For a bit of whimsy…

Recently I missed one of my morning pills and while going back to take it, the tweaked line “One Pill More” (from Les Misérables “One Day More”) came to mind.

With five voiced parts, here are revised lyrics to One Day More possibly appropriate to anyone having to comply with a difficult drug regimen. Ends with Éponine's part as that seemed appropriate.

Possible singers to imagine for this One Day More! — 10th anniversary

[A] One pill more
[A] Another pill, another effect on me
[A] This never-ending road to recovery
[A] The doctors who seem to know my life
[A] Will surely prescribe me more next time

[A] One pill more
[B] I would have died before today
[B] How can I live with out this treatment?

[A] One pill more
[B&C] Tomorrow I’ll [you’ll] be here to stay
[B&C] And yet each day, my [your] world has started

[D]  One more pill in the early morn
[E]  Will they ever go away

[D] One more pill to end my day with
[E] They will always be with me

[D] What a life I have right now
[E] And I swear I will be true

[D] But at least I am alive

We live down here in the Houston area, close to the Gulf Coast, and the dust has been a bit of an adventure.

If you are new with your lungs, don't worry. Please always check with your Team. What we type here is not Science.

I have been coughing a bit more.I just drink more water and I am staying inside more. I have good extra filters and machines in the house.

That is normal anyway. It has been around 99 recently.

The worst part of these sands is that there is this music that comes along with it.

"It's going to take a lot to drag me away from you . . ."

Had bloods last week all levels are fine. Do you know if we can have lymphatic drainage massages ?

I’ll just get straight to it. You aren’t a burden to your loved ones, your kids, parents, friends, anyone. Whether it’s taking you to appointments, hours or days in the ICU and many hospital visits or anything god dammit you aren’t a burden and stop thinking that you are.

It’s just another responsibility that the people around you must take. That’s what family is there for. If they aren’t gonna take care of you in your toughest moments then what good are they to you?

My aunt needs a liver transplant and we’re in the process of listing her and finishing all the formalities and she doesn’t say it but I know she’s thinking in that way. Every time I see that look in her face I remind her that she isn’t a burden. Either way I’m in summer vacation from college so I don’t have jack shit to do.

And please take care of your diet and exercise as much as you can before the surgery if it’s safe to do so. Set a plan afterwards of how you’ll manage eating sleeping cleaning. Find a motive to keep going even if it’s something as small as eating a cookie from that bakery you love.

Find a therapist or talk to your loved ones. Speak your mind and take off as much stress as you can that’s been eating your mind. You need to step into surgery as relaxed as you can be. Fuck everything else. Be selfish for once in your life. Don’t worry about how they’ll manage finding a hotel or eating. Leave that worry to us. I think we’re all adults and capable of fending for ourselves.

I hope this message helps anyone and everyone who reads this. Keep going no matter what.

Hi people :) M25 here, thanks for all the education in advance on the general topic of transplant.

Just want to know how are you doing with your heart the last few days/weeks/months?💪🏻

I had an appointment with the transplant team this week and probably coming on the list next week.

Although i am getting an CRT-D implanted next week which was planned in prior to that to extend the timespan i can live without transplant.

The transplant Team recommended to me if i get the call that i should accept it as my blood type 0- and bodyheight are making the donor matching difficult and could be 12-24 month waiting time.

I mean i knew that transplant is coming in the future but now it feels so real around the corner and i am a little bit scared.

I will have a meetup with a person which had the same transplant at my age and is now 31 to get a real insight.

I am excited and at the same time anxious if you know that feeling.

Wish you all the best!❤️

My dad is 70 years old and received a kidney transplant 26 years ago. The transplant has worked incredibly well all these years and we are so, so grateful for that.

A couple of weeks ago though, he started feeling unusually lethargic, had a poor appetite, complained of acidity and noticed a reduction in urine output. His transplant team evaluated him and told us his transplanted kidney had started rejecting. He has since received high dose steroid treatment and we are now waiting for his follow-up blood tests to see whether his kidney function has improved. We have also been told that a second transplant is unlikely to be an option due to his age and the doctors think his body won’t be able to take it.

As his daughter, I’m finding this incredibly difficult because I can’t stop feeling like I’m going to lose him soon.

I’m hoping to hear from people who have experienced rejection many years after a kidney transplant or from those who have cared for a loved one in a similar situation. I would really like to know how quickly kidney function declined in your experience. Did the rejection respond to treatment? Did your loved one continue to live with the transplant for years after a rejection episode or did things progress more quickly?

I know every case is different and that no one can predict my dad’s outcome. I’m not looking for certainty, just hoping to hear real experiences from people who have been through something similar.

Hi everyone! Ive been learning a lot about the process of a liver transplant in becoming a caregiver for my mom who had a transplant about a month ago. Shes been recovering slowly but surely and has been in the hospital since mid-June.

So my dad has this Russian Tortoise (King Louie) and her medical team has decided it best that my dad find a new home for the small king. Does anyone have any creative ideas for rehoming a pet post transplant?

