Viewing 3 reply threads
  • Author
    Posts
    • #11067
      Kathleen Sheffer
      Participant

      There are four types of lung transplants, outlined in this article. Understanding the different options is an important step toward being informed about the decision to be listed for a transplant. Each comes with its own risks and benefits.

    • #11166
      April LeMaire
      Participant

      It looks like I am facing the real possibility of a double lung transplant. Luckily we started the discussion a year ago so I have had time to digest it. I don’t know if the point of those education meeting was to scare the snot out of me, but they certainly succeeded in doing so.
      I really appreciated Kathleen’s column on the Things I wish I Knew Before Transplant. I like to know what I’m getting into.

      I’m most scared of the statistics and the whole randomness of it all. Winning the lung lottery and keeping infections at bay.

      • #11177
        Kathleen Sheffer
        Participant

        Oh, I am almost certain the sole purpose of the transplant education meetings is to, as you say, scare the snot out of you. My parents were able to convince a social worker to let them watch a video without me when I was nine years old. They said that video was terrifying! Luckily it had been phased out by the time I went through education again at 22. I doodled through the entire training because it was so scary and I needed a distraction (maybe that’s why after transplant I had so many “you didn’t tell me this!” moments).

        The statistics are definitely scary too. I am more familiar with the lung transplant patient population now so I try to remember that the statistics are based on a diverse population that includes a large percentage of patients with cystic fibrosis, which affects multiple organ systems and can cause complications after transplant. Most PHers no longer have PH after a transplant, which is great! Just remember you are an outlier already, and can have rare success just like you have a rare disease. Which is a long way of saying “psssst – ignore the statistics.”

    • #11217
      Kaye Norlin
      Participant

      Hi April,
      I received a bi-lateral transplant in January 2018. I think it was just in time. Like you, I was doing pretty well, working until I retired in December 2017 and my doctors always said that they didn’t understand how I could do all the things I do given the severity of my PAH. When I was finally diagnosed 7 years ago, they were surprised I wasn’t on death’s door. I did well until October ’16 and, after recovering, we started talking about transplants. It was a difficult and terrifying decision and the education classes didn’t help alleviate any fears. I wanted to back out many times- even on the way to OR; but I am now happy that I did. I know in my mind, body, and soul that it was my only chance at a longer future. The statistics are scary but they are scarier for PH (to me) since my PH has been severe for seven years and “end stage” (don’t you love that phrase) for the year prior to transplant, even though I was still working 2 jobs until retirement. As Kathleen pointed out, those statistics cover everyone with lung transplants. Personally, I plan to be one of those people who is at the 20-year mark, after spending the last year making sure my family knew where everything was and things were well-organized just in case.

      If you can find a transplant support group in your area, join now- if it is a good fit for you. I have been attending one in my small town for a year and they are great. They don’t give you unsolicited advice care about each other; it does help to hear their stories and see how they are doing and share frustrations.

      My biggest frustration post transplant is going to be no gardening and no horse barns, but we shall see what happens in a year or so. I am going back to yoga in a few weeks and will start teaching yoga again as soon as they allow me to do so; and my old company wants to hire me to work from home for a while to help them out so I have things to do. My husband and I are planning on going back to Italy in 2019 or 2020 which is a miracle since I couldn’t imagine doing that with oxygen and a medication pump. Who knows, I may even take up tap-dancing again! I stink at it but I love it! In the meantime, I love not having tubes attached to my body.

      Good luck with whatever decision you make; it will be the right one for you.

    • #11460
      Nathan Norman
      Participant

      Hi Kaye

      Good to hear your story my wife Kim has a very similar one to yourself and she suddenly got very ill December 2016 that resulted in a 18 day icu stay after 12 years of relative PAH stability. She is now on triple therapy and has been working very hard to be strong enough to make the transplant list we got news she has exceeded the minimum requirement but because she is stable they are giving her another 3 months to meet optimal strength requirements. We are so glad to hear positive stories she is very scared about the future so I have been put in charge of the research but i cant express how much it helps to learn about other peoples journeys and to know it is possible to come out the other side.
      Cheers
      From sunny Australia

Viewing 3 reply threads
  • You must be logged in to reply to this topic.

©2021 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account