Got my New Lungs Two weeks ago

[Capi]

After only 6 months and two calls I finally had the surgery two weeks ago. I am home already and doing an hour on the treadmill on a slow pace.

I guess I should know these questions but coming from a doctor is always different than from someone who went through with it.

Three things that I now have one is shakes which I am told is a reaction to the medications.

Another is small cold sweats which I am also told is a reaction to the new meds

and lastly I am partly Diabetic which I have had to learn to shoot up with insulin. Also told is due to new meds.

The doctor told me everything should level of and I may stay with all three or some or all three reactions will go away.

Those who have had Lung transplant did you come out diabetic which is the biggest one for me? And did you stay that way or are you diabetic for life?

If I do not make sense is that I am still a bit woozy on the new meds and its a bit uncomfortable to type.

 

[Capi]

After only 6 months and two calls I finally had the surgery two weeks ago. I am home already and doing an hour on the treadmill on a slow pace.

I guess I should know these questions but coming from a doctor is always different than from someone who went through with it.

Three things that I now have one is shakes which I am told is a reaction to the medications.

Another is small cold sweats which I am also told is a reaction to the new meds

and lastly I am partly Diabetic which I have had to learn to shoot up with insulin. Also told is due to new meds.

The doctor told me everything should level of and I may stay with all three or some or all three reactions will go away.

Those who have had Lung transplant did you come out diabetic which is the biggest one for me? And did you stay that way or are you diabetic for life?

If I do not make sense is that I am still a bit woozy on the new meds and its a bit uncomfortable to type.

 

[Capi]

After only 6 months and two calls I finally had the surgery two weeks ago. I am home already and doing an hour on the treadmill on a slow pace.
<br />
<br />I guess I should know these questions but coming from a doctor is always different than from someone who went through with it.
<br />
<br />Three things that I now have one is shakes which I am told is a reaction to the medications.
<br />
<br />Another is small cold sweats which I am also told is a reaction to the new meds
<br />
<br />and lastly I am partly Diabetic which I have had to learn to shoot up with insulin. Also told is due to new meds.
<br />
<br />The doctor told me everything should level of and I may stay with all three or some or all three reactions will go away.
<br />
<br />Those who have had Lung transplant did you come out diabetic which is the biggest one for me? And did you stay that way or are you diabetic for life?
<br />
<br />If I do not make sense is that I am still a bit woozy on the new meds and its a bit uncomfortable to type.

 

[Brad]

WOW
I don't have the answers you are looking for
I am Pre Tx, But I wanted to say CONGRATS on the New Lungs !!!

It sounds like you are doing Great, a whole Hour in the Dreadmill..

I hope you are able to decrease the meds and adjust soon..

I am Sure Some one on this site has the answers you are looking for..

Again ConGrats !!!!!!!!! Happy Deep Breathing !!!!!!!!

 

[Brad]

WOW
I don't have the answers you are looking for
I am Pre Tx, But I wanted to say CONGRATS on the New Lungs !!!

It sounds like you are doing Great, a whole Hour in the Dreadmill..

I hope you are able to decrease the meds and adjust soon..

I am Sure Some one on this site has the answers you are looking for..

Again ConGrats !!!!!!!!! Happy Deep Breathing !!!!!!!!

 

[Brad]

WOW
<br /> I don't have the answers you are looking for
<br /> I am Pre Tx, But I wanted to say CONGRATS on the New Lungs !!!
<br />
<br /> It sounds like you are doing Great, a whole Hour in the Dreadmill..
<br />
<br /> I hope you are able to decrease the meds and adjust soon..
<br />
<br /> I am Sure Some one on this site has the answers you are looking for..
<br />
<br /> Again ConGrats !!!!!!!!! Happy Deep Breathing !!!!!!!!

 

[Capi]

Thanks Brad, it's amazing how you feel afterwards. I haven't coughed in about a week. My brain sometimes thinks it's weird and I cough only to produce light white sputum. Something I have never seen.

I do an hour and my wife wants me of it but I actually feel great when I am doing it and afterwards instead of being tired I actually want to do it again. It's a really different experience. I guess I am getting a feel of how people without CF breath.

 

[Capi]

Thanks Brad, it's amazing how you feel afterwards. I haven't coughed in about a week. My brain sometimes thinks it's weird and I cough only to produce light white sputum. Something I have never seen.

