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General

Transplant Mental Health

AliEm14Expert
Transplant Patient
August 19, 2022 in General

It's no secret that having a transplant (or any kind of chronic, serious health condition) is traumatic. It's also on the warning labels for pretty much every anti-rejection medication we take that it can cause serious mental health effects, or worsen already present conditions like anxiety and depression.

I'm not secretive about my own mental health conditions, or the fact that I work hard at my mental health (can we take a moment to appreciate all the therapists who work with post transplant mental health?) and sometimes it feels like a catch 22. I can't get off of immunosuppressive medications, which worsen my mental state, which I then take more medication for which creates more side effects and worsens my health in other ways, and the cycle continues.

If mental health is no less valid than physical health, and the link between the two is undeniable, I am left wondering why there isn't more of an emphasis put on mental health and trauma informed care in the transplant space? Everyone I've talked to has really had to create their own integrative care plan.

What are your thoughts on this? How have you noticed your mental health being effected, what have you done to address this and was seeking mental health support something that was ever mentioned to you by your transplant team? How can we bridge the gap between physical and mental health in the transplant space?

1 - 23 of 23 Replies

  • ShelbycreatesExpert
    Transplant Patient

    This is SUCH a good topic! I felt like when I was first diagnosed with kidney failure, I went to traditional medicine and was told that there was basically no hope for me and that I should just get used to my new normal. I went to holistic practices, which promised the world, but still left me empty-handed and without the results I wanted to see. I'm very pro-therapy, but I had a hard time finding professionals that could help me. Most were clueless about kidney disease, and one was fascinated with my religion and only wanted to talk about that (although I have no problem with my religion).

    My transplant center did have a transplant therapist and it was amazing to finally go to someone who was intimately familiar with transplant and kidney disease patients. I went for a few months and had some check-ins before we moved away a year and a half ago.

    Honestly, I've found most of my healing through supportive online communities, especially ones that meet on Zoom, self-care communities, and life coaching communities. I became a life coach after being a speech therapist for almost my whole adult life. In graduate school, I studied emotional intelligence, but still felt so disconnected from my own body. It wasn't until life coaching that I learned how to tune into my body and feel my emotions. We didn't really talk about how to tactically do that in my therapy, but life coaches were teaching me this skill.

    Feeling like I'm going to be in pain forever and that the emotion will never end is what kept me in a bad mental space. It's not until I learned how to allow emotions to flow through my body, without getting stuck, that I feel like I started to heal emotionally, physically, and mentally.

    I think that with a balanced approach from science and holistic methods, that mental health can be drastically improved. So much of it was learning how to repattern how I respond to fear, and even recognize I'm feeling fear in the first place.

    I hope that we keep this conversation going. It's so important. Physical and mental healing are inextricably intertwined.

    August 19, 2022
  • StaceywrightTransplant Patient

    An excellent discussion. I’ve always wondered how others handle some of the stresses and situations. My care givers at Mayo always ask how I’m feeling and ask if I have the support I need. I’m pre- transplant, but am really starting to feel crappy. My labs today put my eGFR at 17. I’ve always been someone who buries strong emotions or just barrels through with “life as normal”. Currently, I’m having a rough time expressing to the 3 people who’ve stepped up to test for a kidney donation how much their bravery and generosity mean to me. It’s so humbling. My second biggest emotion is confusion and trepidation about how I’m supposed to be feeling physically and worry about complications popping up. It certainly would be nice to have more emotional support. It’s easier for me to speak with a stranger than family and friends. Thanks for sharing!

    August 19, 2022
  • MelsammTransplant Patient

    I know what you mean, you have had your transplant I am 2years out and people have moved on w/there lives and you are still standing and trying to figure things out.

    I lost my biggest supporter “my Dad” he passed just shy of my 1yr. anniversary from brain ca.

    I am almost at my 2yr. anniversary and I can bet no one will remember. If my Dad was still w/me he would celebrate to the moon and back for sure with me, he was w/me every step of my transplant journey. So yes I understand what you mean.

    You hang in there😊🦋

    I am so grateful to my donor family and my second chance at life b/c I am doing really good.

    August 20, 2022
  • AliEm14Expert
    Transplant Patient

    I'm so glad you're doing so well! It can be hard when this moment that feels (and is) so life changing for us isn't noticed by others. I think people often forget that when we lose someone we love, we don't just lose them in the moment but in every moment that comes after, every celebration, every monumental date. I'd love to honor your transplant anniversary, and your dad, with you

    August 22, 2022
  • AliEm14Expert
    Transplant Patient

    I agree! A combination of western and alternative medicine has been where I've landed too. I find it hard to wrap my head around that one of the known (and common) side effects of immunosuppression drugs is mental changes, and yet we aren't given a toolbox to at least set us up on the right path should those occur. In a lot of patients its things like anxiety and depression, but what about things like hallucinations, paranoia... And all of those things can be made worse by the medical trauma of what we've just experienced and continue to experience fighting for adequate care

    I don't know what the answer is, but I definitely think there needs to be more holistic support given to patients. I agree that support groups and learning from other patients has been so important in this regard. A lot of doctors and psychologists, like you said, simply don't know. We really do have to figure this out for ourselves. Are there any trauma healing practices you've found especially helpful?

    August 22, 2022
  • AliEm14Expert
    Transplant Patient

    And how often do we just say we're fine in conversations with our medical team because A. there isn't enough time or B. we're so busy focusing on making sure our physical list of concerns is covered we forget about our own mental health? I know I'm guilty of this.

    That's why I love places like TransplantLyfe, where we are able to connect with each other and check in. Mental health matters too!

