Side effects from meds after TX

[brogerson]

Hi everyone I have had a double Lung tX on December 14, 2008 at Toronto General Hospital in Canada. I have had some annoying side effects from the medications. The Cyclosporin is causing tremors in my hands and Legs, I also feel tired all the time (but I am not sleeping very well) I have been told it take up to 6months for the side effects to go away.

Also I have gained some weight back from my hospital stay and but cant seem to get my strength back.

I know it is a slow process and just wondering how long it took for people to get back to their lives

Thanks

 

[brogerson]

Hi everyone I have had a double Lung tX on December 14, 2008 at Toronto General Hospital in Canada. I have had some annoying side effects from the medications. The Cyclosporin is causing tremors in my hands and Legs, I also feel tired all the time (but I am not sleeping very well) I have been told it take up to 6months for the side effects to go away.

Also I have gained some weight back from my hospital stay and but cant seem to get my strength back.

I know it is a slow process and just wondering how long it took for people to get back to their lives

Thanks

 

[brogerson]

Hi everyone I have had a double Lung tX on December 14, 2008 at Toronto General Hospital in Canada. I have had some annoying side effects from the medications. The Cyclosporin is causing tremors in my hands and Legs, I also feel tired all the time (but I am not sleeping very well) I have been told it take up to 6months for the side effects to go away.

Also I have gained some weight back from my hospital stay and but cant seem to get my strength back.

I know it is a slow process and just wondering how long it took for people to get back to their lives

Thanks

 

[brogerson]

Hi everyone I have had a double Lung tX on December 14, 2008 at Toronto General Hospital in Canada. I have had some annoying side effects from the medications. The Cyclosporin is causing tremors in my hands and Legs, I also feel tired all the time (but I am not sleeping very well) I have been told it take up to 6months for the side effects to go away.

Also I have gained some weight back from my hospital stay and but cant seem to get my strength back.

I know it is a slow process and just wondering how long it took for people to get back to their lives

Thanks

 

[brogerson]

Hi everyone I have had a double Lung tX on December 14, 2008 at Toronto General Hospital in Canada. I have had some annoying side effects from the medications. The Cyclosporin is causing tremors in my hands and Legs, I also feel tired all the time (but I am not sleeping very well) I have been told it take up to 6months for the side effects to go away.
<br />
<br />Also I have gained some weight back from my hospital stay and but cant seem to get my strength back.
<br />
<br />I know it is a slow process and just wondering how long it took for people to get back to their lives
<br />
<br />Thanks

 

[Buxxfan]

Hey Bob,
I'm 32 yrs old and had my double lung tx about 2 yrs ago. I have never been on Cyclosporin but I have always been on Prograf which causes trembling. It definitely subsides alot over time. Like you, I started gaining weight as soon as I got discharged. I started post-tx rehab about 3 weeks out from leaving the hospital. I did the treadmill, lifted some weights (very light at first and not over my head), and arm exercises. This really helped get my energy and strength back. I also had trouble sleeping sometimes and I had a previous prescription (before my tx) of Ativan and my doc said to use that right before bedtime and it definitely helped me sleep better... Congrats on your transplant! If you have any other questions you can always pm me.

Take Care,
Kevin

 

[Buxxfan]

Hey Bob,
I'm 32 yrs old and had my double lung tx about 2 yrs ago. I have never been on Cyclosporin but I have always been on Prograf which causes trembling. It definitely subsides alot over time. Like you, I started gaining weight as soon as I got discharged. I started post-tx rehab about 3 weeks out from leaving the hospital. I did the treadmill, lifted some weights (very light at first and not over my head), and arm exercises. This really helped get my energy and strength back. I also had trouble sleeping sometimes and I had a previous prescription (before my tx) of Ativan and my doc said to use that right before bedtime and it definitely helped me sleep better... Congrats on your transplant! If you have any other questions you can always pm me.

Take Care,
Kevin

 

[Buxxfan]

Hey Bob,
I'm 32 yrs old and had my double lung tx about 2 yrs ago. I have never been on Cyclosporin but I have always been on Prograf which causes trembling. It definitely subsides alot over time. Like you, I started gaining weight as soon as I got discharged. I started post-tx rehab about 3 weeks out from leaving the hospital. I did the treadmill, lifted some weights (very light at first and not over my head), and arm exercises. This really helped get my energy and strength back. I also had trouble sleeping sometimes and I had a previous prescription (before my tx) of Ativan and my doc said to use that right before bedtime and it definitely helped me sleep better... Congrats on your transplant! If you have any other questions you can always pm me.

