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    • #29168
      Colleen Steele
      Keymaster

      It’s time to check-in with each other. Did you accomplish any wins this week that you would like to share with us?

      I’ve been making a keeping appointments for myself these past few weeks. As a caregiver, that’s a big win for me.

    • #29172
      Jen Cueva
      Keymaster

      What a wonderful post, @colleensteele. I am proud of you for making your appointments and keeping them. Yes, you caregivers need to focus on your health to better help those you care for. Too often, caregivers’ needs are found at the bottom of the to-do list and often neglected!

      WTG, Colleen!

      This week, I am grateful to be back “on the. grid”. I was lost without my internet and things. But, finally, I gave in and rested when I thought that I could. Things were left undone, and I made progress on my less is more approach.

    • #29336
      Jen Cueva
      Keymaster

      So, I have noticed that we haven’t been sharing some of our weekly wins. I wanted to bump this up so others can share their wins for the week. Last week, I finally got an in-office visit with my PCP.

      I have been trying to use a timer for tasks, and that was helping me last week. Yesterday, I think I overdid it, so today my tasks are fewer and still behind. But, every day, I know that I am stronger. That is OK if it is not all day.

      What small things are going right for you this week or last?

    • #29344
      Colleen Steele
      Keymaster

      I like the timer idea @jenc. Might have to try that myself! Geez, those in-office visits are like a rare sighting of a endangered species. So happy for you that you got that appointment. Cullen just had an in-office appointment with his cardiologist last week and an telemed appointment with lung transplant this week. Both went very well. They are happy with how his heart and lungs appear to be doing.

      Some of you might remember that Cullen has struggled for a long time with his blood pressure. Knock wood – it has been doing so much better for the past month. We decreased one of his transplant meds because the levels were reading too high in his labs. That change I think helped, that and his dedication to a low sodium and no caffeine diet.

    • #31892
      Jen Cueva
      Keymaster

      This is so important to remember. Thinking about what went right can help us get through the weeks.

      I know some days, maybe weeks, it may feel like everything is going wrong. Believe me, some days, you may want to go back to bed and start over. We all have those weeks; you’re not alone.

      So, what went right last week, and what things are you doing to try and make this week a bit smoother, too?

      For me, I am using that 25-minute timer for specific tasks. I did clean out my seasoning cabinet over the weekend. That is often something I try to do and has been overdue. I also had Manny drop off 2 large trash bags of clothing and household items to Goodwill that I had been filling for several months.

      This week, I am working on going with the flow a bit more and offering myself grace. What about you?

      • #31900
        Colleen Steele
        Keymaster

        Honestly, what went right last week was successfully handling something that could have gone very wrong. I messed up and waited longer than I usually do to refill a few meds for Cullen. He still could have received them on time except the refills ran out and the mail order company said by the time they would get approval Cullen would have run out.

        So, I frantically called the doctors and after a lot of phone tag, got them filled at Walgreens instead.

        I wish I was accomplishing as much around the house as you are Jen. I’m impressed and envious.

        This week is a big week of important appointments and tests for Cullen, so I’ll be busy with that starting tomorrow then Thursday.

    • #31907
      Jen Cueva
      Keymaster

      WTG, @colleensteele! YOu did what I have done at times with Manny’s meds and once with one of mine. When the mail order cannot get them fast enough, I have them order a month at Kroger, and then the other three-month supply comes in.

      The only issue that I have had is that once my insurance did not want to pay. So, I then this a one-time courtesy fill it either did the 90 days supply. Did you have any issues once you filled it at Walgreens? Did you go ahead and get the 90 day supply?

      LOL, don’t be too impressed; I have not yet been back at that stuff around the house.

      I am sending extra love, hugs, spoons, and prayers this week for you and Cullen, both as you deal with these post-transplant appointments.

      Thanks for sharing. Does anyone else want to share what went right this week? It is early on, so you have time.

      • #31926
        Colleen Steele
        Keymaster

        @jen-c insurance would only allow a month supply from Walgreens. I hope to return to mail order and the 3 months supplies.

        • #31934
          Jen Cueva
          Keymaster

          Hi @colleensteele, that happened to us only once where they wanted to do a one-month fill. Because Kroger is a 90-day in-network pharmacy for us, they allow it there. But Walgreens was like you experienced. I’m grateful that h=you could full it in time and get it there temporarily. WTG!

          What’s going right in your world this week, my PHriends? It doesn’t have to be related to medical issues. Let’s hear about the positives.

    • #32056
      Jen Cueva
      Keymaster

      So, last week, I am happy to share one of my wins. I finally had the brain MRI that the post-COVID neurologist ordered.

