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    • #23362
      Colleen Steele
      Keymaster

      Have you canceled plans that you were looking forward to because you weren’t feeling well? Were you told recently that a treatment you were hoping would make a difference for you, isn’t? Are you not eligible for transplant and was hoping to be?

      Have you experienced any of these disappointing moments or others and if so, how did you deal with it? What helps you through the emotional struggle of things not turning out the way you had hoped they would? Share your coping skills with us.

    • #23370
      Carol Volckmann
      Participant

      Really good topic Colleen, I guess all of us has had to cope with disappointments, sometimes devastating ones. I cannot imagine what it would be like if I were in line for a transplant and was turned down.
      The biggest disappointment I that keeps cropping up is being told I am an excellent candidate for the implantable pump for Remodulin – that was 8 years ago and I am still waiting for the FDA to approve it. Every time it gets close and I am ready to go, the FDA steps in again to raise another issue. All the people in the trails have not had any issues and it has been a complete game changer for them. The implantable pump ny Medtronic has been used in Europe, Scandinavia. even Russia! I have talked with the FDA, Medtronic and United Therapudics. I just finished a letter to the lead doctor at the FDA in hopes he/they will put this implantabe pump in a priority file. But now with this virus I have little hope. So – how do I cope being so close so many times? I just keep trying to reach out to as many who can make a difference. I use to say that you only fail if you stop trying. Of course that is not always true. Many times I need to know okay it is time to let go and move on to control what I am able to and refocus my energies toward doing that then find things that are fun and that will make me laugh!!

    • #23669
      Daniel
      Participant

      It seems to me that in any difficult moments of life that you can’t influence, you have to smile and make stupid jokes. It helps me no matter how bad it is, I always smile.

      Maybe that’s why the happiest people who give laughter and jokes inside suffer a lot.

    • #23685
      Brittany Foster
      Keymaster

      Hi @daniel-j you definitely are right. I really like to give laughter and love to others when I am feeling down. It brings me joy because I know that there is suffering and hurt in everyone. Sometimes the ones who are suffering the most really do the most encouraging because they know what it’s like to hurt. I know a lot of comedians have talked openly about depression and really struggling with their emotions. Jim Carey recently opened up more about that and he has always been someone to make me laugh in his movies! I am glad he is talking about it though and being open and honest because other people can relate. It just makes him more real!

    • #23690
      Colleen Steele
      Keymaster

      @cdvol3gmail-com I have been keeping my eyes open for updates about the implantable pump for Remodulin. My son was on Flolan but if the Remodulin implant had become available when he had PH we would have been inquiring about it for certain. Having seen my son through 5 years of IV therapy I can understand how disappointed you are feeling with the on-going delays. I’m so sorry and I really hope in the near future you will be given the chance to try this new form of treatment. Please keep us updated on this.

      As you know, my son received a transplant but not before experiencing a dry run. I wrote about it in my column, “My Son’s Transplant Experience Taught Me That Practice Makes Perfect”. To believe it or not, there were some positives that came out of the experience.

    • #23692
      Colleen Steele
      Keymaster

      @daniel-j very true! Laughter is a great way to get through difficult situations but not if we use it to cover up how we are really feeling. I’ve always tried to encourage my son to smile, make a joke or two, but then tell me how he is really doing.

    • #23710
      Brittany Foster
      Keymaster

      @colleensteele I use humor a lot to hide my true feelings and emotions when they seem to hard to process. I make jokes about things that shouldn’t be made into jokes or my humor gets pretty dark and awkward. I catch myself being like this though. I even sometimes laugh weirdly or laugh at something that I shouldn’t when it comes to my health. It’s definitely used as a defense mechanism too so we just need to be mindful of that and recognize the difference.

    • #23733
      Colleen Steele
      Keymaster

      @brittany-foster same here…sometimes I laugh weird or at things that I shouldn’t. A week after transplant Cullen went into a long and intense seizure. I’ve seen him through a lot but that scared me worse than anything. It looked like every doctor and nurse in the hospital was at his bedside while it was happening. When the seizure finally stopped I walked out into the hallway to update to of my close PH moms/friends and realized that the hallways was also lined with more doctors and nurses. I said to my friends, “OMG, who is looking after all the other patients because everyone appears to be here?!” I know it was pure nerves but I started laughing and my friends started laughing and people looked at us like we lost our minds. What the hallway staff didn’t see was me crying my eyes out at my son’s bedside. Taking a moment to laugh helped me. I can’t explain how…it just did. Then I went back in to my son’s room and dealt with the on-going worry.

      BTW…I’ve been enjoying your FB videos! They have had me smiling and laughing so thank you!

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