How do you adjust from being a cystic fibrosis patient to a transplant patient? I am planning on going home from the hospital tomorrow following my transplant and I don't know how to be a transplant patient. I know CF. I don't know transplants. Did you easily fall into this new role? Like does it just come naturally to avoid sick people and follow all the food restrictions or was it a huge adjustment? I got sick very quickly and was only on the list for two days before I got my lungs. I didn't have any time to adjust to the idea emotionally. Also, because things moved so quickly, I didn't do a lot of the pre-transplant education. I'm worried about doing something stupid when I leave that hurts my new lungs.
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Adjusting to a new life
- Thread starter carmick
- Start date
How do you adjust from being a cystic fibrosis patient to a transplant patient? I am planning on going home from the hospital tomorrow following my transplant and I don't know how to be a transplant patient. I know CF. I don't know transplants. Did you easily fall into this new role? Like does it just come naturally to avoid sick people and follow all the food restrictions or was it a huge adjustment? I got sick very quickly and was only on the list for two days before I got my lungs. I didn't have any time to adjust to the idea emotionally. Also, because things moved so quickly, I didn't do a lot of the pre-transplant education. I'm worried about doing something stupid when I leave that hurts my new lungs.
First off. . .welcome to your new life <img src="i/expressions/face-icon-small-smile.gif" border="0"> I am just over 4 years post transplant. I was put on a ventilator THEN listed and got new lungs in just 3 days later. SO in reality I pretty much had no time in between. lol
Recovery for me was the tough part. I was in and out of ICU and even had to be re-ventilated for over a month. Once I was released though I noticed a few things that I was not used to. Anxiety and fear of rejection. . .I became obbsessed to say the least. I take an anti anxiety med to this day to help deal with it. I think it is a side effect of the meds (although I am not sure).
The "sick people" and the "food restrictions" are for the most part pretty easy to follow. Most people/family should understand. I carry hand sanitizer and masks with me everywhere. I don't like wearing a mask, but I would rather wear a mask if someone is sick around me and I can't do anything about it than get sick, and end up in rejection. If you are a big sushi eater, I'm sorry cuz that might be a hard adjustment. But I found transplant life to be an easy adjustment.
If you have questions there are alot of us CFers who are post lung transplant who blog regularly and most of us are very willing to try to help and answer your questions. You can find other post transplant blogs linked on my blog <a href="http://jamiebug.blogspot.com">http://jamiebug.blogspot.com</a>
I hope you do very well and get out there and enjoy those new lungs!!!!
Recovery for me was the tough part. I was in and out of ICU and even had to be re-ventilated for over a month. Once I was released though I noticed a few things that I was not used to. Anxiety and fear of rejection. . .I became obbsessed to say the least. I take an anti anxiety med to this day to help deal with it. I think it is a side effect of the meds (although I am not sure).
The "sick people" and the "food restrictions" are for the most part pretty easy to follow. Most people/family should understand. I carry hand sanitizer and masks with me everywhere. I don't like wearing a mask, but I would rather wear a mask if someone is sick around me and I can't do anything about it than get sick, and end up in rejection. If you are a big sushi eater, I'm sorry cuz that might be a hard adjustment. But I found transplant life to be an easy adjustment.
If you have questions there are alot of us CFers who are post lung transplant who blog regularly and most of us are very willing to try to help and answer your questions. You can find other post transplant blogs linked on my blog <a href="http://jamiebug.blogspot.com">http://jamiebug.blogspot.com</a>
I hope you do very well and get out there and enjoy those new lungs!!!!
First off. . .welcome to your new life <img src="i/expressions/face-icon-small-smile.gif" border="0"> I am just over 4 years post transplant. I was put on a ventilator THEN listed and got new lungs in just 3 days later. SO in reality I pretty much had no time in between. lol
Recovery for me was the tough part. I was in and out of ICU and even had to be re-ventilated for over a month. Once I was released though I noticed a few things that I was not used to. Anxiety and fear of rejection. . .I became obbsessed to say the least. I take an anti anxiety med to this day to help deal with it. I think it is a side effect of the meds (although I am not sure).
The "sick people" and the "food restrictions" are for the most part pretty easy to follow. Most people/family should understand. I carry hand sanitizer and masks with me everywhere. I don't like wearing a mask, but I would rather wear a mask if someone is sick around me and I can't do anything about it than get sick, and end up in rejection. If you are a big sushi eater, I'm sorry cuz that might be a hard adjustment. But I found transplant life to be an easy adjustment.
If you have questions there are alot of us CFers who are post lung transplant who blog regularly and most of us are very willing to try to help and answer your questions. You can find other post transplant blogs linked on my blog <a href="http://jamiebug.blogspot.com">http://jamiebug.blogspot.com</a>
I hope you do very well and get out there and enjoy those new lungs!!!!
Recovery for me was the tough part. I was in and out of ICU and even had to be re-ventilated for over a month. Once I was released though I noticed a few things that I was not used to. Anxiety and fear of rejection. . .I became obbsessed to say the least. I take an anti anxiety med to this day to help deal with it. I think it is a side effect of the meds (although I am not sure).
The "sick people" and the "food restrictions" are for the most part pretty easy to follow. Most people/family should understand. I carry hand sanitizer and masks with me everywhere. I don't like wearing a mask, but I would rather wear a mask if someone is sick around me and I can't do anything about it than get sick, and end up in rejection. If you are a big sushi eater, I'm sorry cuz that might be a hard adjustment. But I found transplant life to be an easy adjustment.
If you have questions there are alot of us CFers who are post lung transplant who blog regularly and most of us are very willing to try to help and answer your questions. You can find other post transplant blogs linked on my blog <a href="http://jamiebug.blogspot.com">http://jamiebug.blogspot.com</a>
I hope you do very well and get out there and enjoy those new lungs!!!!