      That and also that my husband, Manny’s cataract survey went well. His eye is healing. Now, only if I could get him to listen, LOL.

      I will have more wins to share the new week ahead. I look forward to hearing your wins. What went right for you last week or over the weekend?

      Oh yeah, Saturday was rainy and gloomy, calling for a long afternoon nap. I count that as another weekly win.

      Let’s hear your wins.

    • #32078
      Randolph Reynolds
      Participant

      I thought I’d jump into Colleen and Jen’s conversation.  This sub-forum reminds me of Weekly Hits and Misses put out by the Wall Street Journal.  So far this week I am grateful that under the circumstances I am maintaining my mobility and my thinking.  The latter is the real challenge.

      My latest INR came out well within range opposed to what it was two weeks ago.  3.8 was dangerously high and our Coagulation Clinic agreed we needed to make adjustments.  It had been going up each month.  This is important but blood thinners are fickle and the only suspect in that high reading was diarrhea that I dealt with for three days just before the last blood check.  Remodulin is part of the culprit.  So today was a hit.

      We have had two power outages in one week that forced me to be on my oxygen tanks.  This is a serious problem.  No power to my concentrator or cpap.  Usually these outages last about an hour but fortunately I was able to get a replacement tank so that I could go to get my INR checked.  I order my tanks a week at a time.  So that was a hit.

      Now I am set to go out every day this week and that is good.  Another hit.

      On a side note: I read Tracy’s continuing story.  One can only pray that she will be successful in her choice.

      • #32080
        Colleen Steele
        Keymaster

        @ripple76 life in general tends to be hit and miss but add illness to the journey and the scales are all too often off balance.

        For us just getting answers to a problem and finding a way to deal with a challenge is a big hit. What you shared is a good example of this.

        I actually felt some anxiety for you when I read about the power outages because I know how much of a big deal it is when you are on oxygen and cpap. We have a small travel generator that has come in handy a number of times. Do you have one?

        It sounds like you managed to hit those misses out of the park with some good old self-advocacy and planning. Thanks for sharing Randy!

    • #32089
      Jen Cueva
      Keymaster

      I love how you did this, @ripple76. It sounds like your hits were pretty good this week.

      The power outages, so not much and a concern, certainly. I have had those at times. Thankfully we have a small generator that will run my oxygen machine and a few other things when needed.

      As Colleen mentions, you did knock these hits out there, all with a bit of self-advocacy. Interestingly, the next column that I am working on is about this topic.

      Keep up the hits, and I hope no more power outages for you. Does this often happen with the threat there? Can you get a generator that may help run your oxygen, at least?

    • #32097
      Roxanne Giustini
      Participant

      I haven’t posted in a while but I had a “weekly win” yesterday. In June I had a week long Lung Transplant evaluation with Duke and was told at that time that I am early to consider a transplant. I had my follow up and more testing  yesterday and I am still good. They told me everything looks ok and some things even improved a little. So barring something changing in how I feel, I don’t need to follow up for 6 months! It feels so good to know that trying to live my healthiest lifestyle (while still enjoying life) is paying off! I truly feel that finding the right balance between being cognizant of your issues and limitations and living life to the fullest and having fun makes all the difference!

      • #32098
        Colleen Steele
        Keymaster

        @rgiustin this update made me so happy and it’s great to hear from you! Congratulations on such an excellent evaluation.

        Although you are not eligible for transplant right now – and I pray you won’t be for a LONG time, it is good that you went through the evaluation. If there comes a day when you need to be listed having all ready gone through that week long process of tests will save you and your team a lot of time.

        I know because that was my son’s experience. There would be things that need to be redone but if you keep up with the evaluations, there won’t be many.

        But again, I mean it when I say, congratulations on not needing to be listed! You are obviously doing an awesome job at taking care of yourself! Keep it up!

        • #32101
          Roxanne Giustini
          Participant

          Thanks so much! And yes that’s exactly why I did the evaluation now. My pulmonologist said the exact same thing, that it is much easier to get listed when you need it, if the team is already familiar with you. This is such a wonderful and supportive environment and I’m so grateful to be able to share everyone’s experiences!

        • #32104
          Jen Cueva
          Keymaster

          Wow, @rgiustin, that’s a huge win, certainly! I know those tests and things took a lot of time and energy, but now, as Colleen mentions, you have done those if needed later.

          But, the improvements are what is so exciting! I am glad that you did pop in and share this with us.

          I applaud you, and thanks for sharing the reminder to finding that balance with staying mindful of our limitations.

          Keep it up, and feel free to pop in more often and share what you have going on.

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