General — TransplantLyfe

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Alisha's Daily Journal

AliEm14Transplant Patient
January 18, 2021 in General

I was inspired by Karin to make my own daily journal, insights I will jot down here and share with all of you!

Aside from being a transplant patient, I'm also a trauma informed yoga teacher, a grief worker, a writer and am studying to be a wholeness and wellness coach. I lost my son 3 years ago due to complications with my illness (why i ended up needing a liver transplant) and ever since then I've really gotten into trauma and grief and the effects they have on the physical body.

So as I write here, I really want to chronicle the impact of transplant trauma, medical trauma, grief and loss and the stories we all hold in our bodies surrounding that. I'd love it if you all would also contribute to this conversation. And I'm excited to share my passion with all of you

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1 - 30 of 152 Replies

  • JimGleason_TRIOTransplant Patient

    What a great way to keep your life moving forward with gratitude especially after that terrible loss.

    January 18, 2021
  • AliEm14Transplant Patient

    Daily Journal update: Today I had physio. I'm slowly beginning to regain mobility and strength post transplant, but right now it's still a lot of pain and struggling. So much of my body is tied up in knots, and I was thinking about how our emotional experiences can have such an impact on our physical bodies. In my medical narratives course yesterday we were reading an essay written by a doctor. She said that on average a doctor will allow a patient to speak for 11 seconds before interrupting, how many important details of a person's story are missed when this approach of only focusing on the present symptoms and not the entire person are viewed. She said that instead she asks patients "tell me what you think I need to know" and then listens to their story. This, she said, is the best diagnostic tool. And I find I would agree. I've spent so much time in rooms with doctors, and I tend to just run through my diagnosis' and surgical history. But I realized that doesn't cover the whole extent of things. The physical pain in my body currently is related to my surgery, yes, but it's also related to the trauma I experienced having a liver transplant, and the grief I carry with me for my donor. I have things happening in my current body you wouldn't understand or connect the dots between unless I told you I also lost my son.

    Our bodies are great storytellers. And I'm curious - what stories do you carry in your body? Instead of going through your medical list, how would you answer the question if your doctor asked you what they needed to know?

    January 19, 2021
  • lescp3Care Partner

    This is SUCH a great question!!! Body and mind are SO connected.

    January 20, 2021
  • AliEm14Transplant Patient

    yes! this is what I'm finding. It's tough sometimes since I have a background in alternative healing modalities and am all about the intuitive connections, and my transplant team tends to be more science logic focused. We need that, but I think we need both in order to heal

    January 20, 2021
  • AliEm14Transplant Patient

    Photographing grief.

    I'm currently reading a book about grief, and the importance of fully grieving and integrating that grief into our daily lives. One thing I've really felt strongly surrounding this whole transplant process is grief. I've adopted new practices to help me work through some of that grief (some of which I'll share about here in the coming days and weeks) and one of those new things I've picked up is photography. I've always been a story teller, but this is the first time I will be using a visual medium to convey that story. I really want to focus on visually documenting my journey, the grief and the process of coming back to life after a transplant. And I'm curious, how are you telling your grief story? Are there any new hobbies or activities you've picked up since your transplant that have helped you cope?

    January 20, 2021
  • AliEm14Transplant Patient

    Sometimes I feel like I'm just talking to myself on this message thread. Feel free to leave comments and let me know whats resonating for you - I know i can't be the only one!

    Today was my lab day. It was an important day, since it would determine whether I need to be admitted for my 6 month follow up or if we are able to work with my local hospital and do it outpatient and remotely. They had trouble finding a vein, as always, and like usual I got the most incompetent staff. I got home and immediately just felt a heaviness fall over me. I ended up cancelling all my plans for the day, turning off my phone and just napping and reading and doing nothing. It's 3:00pm here and I'm still in my pajamas. And I felt guilty about that. Sometimes I feel like I'm wasting this new liver by using my time to rest instead of being out there living life. But I'm realizing too that medical life is heavy. Blood draw days are triggering for me, and that's ok. I need to give myself time to rest. And now that I know I just won't schedule anything for Thursdays anymore

    January 21, 2021
  • JimGleason_TRIOTransplant Patient

    Adjusting to our new 'normal' is a key part of our long term growing wisdom. Sounds like you just learned another adjustment in that direction which may change again over time, replaced by some others. Good for you!

