after transplant

I

IG

Guest
Kudos to Emily. I think I've said all of that at one point or another but it needed to be said again.

I hate people who just spew sunshine out of their butts.
Life is hard, so is this. That doesn't mean that you can't be happy but not everything is going to work out because you believe it's going to. (I believed in unicorns at age 9, doesn't mean they're real though) You just do the best you can.
Sometimes it works, sometimes it doesn't.
A lot of it is luck. In fact most of it is probably luck (or due to your god if you believe in that stuff).

Sometimes it's right for you, sometimes not, you take what you can get.
 
I

IG

Guest
Kudos to Emily. I think I've said all of that at one point or another but it needed to be said again.

I hate people who just spew sunshine out of their butts.
Life is hard, so is this. That doesn't mean that you can't be happy but not everything is going to work out because you believe it's going to. (I believed in unicorns at age 9, doesn't mean they're real though) You just do the best you can.
Sometimes it works, sometimes it doesn't.
A lot of it is luck. In fact most of it is probably luck (or due to your god if you believe in that stuff).

Sometimes it's right for you, sometimes not, you take what you can get.
 
I

IG

Guest
Kudos to Emily. I think I've said all of that at one point or another but it needed to be said again.

I hate people who just spew sunshine out of their butts.
Life is hard, so is this. That doesn't mean that you can't be happy but not everything is going to work out because you believe it's going to. (I believed in unicorns at age 9, doesn't mean they're real though) You just do the best you can.
Sometimes it works, sometimes it doesn't.
A lot of it is luck. In fact most of it is probably luck (or due to your god if you believe in that stuff).

Sometimes it's right for you, sometimes not, you take what you can get.
 

Marjolein

New member
The new lungs do have an expire date, but nobody knows when that will be. A woman on a board i'm a member of had her tx 22 ago (could be 21 also but still hehe). And others are not that lucky. Nobody can ever know how someone will do after tx. You get meds to prevent rejection, but rejection can still occur and on the other hand. The meds lower your immune system so you're more suseptable for bacteria and virusses.. Still i know about a boy who has never had one single problem, really none, and is 2+ years out now and really lives a completely normal life.

My health was going down fast the year before my tx, but i could have been worse. In fact i was relatively feeling well when i got my transplant, that was 7 months ago now. My tx went really good, no complications, didn't need hart-lung machine. I was only on 40% O2 when i got out of the surgery, was awake 8 hours later and the tube went out 1.5 after i was back on icu. They found a little pseudo with the first bronch so i got antibiotics for that and that was cleared up. I had a course for acute rejection 1.5 weeks post tx (that happens to almost all people and isn't bad). I went home for the weekend 3.5 weeks post but had to go back for all the tests and was home a month minus 2 days after my tx. Feeling really well. In the past few months i've had problems, there is something with my lungs, that nobody knew of beforehand. The lungs looked good with the tx and they do now too, when i have a bronch. But yet they are weak. My pft's went up ofcourse, if you compair to my old lungs (about 11% ). First after tx they were 40% and now they are 50% as highest. So there is something wrong there that nobody knew about. And nobody knows why. I have problems with pseudo in my sinuses (need surgery for that on the 23th of March) and have virusses acting up... So i could do much better.

But... if i compair to last year i'm already doing so so much better! There is still so much i can do now that i've not done for years and years. I have my own bike now, first since i was 11! It's unbelievable really. It's all really worth it! It really is! This second chance, i'm so thankful for that.
 

Marjolein

New member
The new lungs do have an expire date, but nobody knows when that will be. A woman on a board i'm a member of had her tx 22 ago (could be 21 also but still hehe). And others are not that lucky. Nobody can ever know how someone will do after tx. You get meds to prevent rejection, but rejection can still occur and on the other hand. The meds lower your immune system so you're more suseptable for bacteria and virusses.. Still i know about a boy who has never had one single problem, really none, and is 2+ years out now and really lives a completely normal life.