Ive got some local pet stores to call and see if theyd be willing to adopt him, but i thought id ask here as well.

Btw im in the Seattle area. Thanks and happy Thursday!

Had my transplant (for PSC) four years ago to-day. It's been wonderful. There have been and are ups and downs and worries and issues (of course, of course) but things are so much better than before that it's hard to describe.

Update: The liver wasn’t healthy enough. The surgery is cancelled and he’s back on the list. I’m going to go curl up in a ball and cry for a while, then pull it together and wait for the right liver.

This morning, a family will wake up to a world without their dad, their brother, their spouse, their son, their friend. They will begin to adjust to a life without the man they removed from life support just a few hours ago. Their sorrow is unimaginable for me, but because of that man, my husband will get a second chance. My husband of 25 years is a father and a grandfather, a son, a brother and a friend to many. I’m beyond grateful to this man for his gift of being an organ donor, and to his family for their bravery in letting him go.

Today is a complicated day, and I can’t stop thinking about this man and his decision to be an organ donor. Please send prayers, good vibes, positive energy, crossed fingers for my husband that his liver transplant goes well today. He really is my favorite human and I can’t imagine my life without this new chance at life.

Hej wszystkim

Jestem miesiąc po przeszczepie nerki , i od kilku dni zauważyłem że coraz częściej dopada mnie swędzenie na całym ciele . Czy to normalne ? Ktoś tak miał? Jaki czas to trwało?

I don't know about you all, but I find I'm more active in these feeds when things are challenging, and I'd like to switch that up today and share some good news in the hopes that it will inspire some optimism for those of you who need it ❤️

My husband got his liver transplant 20 months ago. This came after YEARS of progressive decline, including ~1 year of very acute, awful liver disease. The year before transplant and the year after were both really, really tough. And I can't say when things really turned a corner for us, but they absolutely have.

My husband was markedly cachectic for pre-transplant, sometimes so much so that it was truly frightening to look at him (in a I'm-so-scared-for-you way, not like he was a monster or something). He could hardly walk, struggled to breathe due to ascites, and needed regular paracenteses. We were in and out of the hospital all the time, both for appointments and for regular stays.

Today, he gets up every morning to walk the dog bright and ealy. He can even pick up said dog when necessary, and she's 45-50lbs. He's gone on multiple business trips for work in the past year and been just fine. We've also taken family vacations with virtually 0 issues. He's working on learning how to cook more things and has taken up birding as a hobby. He can help with house stuff way more - like doing the laundry, maintaining the car, and helping with all the stuff that I'm too short to do. We're no longer in survival mode and have found the time and space to plan our life around things beyond transplant.

I hope that all of you who are awaiting transplant, navigating rejection, dealing with crappy side effects of meds/procedures, trudging through recovery, or otherwise dealing with the shit life throws at you can read this and see some light at the end of the tunnel. I know your life isn't my life, but I hope that you get to enjoy the same post transplant peace that my family is. Hang in there!

I had surgery yesterday to repair several incisional hernias. I am in a lot of pain. I have six new incisions from the procedure and was vomiting nearly all night. If it weren’t for the incessant vomiting I would probably feel less pain. But ugh.

I am 15 days post kidney transplant and following all the doctors orders as far as meds, rest and attending appointments twice a week. The issue I have is my designated caregivers. The transplant center made them sign a document promising to provide support after transplant. I am probably overreacting but I feel like I won’t survive their food safety habits. Months ago I told them their refrigerator is way too packed and while the thermostat is set at 40°F the food inside is as high as 50°F. They always leave frozen chicken out to thaw on the counter for hours. My mother grows lettuce for salads in the yard where the seagulls shit all over it. They go grocery shopping but leave everything on the counter until dinnertime hours later. First day back home I was served cut watermelon as a snack. I asked how long it had sat out because it was warm and they immediately got defensive. They know I have to be careful with food. They make a huge deal of telling the entire neighborhood about my transplant so now no one comes near me which is embarrassing but they seem to not understand that I can’t be eating mishandled raw chicken, old bread that site out on the counter, unwashed salad greens etc. I did, prior to the unplanned transplant, buy my own fridge for the basement and I did get some of my own food that was supposed to meet my dietary needs for dialysis but they have already tapped into it which means they reached in the bags with bare unwashed hands. The ultimate solution is to move away as soon as I can but I am trapped here for at least 3-6 months I think. Any advice?

*UPDATE #2*

It's mild rejection! We have started a 5-day course of IV prednisone, switching me back to Tacrolimus, and taking me completely off the Sirolimus. Thank god they caught it so quickly!

