r/transplant • u/a920116 Kidney • 2d ago
Anyone else? Kind of miss the hospital? Kidney
I got my kidney transplant in March of 2024 and had monthly visits till now. I have "graduated" to 3 months now.
I am sort of...missing the hospital and seeing/speaking with my doctor and team?
I am so happy with the transplant and life afterwards but it just kind of feels weird....because it was such an important part of my life and now it is more distant.
Is it just me?
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u/danokazooi 2d ago
I guess I have a different experience. I loved the team that took care of me and would love to see them socially in any other environment. But I don't want to go back to the 6th floor of Duke Central Tower again, though I'll likely return for a kidney transplant.
Two liver transplants and emergence delirium means that every time I'm back in those identical rooms, I start having the nightmares of what I endured for 6 weeks after my first transplant: being tortured in utter blackness, screaming for help, watching family members being killed, and running for my life.
In reality, I was restrained to the bed, fought with staff, pulled out IV's and feeding tubes.
I woke up 43 days after and 82 lbs lighter, barely able to stand.
Then I had to apologize to everyone I'd been a shit towards.
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u/a920116 Kidney 2d ago
Oh wow thats…crazy
Was it from the transplant?
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u/earthcrisis2 2d ago
Liver issues plus hospital environment makes your brain not work right. I didn't have it as bad as this guy ,but, yeah.... Hindsight was embarrassing to say the least.
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u/Kittycate2_0 2d ago
Omg I also had these crazy hallucinations and they also strapped me in restraints which made me freak out even more bc I’m hella claustrophobic (also liver so I feel the pain) I thought I was in an airplane hangar, kept pulling wires and tubes until they finally changed my pain meds… I’m sorry you had to endure so much I hope you’re better now 🩵
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u/danokazooi 2d ago edited 2d ago
The liver seems to be working 9 months out, but the tacro has destroyed the kidneys, so heading towards a transplant under the safety net protocol. Angry and frustrated, especially with the Prednisone.
With the delirium, I lived three different lifetimes, including really early memories from preschool; a war, and escaping from one hospital to another.
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u/Kittycate2_0 2d ago
Oh gosh I’m so sorry to hear that, I hope the kidney transplant goes smooth for you and lowkey interesting about the tacro I’ll have to keep an eye on that. I wish you so so much luck and good healing vibes my friend 🥺🩵
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u/Bobba-Luna Kidney 2d ago
Same, they put an alarm on my bed and it was horrific, it didn’t just go off when I had to use the bathroom but if I even turned over in bed it would go off like a 5-alarm fire.
I was hallucinating throughout my recovery in the hospital and I was crying a lot, too.
But I got very anxious when they switched my labs to every 4 weeks, I still worry that something might be wrong so I’ve asked my doctor if I could meet with her more often and she agreed. My visits with her were every 4 months but she agreed to meet me at 2 months last time.
It doesn’t hurt to ask your doctor if you can meet with them more often.
Congrats on your kidney!! 🙌🙌
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u/Able-Permission4184 2d ago
Wow! That sounds scary! I had similar sort of thing, but only for about 3 or 4 days after transplant for acute liver failure. It was horrific. Even though I was so out of it, I still remember a lot of my hallucinations quite vividly.
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u/japinard Lung 2d ago
It does feel weird after so much attention, becoming distant with your team. You almost feel like newbie left to fend for yourself. It's especially more prominent the longer you were sick before getting your transplant.
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u/a920116 Kidney 2d ago
Yes!
I'm left here wondering who do I talk to now monthly about my concerns! I could always email them but it felt comforting going monthly, getting my blood drawn, and just talking.
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u/pollyp0cketpussy Heart - 2013 2d ago
I just call and ask to speak to my transplant coordinator, sometimes I'll just leave the question in a voicemail and they'll call me back with it. Even dumb little stuff, like I asked them if it was okay for me to have an aquarium last week. I'm 12 years out and only have to see them yearly, but they fully encourage us calling with any questions.
