705
      Colleen Steele
      Keymaster

      This is such good news @sandydenn. I can hear the relief in your words. And congratulations on staying home sweet home!

      Thank you for your kind words about Cullen. They meant a lot to me.

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