My health was going down fast the year before my tx, but i could have been worse. In fact i was relatively feeling well when i got my transplant, that was 7 months ago now. My tx went really good, no complications, didn't need hart-lung machine. I was only on 40% O2 when i got out of the surgery, was awake 8 hours later and the tube went out 1.5 after i was back on icu. They found a little pseudo with the first bronch so i got antibiotics for that and that was cleared up. I had a course for acute rejection 1.5 weeks post tx (that happens to almost all people and isn't bad). I went home for the weekend 3.5 weeks post but had to go back for all the tests and was home a month minus 2 days after my tx. Feeling really well. In the past few months i've had problems, there is something with my lungs, that nobody knew of beforehand. The lungs looked good with the tx and they do now too, when i have a bronch. But yet they are weak. My pft's went up ofcourse, if you compair to my old lungs (about 11% ). First after tx they were 40% and now they are 50% as highest. So there is something wrong there that nobody knew about. And nobody knows why. I have problems with pseudo in my sinuses (need surgery for that on the 23th of March) and have virusses acting up... So i could do much better.

But... if i compair to last year i'm already doing so so much better! There is still so much i can do now that i've not done for years and years. I have my own bike now, first since i was 11! It's unbelievable really. It's all really worth it! It really is! This second chance, i'm so thankful for that.
 

Marjolein

New member
The new lungs do have an expire date, but nobody knows when that will be. A woman on a board i'm a member of had her tx 22 ago (could be 21 also but still hehe). And others are not that lucky. Nobody can ever know how someone will do after tx. You get meds to prevent rejection, but rejection can still occur and on the other hand. The meds lower your immune system so you're more suseptable for bacteria and virusses.. Still i know about a boy who has never had one single problem, really none, and is 2+ years out now and really lives a completely normal life.

My health was going down fast the year before my tx, but i could have been worse. In fact i was relatively feeling well when i got my transplant, that was 7 months ago now. My tx went really good, no complications, didn't need hart-lung machine. I was only on 40% O2 when i got out of the surgery, was awake 8 hours later and the tube went out 1.5 after i was back on icu. They found a little pseudo with the first bronch so i got antibiotics for that and that was cleared up. I had a course for acute rejection 1.5 weeks post tx (that happens to almost all people and isn't bad). I went home for the weekend 3.5 weeks post but had to go back for all the tests and was home a month minus 2 days after my tx. Feeling really well. In the past few months i've had problems, there is something with my lungs, that nobody knew of beforehand. The lungs looked good with the tx and they do now too, when i have a bronch. But yet they are weak. My pft's went up ofcourse, if you compair to my old lungs (about 11% ). First after tx they were 40% and now they are 50% as highest. So there is something wrong there that nobody knew about. And nobody knows why. I have problems with pseudo in my sinuses (need surgery for that on the 23th of March) and have virusses acting up... So i could do much better.

But... if i compair to last year i'm already doing so so much better! There is still so much i can do now that i've not done for years and years. I have my own bike now, first since i was 11! It's unbelievable really. It's all really worth it! It really is! This second chance, i'm so thankful for that.
 

shamrock

New member
It is true that rejection is pretty much luck of the draw and positive attitude has nearly nothing to do with your turn out. But in my opinion<b> having a positive attitude will make things much easier</b>

It doesn't keep you away from problems, but the experience is not as hard as it could be if you were to go in and around with a negative, pessamistic attitude.

Nothing wrong with smiling and having hope. And sometimes that does make you stronger, wanting to fight harder etc. Your body decides when it wants to stop; and certainly nobody who doesn't make it are any less worthy fighters at all.

But keep in mind, looking on the brightside of life makes it more enjoyable. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

shamrock

New member
It is true that rejection is pretty much luck of the draw and positive attitude has nearly nothing to do with your turn out. But in my opinion<b> having a positive attitude will make things much easier</b>

It doesn't keep you away from problems, but the experience is not as hard as it could be if you were to go in and around with a negative, pessamistic attitude.

Nothing wrong with smiling and having hope. And sometimes that does make you stronger, wanting to fight harder etc. Your body decides when it wants to stop; and certainly nobody who doesn't make it are any less worthy fighters at all.