I do an hour and my wife wants me of it but I actually feel great when I am doing it and afterwards instead of being tired I actually want to do it again. It's a really different experience. I guess I am getting a feel of how people without CF breath.

 

[Capi]

Thanks Brad, it's amazing how you feel afterwards. I haven't coughed in about a week. My brain sometimes thinks it's weird and I cough only to produce light white sputum. Something I have never seen.
<br />
<br />I do an hour and my wife wants me of it but I actually feel great when I am doing it and afterwards instead of being tired I actually want to do it again. It's a really different experience. I guess I am getting a feel of how people without CF breath.

 

[coltsfan715]

I personally was diabetic pre transplant and still remain that way now - 3 yrs post. I initially had to increase my insulin intake with the high doses of steroids, but as time passed and my steroid dosages became lower the need for insulin decreased back to my normal.

I know several CFers that were NOT diabetic pre that had to take insulin for a period of time and then were able to stop. I also know a few that do not take insulin all the time but if they are ill or if they need to have their steroid dosage upped for whatever reason they do have to take long acting insulin.

The shakes I was fortunate and did not really have severe shaking. I get very faint shakiness that is evident primarily when I use a camera but beyond that I never dealt with that issue. In most instances the people that I know that have dealt with this see some relief over time, but typically it varies as to how severe the shaking is long term per patient. Some it is extremely severe and others just enough to be annoying to them, but not noticeable to others.

Cold sweats are primarily from the pain meds and possibly from elevcated blood sugar. As you come off the pain meds and as your sugar becomes more controlled you will likely see those go away. I don't know of anyone at my center that has cold sweats permanently post transplant.

I think that most of the stuff you are dealing with will become more manageable as time passes. I saw within about 4-7 months post transplant you should see a leveling off of most of the issues you are having. You may develop other side effects as time passes as well - just to give you a heads up. For me after about 6 months post I started to see my blood pressure increase. I did not have blood pressure issues pre transplant but one of my meds gives me high blood pressure now, which I take meds for and it keeps it under control.

Congrats on the transplant! I wish you the best with your recovery and hope that you are able to take your life back and fulfill all the dreams you had about what your life would be like post transplant!

Lindsey

 

[coltsfan715]

I personally was diabetic pre transplant and still remain that way now - 3 yrs post. I initially had to increase my insulin intake with the high doses of steroids, but as time passed and my steroid dosages became lower the need for insulin decreased back to my normal.

I know several CFers that were NOT diabetic pre that had to take insulin for a period of time and then were able to stop. I also know a few that do not take insulin all the time but if they are ill or if they need to have their steroid dosage upped for whatever reason they do have to take long acting insulin.

The shakes I was fortunate and did not really have severe shaking. I get very faint shakiness that is evident primarily when I use a camera but beyond that I never dealt with that issue. In most instances the people that I know that have dealt with this see some relief over time, but typically it varies as to how severe the shaking is long term per patient. Some it is extremely severe and others just enough to be annoying to them, but not noticeable to others.

Cold sweats are primarily from the pain meds and possibly from elevcated blood sugar. As you come off the pain meds and as your sugar becomes more controlled you will likely see those go away. I don't know of anyone at my center that has cold sweats permanently post transplant.

I think that most of the stuff you are dealing with will become more manageable as time passes. I saw within about 4-7 months post transplant you should see a leveling off of most of the issues you are having. You may develop other side effects as time passes as well - just to give you a heads up. For me after about 6 months post I started to see my blood pressure increase. I did not have blood pressure issues pre transplant but one of my meds gives me high blood pressure now, which I take meds for and it keeps it under control.

Congrats on the transplant! I wish you the best with your recovery and hope that you are able to take your life back and fulfill all the dreams you had about what your life would be like post transplant!