Take Care,
Kevin

 

[Buxxfan]

Hey Bob,
I'm 32 yrs old and had my double lung tx about 2 yrs ago. I have never been on Cyclosporin but I have always been on Prograf which causes trembling. It definitely subsides alot over time. Like you, I started gaining weight as soon as I got discharged. I started post-tx rehab about 3 weeks out from leaving the hospital. I did the treadmill, lifted some weights (very light at first and not over my head), and arm exercises. This really helped get my energy and strength back. I also had trouble sleeping sometimes and I had a previous prescription (before my tx) of Ativan and my doc said to use that right before bedtime and it definitely helped me sleep better... Congrats on your transplant! If you have any other questions you can always pm me.

Take Care,
Kevin

 

[Buxxfan]

Hey Bob,
<br />I'm 32 yrs old and had my double lung tx about 2 yrs ago. I have never been on Cyclosporin but I have always been on Prograf which causes trembling. It definitely subsides alot over time. Like you, I started gaining weight as soon as I got discharged. I started post-tx rehab about 3 weeks out from leaving the hospital. I did the treadmill, lifted some weights (very light at first and not over my head), and arm exercises. This really helped get my energy and strength back. I also had trouble sleeping sometimes and I had a previous prescription (before my tx) of Ativan and my doc said to use that right before bedtime and it definitely helped me sleep better... Congrats on your transplant! If you have any other questions you can always pm me.
<br />
<br />Take Care,
<br />Kevin

 

[fr3ak]

Congrats on your transplant!!!

Tremors are common, and do get better the further out you are, that said there are days I still get it quite bad and I am 6 years out..

Weight gain is common and often if you don't nip it in the bud it can become a problem, exercise is the key with that one and being aware of what you are eating. Keeping in mind that our whole lives we have pushed calories to gain weight to no avail. Post tx you don't have the same demands or expenditure on your body as what it was to stay alive pre tx...

Get yourself into a routine as soon as possible, insomina again can be another thing you may have to deal with, but what you don't want to do is get use to staying up all night and then sleeping all day, it will mess with your meds and levels. In the early days I had major issues with insomina and often wouldn't get to bed until around 3am but I would always force myself to get up at 6am. Eventually you will get into a proper sleeping cycle but it can do your head in when you are trying to over come it. My body would be physically exhausted but for what ever reason sleep evades you.

Go easy on the arm weights initially, wait for your sternum to heal (depending on your incision) I was made do arm weights the next day post tx and due to that my sternum shifted and eventually knitted crooked, I ended up having my wire removed due to an abscess 12 months post tx my sternum is now literally shattered, in around 8 or more pieces and for that I will remain on pain killers due to nothing surgically can be done.

Just a few sugestions from my own experience, hope it helps

cf/cf/tx 2002

 

[fr3ak]

Congrats on your transplant!!!

Tremors are common, and do get better the further out you are, that said there are days I still get it quite bad and I am 6 years out..

Weight gain is common and often if you don't nip it in the bud it can become a problem, exercise is the key with that one and being aware of what you are eating. Keeping in mind that our whole lives we have pushed calories to gain weight to no avail. Post tx you don't have the same demands or expenditure on your body as what it was to stay alive pre tx...

Get yourself into a routine as soon as possible, insomina again can be another thing you may have to deal with, but what you don't want to do is get use to staying up all night and then sleeping all day, it will mess with your meds and levels. In the early days I had major issues with insomina and often wouldn't get to bed until around 3am but I would always force myself to get up at 6am. Eventually you will get into a proper sleeping cycle but it can do your head in when you are trying to over come it. My body would be physically exhausted but for what ever reason sleep evades you.

Go easy on the arm weights initially, wait for your sternum to heal (depending on your incision) I was made do arm weights the next day post tx and due to that my sternum shifted and eventually knitted crooked, I ended up having my wire removed due to an abscess 12 months post tx my sternum is now literally shattered, in around 8 or more pieces and for that I will remain on pain killers due to nothing surgically can be done.

Just a few sugestions from my own experience, hope it helps

cf/cf/tx 2002

 

[fr3ak]

Congrats on your transplant!!!

Tremors are common, and do get better the further out you are, that said there are days I still get it quite bad and I am 6 years out..

