Liver
Let's introduce ourselves!
Hi everyone! I am so excited to be here and to get to know all of you! My name is Meghan and I received a living donor liver transplant on 12/10/19 at Johns Hopkins thanks to the generosity of my uncle, who donated the left lobe of his liver to me. My transplant was needed due to an incredibly rare genetic liver disease, which they have not been able to officially diagnose but is similar to Progressive Familial Intrahepatic Cholestasis (PFIC). I live in Baltimore, MD with my dog, Addy, and work full-time as a marketing executive at a global affiliate marketing network, as well as on a part-time basis for Lyfebulb as a marketing consultant for TransplantLyfe. In my spare time I like reading, watching TV/movies, baking and cooking, online shopping, re-decorating my house, taking online barre classes, and raising awareness for transplants and organ donation on my Instagram, @meghanmakingmoves. I absolutely love traveling and exploring new cities and countries; I cannot wait until the pandemic subsides and we are able to travel again! I have longed for a supportive community of other transplant recipients that I could chat with and relate to, and I am thrilled that this platform is here to provide just that! I look forward to getting to know all of you - make sure to add a comment below introducing yourself! ☺️
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Transplant Patient
It has been great to get to know you over the past few weeks Meghan - now I want to learn more about your transplant experience ! Do you ever feel nauseous??
Hi @Karin , great getting to know you as well! I do feel nauseous sometimes - I definitely have noticed a correlation between certain foods and the nausea, like fatty foods or green leafy vegetables that are harder to digest. Some of my medications cause nausea as well, if taken on an empty stomach! How about you?
Transplant Patient
My tummy is the worst - so sensitive to leafy foods or spicy ones - fat as well! Best is toast and chamomile tea...
Thank you both Meghan & Karin for introducing me to this great community! I’m 32, and coming on 3 year anniversary of my double lung transplant on January 5! I was diagnosed with CF at age 4, and by 28 CF had destroyed my lungs, & i needed an emergency double lung transplant. My transplant journey was far from easy I went into it very sick, was on a ventilator and ecmo while awaiting lungs for 3 weeks. I had bleeding issues during my transplant surgery & bc of that had to be sent to OR 5 times to be reopened and packed to stop the bleeding. I also developed blood clots and infections after transplant and spent 18 months total in hospital recovering, learning to walk, talk, swallow, eat & breathe on my own with my new lungs. It was a long and difficult journey but I’d do it again if I had to as now I am living and breathing the best I’ve ever been able to & for that I’m so grateful to my transplant team my donor & her family & all my family & loved ones who were their by my side through it all.
@Karin - Yes! I find myself often turning to saltine crackers and ginger ale on particularly bad days.
@Mcneilchelsey what a journey you've been on! I can't even imagine spending 18 months in the hospital, but I'm sure you have an incredible amount of experience and insight that can help other lung transplant recipients - I'm so glad you're doing well now, and that you've joined this community!
Transplant Patient
@Mcneilchelsey Chelsey - your journey is incredible and I am sure there are so many things we could learn from you! What are your worst issues right now? I fear rejection but my biggest fears now are catching Covid and not being here for my daughter as she grows up
Transplant Patient
I'm Alisha, 24, from Alberta, Canada. I was born with a genetic illness that affected my liver, and was in poor metabolic control my entire life. When I was in college, my body stopped responding to my treatments, and my doctors decided it was best to put me on the transplant list.
I was on the waiting list for a year and a half before my brother came forward as a living donor. There were a lot of issues during the initial surgery, and it quickly became apparent my brother's liver wouldn't be a match for me. So I was relisted at the top of the list, and 4 days later underwent my second transplant with a deceased donor liver from someone across the country.
I'm currently 3 months post transplant. I've been pretty much isolated due to Covid, but before that I was a yoga teacher. I'm also a writer, and am currently studying to be a death doula and life transitions coach.
@AliEm14 Hi Alisha! I also had my liver transplant due to a rare genetic illness. How amazing of your brother to step up - and although that transplant didn't work out, I'm so glad you were able to receive a second liver. Your studies sound really interesting, I have never heard of a death doula before, but can certainly see how beneficial one could be!
Transplant Patient
Interesting (and sad) that your brothers liver was not a match and how amazing you got a second one so fast! Great that you are back studying and doing something so impactful!
Transplant Patient
@meghansmith i use ginger ale daily and crackers every night before going to sleep!
Hi everyone,
Seems what I wrote got longer than I wanted! lol.
I'm from Philly, and I've had 3 kidney transplants. My first two were from deceased donors, and the third is from a living donor (my mom). She passed away after donating to me. This transplant was experimental. I have a rare kidney disease, FSGS. I've also got a few other diagnoses that may or may not be related.
I also run an org called the American Living Organ Donor Fund. If anyone wants to get involved, I'd love to connect with you. We are an all volunteer org, but we work across all 50 states and U.S. territories. We help a lot of people, and we have more programs we want to build out.
I have done different forms of dialysis, both hemo and PD.
I'm always looking to connect with folks about job stuff, work-life balance and advocacy, entrepreneurship, dating/relationship advice for those of us with transplants or chronic diseases (I'm currently single, and it's not easy to bring up), and always looking for new friends as well. I'm a big sports fan!
Hi Michael! Your organization sounds really interesting - I feel there is so much more support that can be given to living donors, who make such a generous decision. I agree that bringing up transplant while dating can be challenging, especially when people really don't understand much about transplant - it can scare people away!
