General
What was the thing that most surprised you after your transplant?
April 28, 2023
in General
I think the thing that surprised me the most was when they tried to discharge me a couple days after my transplant. I had four kids to go home to and help care for (my mom and sister were helping too). I felt like they wanted to keep me in the hospital longer for when I had a baby than a transplant. I asked to stay longer and it was good that I did because they caught some complications more quickly because I was still there.
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Transplant Patient
My second transplant surprised me most 😅 I went in thinking I was getting a living donor transplant and would be awake by the next day, woke up almost a month later having had 2 transplants, a reconstructive surgery and on a vent!
When I was extubated three days after my combined heart/liver transplants, I was surprised but thrilled to discover that my liver had saved another patient’s life in a Domino Liver Transplant procedure! Only ~5 are annually performed in the U.S.
Oh my. Yes that is an intense surprise @AliEm14 ! I’m so glad you are on the other side of that experience and lived to tell the tale.
@Charles_Williams_Sr what do you mean by your liver saving someone else? How did that work?? You’ve got me intrigued.
The recipient had an estimated 3-4 mths left of life due to the chronicity and severity of his liver disease, waiting for a liver transplant with no compatible donor liver available for an extended time period. Because my liver was otherwise healthy except for the single abnormal protein synthesis, and compatible, the specialists believed it could give him at least an extra ten years of quality of life. And, with the new treatment drugs just becoming available, possibly a full lifespan. Unfortunately, I was too late into CHF for the new drugs, which were FDA-approved the same month as my transplants.
The amount of weight that I initially lost!
@Charles_Williams_Sr wow. I’d love to hear more about your story. That sounds fascinating.
@Marydmac me too!!! Initially I gained a ton because of the fluids they pumped me full of during surgery. Then, I dropped a ton of weight after that.
Interestingly, I felt scared to share this, but I am also excited to share that what surprised me most was how great I felt after surgery. I know part of it was the massive amount of steroids I was taking, but I felt so good. I had so much energy, even the day after surgery, and two days after surgery I felt like I was ready to resume normal life. I had mentally prepared for the worst. 15(+) days in the hospital, being on tubes, maybe a feeding tube, lots of pain, could take a few days for the kidney to take... but instead I woke up, after a night of sleep, after surgery and was really felt ready to take on the world. Okay, yeah, I was sore, and bloated/swollen, but I was was expecting that. I was not ready for how dark my urine would be for the first two days, thinking they had pumped me full of fluids, but it cleared up.
I did experience a bit of rejection a few weeks after my surgery and I was surprised how miserable the Thymo was at that point. I was glad that I was in surgery during the first one, and still heavily sedated after surgery. I did not like what it made my body feel like, at all. I don't know if it was the Benedryl, or the Thymo, but my skin was crawling. I couldn't sit, couldn't stand, didn't want any fabric touching me, that was surprising, and the most impactful on my recovery memory.
Marydmac Me to, could not believe the difference each day! Most all getting the tubes out and getting out of ICU💚💙😊
Transplant Patient
I had a similar experience. I woke up, and despite knowing mentally everything that had just happened I was surprised by how good I felt. I didn't have the 'GSD pain' as I called it. And my first coherent thought I remember was "those doctors lied to me!"
I'm one of the first people transplanted for my condition ever, there isn't a ton of knowledge on it, and the specialists who were treating me pre-transplant had told me I didn't actually feel that different than anyone else. I had nothing to compare it to so of course I believed them and just thought everyone lived in pain and exhausted. So when I woke up post transplant I was so surprised by how good I now felt, and how terrible I'd felt for so long thinking that was normal
Transplant Patient
@TServold i was hyper as well due to the steroids - in my center they give four doses of thymoglobulin combined w Benadryl and Steroids for a kidney and 7 for a pancreas so can’t really go home prior to that @Shelbycreates - I was out of there as soon as the fourth dose was done (after four nights).
I was surprised at how weak I had become after my kidney transplant! I was running hills the day before my transplant. After the surgery and an additional 10 days of "downtime" in the hospital (I had a "sleepy" kidney that did not start functioning properly until a week after transplantation) I couldn't walk up a flight of stairs without losing my breath! The good news is that "Hercules" and the rest of my body eventually got accustomed to each other, and we will celebrate our 8th "kidneyversary" next month. 😎
Kidneywarrior congratulations may u have many many more kidneyversarys to come.
I have noticed that most TP patients on this site are very active”exercise”, eat healthy. I was very active/exercising to my eating habits were not the best but much better after my LTP
wishing you the best💚💙
Thank you! That was my experience as well, @Melsamm - I doubled down on eating well and staying hydrated and active after my transplant. And I’m not surprised to hear that transplant recipients in this community are very health conscious because we all want better health outcomes for ourselves and our entire community.
Amen.. we sure do
You make a great point! I also had become weak. So, I wanted to go and do all the things, but like you said walking up the stairs would take my breath away more than I thought it should. My muscle atrophy felt significant. My surgical team assured me (and I knew) it was because I had just gone through a several hour long surgical procedure. It didn't take me long to get back to what my baseline was before surgery, and even better, because as it turns out, I was already really tired and weak due to CKD.
That people without organ failure walk around every day feeling this damn good! Mind-blowing how much our resilient bodies were constantly carrying everyday.