    August 22, 2022
  • MelsammTransplant Patient

    Yes so very true, when I go for my f/u visits, the doc flys in any qxs. . how r u, your labs look good today kidneys are stable see u in 6 mths. maybe 10minutes.

    it does help to hear others feel the same and are going thru a lot to, it’s not just me.

    ty😊🌻

    August 22, 2022
  • MelsammTransplant Patient

    Thank u Ali for you kind words I just saw it this morning.

    Yes, I lost my mom first and now my dad, so u r so right about monumental moments, traditions I was very very close to my parents, they were the best support u could ever have my brother is my support also but he has a hard time talking about things. I think I am just lost b/c I have always been the caregiver in my family. I just recently lost my precious dog of 15yrs.and that sent me over the edge a little for sure but I am ok, just taking it a day at a time.

    August 22, 2022
  • ShelbycreatesExpert
    Transplant Patient

    @AliEm14 some of my most healing practices have been journaling, somatic tracking, emotional freedom technique tapping, lots of breath work practices, shaking, singing at the top of my lungs, and using the Curable app. I’ve got a reel I’ll post here too:

    https://www.instagram.com/reel/CgUwxbUDz5b/?igshid=YmMyMTA2M2Y=

    August 23, 2022
  • ShelbycreatesExpert
    Transplant Patient

    @Staceywright I’m so sorry you’ve been having such a hard time dealing with the emotional component of healing. I recorded a podcast episode a while back about emotions that you might find helpful. I’ll link it here:

    https://podcasts.apple.com/us/podcast/military-mama-looking-for-words/id1528449244?i=1000560214971

    August 23, 2022
  • AliEm14Expert
    Transplant Patient

    shaking and singing are some of my favourite things too! I've never really gotten into tapping. Another big thing that works for me is the Wim Hof method, so breath retention with cold exposure.

    August 23, 2022
  • ShelbycreatesExpert
    Transplant Patient
    August 24, 2022
  • ShelbycreatesExpert
    Transplant Patient

    @Melsamm I'm so sorry to hear about your mom and dad and your dog. That is so heartbreaking. Sending you love

    August 24, 2022
  • ShelbycreatesExpert
    Transplant Patient

    @Melsamm When is your anniversary? I'd love to celebrate with you and hold space for your special day. I used to have such a hard time when my transplant anniversary date would come up, especially for the first one. I decided that if I had to go through all the tough stuff of going through the transplant process, that I needed to be able to celebrate like crazy too! The week before my anniversary, I decided to always have a party and invite people to celebrate with me. That got difficult during COVID, but I always have some sort of a party, even if it's just for really close family/friends.

    August 24, 2022
  • MelsammTransplant Patient

    Thank you😊 a day at a time, I don’t think we’ll I never will get over it. I just have triggers that happen and I deal w/it when it happens.

    August 24, 2022
  • AmberortizTransplant Patient

    I love reading these posts and seeing different people sharing how they are dealing with things especially when finding a mix of conventional treatment and alternative treatments. I would love to see more research put into holistic and alternative treatments where transplant patients are concerned. I think we would see so much more healing of mind, body and spirit. I think as much as people around us try to be supportive too, they can't truly understand what this is like. I know that most the people outside of my closest inner circle believe that everything is just back to normal after you get your transplant. I know a lot of us had complications to deal with and even if everything went well, there is a whole new way of living life that we have to just to. I know that it is hard for them to understand how I can be doing great one day and then get triggered and feel like I'm going to lose it. I still struggle with anxiety on lab days. It has helped me so much to find mind body work and work to release trauma.

    August 25, 2022
  • AliEm14Expert
    Transplant Patient

    @Amberortiz i’m hopeful more will come out in the next little bit. There’s been so much done already in chronic illness in general, just not transplant specific, and a lot of that is applicable across disease areas. We definitely need a space for non medical resources as well. My entire life changed post transplant, which other people don’t get. I’m grateful and it’s a lot to adjust to. It doesn’t have to be either/or

    August 25, 2022
  • MelsammTransplant Patient

    Hi, I just have to say, u said it perfect, I totally agree. Especially the part on lab days. I think people think u had a transplant u r fine now, it’s not a cure and there is a lot of tweaking the meds to get it right.

    so many emotions!

    thank u😊

    August 25, 2022
  • RobTransplant Patient

    When I first found out I was sick, I was In denial. 


    I did not feel sick and I certainly couldn’t believe my prognosis was possible fatality within 12 months.


    When I was told my only chance of survival was a transplant, the thought of my life being extended ONLY if another’s journey ends was foreign.


    I struggled with that and the thought of having a deceased person’s tissue in me.


    NSW health in Australia provided me access to physiological care and counselling to ensure both I was suitable to receive a transplant and that I was able to cope with it when and if it happened. 


    I would willing share my journey and the details of the amazing journey assisted by some wonderful counselling from some extraordinarily talented practitioners.NSW Health Royal North Shore Hospital Royal Prince Alfred Hospital

    November 8, 2022
  • MelsammTransplant Patient

    I would like to hear your LTP journey. I was in kind of the same situation w/my LTP diagnosis in 2020.

    2yrs. LTP doing well, I have communicated w/my donor family and feel so very blessed each and every day.😊💚

    I hope u have done well w/your LTP.

    November 8, 2022
  • RobTransplant Patient

    www.transplantadvocacy.com

    November 8, 2022
  • brookegurradExpert
    Transplant Patient

    @Melsamm, I started “demanding” more time with my team by coming with my questions and concerns written down. They got to ask me the general questions and when they asked me what was going on or how I was doing, I pulled out my list. And then I ask questions until I feel like I have the information and clarity I need. I think my team is starting to appreciate that I am my best advocate. Outside of labs, they only know what I tell them.

    November 10, 2022
  • MelsammTransplant Patient

    When I go for my 6mth visit in January I am going to take your advice. Ty😊

    November 11, 2022
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