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Emotional well being

Just because you receive a transplant does not mean your life will be a bed of roses. And to all the single people who do it alone, myself included, you must have a support system. A support system is anyone who can listen, drive you places, walk your dog, etc.My moods can go up and down in part to the prednisone and because that's my emotional make up. It is rare that you see the emotional side of a transplant discussed. But managing the after effects of a transplant can be difficult. Working with your healthcare team, dealing with meds, appts, pain, fatigue, moodiness, weight gain, insurance issues is stressful. I'v been doing this for 42 years and I'm still learning. You have to be an advocate for yourself. You have to know your choices and you have to like yourself kidney disease and all. You have to ask questions at appts.Your mood will fluctuate whether you acknowledge it or not. When you feel down, you have to know how to take care of yourself and not beat yourself up. Maybe you call a friend, do art, write, walk, run, etc. Don't sit in the corner and turn into a victim. I know, I've felt like crap and there is nothing worse then feeling bad, emotionally and/or physically. Sometimes your social worker can help you. Don't be afraid to discuss your mood issues with your MD or social worker. Get help if it goes on for months at a time. Know the symptoms of depression. If people tell you, "You should be happy you got a transplant," you can be grateful, but maybe your mood is on the sad side. You don't have to live in a sad state.Anyway, hope it's a good day, please be kind to yourself and please contact me if you have comments or questions.VictoriaVictoria @arttherapyla.com

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Replies

  • Victoria,

    As a coordinator I have to tell you that you are definitely not alone. There are a lot of side effects, especially from prednisone, that can be really intense. Even if you come off of prednisone, there is still a lot to deal with. You are still a human being (and one who has been through a lot more than most), and it seems that you have a pretty good sense of self-awareness to understand your own process. I wish the best for you, and believe that the advice to continue to advocate for yourself is extremely important. Thank you for your post.

    Be kind to yourself always!

    Tara

     

    • Tara...thank u...I've been on Prednisone for 40+ years, though only 5mg now every other day. I'm working on self compassion these days as I encourage that with my psychotherapy clients too.
      Thank u again for your encouragement!
  • I think this is really important Victoria. Sometimes I think we can forget that these 'Gifts of Life' are exactly that - and life is full of ups and downs, moves sideways and all kinds of bumps...
    I'm actually in the middle of an art project that is trying to explore these other possible narratives for transplantation - not to dismiss the super positive, "I'm so grateful" stuff, but rather open up the space for other ways of thinking alongside this.
    There's information about the project here: https://givingintogift.org/not-just-the-incredibles/

    If you - or anyone else reading this - would be up for having a conversation over Skype or Facetime (or if you're in the UK, I may be able to come to you and buy you a cuppa and a bit of cake) - then please do get in touch: info@givingintogift.org.

    And thank you again for sharing this Victoria. It's important.

    Not Just the Incredibles
    In 2016, we held workshops for transplant recipients and lab scientists to explore the issues around the project and are now – as of April 2017 – loo…
    • Hi Tim..thanks for your reply. I will CHK out the FB page and see what your group is all about. Pls email any other info at victoria@arttherapyla.com.
      Not Just the Incredibles
      In 2016, we held workshops for transplant recipients and lab scientists to explore the issues around the project and are now – as of April 2017 – loo…
  • Hi Victoria, very honest and great post. You had a kidney transplant. So far being only being almost 9 mos. in , I haven't had mood swing or depression. In fact my moods seem to be better than before. I don't seem to get caught up in victim roles, emotionally I'm passed the sadness of losing my husband. I paint, work , exercise, socialize, study astrophysics and watch my diet. I am adding traveling when the year is up August 9,2017. I did have a near death experience but I'm assuming we all did. I do know I work through prayer and meditation to let go of my life as I knew it and open my heart to the Divine God. There came a lot of changes. I am also so grateful to my donor for gifting me such a healthy liver. I also have a strong support group, and do believe without this, my moods may be different.<br/>
    Yes I have a lot of challenges, but I'm taking them on so far with confidence all will turn out and it has. Have changed my diet but feel more alive as I'm eating healthier. My concentration has sky rocketed .... Happy for that. Just Grateful and loving life. I do reflect but painting is my best friend to express it. I'm single as well. So let's see what the next year brings.
    • Hi Janice..thank u for writing...the transplant road can be rocky, but I find joy in moments that are sometimes small and remembering to stay in the here and now.
  • Wonderful post!  I guess we are all still human after all, in spite of wishes from others to see us thrive!  Thank you for posting.

  • I needed this..... that's like the first thing people say u should be happy. Currently I'm a little sad and overwhelmed and many people don't get it.
    • I'm glad my words spoke to you Latinos...Yes, when we receive a transplant, which by the way is a treatment many feel we should be happy all the time....Is a person without any health issues "Happy" all the time? That's crazy. We still have the challenges of life. I'm grateful that I don't have to undergo weeklt dialysis treatments.
      Peace
  • Victoria, just reading this and thanks for your moment of honesty. It ministers to people like me who find joy and gratitude at times and a week later hide my tears as I look down three long tables of wonderful food, only to have to eat meat and mac-n-cheese, my very last choice for sure. It's not the food, it's the constant sifting of so many life options and really having only two at the time. Many ask, mam, what would you like? Inside I say, "No, what you mean is, "What CAN I have or do?" Then I feel guilty because should be happy since I am alive. Once in awhile, I feel sorry for myself if I am really tired and then I have to snap myself out of it. This does not change for me. I rarely forget, my life is not my own anymore. Difficult for a, once free spirit. Again, thanks
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