Lindsey

 

[coltsfan715]

I personally was diabetic pre transplant and still remain that way now - 3 yrs post. I initially had to increase my insulin intake with the high doses of steroids, but as time passed and my steroid dosages became lower the need for insulin decreased back to my normal.
<br />
<br />I know several CFers that were NOT diabetic pre that had to take insulin for a period of time and then were able to stop. I also know a few that do not take insulin all the time but if they are ill or if they need to have their steroid dosage upped for whatever reason they do have to take long acting insulin.
<br />
<br />The shakes I was fortunate and did not really have severe shaking. I get very faint shakiness that is evident primarily when I use a camera but beyond that I never dealt with that issue. In most instances the people that I know that have dealt with this see some relief over time, but typically it varies as to how severe the shaking is long term per patient. Some it is extremely severe and others just enough to be annoying to them, but not noticeable to others.
<br />
<br />Cold sweats are primarily from the pain meds and possibly from elevcated blood sugar. As you come off the pain meds and as your sugar becomes more controlled you will likely see those go away. I don't know of anyone at my center that has cold sweats permanently post transplant.
<br />
<br />I think that most of the stuff you are dealing with will become more manageable as time passes. I saw within about 4-7 months post transplant you should see a leveling off of most of the issues you are having. You may develop other side effects as time passes as well - just to give you a heads up. For me after about 6 months post I started to see my blood pressure increase. I did not have blood pressure issues pre transplant but one of my meds gives me high blood pressure now, which I take meds for and it keeps it under control.
<br />
<br />Congrats on the transplant! I wish you the best with your recovery and hope that you are able to take your life back and fulfill all the dreams you had about what your life would be like post transplant!
<br />
<br />Lindsey

 

[senatorgraham]

Congrats on your transplant!

I was not diabetic pre transplant and became diabetic post transplant because of the medication just like you. I continue to manage it with insulin and do not see an end to it.

I did not have cold sweats so I will leave that to others who have had similar experiances.

I do have some shakes because of medication but it depends on the dosages. Prograf levels may change so do my levels of shaking, usually it is low, but never totally goes away.

Hope this helps, and congrats again!

 

[senatorgraham]

Congrats on your transplant!

I was not diabetic pre transplant and became diabetic post transplant because of the medication just like you. I continue to manage it with insulin and do not see an end to it.

I did not have cold sweats so I will leave that to others who have had similar experiances.

I do have some shakes because of medication but it depends on the dosages. Prograf levels may change so do my levels of shaking, usually it is low, but never totally goes away.

Hope this helps, and congrats again!

 

[senatorgraham]

Congrats on your transplant!
<br />
<br />I was not diabetic pre transplant and became diabetic post transplant because of the medication just like you. I continue to manage it with insulin and do not see an end to it.
<br />
<br />I did not have cold sweats so I will leave that to others who have had similar experiances.
<br />
<br />I do have some shakes because of medication but it depends on the dosages. Prograf levels may change so do my levels of shaking, usually it is low, but never totally goes away.
<br />
<br />Hope this helps, and congrats again!

 

[Capi]

Thanks for the info.

The shakes are not as bad but more annoying. My wife only notices them if I show her.

The Diabetic part was the one I was afraid of as now I have to deal with a new problem and have to learn about it.

Other than that the actual feel its awesome. I get on the treadmill do an hour and relax and want to walk some more it actually feels great, although I do see myself sweating a lot while doing the treadmill or if I am not laying down doing nothing.

I was actually afraid to do this but now I love the feeling, the breathing is beyond what I imagined. I do not get winded and really feel good inside.

 

[Capi]

Thanks for the info.

The shakes are not as bad but more annoying. My wife only notices them if I show her.

The Diabetic part was the one I was afraid of as now I have to deal with a new problem and have to learn about it.

Other than that the actual feel its awesome. I get on the treadmill do an hour and relax and want to walk some more it actually feels great, although I do see myself sweating a lot while doing the treadmill or if I am not laying down doing nothing.

I was actually afraid to do this but now I love the feeling, the breathing is beyond what I imagined. I do not get winded and really feel good inside.

 

[Capi]

Thanks for the info.
<br />
<br />The shakes are not as bad but more annoying. My wife only notices them if I show her.
<br />
<br />The Diabetic part was the one I was afraid of as now I have to deal with a new problem and have to learn about it.
<br />
<br />Other than that the actual feel its awesome. I get on the treadmill do an hour and relax and want to walk some more it actually feels great, although I do see myself sweating a lot while doing the treadmill or if I am not laying down doing nothing.
<br />
<br />I was actually afraid to do this but now I love the feeling, the breathing is beyond what I imagined. I do not get winded and really feel good inside.

 

[Capi]

On a side note, I did not need any pain meds after the first week so it's been a week that I am of them and I am thinking that perhaps it may be the elevated sugar count.

 

[Capi]

On a side note, I did not need any pain meds after the first week so it's been a week that I am of them and I am thinking that perhaps it may be the elevated sugar count.