Weight gain is common and often if you don't nip it in the bud it can become a problem, exercise is the key with that one and being aware of what you are eating. Keeping in mind that our whole lives we have pushed calories to gain weight to no avail. Post tx you don't have the same demands or expenditure on your body as what it was to stay alive pre tx...

Get yourself into a routine as soon as possible, insomina again can be another thing you may have to deal with, but what you don't want to do is get use to staying up all night and then sleeping all day, it will mess with your meds and levels. In the early days I had major issues with insomina and often wouldn't get to bed until around 3am but I would always force myself to get up at 6am. Eventually you will get into a proper sleeping cycle but it can do your head in when you are trying to over come it. My body would be physically exhausted but for what ever reason sleep evades you.

Go easy on the arm weights initially, wait for your sternum to heal (depending on your incision) I was made do arm weights the next day post tx and due to that my sternum shifted and eventually knitted crooked, I ended up having my wire removed due to an abscess 12 months post tx my sternum is now literally shattered, in around 8 or more pieces and for that I will remain on pain killers due to nothing surgically can be done.

Just a few sugestions from my own experience, hope it helps

cf/cf/tx 2002

 

[fr3ak]

Congrats on your transplant!!!

Tremors are common, and do get better the further out you are, that said there are days I still get it quite bad and I am 6 years out..

Weight gain is common and often if you don't nip it in the bud it can become a problem, exercise is the key with that one and being aware of what you are eating. Keeping in mind that our whole lives we have pushed calories to gain weight to no avail. Post tx you don't have the same demands or expenditure on your body as what it was to stay alive pre tx...

Get yourself into a routine as soon as possible, insomina again can be another thing you may have to deal with, but what you don't want to do is get use to staying up all night and then sleeping all day, it will mess with your meds and levels. In the early days I had major issues with insomina and often wouldn't get to bed until around 3am but I would always force myself to get up at 6am. Eventually you will get into a proper sleeping cycle but it can do your head in when you are trying to over come it. My body would be physically exhausted but for what ever reason sleep evades you.

Go easy on the arm weights initially, wait for your sternum to heal (depending on your incision) I was made do arm weights the next day post tx and due to that my sternum shifted and eventually knitted crooked, I ended up having my wire removed due to an abscess 12 months post tx my sternum is now literally shattered, in around 8 or more pieces and for that I will remain on pain killers due to nothing surgically can be done.

Just a few sugestions from my own experience, hope it helps

cf/cf/tx 2002

 

[fr3ak]

Congrats on your transplant!!!
<br />
<br />Tremors are common, and do get better the further out you are, that said there are days I still get it quite bad and I am 6 years out..
<br />
<br />Weight gain is common and often if you don't nip it in the bud it can become a problem, exercise is the key with that one and being aware of what you are eating. Keeping in mind that our whole lives we have pushed calories to gain weight to no avail. Post tx you don't have the same demands or expenditure on your body as what it was to stay alive pre tx...
<br />
<br />Get yourself into a routine as soon as possible, insomina again can be another thing you may have to deal with, but what you don't want to do is get use to staying up all night and then sleeping all day, it will mess with your meds and levels. In the early days I had major issues with insomina and often wouldn't get to bed until around 3am but I would always force myself to get up at 6am. Eventually you will get into a proper sleeping cycle but it can do your head in when you are trying to over come it. My body would be physically exhausted but for what ever reason sleep evades you.
<br />
<br />Go easy on the arm weights initially, wait for your sternum to heal (depending on your incision) I was made do arm weights the next day post tx and due to that my sternum shifted and eventually knitted crooked, I ended up having my wire removed due to an abscess 12 months post tx my sternum is now literally shattered, in around 8 or more pieces and for that I will remain on pain killers due to nothing surgically can be done.
<br />
<br />Just a few sugestions from my own experience, hope it helps
<br />
<br />cf/cf/tx 2002

 

[coltsfan715]

I think I had about every side effect under the sun EXCEPT trembling - that being said I take prograf and have ever since my transplant. I will say that as time passed most all of my side effects went away or subsided somewhat. Though I will say for me I do notice some trembling but it is mostly with things that I need to do involving fine movements and such.

As for the strength issue ... I know for me I was not able to lift anything over 10 lbs for 2 months post. LISTEN to them. It sucks but honestly it is for your own good. I was extremely weak after my transplant - and by extremely I mean I couldn't flush the toilet or even open a bottle of water for about 2 weeks. By the time my weight restriction was lifted my legs were getting back there strength because I had focused on them during my initial rehab since I couldn't do much upper body. It took me several more months to get my upper body strength back. By my 6 month post visit I felt I had gotten my strength back.

