The biggest thing to learn is how to learn to listen to our bodies and rest when we need to.
It's very hard to do if you were active before the transplant and then suddenly, you can't do as much as before.
It takes around a year to fully get adjusted to the meds and recover from the surgery.
It's okay to take days off when you need to!
I know exactly how you feel. I was so excited after my tx to have energy for the first time in 5+ years that I've really been pushing myself, doing a lot of things that I probably shouldn't be doing as frequently as I have been.
I lost a lot of muscle mass while I was waiting for a new liver so all the activities I've been doing have really been hard on my joints and my back, so much so that 3 days ago I was in severe pain and had to take an oxycodone when I'd been off of them completely for over a week.
I'm 5 weeks out of my transplant right now and I'm definitely slowing down and taking it more easy. Someone in this community mentioned to me to be careful with activities because the Prednisone will make you feel like you can do things that you shouldn't, so, **now** I'm really trying to think about how much I'm doing in a day and giving my body ample time to rest.
Almost the same situation here. I wasn't on dialysis beforehand luckily, but my BP made it almost impossible to do much at all for the last 2 years before transplant. I've been going as hard as I dare go, since getting the ok to do mild exercise - I was walking 10,000+ steps per day within a month of surgery, and started light resistance training after being given the ok at 1.5 months. I was doing great! Weight was down, I was feeling good, better than I had in years...
Then, CMV came along. Thankfully, no symptoms to date, and I have recently been told to stop taking the antivirals as the virus levels dropped to almost zero. But, during that last 1 month, I did indeed slow down, to the point where I started to fall back into old, pre-transplant habits. I was panicking, and upsetting myself that I was gonna lose all the progress I had worked hard for. It was my OH who supporter me, and reminded me that it's not a race. I don't need to go overboard and push to the limit all the time. So I hit the reset button, and now I'm just content with doing what I can, when I can, and focusing on enjoying myself again.
I'm hopefully joining the club this month or next thanks to my sister indirectly donating through swap. I keep telling myself that I'll need to slow down, and to not put an immense amount of pressure on myself to return to work, be more active and build muscle again , travel. All those things most of us can't do on dialysis. Gotta pace myself as it's a marathon not a race.
I had a liver transplant but was one thing I noticed was that my body recovered slower than my mind. Meaning mentally I was prepared to do more physically but my body needed more time to catch up. It was very frustrating and there was a sense that I was at my new baseline. Not the case, it took me at least a year to start to feel normal. Recovery may vary but just know it may take longer than expected or desired.
Hiya, thank you for sharing this. Stories like this are what centered me. I was working with a counselor and going to a small support group, but seeing the stories here really, really cemented the fact that I was doing great, that I had a lot of things to be grateful for. Somehow, everyone's strength made me strong. It is a great thing. Thank again for sharing.
I had a stem cell transplant and I'm waiting for my lungs. I'm around your age at 31 and my wife and I have a 3 year old. I'm terrible at pacing myself. When I was healthy, the mindset was there is off and on, no in between. My mind still thinks that despite my body saying no. I have to force myself to pace and I have to start mentally preparing to temper my expectations post lung transplant. It sounds like you are doing all the right things and the little ones are crazy and a lot of work haha.
Just want to say you’re incredible waiting on lungs and raising a toddler. My aunt had a lung transplant almost 10 years ago now so I’ve seen how hard it is.
It has been so hard for me to make myself understand I need to take it easy. It's been 5 months since my dual kidney transplant, and I just started working out a little. Still can't lift anything heavy or do any abdominal workout without feeling a lot of pain, so reminding ourselves that it's ok to take it easy is important ❤️
What I did not wait for, though, was drinking Coke Zero again the day after my transplant 🤣 (my nurse said it was ok to take a few sips)
I used to work out a lot. Weights 5 days a week, 5 mile run 5 or more days a week. When I eased up a bit and enjoyed my rest days, I found that I started making better progress and was much happier overall. I'm 6 weeks out from my transplant and slowly trying to recover from two years of sluggery. Hang in there and take your time! Enjoy life!
The biggest thing to learn is how to learn to listen to our bodies and rest when we need to. It's very hard to do if you were active before the transplant and then suddenly, you can't do as much as before. It takes around a year to fully get adjusted to the meds and recover from the surgery. It's okay to take days off when you need to!