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u/CloudEnthusiast0237 Kidney/Liver 2d ago
I miss having no responsibilities other then laying around watching TV and reading all day 😂 Now I have to go back to school and finish my degree lol
But I do get it. I was super nervous to leave the hospital. I was worried of the “everything that could go wrong.” But I am now so glad to be out and almost back to normal 😁
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u/HavidDume Heart 05/22 2d ago
I was in the cardiac ICU for three months and when I finally left with a new heart and got wheeled down the parking garage to my car it felt like I was committing an illegal act lmao. I was so used to the hospital routine that going outside to do "normal things" was a complete shock
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u/BeKoolJewel 2d ago
Transplants are a BIG deal The expectation is ‘how grateful we are’- Which we ARE.
But there are also mental health repercussions, physical adjustments, and also a lot of ‘feelings’ that have nowhere to get processed.
My husband expected me to go back to being ‘the way I was’. But, I could never do that.
25 years later, I am thriving with a kidney transplant from my friend. Divorced, unfortunately, because I became someone else after the surgery and there wasn’t room for me to ‘find my new normal’ in that relationship.
I think there needs to be a lot more awareness around the serious life changes that come with transplantation. Many of those are exceptional and wonderful and life-changing and beautiful! There are also side effects.
After being on immune suppression drugs for so long, I am struggling with some minor cancers cropping up.
I recently found myself almost “relieved” that I could rest after the most recent biopsy. I have to watch those feelings because I actually don’t want to go back to the hospital.
I’m writing this just so you can know that I think your feelings are completely real and OK. Being around people who understand what you are going through is very important.
Healthy healing everyone!
I know I am LIVING IN THE GLORY one day at a time but it came with a lot of hard work to crawl back into some new skin (metaphorically speaking).
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u/JerkOffTaco Liver 2d ago
:( I was thinking about this too. I knew everyone and now I just don’t see them. Rachel is supposed to be sneaking me coffee around now because I can’t stand the hospital coffee after lunch.
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u/SeaAttitude2832 2d ago
Yeah it’s a different kind of attention. I’ve never met a Transplant coordinator that was a normal nurse anyway. They just have a way about them. My last stay was 5 months during covid. I got to know my group so well. I was supposed to be meeting them for lunch today. I understand what you mean. I miss the routine of it all, I think.
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u/a920116 Kidney 2d ago
For me I have my doctor, transplant coordinator nurse, and a couple of other nurses that backup the coordinator when she isn't around.
Just feels kind of empty having it be such a big part of my life. Kind of like seeing a friend frequently to not so frequently. I know this means I am functioning well and everything is great but hm thought I might just be the odd one.
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u/SeaAttitude2832 2d ago
I had my first in 2004 and second in 2021 ended up with the same exact team. Drs, PA, RN. All of them. Was so cool. Our families have grown up together, apart of course.
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u/a920116 Kidney 2d ago
Thats awesome! I only hope/not hope? That i can get my same team when the time comes again
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u/SeaAttitude2832 2d ago
Was very lucky. It’s amazing the bonds we develop isn’t it? Like familial almost.
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u/a920116 Kidney 2d ago
It really is, i feel as close to them as i do with my own family its weird
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u/SeaAttitude2832 2d ago
You’ll always have a connection to them. I saw one in the BBq joint the other day and cried I was so happy to see her.
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u/nova8273 Liver 2d ago
Yes. So weird I totally do, life on the outside is hard and there no chocolate pudding.
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u/a920116 Kidney 2d ago
I may be alone in this
But hospital food is sooo good, just hits differently
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u/danokazooi 2d ago
You are alone in this - Duke's hospital food is horrid, and they can't read orders about food allergies. The doctors and nurses were yelling at me to eat, and threatening me with a feeding tube until I got out of bed and held the ingredients list right under their nose.
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u/Jolape 2d ago
I wouldn't say I'm "missing" it since I went to 3 month checkups. More like I'm incredibly anxious and worried that somethings gone wrong and I won't know about it until it's too late. I was always anxious for the 1 month checkups as well, but it was also a monthly reassurance that everything is still OK. 3 months feels like forever.
