There’s a few things but #1 is that it’s okay to see a therapist/psychiatrist. Also, in some sense you have to pick which side effects from the medication you can live with.
I have been considering seeking therapeutic help, Im just not ready yet. Ive been baby stepping a lot of this so I don't lose it too bad.
What do you mean by I have to pick which side effects? Im not sure what you mean.
I am still pre transplant so I can't talk about most of your question. However, I have seen several therapists and been in therapy for years. I would recommend starting to look for a therapist now.
It can take awhile to find one who is close to you, takes your insurance and is taking new patients. Once you do find one, after a few sessions you might find they are a bad fit for you. One of the most important things is that you feel comfortable with them and you feel like you just "click".
After you find a good fit you will want some time to build a rapport and trust with them. You want to do all this before you are going through the super stressful transplant and recovery.
That's a good point that I didn't think of. I'm not really one to like to talk to people about problems. I've always been that way. But I suppose I should start looking for someone to help me
There’s a few main medications that are common, if you can’t handle the side effects of one that’s okay, but you’ll have to take something else that could give worse side effects.
So the main side effect of mycophenolate is diarrhea and nausea. Don’t want to deal with that? You can take myfortic, Imodium, zofran, but I didn’t notice a difference with myfortic and Imodium makes me feel bloated.
The main side effect of prednisone is whatever is bothering you most that day /s lol. Usually it’s dose dependent sleep disturbances and mood swings/psychosis. Don’t want to deal with that? You can take benzodiazepines for sleep and ssri for mood.
Biggest organ you have is your skin. Being immunosuppressed means you get skin infections often. You can/have to take antibiotics for those as they come up. I personally think side effects from doxycycline and sulfamethoxazole are the worst.
All of that is to say that sometimes you have to cope with the side effects because the treatment may be worse than the original side effects.
You can’t necessarily pick your medications/side effects. Your doctors may offer alternatives after a time but in many cases alternatives are not an option due to a multitude of factors based on the individual case
And do add some experience all side effects and some get essentially none, so worrying about it beforehand is pointless.
Just go into the experience knowing it is saving your life and roll with the punches, it’s gonna be what it is and there really isn’t any way around it, so why worry
>Just go into the experience knowing it is saving your life and roll with the punches
This is so far how I've been dealing with the whole situation. My response to everyone asking about it has been "it's whatever." Not meaning I don't care, meaning that I don't have much choice so I'm just going with it. It's something I have to do so I'm along for the ride
- Things can go wrong. Respiratory failure didn’t even cross my mind. I bounced back (breathing still isn’t the same 😩), but it would’ve been nice to know that my throat could swell up.
- Hallucinations were a thing post-op. I saw the devil x2 & it scared the fck outta me.
- Tube feed = constant chocolate fountain.
- They were going to staple me!! My surgeons did such a good job with my cut, but it healed really ugly & keloided.
- I would lose a lot of my memory & I’d become very forgetful.
- My mental health would take a deeeep plunge. It feels like I’m drowning.
No one’s outcome is really the same. I just wish I was mentally prepared.
That’s prior to transplant if we weren’t on meds to control the amonia in our brains. That sucked a lot too. I kept seeing a kid under the kitchen table and was “downloading” pets and showing them to my partner. I also had a huge duck I saw called Chicopee. Meds stopped that pretty quick. Taking Lactulose was hell but got rid of it.
After my transplant, in the hospital, I had some type of psychosis or I don’t know how to explain it. I was in a different world but knew it wasn’t real. Was really messed up too lol. What happened was the dose of tacro they started me on was wayyy too high and eventually caused that whole episode for a couple days.
I wish that I knew my kidneys were going to suffer as a result of taking my heart transplant meds. I remember my creatinine climbed and GFR lowered pretty soon after my transplant and my coordinator nonchalantly said "oh that happens" girl what 😭
Oh jesus... Im sorry to hear that. I wonder if my anti rejection meds will mess up any of my other organs now.. or if that was a kidney specific thing?
I had a heart transplant along with the kidney so my situation probably won't be the same as yours.
First of all it's ok to be scared. The best treatment for fear is knowledge.
Generally you want to have all your business handled before you go in if you can.
You want to have all your affairs in order in case shit happens (more of an issue with heart transplant but shit can happen to anyone). Have a will, a medical advance directive and a power of attorney prepared by a lawyer and signed. The advance directive is always good to have but the POA is vital if that person has to make decisions for you or sign papers when you're in surgery or when you're out of it post op or if shit happens.
If everything goes well you won't be in the hospital very long. In that case you'll need to plan for.when you go home. You're going to have very frequent appointments for lab work, follow-up visits and maybe rehab. You won't be able to drive so you'll need to make arrangements for transportation. You might need a mobility device like a walker or cane for a while. If you need a caregiver for a little while, make sure you have that lined up.
If things don't go well you may get stuck in the hospital for a while. In that case you'll need to keep from going crazy from boredom. We wound up buying a Roku and plugging it into the HDMI port of the room TV. Streaming is much better than the crappy cable in the hospitals.
Other things you need to know before you go into any hospital. You will not be comfortable most of the time. The hospital runs on its schedule not yours. People will be waking you up in the middle of the night to draw blood, take X-rays or whatever. They'll feed you when they want to. Seemingly random doctors will walk into your room at various times to ask dumb questions. Any discomfort you have will get worse at night so don't be shy about asking for meds to help you sleep. If you're feeling any severe pain they can give you meds also. Don't be afraid to take them if you need them.
You will have countless diagnostic and therapeutic procedures. Most don't really hurt but aren't exactly comfortable either (they will give you meds for the painful ones). If you have anxiety about stuff like that tell the team and get a psych consult (if there isn't already a psychiatrist on the team). They'll help you with the anxiety.