But keep in mind, looking on the brightside of life makes it more enjoyable. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

shamrock

New member
It is true that rejection is pretty much luck of the draw and positive attitude has nearly nothing to do with your turn out. But in my opinion<b> having a positive attitude will make things much easier</b>

It doesn't keep you away from problems, but the experience is not as hard as it could be if you were to go in and around with a negative, pessamistic attitude.

Nothing wrong with smiling and having hope. And sometimes that does make you stronger, wanting to fight harder etc. Your body decides when it wants to stop; and certainly nobody who doesn't make it are any less worthy fighters at all.

But keep in mind, looking on the brightside of life makes it more enjoyable. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Emily65Roses

New member
I have no problem with people being positive (contrary to what may be popular belief around here). I'm just tired of people acting like their positivity is the reason their health was fairly successful (or why they lived so long, etc etc). Because that's crap, and it makes it sound like those who died younger did so because of their own failings.
 

Emily65Roses

New member
I have no problem with people being positive (contrary to what may be popular belief around here). I'm just tired of people acting like their positivity is the reason their health was fairly successful (or why they lived so long, etc etc). Because that's crap, and it makes it sound like those who died younger did so because of their own failings.
 

Emily65Roses

New member
I have no problem with people being positive (contrary to what may be popular belief around here). I'm just tired of people acting like their positivity is the reason their health was fairly successful (or why they lived so long, etc etc). Because that's crap, and it makes it sound like those who died younger did so because of their own failings.
 

summer732

New member
I never said that a positive attitude fixes all, but IN MY OPINION, yes, it helps! (I really don't understand what people have against smiling and being happy, even in tough situations) Believe me, I am by no means, Suzy Sunshine all the time. There are times that I get annoyed, that I am mad that I have to take yet ANOTHER one of my very few vacation days from work to sit in a hospital. That I yet again, developed a pneumonia, that my pfts are down. But guess what, sh*t happens and I'd rather do it with a positive attitude and smile on my face then piss and moan about it. And you know what, I'm determined to get better damnit! I refuse to let anything get to me without one hell of a fight! Plus, there are people who have it a lot worse off then I do, so where the hell is my right to have a bad attitude. In my opinion, I have no right to complain about anything! With all the things that have gone wrong in my life, hell I consider myself one lucky person! And you know what my pfts went up in the last month (knock on wood many times).

There is nothing wrong with having a positive attitude and BELIEVING that that positive attitude will help you through the rough times. If that is what helps people get through the tough times, then by all means, let's be positive. I try to mix a positive attitude with a sense of realism. I am realistic about my life and the things that can go wrong, but my no means do I dwell on it! My mother does though, and this is the reason her and I do not get along and/or agree when it comes to my health. And I think that a majority of people underestimate the mind/body connection. My body knows when I am in a negative mood about something, and if I am sick it takes me longer to heal.

Everyone is going to treat life differently and approach different experiences with a different attitude. Believe me, my transplant situation COULD HAVE BEEN awful if I let it. I was dying, while my friends were attending their final year of college and I was 3000 miles away from home with NO FRIENDS in sight. But what did I do, you ask? I talked to people awaiting transplant and learned everything I could about other people's experiences. My friends came to visit. I got out of the house, saw New Orleans and said to myself this could very well be my last few months on earth...am I going to cry about it? Hell no! If I'm checking out, I'm making sure to go out on top. I actaully had fun waiting for my transplant. I didn't sit around and give myself the chance to even realize what was going on. The first time I got scared and it hit me that I may not make it, was when they were wheeling me back to the operating room. By that time alls I could do was look at the surgeon and say Good Luck!

One more thing, to all of the people waiting for their transplant. Talk to people who have been through it. Not just people who are waiting, or who have been on their evaluation. People who have been through the surgery, the recovery, the good and the bad. We are the people who know what goes one, who have been in the waiting room countless number of times with others who have had their transplants, have seen the good outcomes, the bad outcomes and the worse outcomes. I remember I got a call for lungs 13 days after I was in New Orleans. It turned out to be a dry run. A couple of days later I was thankful it didn't go through because I realized I wasn't ready. All of my questions were not answered. So for the next five months, I searched out transplant patients. I asked them all of my questions until I gained a strong sense of peace. I had asked all of my questions and I was ready for that call. Whatever lay ahead of me, I was ready to handle it, good or bad. I truly felt it was in God's hands at that point. And that sense of peace, of being READY for that call is super important.

