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Hi everyone. I’m always amazed each time I meet a new transplant recipient or donor/donor family with their story and connection to the transplant world. I’d love to hear YOUR story about your transplant. ❤️
My transplant story is a wild one! I was born with a rare, metabolic condition (Glycogen Storage Disease) where my liver lacked the enzyme needed to turn glycogen into glucose. Very intense treatments, g-tube feeds, restrictive diets all through my growing up years. I was incredibly sick, almost died multiple times. Got pregnant at 21, it ended up being way too much for my body and it started shutting down. There was no way of getting enough nutrients to me and a growing baby. My son died in March of 2018 during pregnancy, I was listed for a liver transplant shortly after. It was one of those things transplant had always been on the table since birth, and the pregnancy kind of pushed me into it. My brother was approved as a living donor, after multiple living donors were denied for me, and we both underwent surgery in August of 2020. There were complications in both surgeries, I rejected his liver immediately, and was placed on the transplant list again, this time as highest priority in Canada. Got a deceased donor liver a few days later, had another transplant. Due to the damage control nature of the surgery, and the severity of my condition pre-surgery, my abdominal wall shattered and I had an abdominal wall transplant and reconstruction in November of 2022.
I think that's the short version of my story 😅
I never got sick until I turned 20, and then it was autoimmune hepatitis and acute liver failure within a period of 6 weeks.
I remember asking the transplant team, "Well, what if I don't want one?" about a liver transplant. They calmly told me that I might live a week. I got on board with that plan really quickly.
I've had a roller coaster of a health journey, with multiple rejection episodes, hospitalizations, and IVIG treatments. I contracted West Nile virus one year after my transplant and the swine flu two years after. I moved across the country, from Mississippi to Washington state. I've had two amazing transplant care teams between Ochsner in New Orleans, Louisiana and the University of Washington in Seattle.
Here I am, a week away from my 38th birthday, almost 18 years post-transplant.
I won't say that things are easy, because they aren't. There's a lot no one prepared me for that I've had to figure out on my own. It's why I care so much about investing in people on this journey. I'm glad we have each other.
after 18 years of being post LTP do u still have to take a lot of immunosuppressants meds. I am almost 3yrs. Post LTP.
I was just curious about this.
I’ll do my best not to make this a novella 🙃 my kidney failure was a result of an extremely rare and complex reaction to preeclampsia/ HELLP syndrome. In a nut shell after a 30 hour labour with my 6th child I bleed to death loosing my entire volume of blood (blood donation saved my life that night) and due to this complication and the extremely high Blood pressure I experienced for 12 hours my kidneys did not survive- when my son was 36 hours old I was loaded on a plane ✈️ to the city for emergency dialysis- I was taken to the ICU given a chest catheter upgrade (my current one they were using for blood transfusions was not large enough for dialysis) then put on bedside hemo for 8 hours- I received hemo daily for the first 7 days then on a regular schedule of every other day for 4 hours. I had over 70 kilos of fluid taken off in the first 7 days and it was 3 weeks before I was at my dry weight- in this time I couldn’t see my family at all due to Covid restrictions. After 4 weeks in hospital I was told I could go home and continue dialysis there and would be listed for transplant asap- I have almost no memories of my child’s first month but I made it home 1 day before he turned 1 month old and 2 weeks before Christmas. And 19 months later we learned my spouse had as a perfect match and within 3 days of the good news we had surgery booked for the next week. We were a bit famous in the hospital as not many couples donate to each other directly it’s usually a paired exchange. Surgery went fantastic my new much younger kidney was a show off from day one. I have had several medication complications and have had to change my meds several times now. I am still only 8 months post transplant and learning daily what’s normal for me now-
@Melsamm I guess "a lot" needs to be defined. Lol. Right after transplant I was taking around 60 pills a day (Prograf, Cellcept, Prednisone plus reflux meds, my regular anti-depressant, and all the anti-viral antibiotics that were pretty standard post-tx at that time).
I now take Prograf, Sirolimus, Prednisone. I've added Ursodiol, which is used to thin my bile. I take a preventative migraine medication, antidepressant, antianxiety, and some vitamin supplements.
So I take more "variety," but not as many pills.
Brooke guard, if u don’t mind me asking how much prograf siroliums r u taking is there a reason u r still on prednisone.