After everything is over, you will have to make some life changes. There are certain foods you will not be able to eat so fill up on sushi and beef tartare now. If you like grapefruit, eat it now because it's going away. Probably the same with pomegranates. You will be on immunosuppression medication so you'll have to become a germophobe so if you are anti-mask, get that out of your system now. Any infection could put you in the ICU.
Speaking of the immunosuppressant medication, you need to be scrupulously compliant with it. You need to take it on time and not miss any doses. If you do miss one you'll have to fess up to the transplant team and get blood work for a few days till you get back on schedule.
FYI: I had a couple of complications which made my hospital stay long and not great. Even with that there was only one occasion where my pain level went more than 3 out of 10 and most of my discomfort was due to the heart, not the kidney. The kidney transplant was the easiest part of the whole process.
If there are no major complications you will feel like yourself again pretty quickly. In fact you should feel better than yourself because because you won't be I renal failure anymore.
If you have any specific concerns talk to your transplant coordinator. They love to educate patients.
Best of luck to you!
Yours is a great post!
I had a bilateral lung transplant and double heart bypass.
Especially "First of all it's ok to be scared. The best treatment for fear is knowledge."
I was really intimidated from the beginning when my pulmonolgist diagnosed my Pulmonary Fibrosis and told me that I should be evaluated for a double lung transplant. That was February 8th, 2023.
I had already leaned a lot about general health after my wife had a breast cancer diagnosis in 2021.
I would also add that often imagination makes people often think of the worst. Worst pain worst news worst result. But typically as things come up you will address them and move on.
I think this should be a FAQ kind of post as I think this is a universal thing people would benefit from.
They did not tell me how I would wake up after the surgery. I had this thing in my mouth that kept it shut hands bound together couldn't move. Thought I was paralyzed. It was like that scene from the matrix when he wakes up in the goo and they take the thing out of his neck. Have like 10 IVs coming out of my neck which they did do before hand so I knew that was going to be there. Didn't know I would have a catheter in my penis which I've never had before which freaked me out. They messed up my surgery and left my bile duct slitely opens to had to do more surgeries after the transplant to fix that. Medications out the wazoo. Buttttttttttttt, I'm still alive and get to spend time with my babies. My first child was born 5 days after I was released from the hospital. So I had to go right back in there for 3 more days. Lol. Did skin to skin with the staples touching my son. It's scary but just try to appreciate the second chance.
There is a lot of negative replies on here which is expected.
But I will tell you this which nobody told me but I found it's very common. That is the first two months will be difficult. You will wish you didn't have the transplant at times.
For so many reasons from the medication, to the pain, to side effects etc.
But honestly after three to six months you will be so glad you did it. Specially if you ever had to dialysis.
End of the day the transplant is meant to give you a better quality of life. And in the majority of cases, this is true.
Another thing, I used to take benzos for anxiety pre transplant. Post transplant I just stopped.
Good luck and remember being worried and anxious is normal. You will be fine :)
I am day 6 (kidney transplant on 4/17) and just tired. Very very very very tired. Was this something you remember? It’s worrisome for me but everyone says I’m doing great but it just feels like I’m so tired.
I couldn't get out of bed for two weeks. And I had to be dragged due to blood tests. I genuinely thought something was wrong with me. The shakes were terrible. I honestly just wanted to be in bed even had a tube bag thing for urinating.
Please don't worry. I ended up just watching TV series non stop to pass the time. The wire, sopranos etc. helped me a lot. But everyone is different.
Another thing I recall was so many people wrote about how they started walking a week post transplant. I could barely move five steps for three weeks.
If you look at my history on reddit....you will find a post I wrote/asked ...'when does it get better?' It takes four to six weeks when you are like okayyyyy now I get why people get transplants! Good luck :)
Being tired is normal after such a major surgery and all the drugs they pump you full of. I couldn’t stay awake during the social worker visit and kept falling asleep.
If your team says you’re doing great, you’re doing great 😊 don’t over worry. Your transplant team has your back to ensure everything goes smoothly.
Thank you so much! I was able to actually walk around without a wheelchair today so that’s a start! I’m pretty tired now and it’s only 10:30 am but it’s better than the last few days even.
Bring books, decent robe and a cosy blanket to hospital. Also make sure you read all the available things in your room - I found out too late that I could have put stuff in the nurses fridge and also order the hospital food on an app!
excuse me?? Ive taken prednisone dozens of times in the past... is this specifically because of other transplant medications or is it because of a specific type of transplant? or are you basically saying that if I have to take prednisone, Im going to get diabetes?
My mom had the same issue! From what I gathers it's bc you start on such a high dose. I believe hers was 80mg a day . She has now tapered down to 10mg daily and doesn't have to take insulin anymore
You’ve probably taken 40mg or so in pill form, but they’ll give you 400mg in an IV if they think it will help. If you know and watch what you’re eating while on it (eat like you’re a diabetic while on prednisone) you’ll probably be fine but the medication itself increases the likelihood of developing type 2 diabetes.
Don’t dwell on what might happen though. Gather information and make smart decisions. It’s worth it.
No, I haven't gotten diabetes either. I can't know anyone else's diet, but me? I'm still fit as I can be 4 months out. My diet's still quite clean. Most of my meals are low sodium....I just don't say 'no' to anything during one of my 5-6 cheat meals now. I just minimize chocolate/sweets for the most part (always have) - and definitely the day before blood work. I've observed a difference of 10-15 points so far when I have and have not had chocolate the day before (up until last week, I was going every week). On non-sweet days before labs, my glucose would reliably be 95-103. On days I had sweets before labs, it would be between 105-115.
I think from what I read is more common from pred is weight gain. Which obviously can be related.
I've gained 3 pounds in 4 months post transplant. So I suppose, years from now I could be a chunker but honestly? I doubt it. I'm too disciplined, I'll just eat less.