Thanks Meghan. And yes it can be. Maybe we should start a separate thread at some point on that topic alone!
Hello! I’m Brandon and had a pancreas-only transplant in 2018. After being a well-controlled type 1 diabetic from the age of 3, my body no longer could be controlled with insulin and I became a brittle diabetic. Transplantation was the only options for survival. So happy to be here today!
Transplant Patient
Welcome Brandon! I have both a kidney and a pancreas, but totally understand the brittle diabetes part - I am no longer afraid of "dead in bed" or driving and going low, etc etc... also - amazing to not have to think of t1d all the time every day...
Hi @meghansmith !
I am Kinza. I am here as a care partner to my good friend who recently got the call to be on alert to receive a kidney. Excited to be on the platform and learn from you and other members who have received and are living with a transplant! 😊
Hi Kinza! How great of you to support your friend through the transplant process! I'm sure you'll find a lot of helpful tips on here! :)
Hi Everyone!
My name is Brittney Hameister and I am from a small town in central Wisconsin. On February 18, 2020, I received a liver transplant at UW Health in Madison Wisconsin after being on the waiting list for about 16 days.
I am currently working on my Master's Degree in Manufacturing Engineering and will complete that in the Spring of 2022.
Besides working full time as a Design Engineer and taking classes, I love to be outdoors. I like to hunt, fish, hike, and camp. I also enjoy spending time with family and watching my favorite shows/movies.
It is so great to see a page like this were individuals that have been affected by transplant in anyway can connect and learn from one another.
Can't wait to connect with others and gain support in the future. If you have any questions or want to know more about my transplant journey, I would be more than happy to answer questions or share. 😀
Brittney
Hi Brittney! So excited you are here! Major props to you for working AND taking grad school classes on top of transplant recovery!!
Hi there. I’m Michelle. I’m almost 7 months post-transplant. I ended up needing a liver transplant due to blood clots when I was pregnant with my child 12 years ago that damaged my liver and impeded its blood flow. (I had Budd Chiari syndrome.) So here I am now. I feel like I’m doing pretty well post-transplant. I’ve always been active and outdoorsy, and I’m back to running again which helps me feel like the old me. That, plus quarantine cooking and baking is keeping me distracted while my family isolates at home during the pandemic. So “hi.” And thanks for creating this forum.
Hi Michelle! Glad that you're here and that you're doing well! ☺️
Hi everyone,
My name is Daniela and I received my organ transplant 10/23/19 I celebrated my one year and have been so grateful. I started having gastrointestinal problems since I was about 7 years old but was always told it was nothing major. In 2014 Due to a visit to the ER I ended up being diagnosed with autoimmune hepatitis in which my body attacks my liver. Never had my life turned upside down so fast. I was treated at CHLA and placed on the transplant list in 2016. I got the news that an anonymous donor was going to donate in 2019 and later that year in October I received my transplant. Am currently in college now just trying to deal with it all.
Hi all!
My name is Carolyn and I received a kidney and pancreas transplant from a deceased donor in April 2020. I was listed only for 4 months before I got the call, and I was so surprised when I did because the program had been suspended due to Covid! I got the call the day they opted to reopen the kidney program!
Its been a weird life adapting to post transplant life in the era of covid, and trying to manage anxiety at all turns
I was a diabetic for 27 years and my kidneys began to fail after I gave birth to my beautiful boy 6 years ago prematurely due to severe pre-eclampsia. Its been a ride but I'm so happy to find a community to share grow and thrive in!
I am the mother of a living donor liver transplant patient. My son was diagnosed with Glycogen Storage Disease Type 1A and received a transplant from his father almost seven years ago due to hepatic adenoma formation. He is in quite good health now, married and working full time. He completed a masters degree from Columbia a couple of years after the transplant. His initial procedure led to serious complications and it had to be revised at a different hospital. He is extremely careful with his diet and medications and is able to lead a much more normal life than before the transplant
Hi Daniela! Welcome!! I am also a liver transplant recipient and became ill during college; I know how difficult that can be to juggle! Hopefully this community serves as a great support!
Welcome Carolyn! I'm so glad you were able to get your transplant despite covid! I received my transplant Dec 2019 so I can relate to recovering during the pandemic, but I'm sure it was nerve-wracking receiving your transplant in the thick of it. Happy to have you here!!
Hi there! So glad you are here and that your son is doing well! I am also a living donor liver transplant recipient - my uncle was my donor - so I understand how incredible, generous and selfless living donors are.
Hi everyone! My name is Jeanmarie. I had a kidney transplant in 2006. My Dad was my donor. I was diagnosed with Lupus Nephritis when I was 16. I was born and raised in San Diego, CA. I love the beach!
I am almost 15 years post transplant. I have been through 3 rejection episodes. All were caught early enough to be treated. I then caught a rare virus. Being immunosuppressed it went crazy and destroyed my bone marrow resulting in blood transfusions. But I survived that too!
I am currently trying out a new infusion that will hopefully give the kidney transplant some new life and last another 15 years 🤞
Diet, exercise and a positive outlook are the things I focus on in my life. I love traveling (pre-covid), I love talking to people and my most favorite thing is photography! I love posting photos and bringing a smile to everyone's face! Nice to meet everyone! 💗
Hi Jeanmarie! So glad you're here! Sounds like you've overcome quite a lot during your journey!