I just hate taking medication and hope one day I will not be taking so many immunosuppressant meds. I am almost 3yrs. But I did have a episode of acute rejection and just stopped prednisone
Wow! What different and unique paths that led everyone here to connect! Love it. And it's true the ride is wild and the outcomes uncertain but it's worth the ride.
In a very abreviated form, My son was born with Biliary Atresia. Kasai deemed a failure after 2 months and was listed for transplant. Hubby was tested and a match but his liver was too big for our little guy. I was tested and also a match so we proceeded forward. He was transplanted at 9 months old and had a short but hard recovery in the hospital, as did I as his donor. We are now 6 years post op and while we've had some epicly sad bouts of sickness and hospital stays during year 5 post transplant, he is thriving as a 7 year old in 1st grade now.
@Melsamm i’m 2.5 years out, only on long acting tacro and ursodial. My team was really amazing at getting me off as many meds as possible as quickly as possible. @brookegurrad and I have had this conversation many times and what you’re on really comes down to your own personal history and what your team is comfortable with, it seems. I’m also not in the US if that helps
Hey all - I was diagnosed with Type 1 Diabetes at age 9 in 1975. In 2000 I was diagnosed with End Stage Renal Disease as a result of high blood pressure and diabetes. I received a pancreas-kidney transplant in October 2002. Both organs from the same cadaver. For the first couple years I was taking so many meds - prednisone, prograf, cellcept, cholesterol med, several hypertension meds plus the regular post tx antiviral meds. Now I take prednisone, prograf and cellcept for my anti-rejection. Plus an anti depressant, two hypertension meds, cholesterol med and a number of supplements all recommended by my transplant team. Multi vitamin, calcium, iron, D3, magnesium, niacinamide, and Azo cranberry supplement to prevent UTI. It is my understanding that I will continue to take the anti-rejection meds for the rest of my life. It would be great to stop prednisone but I'm told that will not happen for me.
At age 5 I was diagnosed with the rare liver disease Wilson’s Disease after watching my aunt receive a liver transplant for the same disease. Since that time, I’ve been in and out of specialty appointments/testing centers in hospitals throughout the country. I suffered with daily, extremely severe abdominal pain/nausea, and would often miss school, family events, and ultimately miss out on a normal happy childhood because of this. The disease was managed with various medications, all of which had severe side effects on my still developing body. Living in New Mexico, there was only one single hepatologist in the whole state, who knew very little about the disease itself and how to manage it, and resources were very limited. I was overprescribed the medication to treat the disease, and eventually overdosed with metal poisoning, leading to me being unable to take the medication at all and unable to treat the disease. From this point forward, my body and mind were never the same. My quality of life had completely diminished, and I had honestly accepted that I might not be able to ever get better and that I would just have to accept a life of suffering. It was unbearable and I had finally reached a point of exhaustion from having to advocate for myself, and from the extreme stress of trying to figure out how to get healthy on my own. I felt that I had wasted so much time, money, and effort trying to accomplish that, and I was ready to give up.
When I was 23, a family member told me about the Mayo Clinic, and begged me to seek help there. While I was skeptical of going for a while, I finally reached a point of desperation where it really seemed like my last option. I drove from New Mexico to the emergency room and was immediately admitted and underwent many tests and procedures. After being hospitalized for about 2 weeks, I was told my liver was failing and that I was going to ultimately need a liver transplant, which was extremely shocking because I didn’t realize how sick I had truly become. I was listed A1 status for 1 week and received my transplant June 17, 2022. The feeling was indescribable, and I can truly say that I woke up in the ICU feeling better than I ever had. I was released from the hospital 3 days post-transplant and have since been able to have such an improved quality of life. I no longer deal with daily debilitating symptoms, and am the happiest and healthiest I’ve ever felt. My recovery hasn’t been perfect, but I can truly say my suffering is finally over nearly 20 years later.
Wow! Everyone's story is so unique. I am so glad we have the resources and people in our lives that we do to ecourage us to get further help, for the organ donors and for even the medicine that helps us along. @Vyocum what a hard life. I love hearing that you are thriving now. @MrsPurina That is a lot of medicine. And a lot to manage. I pray you may be able to continue in that regimend.
@Vyocum Thanks so much for sharing your story! That is quite the journey you've been on. You are definitely in good company here at TransplantLyfe. It's nice getting to know you a little better. ☺️
@Vyocum - thank you so much for sharing your story - you're an amazing WARRIOR!
Please continue 'Sharing Your Stripes' - today, Feb 28th also happens to be designated as Rare Disease Day.