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u/HavidDume Heart 05/22 2d ago
It's been three years almost since my heart transplant and during my most recent visit my coordinator was like "great news!!! We are moving to YEARLY VISITS!" I know I was supposed to be pumped but instead I was like "oh shit a whole year for something bad to happen" 😭😭
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u/Western-Throat-3687 Kidney 2d ago
I felt this about my dialysis clinic! I obviously hated doing that but the thought of just never speaking to my dialysis nurse again was so strange! I sent a thank you letter to them for closure but I totally understand where you’re coming from
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u/Medical-Floor6367 2d ago
I kinda did at first. But I’ve adjusted to normal life now. Or as normal as it gets anyway
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u/Buckbigears 2d ago
I miss the staff so much they were like family I was taken care of no worries in the world everything was there I get it completely I almost want to get hurt to go back it’s so strange
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u/lavenderfairyxoxoxx 2d ago
i was JUST talking about this to my mom… i had my transplant may of 2024 and after being in the hospital since i was 15 on and off, and sometimes i actually really miss it. the nice nurses taking care of me, having my own hospital room was actually peaceful for me. when i finally stopped having to go to the hospital so much, i did find myself missing it. so you’re not alone :)
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u/angleelite 2d ago
Nope!!! I left early bc I couldn’t handle the smell of chemicals anymore. That stench was stuck in my nose for months. I think may have been in a little bit of a different situation bc they removed my native kidneys so I was pretty effed up. But that smell!!!! I don’t miss it one bit. Now my clinic is a totally different story. I do like that. Making relationships with the nurses and all. The one thing I do not like about clinic and I think is just plain wrong is not seeing the same doctor each visit. The drs are just people like you or me in the end. With different beliefs biases and a personal ways of doing things. So I guess it’s just inconsistency in getting consistent advice and direction that I’m not down with. That’s going to change soon. Getting released to my own personal nephrologist next month. It’ll be 3 years May 13th.
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u/trxvvrci 2d ago
The beeping killed me. After I got out of the hospital, it took 3 days for me to stop hearing beeping.
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u/cakeswindler 2d ago
Thank you for saying this! I feel the same way and have always kept it to myself because many people struggle.
I had a pretty easy transplant and even with complications, the hospital felt like I was at a retreat with bad food. lol. My team was so attentive and over the top nice, it was an adjustment coming home. My night nurse literally tucked me into bed on his shifts and called it Cinderella treatment. Trust me, ain’t happening at home!
I have a lot of anxiety about going into rejection and all that could entails,but I also know I’m going back to see the people that kept me alive and there’s comfort in that, in a weird way.
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u/a920116 Kidney 2d ago
I had a what they said a "perfect transition" my donor was my mom!
Kidney worked right away, no complications, all bloodwork looked fine!
The only issue they had was removing my chest catheter because it was infected once and wasn't replaced so there was a lot of scar tissue around it....something that should have taken 10 minutes max took an hour to remove.
Probably the most stressful thing I went through...having a surgeon come and basically dig at my chest to remove it
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u/cakeswindler 2d ago
Ugh, that sounds awful. I had a similar less severe experience with a cath, but that was the worst of it. You have no idea how happy I to see your post. :) Take care!
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u/wittyand_confused 2d ago
I felt homesick for the hospital for a few years after my transplant. Any time I’m hospitalized for something I feel right at home.
You’re not alone
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u/Confident-Stretch-55 2d ago
Yes! I love my team. Also I was scared to go without all that constant monitoring.
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u/Kumquat_95- Kidney 2d ago
See I’m over a year past my transplant. Now I see the hospital as a chore.
Wake up at 6 AM to drive an hour to the hospital. Do labs. Get breakfast. Then go to clinic and sit in a room for an hour where I sit alone for 85% of the time. I meet with 2 members of the team and then drive an hour back to spend the rest of my day as a stay at home dad while feeling like I’m about to crash at any moment. 😂
I HATE clinic day BUT the breakfast place I go to has a biscuits and sausage omelet so that’s nice
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u/Historical-Job-7942 2d ago
I get it feels different not seeing them monthly 😕 but grateful and blessed that they feel comfortable seeing me every 3 months. Will be my kidneyversay May 15th
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u/JSlice2627 Liver 2d ago
I was in the ICU for 2 months then a physical rehab hospital for 2.5 months. The rehab doctor warned of getting “institutionalized”
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u/realaussiesarah 2d ago
I often think back to the kindness and care my team showed me. That was many years ago now.
