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    • #25041
      Jen Cueva
      Moderator

      As we continue to celebrate Nurses’ Week, I wanted to ask you to share a story about how a nurse made you or your loved one feel special. Living with PH, we often are surrounded by all types of nurses. Yes, there are some terrible nurses out there. But my experience has been that I have had some amazing nurses who genuinely care, and they are not just doing their job.

      I wanted to share my column this week as I celebrate some of the amazing nurses that I have connected with. They certainly can make a hospitalization or test a bit more comfortable.

      Can you share a story when a nurse has made you feel special? If so, did it help you to feel more comfortable with a procedure or hospitalization?

      Again, thank you for all of our nurses who are members here.

    • #25050
      Colleen Steele
      Keymaster

      @jenc nurses are some of my most favorite people. There really aren’t words powerful enough to describe how important and appreciated they are. Thank you for your years of service as a nurse and for writing a column dedicated to the field. I also wrote a column back in January that shares my thoughts and experiences with the nurses who have cared for my son.

      I hope other members will chime in and share special nurse stories too.

    • #25054
      Jen Cueva
      Moderator

      Thank you, @colleensteele. I am so grateful for the many great nurses I have met. We often hear of bad experiences. I try to keep a note with my nurses and nurse aides names. Once I return home after a hospitalization, I often call and tell the unit manager about my positive experiences. This, or if they stop to check-in, I recognize the nurses who have been so nice and caring.

      Nurses can certainly make a lousy hospitalization better or the opposite. I am hopeful that others will share their positive stories, too. Thank you again. I need to go look for that column of yours. Maybe you can share it here, also?
      I can imagine the hours that you were with Cullen at the hospital; you have shared such close bonds with the staff.

    • #25055
      Colleen Steele
      Keymaster

      @jenc I thought I shared the link but I guess it didn’t attach. Let me try agaian.

      Honoring the Nurses Who Have Taken Care of My Son During His PH Journey

    • #25056
      Jen Cueva
      Moderator

      Hi @colleensteele, I love this beautiful tribute to nurses. You offered a variety of ways that nurses have helped Cullen and your family.

      I had one nurse who gave me 2 mini Cokes as a treat. On the negative, that started a mini Coke addiction that I still have, hehe.

      I have also noticed that the few male nurses that I’ve had have been incredible. I’m happy that Cullen could bond with a few. I’m sure that helped him feel more comfortable, too.

      Thanks for sharing.

      I can second the strong stomachs, too. But I loved that you mention parents and caregivers, you are the best nurses.

    • #25073
      V.R. Peterson
      Participant

      What a wonderful topic! When my son was first diagnosed, he went straight from having the RHC to the ICU until they found the right dosage to ease the pressures in his right heart. I’ll always bless all the nurses during that first hospital stay. They’d always take time to talk (and listen) to him, but I’ll always remember the story he tells about the night he couldn’t sleep, and the nurses bought a huge pizza and had a party in his room all night. I don’t know their names, but I’ll always love them.

    • #25078
      Jen Cueva
      Moderator

      @mamabear007, I love that pizza party story. Those nurses are the ones who he will never forget. That is so sweet and fun. I am sure that he enjoyed it, too.

      Thanks for sharing. I hope that you are doing well this week.

    • #25079
      V.R. Peterson
      Participant

      Thank you, @jenc. I’m doing quite well this week. 🙂

    • #25080
      Bill Jones
      Participant

      I have had some great nurses in my time but there is one that will always be in my mind. She was the coordinator at St. Luke’s Hospital research department in Milwaukee for my clinical trial for a medication going for approval. Linda Boehm was the most understanding person on all levels. She would be waiting at the front doors with a wheelchair when we pulled up. She always wanted me to be rested so I could do my best with the days tests and visits with the team. She could calmly explain things that were happening. Within minutes of my arrival she new what kind of day I was having and would always have words on encouragement. Though i am not in the study anymore she will come look for us on my appointment days and sit with us while we are waiting. She has been a very special friend for me as well as my wife. I will always remember her.

    • #25081
      Jen Cueva
      Moderator

      I am happy to hear that @mamabear007. I know you often are caring and doing for others. Please remember to take care of yourself, too. I am sending you hugs from Texas.

    • #25082
      Jen Cueva
      Moderator

      Hi @bill-jones, it is great to see your post. I hope that you are doing well.

      l love your story about your nurse, Linda. She sounds like an amazing nurse and friend. It certainly makes things better when we have someone like her there to help. My favorite part is how she knew within a few minutes what kind of day you are having. It is almost like she can read through you. Words of encouragement can go a long way, especially when you feel like someone understands and cares.

      It sounds like Linda is the type of nurse that we need more of. When we connect like this, it can be a game-changer in our care. Do you feel like Linda impacted the way you care for yourself? I would think that she would make going to an appointment something that was not dreaded.

      Thank you for sharing such a touching story. I hope that you and Linda stay connected for years.

    • #25086
      Bill Jones
      Participant

      Good morning Jen. I haven’t been doing to well the last few months. My oxygen requirements seem to be needing more. This week we have been at the Mayo Clinic in Rochester, MN for an assessment and my wife and I both miss our good friend Linda. It is great when you have such a connection with someone involved with your care. Linda is waiting to hear from us on how things go when we get back home. She is a mind reader, after I had posted last night about her she had sent a quick message to check in. Talk about timing?

    • #25163
      Colleen Steele
      Keymaster

      @bill-jones nurses like that make all the difference in the world! My son has a few nurses that became friends and although he isn’t their patient any longer, they still check-in occasionally to see how he is doing. One of his favorite PH nurses is so amazing we asked her if she ever considered becoming a doctor. She said no because she enjoys the more personalized approach she can take with patients as a nurse.

      I’m so sorry to hear that you have been struggling this past few months. Maybe with assessment your doctor will suggest dosage changes if you are on a PH treatment, or maybe adding one?

    • #25169
      Jen Cueva
      Moderator

      @bill-jones, I am sorry to hear about your struggles and need for more oxygen. I hope that the assessment as Colleen mentions will offer them an idea and a plan to help you. What treatments are currently on? I know often PH patients are on dual or triple therapy. Please do keep us updated.

      That is so ironic that Linda checked in on you after you talked so kindly about her. That is such an awesome bond to have.

    • #25183
      Jimi Mcintosh
      Participant

      I truly adore the nurses that care for me, they listen and become my advocate when I have no friends or family to speak for me. Their dedication, hard work and personal sacrifices is inspirational. I feel that I am doing as well as I am because they showed compassion, understanding and answered my call in the middle of the night.

    • #25194
      Colleen Steele
      Keymaster

      @jimi sometimes they are great to talk to even when there are friends and family available. They have a better understanding of what you are really going through and won’t tip toe around uncomfortable topics. I’m glad but not surprised that you have had wonderful support from nurses. There are so many great ones out there.

      I love the middle of the night call that you mentioned. I remember one time my son was having problems in the middle of the night. I e-mailed his PH nurse not expecting an answer until morning, but she CALLED me! She was awake and packing for vacation and didn’t want me to wait for help. She always went above and beyond her role in Cullen’s care.

    • #25197
      Jen Cueva
      Moderator

      @jimi, thanks for sharing how much you appreciate your nurses. I also think that answering your calls in the middle of the night must be reassuring. The compassion that most have shown continues to amaze me. I am forever grateful for my many PH nurses. My current nurse, Tracey, emailed me today to let me know that the clinic opens next week. She told me that I decide to come in or wait and do a virtual visit until my next appointment. She also updated me on my labs before the weekend so that I could increase my potassium as needed.

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