Weight gain - I think eating healthy is the biggest most useful thing you can do. I eat alot but have been able to maintain a weight of roughly 127-132lbs. I am 5'7 so that is a good weight for me. I will say though I go through phases where I will crave specific things and I will eat whatever it is at almost every meal ... for weeks or even months. So be careful of that. I left the hospital weighing 105 lbs post transplant and didn't break 110 until about 4 months post transplant. It wasn't that I wasn't eating because I was I just wasn't gaining. Then I hot about 3-4 months post and started craving chocolate chip cookies and went for a little over a month eating cookies EVERYDAY and not just a few we are talking probably close to a dozen when all was said and done. I gained about 15 lbs in 2 months and then my docs told me to be careful with my eating lol. After that I switched to carrots and celery as a snack with some ranch dip. I could literally eat those for hours and was always full but didn't gain but maybe a lb or 2 over the coming months. Then I decided I wanted to be at around 130lbs and ate to gain the weight and exercised and such and have maintained since then. It is a n adjustment from eating ANYTHING you want and not gaining to having to watch what you eat but you will get the hang of it I am sure.

Lindsey

 

[coltsfan715]

I think I had about every side effect under the sun EXCEPT trembling - that being said I take prograf and have ever since my transplant. I will say that as time passed most all of my side effects went away or subsided somewhat. Though I will say for me I do notice some trembling but it is mostly with things that I need to do involving fine movements and such.

As for the strength issue ... I know for me I was not able to lift anything over 10 lbs for 2 months post. LISTEN to them. It sucks but honestly it is for your own good. I was extremely weak after my transplant - and by extremely I mean I couldn't flush the toilet or even open a bottle of water for about 2 weeks. By the time my weight restriction was lifted my legs were getting back there strength because I had focused on them during my initial rehab since I couldn't do much upper body. It took me several more months to get my upper body strength back. By my 6 month post visit I felt I had gotten my strength back.

Weight gain - I think eating healthy is the biggest most useful thing you can do. I eat alot but have been able to maintain a weight of roughly 127-132lbs. I am 5'7 so that is a good weight for me. I will say though I go through phases where I will crave specific things and I will eat whatever it is at almost every meal ... for weeks or even months. So be careful of that. I left the hospital weighing 105 lbs post transplant and didn't break 110 until about 4 months post transplant. It wasn't that I wasn't eating because I was I just wasn't gaining. Then I hot about 3-4 months post and started craving chocolate chip cookies and went for a little over a month eating cookies EVERYDAY and not just a few we are talking probably close to a dozen when all was said and done. I gained about 15 lbs in 2 months and then my docs told me to be careful with my eating lol. After that I switched to carrots and celery as a snack with some ranch dip. I could literally eat those for hours and was always full but didn't gain but maybe a lb or 2 over the coming months. Then I decided I wanted to be at around 130lbs and ate to gain the weight and exercised and such and have maintained since then. It is a n adjustment from eating ANYTHING you want and not gaining to having to watch what you eat but you will get the hang of it I am sure.

Lindsey

 

[coltsfan715]

I think I had about every side effect under the sun EXCEPT trembling - that being said I take prograf and have ever since my transplant. I will say that as time passed most all of my side effects went away or subsided somewhat. Though I will say for me I do notice some trembling but it is mostly with things that I need to do involving fine movements and such.

As for the strength issue ... I know for me I was not able to lift anything over 10 lbs for 2 months post. LISTEN to them. It sucks but honestly it is for your own good. I was extremely weak after my transplant - and by extremely I mean I couldn't flush the toilet or even open a bottle of water for about 2 weeks. By the time my weight restriction was lifted my legs were getting back there strength because I had focused on them during my initial rehab since I couldn't do much upper body. It took me several more months to get my upper body strength back. By my 6 month post visit I felt I had gotten my strength back.