I’m a caregiver for my mother who in 2016 started experiencing pain and vomiting blood. A trip to the ER concluded that she had cirrosis. She had been living with diabetes for many years now and didn’t take proper care of her diet as she had been told she had a fatty liver. Unfortunately the primary care team she visited was from one of those community clinics where the doctors are constantly changing. It was never addressed and well it developed into cirrosis of the liver ( NASH). She had a good 4 years before she lost a ton of weight, hepatic encephalopathy episodes , weekly paracentesis, and then started dialysis when her kidneys took a hit. She was put on the transplant list in June 2022 and received her transplant for both liver and kidney in November of 2022.My husband and I were watching the antique roadshow when I received the call for an organ offer. It was a phone call that I never thought I would ever receive for the offer of her new organs. She’s now 4 months post transplant and boy has it been a rough couple of months ( frequent UTI’s, mental fog).
@WarriorLady61 wow. That is a massive transition. I’m sure it hasn’t been easy for you as a caregiver. Welcome to the transplant world! I hope you find the strength and connection you are looking for here. ❤️❤️❤️
Wow @WarriorLady61 - you rock! Please be sure to take time for yourself- Caregiver burnout is a reality! How's your mother doing now after the dual organ transplant?
WarriorLady61, Yes u have been thru a lot I hope your mom is doing well too. Like Sydney said take time for your self and most of all take care of u too. My caregiver was my 83 y/o Dad and I could see the wear and tear it took on him. I know she is so grateful for u.💚
Thank you all for your wonderful and heartfelt responses.. it feels so nice to not feel so lonely. This has been the best support group I’ve ever found. My mother is doing surprisingly well! Her liver team has pushed her to every 6 months visits.. it’s just the kidney team that needs to keep a close eye on her because kidney transplant tends to be a bit more delicate. I like how a nurse explained to me that kidneys tend to be one of the bougie organs.. if you don’t give them what they want or too much , they get sassy.
@WarriorLady61 i love that description for kidneys—bougie 🤣🤣 yup, they kinda are (from my personal experience 😆😆)
Warrior lady61 so happy to hear the good news about your mom. I to like what the nurse said about the kidneys to. You continue to take care of you💚❤️
I'm a dates person...
I have had some kidney disease since I was diagnosed with T1D in September 1997. After pregnancy, preeclampsia, and a long excruciating labor and C-section delivery I was in stage 3 CKD. On August 19, 2020 my nephrologist told me I was low stage 2 and she wanted to list me for kidney / pancreas transplant. So, I met with the surgical team and was officially listed for transplant on December 12, 2020. January 12, 2022 I received an offer call but my household was fighting a mild case of covid and I was ineligible. June 2, 2022 I went in for my second offer. The pancreas of the donor was not viable and I went back home. August 11, 2022 I received my third offer. This one was "an amazing opportunity" according to my coordinator. We spent the 12 & 13 at the hospital waiting. On the August 14 I had surgery. Surgery went very well, and oh Friday, August 19 I came home. After that my memory of dates gets a little fuzzy. About 19 days later I was experiencing higher than I should blood sugars. Discovered a blood clot in the splenic vein of the pancreas. Spent a few days back in the hospital getting my warfarin numbers in range. A couple weeks later I experienced a little bit of rejection in the pancreas and spent another few days in the hospital on another treatment of Thymo. Then I returned to work on September 26, 2022. Ever since thing are functioning as they should.
Wow, I love hearing everyone's unique journeys. I was diagnosed with a genetic condition that affects kidneys at 18 months old. Managing CKD my entire life, I ended up going into failure when I was 22 years old in November of 2021. I crashed into dialysis in critical condition with a very worrying lab numbers. I had a temporary hemodialysis catheter placed to start dialysis day of admission into the ER. Then had that taken out and another temporary catheter placed to discharge me from the hospital with. Thats when I started hemodialysis in clinic. I lasted 4 months on that, barely functioning as a human. I felt like a zombie. I switched over to Peritoneal Dialysis. When i was in the ER, starting dialysis, i took to social media to try to connect with individuals around my age that have experienced organ failure and transplant. I was surprised to find a large community on tik tok and instagram. Thats when i started sharing more about my journey and started doing research for a living donor. I answered a lot of peoples questions and concerns and had a few people apply to be my donor. My friend donated on my behalf and I recieved a living donor kidney one month later from across the country on May 10th. This week is my three month anniversary.