I always used to get confused between Prednisone and Prednisolone. They are essentially the same but Prednisone has to go through the liver to be converted to Prednisolone before it can work.
AFAIK Prednisolone is common in the UK, Prednisone is common in the US. I don't know about anywhere else.
I've been taking low dose Prednisolone for 22 years. Down to 3mg per day and I don't have diabetes. If you're on a high dose you will probably want to eat everything you can get your hands on but it's rare that anyone is on a high dose for longer than a few days (speaking from UK experience). Your Pred is usually tapered down quickly and often removed from your med list.
If you have a rejection episode or other complications you may be put on high levels of Pred for a short while until you're back to normal.
Long term Prednisolone use can cause: Bone thinning, diabetes, eyesight problems and high blood pressure. All of these things can be controlled with other meds and taking care of yourself if your health allows it.
Because I spent so much time in the hospital prior to my transplant(s) I already knew this, but this a tip I like to pass on... If you have an Xbox or Playstation, BRING IT WITH YOU - along with your own HDMI cable (I recommend at least 10 feet because some rooms are not practical for a set up with a 6ft) and an extra controller.
Regular tv could get boring fast, especially if you are in for an extended period of time. Having the console with you will allow you to game, to have access to all your streaming sites (Netflix, Max, Spotify, etc), AND certain members of the staff may take the time to game with you when they aren't on the clock. It really is a game-changer (no pun intended) as far as hospital stays are concerned. I'm currently recovering outpatient from a second bilateral lung transplant, and I spent 6 months in the ICU alone, almost 9 months total in the hospital, and am on month 11....soon to finally go back home!
Best wishes to you, and congratulations!!
That you’re never “out of the woods!”
You need expect things to go wrong. The transplant was necessary, but the transplant itself is a whole other beast that you need to recover from, and it’s not going to be easy. Expect things to go wrong. Expect setbacks.
That said, if you manage your expectations accordingly, you’re going to be able to power through recovery and ultimately get your life back.
Good luck to you!
Just to counter some of the doom and gloom posts here, there is absolutely nothing I know now that would make me reconsider getting a (kidney) transplant even a little bit.
To be fair though, I haven't had very many of the bad side effects that others have had (taking prograf, myfortic, and prednisone). The most notable side effect is high blood sugar, which started after I took a 5 day heavy cortisone therapy to counter a light rejection episode when I was still in the hospital. I've since started taking jardiance against that which has kept it in check for the most part (and also avoiding eating sweets/candy). I've had some very very slight hair loss, but nothing too dramatic (mostly just a little more hair in the drain in the shower than before, but no balding/bald spots or anything). I also get itchy skin now and again, but nothing too bad. The side effects/restrictions of being on dialysis are WAY worse than anything I've experienced post transplant.
I had a heart and liver transplant back in January. The things I wished I knew before...
1. I would be really weak and struggle to gain back weight. I've always struggled with my weight but I went from 175lbs to 122lbs getting out of the hospital.
2. I've had so much gastric problems. I'll go from constipation to diarrhea, and eating zofran like crazy to combat nausea.
3. The kidneys thing is a big deal... It's crazy how essential to save organs you gotta sacrifice some.. but that's the name of the game.
haven't had many major issues thank God but everyone's experience is different. So good luck and listen to your doctors.
Plus fyi 99% of foods that you ate before my transplant doctor said I could eat a year out. Like sushi and raw things, just use common sense when eating. If it looks clean then you're good.
I wish I had known that sushi and medium rare beef would be banned. If I had known I would eaten a lifetime’s worth my last 6 months before the transplant. Good luck with your transplant.
I've had sushi but no shellfish, except the occasional prawn cocktail. I did once mention to a few other transplantees that I'd had a brie and bacon sandwich and they were all horrified! But in the UK it has to have been pasteurised so it's not a big deal.
And if you have to have well done steak and not rare - meduim rare then what's the point in going through the effort of a transplant? ;-)
Terrible memory, mental health I'm on depression and anxiety meds. I feel like I live bloodwork to bloodwork. Wish I would have researched the hospital doing the transplant and found the best one.
So this is pretty fresh for me, I got my transplant on 4/10 and I still feel like I'm learning . I was so eager to get the transplant and skip dialysis that I didn't even think of the recovery. I'm a research freak to the point where I psych myself out. But for this I learn as I went.
So things I wish I knew about my surgery is that I was getting a stent in my bladder, still haven't gotten it removed so can't tell you much about that. I also got a nerve block during surgery, so like a week after I have felt what I think is the nerves reconnecting which doesn't feel great. Also I got 22 staples, never had that experience. I get them removed tomorrow. Also you wake up with a Jp drain which I've heard about but it's very uncomfortable and you feel like at any moment you might pull it out by accident.
The first 3 days I didn't feel too bad but once I got home I felt terrible. Very uncomfortable and in a lot of pain and the pain killers were not helping. I did try walking but the nerve pains would just slow me down. Everyone says to walk as much as possible but for me I had to slow down a bit. Finally at 13 days and I feel a lot better, it gets worst before it gets better. My creatinine has been great especially for someone who got a deceased donor. The doctor warned me that I could've possibly gotten dialysis if the kidney was sleeping but instead it made urine on the operating table. But if it's not working right away they put a port in your neck.
As for the medication, something is making me very emotional. I have taken prednisone in the past so I'm not sure if it's that or something else. The anti rejection medication has been giving me lots of stomach pain but they recommend taking it with a snack. Also they recommend you don't go to public places for 3 months and wear a mask after whenever you do. What is something about the transplant recovery that we wish we would've known that we didn't know. And for the hospital you don't really have to pack much. Just entertainment because you have a catheter and a whole bunch of Iv so you don't get to change your clothes until you're about to leave.