    January 22, 2021
  • AliEm14Transplant Patient

    I watched a documentary last night on the tainted blood scandal that happened here in Canada a while back, and at the end a man who was the father of one of the victims was talking about the medical system, and the blood system. We've come so far since then, he said, but we need to do better. Systems are made up of people, people we count on to do the right thing, but people fail. We're human. And there needs to be more in place to hold these people, and systems, accountable. And I've been thinking about that ever since. How grateful I am for the medical system, and at the same time all the ways I feel like it failed me. How I can hold both at the same time. How healing isn't an either/or but a both/and.

    How have you found this in your own life? Where are you holding a both/and?

    January 22, 2021
  • AliEm14Transplant Patient

    I took the weekend off technology and it was so good for my soul. I've been finding myself so wound up from Covid related news, and just needed a reprieve. I've started up photography as a new hobby, so I took some pictures. I cut up and dried some orange slices to make some new garlands for our home. I found out I tore my rotator cuff following my arterial surgery last month (and kept using my arm because I'm apparently not that bright and just figured I was stiff and needed to stretch it out) and my labs came back good enough that if they stay that way for another week my team will be able to cancel my upcoming liver biopsy.

    How was your weekend?

    January 25, 2021
  • KarinTransplant Patient

    @AliEm14 dont feel alone - I was off the forum for the weekend - needed to regroup after long week and just wanted to live in the now and be - but back now and I wont take a weekend off again - it is better for me to connect and not feel so alone - I am w my toddler a lot and i do need connections w adults!! I dont do yoga - although many have advised me to (@lescp3 !!). Will try - for me physical activity does exhaust my spinning mind and I feel better

    January 25, 2021
  • JimGleason_TRIOTransplant Patient

    Thankfully, the large majority of my medical care has been on the "thankful for the life saving care" side, but, being a human based process, your insight of the human frailty in carrying out what can be a very complex process, sometimes slips to that other side. In all situations, my philosophy is that I am the only one 'on duty' 24 hours every day while medical staff work on shifts with many other patients and events in their busy lives. If I am in a condition where I can't advocate for myself, I will have family to be there for me (tough in these COVID days where patients are isolated when in the hospital, but outside of that - but even then, technology can allow that supporter to be in the room virtually as needed). Either way, we - med staff, self and family - are a team, and if able, I am the captain of that team (many personal stories to support that philosophy that prevented mistakes). In summary, yes, both sides are our reality, and we should do all we can to insure that balance is very heavily weighted on the positive side. Stay alert and safe, or as that saying goes, 'live long and prosper'.

    Here's my kidney cancer surgery stay back in 2012, a very challenging time for sure, but here to share the success today.


    January 25, 2021
  • TServoldTransplant Patient

    I love photography, and was considering starting a project 365 or project 52 this year around my life on the transplant list, and with T1D. It seems to be what consumes my life the most. How are you sharing your photos? Will you print a yearbook at the end of the year, or use a social media platform? I chickened out the first week of January, but... it's still on my mind so I might start something...

    January 25, 2021
  • englishgirlabroadTransplant Patient

    Please don't think people aren't reading - sometimes we won't respond because due to meds, or the transplant we just can't find the right words, and especially for someone like me who can often misread someone, or worse, convey the wrong thing I writing which is taken the wrong way I often hold back. But - here I will be brave and say this. One of the best ways I have found to heal is to write. To speak into a recorder on the days I am too tired or too confused to be able to spell. I am determined to share my story, of the way I was diagnosed (poorly by a doctor with no grief counselling) and how I reacted with the world, because I want people to know that what happens to us can touch anyone. The book I am working on currently is for older children, teenagers to adults, but I started with children's books because I knew that was the key demographic to 'catch' before they are old enough to fear death or what a transplant might be. No one ever tells you in this country how painful a transplant will be. The physical operation that is. But more than that the weight we carry one day knowing we will be relying on the generosity of a stranger. After that? Many of us will live with survivors guilt - for which I strongly recommend a Gratitude Journal - mines got A 4 pages - top - 5 things I am Grateful For - next 4 I am Statements or Affirmations - 4 Ways I will care /look after myself today and finally - 4 Wins from yesterday - I've found that super helpful and then meditation. I think you have taken a courageous step with this journal, and if you want more interaction then feel free to join my UK support group on Facebook and there I am sure you will get comments - but Facebook is using us all - if you aren't paying for it, it's the product - so here is better. If you ever want to talk or follow my journey I am @thelulumagic on instagram and twitter - you aren't alone and I want to thank you for being so brave as to write anything here at all xxx

    January 25, 2021
  • KarinTransplant Patient

    @TServold hie are you this morning?