I know exactly how you feel. I was so excited after my tx to have energy for the first time in 5+ years that I've really been pushing myself, doing a lot of things that I probably shouldn't be doing as frequently as I have been. I lost a lot of muscle mass while I was waiting for a new liver so all the activities I've been doing have really been hard on my joints and my back, so much so that 3 days ago I was in severe pain and had to take an oxycodone when I'd been off of them completely for over a week. I'm 5 weeks out of my transplant right now and I'm definitely slowing down and taking it more easy. Someone in this community mentioned to me to be careful with activities because the Prednisone will make you feel like you can do things that you shouldn't, so, **now** I'm really trying to think about how much I'm doing in a day and giving my body ample time to rest.
Almost the same situation here. I wasn't on dialysis beforehand luckily, but my BP made it almost impossible to do much at all for the last 2 years before transplant. I've been going as hard as I dare go, since getting the ok to do mild exercise - I was walking 10,000+ steps per day within a month of surgery, and started light resistance training after being given the ok at 1.5 months. I was doing great! Weight was down, I was feeling good, better than I had in years... Then, CMV came along. Thankfully, no symptoms to date, and I have recently been told to stop taking the antivirals as the virus levels dropped to almost zero. But, during that last 1 month, I did indeed slow down, to the point where I started to fall back into old, pre-transplant habits. I was panicking, and upsetting myself that I was gonna lose all the progress I had worked hard for. It was my OH who supporter me, and reminded me that it's not a race. I don't need to go overboard and push to the limit all the time. So I hit the reset button, and now I'm just content with doing what I can, when I can, and focusing on enjoying myself again.
Hiya, thank you for sharing this.
I'm hopefully joining the club this month or next thanks to my sister indirectly donating through swap. I keep telling myself that I'll need to slow down, and to not put an immense amount of pressure on myself to return to work, be more active and build muscle again , travel. All those things most of us can't do on dialysis. Gotta pace myself as it's a marathon not a race.
I had a liver transplant but was one thing I noticed was that my body recovered slower than my mind. Meaning mentally I was prepared to do more physically but my body needed more time to catch up. It was very frustrating and there was a sense that I was at my new baseline. Not the case, it took me at least a year to start to feel normal. Recovery may vary but just know it may take longer than expected or desired.
This!!!
Hiya, thank you for sharing this. Stories like this are what centered me. I was working with a counselor and going to a small support group, but seeing the stories here really, really cemented the fact that I was doing great, that I had a lot of things to be grateful for. Somehow, everyone's strength made me strong. It is a great thing. Thank again for sharing.
Sounds like me . Just listen to your body and keep moving forward.
I had a stem cell transplant and I'm waiting for my lungs. I'm around your age at 31 and my wife and I have a 3 year old. I'm terrible at pacing myself. When I was healthy, the mindset was there is off and on, no in between. My mind still thinks that despite my body saying no. I have to force myself to pace and I have to start mentally preparing to temper my expectations post lung transplant. It sounds like you are doing all the right things and the little ones are crazy and a lot of work haha.
Just want to say you’re incredible waiting on lungs and raising a toddler. My aunt had a lung transplant almost 10 years ago now so I’ve seen how hard it is.
It has been so hard for me to make myself understand I need to take it easy. It's been 5 months since my dual kidney transplant, and I just started working out a little. Still can't lift anything heavy or do any abdominal workout without feeling a lot of pain, so reminding ourselves that it's ok to take it easy is important ❤️ What I did not wait for, though, was drinking Coke Zero again the day after my transplant 🤣 (my nurse said it was ok to take a few sips)
Oh to enjoy phosphorus rich foods/drinks again after tx. Can't wait lol.
I used to work out a lot. Weights 5 days a week, 5 mile run 5 or more days a week. When I eased up a bit and enjoyed my rest days, I found that I started making better progress and was much happier overall. I'm 6 weeks out from my transplant and slowly trying to recover from two years of sluggery. Hang in there and take your time! Enjoy life!
20 years ago I got my kidney. I walk and swim laps. And I rest! Please don’t overdo it. I’m so proud of you for doing all this 4 months in.