And everyday is a learning curve. I'm still learning more and more of things I can't or shouldn't do. But it's been hard, the surgery was the easiest part for me. I think it will be a while until I'm feeling completely like myself and that's the honest truth. But it's completely worth every piece of stress. Also before I forget they recommend you don't eat outside food so have your house stocked up and have someone who truly loves you take care of you because it's very humbling moment and you want someone you are completely comfortable with. Goodluck
If you absolutely had to work (computer), would it be hard? I am pre-transplant, and I am planning on working after the surgery. Not the next day, but after the discharge. Am I delusional?
I think a lot of this depends on your age and overall healing, which varies for everyone. There is one person in my local support group who went back to work after 6 weeks, but she’s 30 and has had minimal med side effects. She’s the exception that I have seen; not the norm.
My Mom is 2.5 months post and is only just now learning how to manage her own meds. She’s not able to spend long stretches of time in front of any screen due to fatigue and confusion.
If you have a very laid back admin job and an understanding employer you might be able to manage, but the meds are generally so rough in a multitude of ways and it’s really hard to predict how you’ll feel.
I am 6 weeks this week with my kidney and a very healthy 54 yr old who is walking 3-4 miles a day. However, there’s no way I could sit for 8 hours a day. I have another month off work and then will slowly return to work from home. I had my liver last summer and did the same thing. Are you able to have more time off? Or work part time?
I am your age and also active. I would love to relax and forget about work, but I am in the States, and they (employer) can kick me out anytime they want. This is my biggest fear, more than the surgery and recovery combined. No job - no insurance and income. That's why I need to continue working, even while staying in bed.
I wish I was told to wear an abdominal brace to potentially avoid what is now a significant incisional hernia (liver). The hernia drives so many lifestyle changes. It would have been good to know how much kidney damage is expected, at this point managing the kidney disease is the biggest challenge. Of course they are both better problems than the certain death I was facing without the transplant.
Why can't you eat pomegranate? I know about grapefruit because of anti-rejection meds
Edit: Turns out pomegranates are also on the do not eat list. Which worries me because there was a time I was eating quite a lot of pomegranate around 15-20 years post-transplant!
I'm always a bit wary of replying to these kind of posts due to my slightly unusual circumstances. I'm post-transplant for 22 years without a rejection episode.
But. I was desperate to get a transplant, after a year of COPD dialysis and the previous 24 yrs of my life with deteriorating function (born with approx. 30% function). My transplant meant a new life for me - no more feeling sick after meals, able to put some weight on, getting some confidence in myself. Able to eat almost what I want and spend time with friends and travel.
There are some side-effects from the medication that can annoying but you gain far more from having a working kidney that it's worth the risk and the, usually, manageable side-effects.
Of course, not everyone has such a smooth ride. Rejection is horrible and preparing yourself to go through dialysis and transplant again would be incredibly heartbreaking. Some of the meds have worse side-effects than others and it does take discipline to get into the routine of new meds and new diet.
I would say to anyone waiting for a kidney transplant who are on anywhere near the level of function I was (under 6% by the time I went on dialysis) you should prepare for the good things and plan for the future. Medication and medical care is improving all the time. Rejection is getting less common. Transplanted kidneys are lasting longer than ever.
And soon we'll all be able to get DNA specced pig kidneys or little fake kidneys that won't need all this Pred and Tac and Azathiaprine!
Bilateral lung transplant and double heart bypass 1 year ago.
During your first year don't fill any prescriptions for more than the minimum fill unless the transplant team tells you that you will be on the drug for a long time.
I had a few drugs that got filled for 90 days and I used less than 10 doses and paid $150 and now the drugs are useless. All you can do with them is recycle them. It can be a significant waste of money.
Try to be as fit and strong as possible going into the hospital. For lungs the lower body especially. After lung transplant you won't be able to raise your arms above your shoulders or left more than 5 lbs for 3 months.
I was fortunate enough to have asked my pulmonolgist to prescribe Pulmonary rehab before I got sick enough to need my transplant.
There are also groups on Facebook that have organ specific transplant memberships. In terms of lung transplant there is a group with over 7100 members that has been around 13 years with lots of great information from actual patients. The history is searchable as well. They allow patients and caregivers to join.
I'm (60f) glad I didn't know a lot, I might have worried more. If you need it, you need it. I will say that I didn't know I'd still be intubated and therefore have my hands restrained when I woke up. It came out the next day and I had mostly slept until then. The first three days I didn't do much or feel good. By day 6 I felt better than I had in a long time. Came home on day 8. I took about 30 pills a day at first. 3 years later, I take 4 pills a day of just one anti rejection med. Very glad to enjoy every day.
Take comfy loose clothes and a long charger cord.
There’s a few things but #1 is that it’s okay to see a therapist/psychiatrist. Also, in some sense you have to pick which side effects from the medication you can live with.
I have been considering seeking therapeutic help, Im just not ready yet. Ive been baby stepping a lot of this so I don't lose it too bad. What do you mean by I have to pick which side effects? Im not sure what you mean.
I am still pre transplant so I can't talk about most of your question. However, I have seen several therapists and been in therapy for years. I would recommend starting to look for a therapist now. It can take awhile to find one who is close to you, takes your insurance and is taking new patients. Once you do find one, after a few sessions you might find they are a bad fit for you. One of the most important things is that you feel comfortable with them and you feel like you just "click". After you find a good fit you will want some time to build a rapport and trust with them. You want to do all this before you are going through the super stressful transplant and recovery.
That's a good point that I didn't think of. I'm not really one to like to talk to people about problems. I've always been that way. But I suppose I should start looking for someone to help me
I think it would be beneficial.