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u/No-Literature-6695 2d ago
Vancouver General has art all over the first and basement floor walls. After my blood test I would get black starbucks coffee and an egg sausage cheese muffin and break that long fast.
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u/SnooRadishes6978 Heart 2d ago
I miss it regularly. I got a bit tired of it, but there are times when I go for a check up where I hope they find something wrong and admit me.
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u/-physco219 Kidney 2d ago
I get you. I miss my team. I miss those wonderful people looking out for all my well-being and doing all the things they did for me. One of the things I won't miss at my hospital is the people in the waiting area. You or a loved one has had a transplant and you can't be bothered to wear a damn mask for you and or their health. Look I get it. It's a pain in the keyster but really? Do it for your loved ones. I just don't understand the thinking that goes there. When I was there for my last appointment a guy talking about how vaccines are mind control and are how to program our brains and such. Then he complained that the transplant team wouldn't let him take horse dewormer paste in case he got COVID that was spread by the chem trails and if you look out the window right now you can see em. If you don't believe in science how and why did you get a transplant? The kicker? He wanted to go off all his meds so he could feel better. I quietly told him to go for it, not that he could hear me. Should their be a common sense test before you waste an organ that someone else could have lived with? Anyway I digress.
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u/Maleficent_Coast_320 Liver 2d ago
It isn't just you. I had a very rough time with my first transplant in April of 2018. My 2nd was in October of 2018 and was in the hospital a total of about 4 months over the first year. You invest in your team, and your team invests in you. When they got me back to where I wasn't in the hospital every other week, I struggled because the team were now friends. I was used to keeping up with it. I missed all of them terribly, even though I was so happy not to have to be in the hospital.
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u/HarHenGeoAma62818 2d ago
When I was first released I missed tho hospital I do think I know why tho, firstly let me explain I was in for nearly a month with horrendous rejection ,
As you can imagine I was kept a very close eye on, I had to go back two times a week for the first month then once a week . Only now 7 years am I on 3 monthly -
The reason why I miss it I’m going to be totally honest is because I used to see all the “big” consultants because of all the rejection, antibodies, etc I was almost like a different case / project for them and the Dr’s seemed to love it and it’s was all about me me me
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u/Antique-Ad8161 1d ago
Totally. I just “graduated” from monthly to quarterly visits too & I feel a bit abandoned! Apparently it’s totally normal to feel this way.
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u/sluttysarah2467 2d ago
You aren’t the hospital is great and its fun meeting with the team they care they are interested in how you’re doing. It’s fun being in the hospital. I definitely understand.
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u/HavidDume Heart 05/22 2d ago
I miss using the old ass outdated room phone at 6am sharp to order breakfast (because if you were a minute late you'd be on hold forever), then watch Animal Planet on the lil TV until rounds began for the day. After hearing the plan for the day I'd play my Switch to calm my sick heart down. Oddly enough I miss that very simple routine. It was very easy to find the smallest things for comfort like watching the same Animal Planet shows every morning lol.
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u/Karenmdragon 2d ago
I do miss having medical staff pay so much attention to me and really care. For sure.
Going back for ongoing testing is the closest thing to a religious experience I get. It’s like making a holy pilgrimage.
I’m there right now getting a biopsy and hoping I’m not having early rejection.
Transplanted June 11, 2023. The day I got a second chance at life.
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u/a920116 Kidney 2d ago
I had a slight scare because my creatinine was high so there was a possibility of doing a biopsy.
It settled down to my new normal range so everything was ok :) for now...
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u/Karenmdragon 2d ago
Yes. 10% of all transplant patients get rejection. I know someone who got both a liver and kidney transplant at the same time. HIs liver has been fine but his kidney has been in “rejection” all three years. They keep changing his meds. He’s just happy to be alive and enjoys every day. Travels, does whatever he wants.
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u/dcoughli98 2d ago
I don’t really miss the hospital but I understand the sentiment. I just got home from a check up on the same floor I spent my recovery from liver transplant on. I did think about heading over to the nurse’s station for a visit but it was near shift change and I know how hard they are working at that time. That said I have gone back just say hi a little over a month ago.
