Liver
Do you feel your doctors equipped you for life post transplant?
Updated May 29, 2021
in Liver
Hi everyone, I would love to hear about care post transplant. Do you feel like your doctors gave you resources for transplant care?
Do you feel like you had resources for understanding how your whole life is affected?
(I am 10 years post liver transplant and want to hear from you guys)
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1 - 30 of 41 Replies
Transplant Patient
Hi @eburford - I am 11 and 12 years out w my pancreas and kidney respectively.
I am not sure I was trained or equipped - I learned on the go - I knew I needed to be on drugs for the remainder of my life and that I needed to be cautious w crowds and certain foods - but I really have lived my life the way I wanted to this point. COVID has changed much, for all of us, but esp for transplant pts I feel - I am more careful that my peers, and I am delighted at how much better my GI system is now that I don't eat out much (or at all). I did manage to have a child, which was an issue and something I was worried about - and I am able to work hard and not get sick more than my team. My side effects are manageable so my biggest fear is losing my transplants...
Transplant Patient
I was told I'd be immunocompromised, that I wouldn't be able to have grapefruit, that I'd be on medication for the rest of my life. And with how I was living before, none of that really sounded that bad! I learned a lot when I was going through it. I think even if they had told me everything before it wouldn't have hit me the same way. I think transplant life is one of those things you learn how to do by doing it. I wish someone had prepared me slightly better for the emotional and mental side of it, though. All of that hit me like a ton of bricks, and I feel like that's something no one ever talked to me about. There's so much focus on physically what your body will go through that the other areas seem to be forgotten.
I am now almost a year post transplant and have had pretty good resources and able to get most of the answers from asking my post transplant coordinator or the medical staff before I left the hospital. There are some things I have to stay away from...grapefruit, pomegranates, deli meat--unless it is heated to proper temperature, and buffets--which I didn't really go to before transplant. I was also told I can't drink alcohol anymore, which actually happened before my transplant and I wasn't that big into it anyways. I have found Mocktails are actually pretty good, but I have found myself sticking to water/sparkling water. The one thing I wish someone would have told me about before was the mental/emotional stress you go through. I was lucky and had a great support group (family and friends), but sometimes I would just have those days. Everyone's experience is different, but don't forget to ask/reach out for help if you need (whether is is here or even through your medical team).
I am still awaiting (kidney/pancreas) transplant and this question sparks my curiosity. So far, all I know is that the first 12 weeks after surgery will be very difficult. There will be lots of pain, and lots of follow up appointments that will require help of other people. Lots of exercise and movement restrictions, as sutures heal. I also know that I will have meds to take on a very strict schedule, always. What other things do you think I should be aware of?
Transplant Patient
@TServold i echo what @bhameister said. My team prepared me for meds and follow up appointments. They did not prepare me for the emotional affects, or how long those would last (I’m 6 months out and still strongly feel those post transplant emotions)
I worked with a therapist pre and post transplant and that really helped. Come up with a coping plan, your self care items, your support people now. For me I really liked sensory stimulation in the hospital and was always holding bags of ice or cold cloths. Find what works for you, and don’t be afraid to ask your centre about their emotional supports or to see a social worker
I’m am almost 3 months Post kidney transplant. The surgery was very easy,with very little pain. I was amazed! My transplant team had been great. Prepared me for most things, except all of the side effects of the immune suppressant drugs. I’m very emotional. I have a great support system and feel pretty good physically . I had an appointment on Friday, they added a high blood pressure medicine, changed immune suppression drug. Again. Wanted me to see an endocrinologist, and wanted me to have iron infusion for anemia! I had a reaction to iron dextran while in the hospital and am very afraid to try something similar. I cried for 24 hours, I had no control over it. Tried to distract myself in many ways. I felt like I was going crazy! Thank god that passed and Saturday night I could sleep and have been fine since. Anyone else have a similar experience?
Transplant Patient
not kidney but I had a similar experience where I had really high blood pressure and was anemic. I ended up needing an arterial surgery since there was an issue with how my arteries were connecting to my liver. I was in the hospital maybe 2 days post surgery, got an iron infusion, went home with an iron supplement and blood pressure meds. That was 2 months ago, and currently I'm off both of those medications with my blood pressure having returned back to normal and my iron within normal limits.
They've also changed my immunosuppression so many times. I know its hard, and emotional. Feel your feelings, let it be hard. And remember you can do hard things. My inbox is always open if you want to chat
First of all! PLEASE ask any questions you are wondering about. I was 15 when I received my transplant. I was trying to figure out life and growing up. then this emergent full transplant thing came up and turned my life upside down. I was 1st on the list immediately because i was at 0% function. I had no time to prep.
The only thing i would say is to start healthier habits as soon as you can. Transition of lifestyle can be challenging but helpful in the long term. I am STILL working on it 10 years later :)
Transplant Patient
@AliEm14 what was it that the therapist did for you that made it better? How did she/he equip you?? I never did therapy but I have been told I should!!