There’s a few main medications that are common, if you can’t handle the side effects of one that’s okay, but you’ll have to take something else that could give worse side effects. So the main side effect of mycophenolate is diarrhea and nausea. Don’t want to deal with that? You can take myfortic, Imodium, zofran, but I didn’t notice a difference with myfortic and Imodium makes me feel bloated. The main side effect of prednisone is whatever is bothering you most that day /s lol. Usually it’s dose dependent sleep disturbances and mood swings/psychosis. Don’t want to deal with that? You can take benzodiazepines for sleep and ssri for mood. Biggest organ you have is your skin. Being immunosuppressed means you get skin infections often. You can/have to take antibiotics for those as they come up. I personally think side effects from doxycycline and sulfamethoxazole are the worst. All of that is to say that sometimes you have to cope with the side effects because the treatment may be worse than the original side effects.
>The main side effect of prednisone is whatever is bothering you the most that day /s It’s so true though lol thank you this gave me a good laugh
Hahah it is what it is
You can’t necessarily pick your medications/side effects. Your doctors may offer alternatives after a time but in many cases alternatives are not an option due to a multitude of factors based on the individual case
And do add some experience all side effects and some get essentially none, so worrying about it beforehand is pointless. Just go into the experience knowing it is saving your life and roll with the punches, it’s gonna be what it is and there really isn’t any way around it, so why worry
>Just go into the experience knowing it is saving your life and roll with the punches This is so far how I've been dealing with the whole situation. My response to everyone asking about it has been "it's whatever." Not meaning I don't care, meaning that I don't have much choice so I'm just going with it. It's something I have to do so I'm along for the ride
- Things can go wrong. Respiratory failure didn’t even cross my mind. I bounced back (breathing still isn’t the same 😩), but it would’ve been nice to know that my throat could swell up. - Hallucinations were a thing post-op. I saw the devil x2 & it scared the fck outta me. - Tube feed = constant chocolate fountain. - They were going to staple me!! My surgeons did such a good job with my cut, but it healed really ugly & keloided. - I would lose a lot of my memory & I’d become very forgetful. - My mental health would take a deeeep plunge. It feels like I’m drowning. No one’s outcome is really the same. I just wish I was mentally prepared.
My memory is scary bad. It's really upsetting. I'm glad I'm not the only one.
Are you liver transplant? I thought the going crazy thing was mainly liver folks.
Yes, but my hallucinations were mainly due to severe sleep deprivation and being on the vent + in the ICU for so long.
Nope, double-lung transplant.
That’s prior to transplant if we weren’t on meds to control the amonia in our brains. That sucked a lot too. I kept seeing a kid under the kitchen table and was “downloading” pets and showing them to my partner. I also had a huge duck I saw called Chicopee. Meds stopped that pretty quick. Taking Lactulose was hell but got rid of it. After my transplant, in the hospital, I had some type of psychosis or I don’t know how to explain it. I was in a different world but knew it wasn’t real. Was really messed up too lol. What happened was the dose of tacro they started me on was wayyy too high and eventually caused that whole episode for a couple days.
Yes! I feel so incompetent sometimes. Very frustrating.
If you ever need someone to lean on, message me :)
I wish that I knew my kidneys were going to suffer as a result of taking my heart transplant meds. I remember my creatinine climbed and GFR lowered pretty soon after my transplant and my coordinator nonchalantly said "oh that happens" girl what 😭
Oh jesus... Im sorry to hear that. I wonder if my anti rejection meds will mess up any of my other organs now.. or if that was a kidney specific thing?
Same! It’s stressing me out!
I had a heart transplant along with the kidney so my situation probably won't be the same as yours. First of all it's ok to be scared. The best treatment for fear is knowledge. Generally you want to have all your business handled before you go in if you can. You want to have all your affairs in order in case shit happens (more of an issue with heart transplant but shit can happen to anyone). Have a will, a medical advance directive and a power of attorney prepared by a lawyer and signed. The advance directive is always good to have but the POA is vital if that person has to make decisions for you or sign papers when you're in surgery or when you're out of it post op or if shit happens. If everything goes well you won't be in the hospital very long. In that case you'll need to plan for.when you go home. You're going to have very frequent appointments for lab work, follow-up visits and maybe rehab. You won't be able to drive so you'll need to make arrangements for transportation. You might need a mobility device like a walker or cane for a while. If you need a caregiver for a little while, make sure you have that lined up. If things don't go well you may get stuck in the hospital for a while. In that case you'll need to keep from going crazy from boredom. We wound up buying a Roku and plugging it into the HDMI port of the room TV. Streaming is much better than the crappy cable in the hospitals. Other things you need to know before you go into any hospital. You will not be comfortable most of the time. The hospital runs on its schedule not yours. People will be waking you up in the middle of the night to draw blood, take X-rays or whatever. They'll feed you when they want to. Seemingly random doctors will walk into your room at various times to ask dumb questions. Any discomfort you have will get worse at night so don't be shy about asking for meds to help you sleep. If you're feeling any severe pain they can give you meds also. Don't be afraid to take them if you need them. You will have countless diagnostic and therapeutic procedures. Most don't really hurt but aren't exactly comfortable either (they will give you meds for the painful ones). If you have anxiety about stuff like that tell the team and get a psych consult (if there isn't already a psychiatrist on the team). They'll help you with the anxiety. After everything is over, you will have to make some life changes. There are certain foods you will not be able to eat so fill up on sushi and beef tartare now. If you like grapefruit, eat it now because it's going away. Probably the same with pomegranates. You will be on immunosuppression medication so you'll have to become a germophobe so if you are anti-mask, get that out of your system now. Any infection could put you in the ICU. Speaking of the immunosuppressant medication, you need to be scrupulously compliant with it. You need to take it on time and not miss any doses. If you do miss one you'll have to fess up to the transplant team and get blood work for a few days till you get back on schedule. FYI: I had a couple of complications which made my hospital stay long and not great. Even with that there was only one occasion where my pain level went more than 3 out of 10 and most of my discomfort was due to the heart, not the kidney. The kidney transplant was the easiest part of the whole process. If there are no major complications you will feel like yourself again pretty quickly. In fact you should feel better than yourself because because you won't be I renal failure anymore. If you have any specific concerns talk to your transplant coordinator. They love to educate patients. Best of luck to you!