Weight gain - I think eating healthy is the biggest most useful thing you can do. I eat alot but have been able to maintain a weight of roughly 127-132lbs. I am 5'7 so that is a good weight for me. I will say though I go through phases where I will crave specific things and I will eat whatever it is at almost every meal ... for weeks or even months. So be careful of that. I left the hospital weighing 105 lbs post transplant and didn't break 110 until about 4 months post transplant. It wasn't that I wasn't eating because I was I just wasn't gaining. Then I hot about 3-4 months post and started craving chocolate chip cookies and went for a little over a month eating cookies EVERYDAY and not just a few we are talking probably close to a dozen when all was said and done. I gained about 15 lbs in 2 months and then my docs told me to be careful with my eating lol. After that I switched to carrots and celery as a snack with some ranch dip. I could literally eat those for hours and was always full but didn't gain but maybe a lb or 2 over the coming months. Then I decided I wanted to be at around 130lbs and ate to gain the weight and exercised and such and have maintained since then. It is a n adjustment from eating ANYTHING you want and not gaining to having to watch what you eat but you will get the hang of it I am sure.

Lindsey

 

[coltsfan715]

I think I had about every side effect under the sun EXCEPT trembling - that being said I take prograf and have ever since my transplant. I will say that as time passed most all of my side effects went away or subsided somewhat. Though I will say for me I do notice some trembling but it is mostly with things that I need to do involving fine movements and such.

As for the strength issue ... I know for me I was not able to lift anything over 10 lbs for 2 months post. LISTEN to them. It sucks but honestly it is for your own good. I was extremely weak after my transplant - and by extremely I mean I couldn't flush the toilet or even open a bottle of water for about 2 weeks. By the time my weight restriction was lifted my legs were getting back there strength because I had focused on them during my initial rehab since I couldn't do much upper body. It took me several more months to get my upper body strength back. By my 6 month post visit I felt I had gotten my strength back.

Weight gain - I think eating healthy is the biggest most useful thing you can do. I eat alot but have been able to maintain a weight of roughly 127-132lbs. I am 5'7 so that is a good weight for me. I will say though I go through phases where I will crave specific things and I will eat whatever it is at almost every meal ... for weeks or even months. So be careful of that. I left the hospital weighing 105 lbs post transplant and didn't break 110 until about 4 months post transplant. It wasn't that I wasn't eating because I was I just wasn't gaining. Then I hot about 3-4 months post and started craving chocolate chip cookies and went for a little over a month eating cookies EVERYDAY and not just a few we are talking probably close to a dozen when all was said and done. I gained about 15 lbs in 2 months and then my docs told me to be careful with my eating lol. After that I switched to carrots and celery as a snack with some ranch dip. I could literally eat those for hours and was always full but didn't gain but maybe a lb or 2 over the coming months. Then I decided I wanted to be at around 130lbs and ate to gain the weight and exercised and such and have maintained since then. It is a n adjustment from eating ANYTHING you want and not gaining to having to watch what you eat but you will get the hang of it I am sure.

Lindsey

 

[coltsfan715]

I think I had about every side effect under the sun EXCEPT trembling - that being said I take prograf and have ever since my transplant. I will say that as time passed most all of my side effects went away or subsided somewhat. Though I will say for me I do notice some trembling but it is mostly with things that I need to do involving fine movements and such.
<br />
<br />As for the strength issue ... I know for me I was not able to lift anything over 10 lbs for 2 months post. LISTEN to them. It sucks but honestly it is for your own good. I was extremely weak after my transplant - and by extremely I mean I couldn't flush the toilet or even open a bottle of water for about 2 weeks. By the time my weight restriction was lifted my legs were getting back there strength because I had focused on them during my initial rehab since I couldn't do much upper body. It took me several more months to get my upper body strength back. By my 6 month post visit I felt I had gotten my strength back.
<br />
<br />Weight gain - I think eating healthy is the biggest most useful thing you can do. I eat alot but have been able to maintain a weight of roughly 127-132lbs. I am 5'7 so that is a good weight for me. I will say though I go through phases where I will crave specific things and I will eat whatever it is at almost every meal ... for weeks or even months. So be careful of that. I left the hospital weighing 105 lbs post transplant and didn't break 110 until about 4 months post transplant. It wasn't that I wasn't eating because I was I just wasn't gaining. Then I hot about 3-4 months post and started craving chocolate chip cookies and went for a little over a month eating cookies EVERYDAY and not just a few we are talking probably close to a dozen when all was said and done. I gained about 15 lbs in 2 months and then my docs told me to be careful with my eating lol. After that I switched to carrots and celery as a snack with some ranch dip. I could literally eat those for hours and was always full but didn't gain but maybe a lb or 2 over the coming months. Then I decided I wanted to be at around 130lbs and ate to gain the weight and exercised and such and have maintained since then. It is a n adjustment from eating ANYTHING you want and not gaining to having to watch what you eat but you will get the hang of it I am sure.
<br />
<br />Lindsey