    January 26, 2021
  • lescp3Care Partner

    I am determined to get you to try a yoga class @Karin! No harm in trying :)

    January 26, 2021
  • lescp3Care Partner

    GREAT ideas for how to organize your approach to writing / journaling!!!! Thank you for sharing (and you shared beautifully...no misinterpretation :)

    January 26, 2021
  • TServoldTransplant Patient

    Thanks for asking @Karin, I am good this morning! Snowing here in CO and that makes me a little less motivated, since I prefer sunshine and 70 degree days! I got up, did my morning yoga and got on with my day, though! Hope you are well today, too!

    January 26, 2021
  • AliEm14Transplant Patient

    Yes! I love yoga because I find the intentional reminder to listen to my body, and the ability to take it as aggressive or as soft as I need it to be, has been really helpful. Before my surgery I was a yoga teacher, and I hope to get back to that when I've recovered a little bit more. I'm doing really well until it comes to anything with balance or core strength, and then it's basically just the art of falling over

    January 26, 2021
  • AliEm14Transplant Patient

    I love how you refer to it as being the only one on duty 24/7. Yes other people can be there for us but we're ultimately the ones who live with this, in this body, all the time. Knowing that has really inspired me to become a better advocate for myself. I like how Kris Carr says it, that she's CEO of save my ass corporation. Ultimately she's the one in charge, she makes the decisions. And I've started using that as a way to think about my own journey too. I'm the boss, everyone and everything around me works for me, and I am ultimately in charge of my health and well being. So glad you've been doing well since your surgery

    January 26, 2021
  • AliEm14Transplant Patient

    Thank you for replying - I hear your voice. I love that you've taken to writing as an outlet. I'm a writer myself, currently working on a memoir about my transplant experiences. Right after my surgery, when I couldn't yet write physically, I would also record voice notes in my phone, or voice to text little messages. Some of them make no sense to me now, but it's also really interesting to look back on my thoughts in that moment. I'd love to read what you've been working on, whenever you're ready to share

    January 26, 2021
  • AliEm14Transplant Patient

    I also wanted to speak to this survivor's guilt idea. Because it is something that has been so real for me. No one really tells you about it before transplant. You're supposed to be grateful to be alive, end of story. Not only have I found guilt in surviving and getting a transplant when so many others either died waiting or are still waiting, but I've felt a huge amount of grief in knowing I have the liver of someone who died, and am now carrying a part of their story. I go to therapy regularly to help with this, and regularly engage in different forms of grief work. I love that a gratitude journal is helpful for you - I personally find a lot of benefit in the morning pages (the practice was established by Julia Cameron. If you don't know it, I highly recommend looking it up)

    January 26, 2021
  • AliEm14Transplant Patient

    The things I do share, I'm sharing over on my instagram @alisha.emerald

    A lot of the pictures, especially the more raw ones, I've been saving in a file on my phone. I really love this way of capturing my journey visually, even if it's only for me. It's not super structured right now, but I love the idea of doing a self portrait every week of the year or something along those lines. If you decide to start documenting your journey that way, let me know and I'd love to follow along

    January 26, 2021
  • AliEm14Transplant Patient

    Last night I did a breathwork session with Brian Ellis. He's a rather unconventional breathwork teacher, but was recommended to me by another trauma healing teacher I follow so I decided to give it a shot.

    One of the things he said really impacted me, and I thought I'd share. He said no one would volunteer to get on a rollercoaster that goes in a straight line at 2 miles an hour. That's not exciting. When we go on a rollercoaster, we want the thrill. We know that when we get on a rollercoaster, it's not going to be this straight line. Life is like that. It doesn't go in a straight line, and we know this. So why, he asked, are we arguing with our reality? Why do we spend so much time arguing with what is, instead of leaning into the ride? We wanted to be here (as a transplant recipient I literally fought tooth and nail to be here and still be alive). The difference between someone on a rollercoaster who is all about the thrill and the adrenaline and excitement and someone who was unwillingly thrown on a rollercoaster and is terrified is all about our willingness to be here. When we lean in and embrace it, when we stop fighting and arguing with our reality and what is, that's where we can find the sweet spot. And that really hit me. If you've been here a while maybe you've seen my posts about how I feel like I should be farther along or more recovered than I am. And it just hit me like why? If I was meant to be farther along on this journey, then I would be. But I'm here, right now, for a reason. And I can either fight against that and argue with reality and make myself miserable for being where I am, or I can lean in and see what this current season has to teach me.