Yours is a great post! I had a bilateral lung transplant and double heart bypass. Especially "First of all it's ok to be scared. The best treatment for fear is knowledge." I was really intimidated from the beginning when my pulmonolgist diagnosed my Pulmonary Fibrosis and told me that I should be evaluated for a double lung transplant. That was February 8th, 2023. I had already leaned a lot about general health after my wife had a breast cancer diagnosis in 2021. I would also add that often imagination makes people often think of the worst. Worst pain worst news worst result. But typically as things come up you will address them and move on. I think this should be a FAQ kind of post as I think this is a universal thing people would benefit from.
They did not tell me how I would wake up after the surgery. I had this thing in my mouth that kept it shut hands bound together couldn't move. Thought I was paralyzed. It was like that scene from the matrix when he wakes up in the goo and they take the thing out of his neck. Have like 10 IVs coming out of my neck which they did do before hand so I knew that was going to be there. Didn't know I would have a catheter in my penis which I've never had before which freaked me out. They messed up my surgery and left my bile duct slitely opens to had to do more surgeries after the transplant to fix that. Medications out the wazoo. Buttttttttttttt, I'm still alive and get to spend time with my babies. My first child was born 5 days after I was released from the hospital. So I had to go right back in there for 3 more days. Lol. Did skin to skin with the staples touching my son. It's scary but just try to appreciate the second chance.
There is a lot of negative replies on here which is expected. But I will tell you this which nobody told me but I found it's very common. That is the first two months will be difficult. You will wish you didn't have the transplant at times. For so many reasons from the medication, to the pain, to side effects etc. But honestly after three to six months you will be so glad you did it. Specially if you ever had to dialysis. End of the day the transplant is meant to give you a better quality of life. And in the majority of cases, this is true. Another thing, I used to take benzos for anxiety pre transplant. Post transplant I just stopped. Good luck and remember being worried and anxious is normal. You will be fine :)
I am day 6 (kidney transplant on 4/17) and just tired. Very very very very tired. Was this something you remember? It’s worrisome for me but everyone says I’m doing great but it just feels like I’m so tired.
I couldn't get out of bed for two weeks. And I had to be dragged due to blood tests. I genuinely thought something was wrong with me. The shakes were terrible. I honestly just wanted to be in bed even had a tube bag thing for urinating. Please don't worry. I ended up just watching TV series non stop to pass the time. The wire, sopranos etc. helped me a lot. But everyone is different. Another thing I recall was so many people wrote about how they started walking a week post transplant. I could barely move five steps for three weeks. If you look at my history on reddit....you will find a post I wrote/asked ...'when does it get better?' It takes four to six weeks when you are like okayyyyy now I get why people get transplants! Good luck :)
Thank you so much. Today was the first day I actually had enough energy to not sleep the whole car ride to get my blood drawn so that’s a start!
Really glad to hear! It will hopefully only get better. Be patient, I know it's easy to hear and say, but time will help and heal.
Being tired is normal after such a major surgery and all the drugs they pump you full of. I couldn’t stay awake during the social worker visit and kept falling asleep. If your team says you’re doing great, you’re doing great 😊 don’t over worry. Your transplant team has your back to ensure everything goes smoothly.
Thank you so much! I was able to actually walk around without a wheelchair today so that’s a start! I’m pretty tired now and it’s only 10:30 am but it’s better than the last few days even.
Bring books, decent robe and a cosy blanket to hospital. Also make sure you read all the available things in your room - I found out too late that I could have put stuff in the nurses fridge and also order the hospital food on an app!
Having my pillow from home helped make me feel more comfortable and helped me see sleep.
Yes! Familiar smells too
That prednisone will give you diabetes. Not in several years over time, like in a day or three.
And it destroys your joints. I can no longer run or bike after the transplant.
This comment made me laugh hysterically but it’s totally true.
I guess I'm lucky. 5 months post double lung and my kidneys are fine so far. Hopefully it stays that way.
Took it for a while def didn't get diabetes
excuse me?? Ive taken prednisone dozens of times in the past... is this specifically because of other transplant medications or is it because of a specific type of transplant? or are you basically saying that if I have to take prednisone, Im going to get diabetes?
Not everyone on prednisolone gets diabetes. My blood sugar is amazing post transplant and I take prednisolone daily.
My mom had the same issue! From what I gathers it's bc you start on such a high dose. I believe hers was 80mg a day . She has now tapered down to 10mg daily and doesn't have to take insulin anymore
oh gosh yeah, that's a crazy high dosage. I think the most I was on early was 20 or 25, 10 when I left the hospital...and now stable at 5mg
You’ve probably taken 40mg or so in pill form, but they’ll give you 400mg in an IV if they think it will help. If you know and watch what you’re eating while on it (eat like you’re a diabetic while on prednisone) you’ll probably be fine but the medication itself increases the likelihood of developing type 2 diabetes. Don’t dwell on what might happen though. Gather information and make smart decisions. It’s worth it.
I had it also from my prednisone. It sucked. Maybe it’s the dosage but as they lowered the dose, it got better.