Transplant Patient
I am almost 16 years post-transplant (liver). I had no time to prepare for transplant, so I learned everything after the fact.
The biggest thing for me is to stay in tune with my body, be honest about my feelings, and know where my support/community lies.
I’m always here if anyone wants to chat. ♥️
Transplant Patient
i had a lot of previous medical trauma, so we were able to work through some of that pre-transplant. We worked through some of the negative beliefs I held around my body and my health. And we were able to work together to find some helpful coping mechanisms (For me, having textural things to hold in the hospital is really important in keeping me grounded. During my transplant, I always wanted to hold and crunch a bag of ice. Eventually they got so worried my fingers were going to freeze off, so we transitioned to playdough). She also wrote a note explaining my past traumas and my preferred coping mechanisms and support people to the hospital for them to keep in my chart, so that whoever entered my room knew my history and they were better able to communicate with me what was happening, allowing me to have my comfort things and people. I continue to see her, and we are working through me really finding my identity again as a now transplant patient and some of the trauma that came up surrounding my transplant
@Karin @AliEm14 I did therapy post transplant and it helped me a lot. I struggled with transition from being a teenager with a transplant to an adult. I also struggled with survivors guilt. I learned a lot of coping mechanisms and ways to deal with my anxiety.
Transplant Patient
@ChefAmanda thats awesome! Survivors guilt is real.
I’ve been working in the trauma world for a while even pre-transplant, specifically learning about trauma in the veins of chronic illness and pregnancy loss. So I knew that after my transplant I really wanted to create a lot of holistic rituals and resources around it. I have worked with a number of coaches, doulas and different healers around this, and all of their insight has been so helpful. Eventually I’d like to bring it all together and create a retreat or workshop for transplant patients and their supporters. Hey @Karin can we do a transplantlyfe retreat?!?
@AliEm14 oh I love your retreat idea. Learning different practices and rituals.
a retreat would be so cool and refreshing! We can also do a meetup! Even if it cant be organized and soured by Lyfebulb
Transplant Patient
@ChefAmanda @eburford
yes! Once we can safely travel again after Covid this is totally happening. I’d totally be down to help organize it and share my ritual practices
@AliEm14 Sounds good!
loooove the retreat idea!!! 🌟
Transplant Patient
I'd love a retreat and would love to help organize!
Transplant Patient
Yes!!! @AliEm14 i love the idea - let us plan it out now so we can execute when we are all vaccinated. Definitely a place w great food, beautiful nature for hiking and retreat facilities / perhaps a spa for some pampering and great beds! We are on it!!
Transplant Patient
I am serious about this - could be in the mountains perhaps / or by the water - one of my best summers ever was when I spent 8 weeks in OberLech in Austria - mountain hiking w healthy fresh food and amazing beds w European duvets. It was set up week by week as educational seminars focused on separate topics including medicine, chemistry etc (it was organized by IBM, and I was 18 and worked as an intern there). We could add seminars as well w Lecturers from Academia and industry - plus get some companies to sponsor us!
I love the idea of a retreat! We will all need a vacation after Covid. :)
Transplant Patient
@Karin yes!!!
I live not too far from the Rockies and my favourite summer memories are vacationing there every summer. You have my email - let’s plan this thing!
@Karin , @AliEm14 Yes! Oh I love the idea of a retreat. I am in the Denver area, so the Rocky Mountains are my backyard. I am also an EA for a medical device company so I could assist in some coordinating, where applicable.
Transplant Patient
Let us discuss per zoom! Love this idea @AliEm14 @TServold @AnnMarie
The thing i wish I had listened to ( i admit i was told but I didn't believe it at the time!) Is that my brain will think I have more energy that my body should exert. I felt pretty great a few days after my transplant, and walked out of the hospital mostly under my own power after 10 days. I got home, and I couldbt believe how restless I felt, I was waking up with energy and sleeping better, so I started baking. Going for short walks with 4 weeks, laundry shortly after, and then it hit me like a ton of bricks. I would be out for a couple of days! Pacing yourself, and being conscious of this, is tricky but very advised!
@Care_mass , I worry about this so much! I have a hard time sitting still. Even when my son was born, they told me not to drive for a couple of weeks, since I had a C-section. The day after we got home I ran to the grocery store, on my own. I totally had that false sense of energy and pushed myself a little too hard. I hope that I will realize after transplant surgery it's okay to just sit and watch TV.
Yes! When I tired myself out, I'd do sudoku (really hard ones!) , took up knitting, etc to keep myself feeling accomplished and letting my non insulin calculating brain get some exercise!
Transplant Patient
Yes! I'm surprised at how much energy managing and adjusting to transplant life takes, even now. Initially I had a lot of complications, so I wasn't up to doing anything right away but even when I mentally felt like I could get back to normal and my brain thought we should be doing other things, my body still needed time.
Transplant Patient
We need to allow our bodies to heal and to build back. This can take years and rest, physical activity, healthy food and fluids and mental work are all required!
I would love to build a program for patients post transplant
@lescp3