    January 26, 2021
  • englishgirlabroadTransplant Patient

    Ah yes! The Morning Pages! A very interesting idea - but as a writer myself I am always trying to write things anyway so making time for that...? Maybe one day, but for now it doesn't feel quite right, where as a Gratitude Journal is more punchy and to the point. One question I ask myself is, "Do transplant patients keep the pain and trauma of an organ transplant a secret so as not to scare off other recipients?" I know that when I first saw what they were going to do to me in a diagram form in the hand out booklet I sobbed uncontrollably as I was so terrified. But was it therefore worse to wake up and feel such excruciating pain? To have hallucinations no-one had warned you about and fear I had gone mad? What is better? To know? Or not to know? I'm beginning to conclude I would have liked the option - but would I be here now if I had known more. Would you?

    January 26, 2021
  • KarinTransplant Patient
  • KarinTransplant Patient

    @AliEm14 i am in such agreement that no one really cares about us, but us - and no one knows better about us, than we do!! I guess I could be wrong about the former, but you know what I mean - it is our responsibility to be boss of our bodies :-), and maybe the better way to phrase it is that no one can make us do what they want or what may be best for us, but us

    January 27, 2021
  • JimGleason_TRIOTransplant Patient

    Great question, whether to share scary transplant experiences with others. My belief is that each patient has their own unique experience and wouldn't want to create unnecessary anxiety by sharing the (hopefully) less frequent negative ones, letting that fellow patient deal with whatever their journey involves at the time with the team support that knows how to deal with that issue. I have a hobby of reviewing books about transplant and often caution readers of my book reviews that this author's story is unique to hem and not the average experience, noting that one only writes a book if their story is unique with the average patient's story not being worthy of writing about. Now I fully appreciate the other side of this, that giving a new patient the warnings of possible negative events during this very complex process might make them prepared for what may come, but that MAY is key. My personal belief (as I've said) is that the majority will NOT have such experiences, so why put them through the anxiety of something that hopefully will not happen. They already have enough on their minds to worry about without adding to that.

    January 27, 2021
  • JimGleason_TRIOTransplant Patient

    I like your rephrased version better, maintaining the idea that while many really do care for us, and are acting in what they feel is our best interest, ultimately we need to maintain responsibility for our lives, whatever that may mean in the particular situation. Keep in mind too, that there are times, especially under the influence of strong pain meds (as one example) where 'we should not be driving' in the sense of having clear thinking in that moment or situation. I had an emergency operation that found me hospitalized for 9 days. Once back home, my wife (caregiver) and I compared notes and only then did I realize that my 'reality' while under strong pain relief meds as VERY different form what the rest of the world around me could testify as being the real reality, not mine. More recently my wife expressed concern for some important decision I had made without consulting her, not our norm at all. We were both surprised as I related the discussions we had been through at the time supporting the reality of our having had those discussion. She was recovering form surgery earlier that week, seemed totally coherent at the time, and had no recollection of any such decision making agreements. Lesson learned, the advice often given of not making any decisions shortly after surgeries was made home to us with this revelation. Yes, we need to be the captain of our team, but there are times when others have to oversee the bigger picture of our situation/condition.

    January 27, 2021
  • AliEm14Transplant Patient

    Yes, definitely find what works for you! I used to be more of a bullet note journaling person, and that has changed and evolved over the years.

    That's a great question. One of the things I want to work on is bringing more awareness to the grief and trauma side of transplants, because you're so right, no one talks about it. Personally if I had known before hand, I don't think I would have done it. I saw the diagrams and doctors told me beforehand, and none of that phased me. But after the surgery, when I realized how much pain I was in, when I was in the ICU experiencing the worst hallucinations, when I was actually awake enough to comprehend how bad things were, that's when I think if I had known that I might have not gone through with it. I didn't think I could go through that much pain, or that my life was worth fighting for to that extent. I don't believe that now, and I'm praying I don't need another transplant in the future but if I did I think I would have more confidence to go through it. I don't think the secret needs to be that it is incredibly painful in all aspects and really tests your will, but I do think people need to know how strong they are. They can survive this thing that feels impossible. The resilience and strength of the human body and mind needs to be at the forefront. Like yes it is hard as hell but you can do hard things.

    January 27, 2021
  • AliEm14Transplant Patient

    So true! I try to keep an open line of communication with my support people so that in situations like this they are informed of what I want and what my wishes are, and can act accordingly. When I'm under the influence of pain meds my decision making should not be trusted. And I think that's part of managing your own care and creating your care team is finding those people who will support you and keep your best interest at heart, even when you can't be "on" and man the ship

    January 27, 2021
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