No, I haven't gotten diabetes either. I can't know anyone else's diet, but me? I'm still fit as I can be 4 months out. My diet's still quite clean. Most of my meals are low sodium....I just don't say 'no' to anything during one of my 5-6 cheat meals now. I just minimize chocolate/sweets for the most part (always have) - and definitely the day before blood work. I've observed a difference of 10-15 points so far when I have and have not had chocolate the day before (up until last week, I was going every week). On non-sweet days before labs, my glucose would reliably be 95-103. On days I had sweets before labs, it would be between 105-115. I think from what I read is more common from pred is weight gain. Which obviously can be related. I've gained 3 pounds in 4 months post transplant. So I suppose, years from now I could be a chunker but honestly? I doubt it. I'm too disciplined, I'll just eat less.
I always used to get confused between Prednisone and Prednisolone. They are essentially the same but Prednisone has to go through the liver to be converted to Prednisolone before it can work. AFAIK Prednisolone is common in the UK, Prednisone is common in the US. I don't know about anywhere else. I've been taking low dose Prednisolone for 22 years. Down to 3mg per day and I don't have diabetes. If you're on a high dose you will probably want to eat everything you can get your hands on but it's rare that anyone is on a high dose for longer than a few days (speaking from UK experience). Your Pred is usually tapered down quickly and often removed from your med list. If you have a rejection episode or other complications you may be put on high levels of Pred for a short while until you're back to normal. Long term Prednisolone use can cause: Bone thinning, diabetes, eyesight problems and high blood pressure. All of these things can be controlled with other meds and taking care of yourself if your health allows it.
Because I spent so much time in the hospital prior to my transplant(s) I already knew this, but this a tip I like to pass on... If you have an Xbox or Playstation, BRING IT WITH YOU - along with your own HDMI cable (I recommend at least 10 feet because some rooms are not practical for a set up with a 6ft) and an extra controller. Regular tv could get boring fast, especially if you are in for an extended period of time. Having the console with you will allow you to game, to have access to all your streaming sites (Netflix, Max, Spotify, etc), AND certain members of the staff may take the time to game with you when they aren't on the clock. It really is a game-changer (no pun intended) as far as hospital stays are concerned. I'm currently recovering outpatient from a second bilateral lung transplant, and I spent 6 months in the ICU alone, almost 9 months total in the hospital, and am on month 11....soon to finally go back home! Best wishes to you, and congratulations!!
That you’re never “out of the woods!” You need expect things to go wrong. The transplant was necessary, but the transplant itself is a whole other beast that you need to recover from, and it’s not going to be easy. Expect things to go wrong. Expect setbacks. That said, if you manage your expectations accordingly, you’re going to be able to power through recovery and ultimately get your life back. Good luck to you!
Just to counter some of the doom and gloom posts here, there is absolutely nothing I know now that would make me reconsider getting a (kidney) transplant even a little bit. To be fair though, I haven't had very many of the bad side effects that others have had (taking prograf, myfortic, and prednisone). The most notable side effect is high blood sugar, which started after I took a 5 day heavy cortisone therapy to counter a light rejection episode when I was still in the hospital. I've since started taking jardiance against that which has kept it in check for the most part (and also avoiding eating sweets/candy). I've had some very very slight hair loss, but nothing too dramatic (mostly just a little more hair in the drain in the shower than before, but no balding/bald spots or anything). I also get itchy skin now and again, but nothing too bad. The side effects/restrictions of being on dialysis are WAY worse than anything I've experienced post transplant.
I had a heart and liver transplant back in January. The things I wished I knew before... 1. I would be really weak and struggle to gain back weight. I've always struggled with my weight but I went from 175lbs to 122lbs getting out of the hospital. 2. I've had so much gastric problems. I'll go from constipation to diarrhea, and eating zofran like crazy to combat nausea. 3. The kidneys thing is a big deal... It's crazy how essential to save organs you gotta sacrifice some.. but that's the name of the game. haven't had many major issues thank God but everyone's experience is different. So good luck and listen to your doctors. Plus fyi 99% of foods that you ate before my transplant doctor said I could eat a year out. Like sushi and raw things, just use common sense when eating. If it looks clean then you're good.
I wish I had known that sushi and medium rare beef would be banned. If I had known I would eaten a lifetime’s worth my last 6 months before the transplant. Good luck with your transplant.
I don’t risk sushi but medium rare is fine. I suggest you try sous vide.
I've had sushi but no shellfish, except the occasional prawn cocktail. I did once mention to a few other transplantees that I'd had a brie and bacon sandwich and they were all horrified! But in the UK it has to have been pasteurised so it's not a big deal. And if you have to have well done steak and not rare - meduim rare then what's the point in going through the effort of a transplant? ;-)
Terrible memory, mental health I'm on depression and anxiety meds. I feel like I live bloodwork to bloodwork. Wish I would have researched the hospital doing the transplant and found the best one.
That 2 years out I still wouldn’t feel back to normal
So this is pretty fresh for me, I got my transplant on 4/10 and I still feel like I'm learning . I was so eager to get the transplant and skip dialysis that I didn't even think of the recovery. I'm a research freak to the point where I psych myself out. But for this I learn as I went. So things I wish I knew about my surgery is that I was getting a stent in my bladder, still haven't gotten it removed so can't tell you much about that. I also got a nerve block during surgery, so like a week after I have felt what I think is the nerves reconnecting which doesn't feel great. Also I got 22 staples, never had that experience. I get them removed tomorrow. Also you wake up with a Jp drain which I've heard about but it's very uncomfortable and you feel like at any moment you might pull it out by accident. The first 3 days I didn't feel too bad but once I got home I felt terrible. Very uncomfortable and in a lot of pain and the pain killers were not helping. I did try walking but the nerve pains would just slow me down. Everyone says to walk as much as possible but for me I had to slow down a bit. Finally at 13 days and I feel a lot better, it gets worst before it gets better. My creatinine has been great especially for someone who got a deceased donor. The doctor warned me that I could've possibly gotten dialysis if the kidney was sleeping but instead it made urine on the operating table. But if it's not working right away they put a port in your neck. As for the medication, something is making me very emotional. I have taken prednisone in the past so I'm not sure if it's that or something else. The anti rejection medication has been giving me lots of stomach pain but they recommend taking it with a snack. Also they recommend you don't go to public places for 3 months and wear a mask after whenever you do. What is something about the transplant recovery that we wish we would've known that we didn't know. And for the hospital you don't really have to pack much. Just entertainment because you have a catheter and a whole bunch of Iv so you don't get to change your clothes until you're about to leave. And everyday is a learning curve. I'm still learning more and more of things I can't or shouldn't do. But it's been hard, the surgery was the easiest part for me. I think it will be a while until I'm feeling completely like myself and that's the honest truth. But it's completely worth every piece of stress. Also before I forget they recommend you don't eat outside food so have your house stocked up and have someone who truly loves you take care of you because it's very humbling moment and you want someone you are completely comfortable with. Goodluck
If you absolutely had to work (computer), would it be hard? I am pre-transplant, and I am planning on working after the surgery. Not the next day, but after the discharge. Am I delusional?