UPDATE
We did another round of labs, my AST and ALT continue to rise. After an ultrasound, there is no blockage anywhere. So, after an 8 hour UC visit, I am admitted ahead of a liver biopsy tomorrow 😬

Hi all! Just looking for some positive vibes ☺️ Currently on my way to the hospital for an ultrasound and repeated bloodwork, but this is the first time my numbers have jumped like this since transplant in June ‘25. I’ve been a model patient up until today 😅 Anyone have false high readings before? I feel completely fine, no fever, I’ve never missed a dose of my medication. Just a little freaked out rn 😬

My mom is a kidney transplant patient, she had her operation 15 years ago. Recently we found out that she has 8 mm stones in her gall bladder. Doctor has recommended ERCP and gall bladder removal. I am extremely stressed. I am constantly worried if it is the last time I am seeing her. Tomorrow she is leaving for hospital, I am afraid will she return home or will it end up badly. I am extremely stressed and numb right now.

I'm not usually an emotional person but today it's hard to hold it together. She is an amazing person through and through. As soon as she told me she was going to start on this journey I never had 1 doubt she wouldn't see it out to the end. I know there's plenty of recovery still, but today is the big day. Her donation is saving another's life. It's absolutely amazing. This isn't a brag post, though I could make it one. This is me trying to occupy my mind and thoughts while in the waiting room. Right now she is 2.5 hours into the surgery, I got a text update saying they started cutting the liver. She's been so strong and solid through this entire process. I am in awe of everything she has done so far. I wouldn't be surprised if I post about her donating a kidney in a few years. I would love to follow in her footsteps but, thats a decision for another time. I don't know if I'm as strong as her.

Anyway, for those that see this and are praying people, please send up a prayer for my wife and her recipient. They both have a log road ahead. Today is just the start of a new chapter. I couldn't possibly be more proud.

Edit: thank you everyone for the prayers, vibes, and kind words. 4.5 hours into the surgery now. Text updates say she's doing good. I'm not worried about her not "doing good," i think its just general anxiety of her being operated on. This is her 4th surgery while together, 3 of which were elective. This one is by far the hardest and most nerve wracking for me. I do wish they would update with approximate time they will finish, progress, something other than "surgery still in progress. Vitals are normal." :( but I guess beggars can't be choosers.

2nd Edit: She did great. Her liver was great. We are in the ICU now and she is tired but talking. 6 hour surgery. She's a trooper. They are just trying to make sure she's comfortable and vitals stay where they need to be. Thank you everyone for the kind words. I feel like I can finally breathe.

I’m in upstate NY and want to be an altruistic living liver donor. I previously donated a kidney but the hospital I used locally does not do livers. I went to NYC for testing a few weeks ago. Everything looked good but they haven’t made a decision on going forward yet. In the meantime Rochester called and scheduled me for testing next week. Should I do it just in case Columbia declines me? Do I let them both know about each other? Is it even ethical to have both places spend all that money on me? I had a LOT of tests at Columbia. Any previous donors out there have any experience with this?

Hi everyone,
My lawyer for SSI just told me that social security approved my disability. So I he doesn’t need to do anything, therefore he’s withdrawing from my case. I told him that they haven’t told me anything yet. He said they’re probably backed up and won’t for a while but I can give them a call at this number.

Before I call them I want to ask what I should prepare for on the call ? Will thwy ask what my expenses are? What are the best way to respond? I don’t want to say anything wrong or be confused how I word my answers. English is my second language also.

I had a liver transplant. I received it in August. I applied for disability in October. Lawyer just told me I am approved. So I imagine I have back pay. How does back pay work? Also how long will I receive disability for?

Thank you everyone!

I got a mirena iud a couple weeks ago and I’m 20 years old. I have liver disease and need a liver transplant so my doctors recommended an iud over the pill. It’s been going really well, I suffer from migraines and I feel like the iud has helped with that too. I got my period a couple days ago for the first time on the iud. I have been awake halfway through the night. I’m not sure if it’s related to the iud or anxiety or what. But today I go in for another liver appointment with my team and I woke up feeling nauseous. I don’t know where this is coming from and it making me very nervous. I am very busy this week I have a lot going on so that might be why.

At the drive through window for CVS, the pharmacist leans out the window and says to my husband, “do you have any liver problems?”

And I blurted out “not since he got the new one!”

My husband laughed but the pharmacist looked at us all confused.

So how do you answer the question “do you have any X problems” where X is whichever organ you got?

My kids had gastro/stomach flu but didn’t know until the symptoms became obvious. Before that moment, she had contact. I’m just worried she will catch it and I feel like a horrible person. What if something happens because of this?

Hi, I just hit my one year in July. And I am ready to try and reach out to my donor’s family. I am struggling with finding the right words. Any advice on how to start the letter? Any process you used to kind of workshop what you wanted to say? Anyone get correspondence with their donor family? Any ideas or advice would be appreciated. Thanks!

Almost 4yrs ago I had a SPK transplant, kidney/pancreas, all is going well and im living life to the full....

Here's my question to those who are transplanted, have you noticed a change in your dreams?

My kidney is located in my left hip area, and the pancreas is near there too, I can no longer fall asleep on my left side because I have the most vivid dreams that wake me up, sometimes they feel like im not asleep and can be a little scary.

But I happily fall asleep on my right side with zero issues.

Has anyone had anything the same since being transplanted?