Heart — TransplantLyfe


Ambassador of the Week-Denise

AnnMarieCare Partner
June 22, 2022 in Heart

For those going through a transplant, @Denise_R shares this advice: “I always tell our new patients to write everything down. To ask all of the questions. There just aren't any dumb questions. Ask the same question as many times as you need to to understand the answer. Reach out to others for support and assistance. My process is to set a time and cry and scream all I need to, but when the timer goes off, I must stop and do the next right thing that will get me closer to recovery.” #TransplantLyfe #LyfebulbAmbassador #AmbassadoroftheWeek

1 - 8 of 8 Replies

  • Denise_RTransplant Patient

    Thank you so much! Love being a part of this community and getting to help other transplant patients tangibly with our nonprofit!

    June 22, 2022
  • Sdey0522Transplant Patient

    Good advice 4sure, @Denise_R 👍 As a patient/candidate/transplant recipient - not only is it important to write stuff down (questions/concerns/issues/symptoms/reactions/side-effects & what-not, it also helps (if possible), to keep your trusted care-partner/giver in the loop (updated). 🧠 Fog is real! 😊

    June 23, 2022
  • Denise_RTransplant Patient

    Amen Sam! Both immediately after transplant and due to Tacro, brain fog can be an ongoing issue.

    June 23, 2022
  • KarinExpert
    Transplant Patient

    Tell me more about this brain fog - how does it manifest?

    June 24, 2022
  • Denise_RTransplant Patient

    Hi @Karin! Hope you're welll!

    For most, brain fog immediately post transplant is a real issue. Your body is getting used to new meds, you're recovering from a major surgery and all of that combined gives some (most maybe) a feeling of thinking through a fog. Later, many experience, largely because of Tacro, a feeling of forgetting small things, searching for the right word in the middle of a sentence, small, but annoying things that amount to brain fog. I know I've experienced searching for the word that is right on the tip of my tongue many times. Anyone else?

    June 24, 2022
  • Sdey0522Transplant Patient

    Indeed, @Denise_R !

    @Karin , when I was very ill for several years prior to my heart transplant, I often had moments of intense fogginess/fuzziness. Memory lapses were common, I couldn't really think through things and had trouble making/taking simple decisions too.

    While waiting for a transplant, in the hospital for several months, due to added meds, the brain fog was intense!

    Post Transplant, more of the same, sometimes with way worse consequences. Remembering instructions from doctors/TX team, recounting symptoms/side-effects to report, remembering simple conversations with loved ones, names, dates, passwords - everything was impacted!!

    Luckily, in my case, the fog did eventually lift and I was once again 'capable' of accomplishing tasks I was supposed to get done. Memory improved - I can once again remember my account numbers, credit card numbers & other things with ease.

    Sadly, in some situations, it does take longer for things to improve. If possible, we should keep challenging our 🧠 - #nevergiveup !!

    June 24, 2022
  • montrealTransplant Patient

    Perfect example of brain fog, I've even had problems just saying the word-getting it out off my mouth even though it's there. Best to laugh says I

    November 13, 2022
  • ShelbycreatesExpert
    Transplant Patient

    @montreal I had the exact same experience! I was pointing at the fridge, trying to get the word out, knowing that I knew it, but just not being able to say it. Talk about frustrating!! That's mostly how my brain fog presented. I do feel like it's gotten better since I switched to Envarsus from Tacro.

    November 14, 2022
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