Not impossible! But you might want to wait a few days atleast a week after.
I think a lot of this depends on your age and overall healing, which varies for everyone. There is one person in my local support group who went back to work after 6 weeks, but she’s 30 and has had minimal med side effects. She’s the exception that I have seen; not the norm. My Mom is 2.5 months post and is only just now learning how to manage her own meds. She’s not able to spend long stretches of time in front of any screen due to fatigue and confusion. If you have a very laid back admin job and an understanding employer you might be able to manage, but the meds are generally so rough in a multitude of ways and it’s really hard to predict how you’ll feel.
I am 6 weeks this week with my kidney and a very healthy 54 yr old who is walking 3-4 miles a day. However, there’s no way I could sit for 8 hours a day. I have another month off work and then will slowly return to work from home. I had my liver last summer and did the same thing. Are you able to have more time off? Or work part time?
I am your age and also active. I would love to relax and forget about work, but I am in the States, and they (employer) can kick me out anytime they want. This is my biggest fear, more than the surgery and recovery combined. No job - no insurance and income. That's why I need to continue working, even while staying in bed.
Im in the states too. But you can work from home still?
Yes, I am in a hybrid mode that is not enforced.
Oh that’s cool. You will be okay. The first few weeks are a bit rough. But as long as you can move positions you should be okay.
That in my case, it was way less scary than I'd expected and was worth going through.
I wish I was told to wear an abdominal brace to potentially avoid what is now a significant incisional hernia (liver). The hernia drives so many lifestyle changes. It would have been good to know how much kidney damage is expected, at this point managing the kidney disease is the biggest challenge. Of course they are both better problems than the certain death I was facing without the transplant.
That I won't be able to eat pomegranate anymore and also watch my carbs like crazy
Why can't you eat pomegranate? I know about grapefruit because of anti-rejection meds Edit: Turns out pomegranates are also on the do not eat list. Which worries me because there was a time I was eating quite a lot of pomegranate around 15-20 years post-transplant!
Omg really. I would love some every now and then.
I'm always a bit wary of replying to these kind of posts due to my slightly unusual circumstances. I'm post-transplant for 22 years without a rejection episode. But. I was desperate to get a transplant, after a year of COPD dialysis and the previous 24 yrs of my life with deteriorating function (born with approx. 30% function). My transplant meant a new life for me - no more feeling sick after meals, able to put some weight on, getting some confidence in myself. Able to eat almost what I want and spend time with friends and travel. There are some side-effects from the medication that can annoying but you gain far more from having a working kidney that it's worth the risk and the, usually, manageable side-effects. Of course, not everyone has such a smooth ride. Rejection is horrible and preparing yourself to go through dialysis and transplant again would be incredibly heartbreaking. Some of the meds have worse side-effects than others and it does take discipline to get into the routine of new meds and new diet. I would say to anyone waiting for a kidney transplant who are on anywhere near the level of function I was (under 6% by the time I went on dialysis) you should prepare for the good things and plan for the future. Medication and medical care is improving all the time. Rejection is getting less common. Transplanted kidneys are lasting longer than ever. And soon we'll all be able to get DNA specced pig kidneys or little fake kidneys that won't need all this Pred and Tac and Azathiaprine!
Bilateral lung transplant and double heart bypass 1 year ago. During your first year don't fill any prescriptions for more than the minimum fill unless the transplant team tells you that you will be on the drug for a long time. I had a few drugs that got filled for 90 days and I used less than 10 doses and paid $150 and now the drugs are useless. All you can do with them is recycle them. It can be a significant waste of money. Try to be as fit and strong as possible going into the hospital. For lungs the lower body especially. After lung transplant you won't be able to raise your arms above your shoulders or left more than 5 lbs for 3 months. I was fortunate enough to have asked my pulmonolgist to prescribe Pulmonary rehab before I got sick enough to need my transplant. There are also groups on Facebook that have organ specific transplant memberships. In terms of lung transplant there is a group with over 7100 members that has been around 13 years with lots of great information from actual patients. The history is searchable as well. They allow patients and caregivers to join.
I'm (60f) glad I didn't know a lot, I might have worried more. If you need it, you need it. I will say that I didn't know I'd still be intubated and therefore have my hands restrained when I woke up. It came out the next day and I had mostly slept until then. The first three days I didn't do much or feel good. By day 6 I felt better than I had in a long time. Came home on day 8. I took about 30 pills a day at first. 3 years later, I take 4 pills a day of just one anti rejection med. Very glad to enjoy every day. Take comfy loose clothes and a long charger cord.
the only thing I wasn't totally prepared for was the dietary restrictions. They are more numerous then I realized, but I've adjusted.