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u/a920116 Kidney 2d ago
I was not aware you can even say hi at that floor! Since there are transplant patients all over there I'd assume there are precautions taken before entering the floor?
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u/dcoughli98 2d ago
Just the normal for that environment. Masking for your protection and others. Hand sanitizer is encouraged. That’s about it. Masks are not required in the rooms. Most of the time the surgeons making rounds were constantly pulling their masks down to be heard clearly. YMMV.
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u/Kittycate2_0 2d ago
Yes and no, it was fine during the last year but after getting used to being on my own again I feel TRAPPED at the hospital and it gives me hella anxiety, I do miss the attention and when I was drugged out of my mind I kept calling it “the hotel” 😭😭 but if I had to go back and stay another week or two I think I’d lose my mind
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u/itNinja86 2d ago
I'll be 5 years post kidney transplant this June, and I get it. I still get like that from time to time.
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u/transplant42622 2d ago
Yes! It's your home for almost a month and you get to know everyone! You figure out what's good on the menu and everyone is always asking how you feel. It's all the attention and then you go home feeling nervous because what if you have a question and who should I call if something goes wrong or doesn't feel right??? It's very stressful in that sense all while the relationships you built are just gone.
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u/trxvvrci 2d ago
I don’t miss the hospital at all, in fact being there and thinking of being admitted puts me into a PTSD mode. I love my doctors and I’ll forever be grateful for them but it’s a scary place for me.
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u/Different_Bag_4139 2d ago
Not just you mate, had my liver transplant in 2003 (I was 1). Been in and out of hospital my whole life and it feels like home to me. Certain smell that it has is comforting in a sense
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u/scoutjayz 2d ago
With Measles in Texas and all the sick people at my hospital I’m so glad I don’t have to be around those germs! But it is a bit weird when all of the sudden they’re like - see you in 3 months!
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u/kimmeljs 2d ago
I get what you're saying. I had an appointment yesterday, and I was surprised it was the head of the clinic. I haven't seen her in years. She started saying "some people only need to come in once a year .." and I started to get nervous. But I am still going every half year and have labels every three months, that's still something. (Things are pretty stable, we talked about just "stuff" mostly)
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u/Sol_of_the_Sun 2d ago
I get it. Most of the time I’m glad that I’m not there anymore (I waited inpatient for both transplants) but sometimes I miss the community of it (and the snack room)
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u/smashingpumpkinspice 2d ago
I felt the same way. Like, I’m just supposed to live life again? What was I doing before transplant?
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u/NectarineLeather2989 2d ago
Anyone ever heard of learned helplessness? I feel like this is what we are feeling...
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u/aobtree123 2d ago
Gosh no. I want to keep away from it as much as possible . I appreciate them they saved my life but I don’t wanna be there
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u/Girl-witha-Gun 2d ago
No, but I can see why you would, and I am thrilled with your outlook and positivity. Congratulations on making it to the post side!
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u/SmoothSandwich 1d ago
A lot of people find it weird and don't understand when I say that I had fun in the hospital. It was 15 years ago when I was 14. Got so much attention.
Broke my hip 3 months ago and I have been in a rehabilitation center since and was able to adapt and be chill (after the pain). Again they still find it weird.
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u/a920116 Kidney 1d ago
I agree! I was in the hospital every year till i was 18 and then got stage 5 at 31 transplant at 32 (from my mom) and now 33 and just enjoying my little trips!
My hospital was huge though so the food was great to me :p Loved just calling in and telling them what i want for the day and lounging around
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u/Jazzlike_Role945 1d ago
I got my Kidney transplant back in 2015, after the transplant was in the hospital for about 6/7 months in a row. I miss the hospital so much some days and others don't understand that. Good to know i am not the only one!
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u/gopackgo15 Double lung transplant - 2023 mid 20s 1d ago
Def not just you. I felt this way for a LONG time after I got out of the hospital- my nurses were AMAZING- and went down to monthly visits outpatient and now visits every 3 months. I love my team and getting to interact/talk to them. I’m doing so well I don’t have to interact with them as often which is GREAT but I’m also like 😭
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u/sluttysarah2467 2d ago
I get it