And I almost look at transplant as a right of passage too which is why i am telling you, original poster to talk to people who have been through it. You truly cannot understand the transplant experience until you have been through it.

Would I do it again? Absolutely! Would I remain as positive as I did the first time? By all means.

Good Luck to all who are waiting. And ask those questions, and stay positive no matter what anyone says.

And as usual Risa, your transplant story never ceases to amaze me. Your attitude is contagious and you are seriously one of my heroes!
 

summer732

New member
I never said that a positive attitude fixes all, but IN MY OPINION, yes, it helps! (I really don't understand what people have against smiling and being happy, even in tough situations) Believe me, I am by no means, Suzy Sunshine all the time. There are times that I get annoyed, that I am mad that I have to take yet ANOTHER one of my very few vacation days from work to sit in a hospital. That I yet again, developed a pneumonia, that my pfts are down. But guess what, sh*t happens and I'd rather do it with a positive attitude and smile on my face then piss and moan about it. And you know what, I'm determined to get better damnit! I refuse to let anything get to me without one hell of a fight! Plus, there are people who have it a lot worse off then I do, so where the hell is my right to have a bad attitude. In my opinion, I have no right to complain about anything! With all the things that have gone wrong in my life, hell I consider myself one lucky person! And you know what my pfts went up in the last month (knock on wood many times).

There is nothing wrong with having a positive attitude and BELIEVING that that positive attitude will help you through the rough times. If that is what helps people get through the tough times, then by all means, let's be positive. I try to mix a positive attitude with a sense of realism. I am realistic about my life and the things that can go wrong, but my no means do I dwell on it! My mother does though, and this is the reason her and I do not get along and/or agree when it comes to my health. And I think that a majority of people underestimate the mind/body connection. My body knows when I am in a negative mood about something, and if I am sick it takes me longer to heal.

Everyone is going to treat life differently and approach different experiences with a different attitude. Believe me, my transplant situation COULD HAVE BEEN awful if I let it. I was dying, while my friends were attending their final year of college and I was 3000 miles away from home with NO FRIENDS in sight. But what did I do, you ask? I talked to people awaiting transplant and learned everything I could about other people's experiences. My friends came to visit. I got out of the house, saw New Orleans and said to myself this could very well be my last few months on earth...am I going to cry about it? Hell no! If I'm checking out, I'm making sure to go out on top. I actaully had fun waiting for my transplant. I didn't sit around and give myself the chance to even realize what was going on. The first time I got scared and it hit me that I may not make it, was when they were wheeling me back to the operating room. By that time alls I could do was look at the surgeon and say Good Luck!

One more thing, to all of the people waiting for their transplant. Talk to people who have been through it. Not just people who are waiting, or who have been on their evaluation. People who have been through the surgery, the recovery, the good and the bad. We are the people who know what goes one, who have been in the waiting room countless number of times with others who have had their transplants, have seen the good outcomes, the bad outcomes and the worse outcomes. I remember I got a call for lungs 13 days after I was in New Orleans. It turned out to be a dry run. A couple of days later I was thankful it didn't go through because I realized I wasn't ready. All of my questions were not answered. So for the next five months, I searched out transplant patients. I asked them all of my questions until I gained a strong sense of peace. I had asked all of my questions and I was ready for that call. Whatever lay ahead of me, I was ready to handle it, good or bad. I truly felt it was in God's hands at that point. And that sense of peace, of being READY for that call is super important.

And I almost look at transplant as a right of passage too which is why i am telling you, original poster to talk to people who have been through it. You truly cannot understand the transplant experience until you have been through it.

Would I do it again? Absolutely! Would I remain as positive as I did the first time? By all means.

Good Luck to all who are waiting. And ask those questions, and stay positive no matter what anyone says.

And as usual Risa, your transplant story never ceases to amaze me. Your attitude is contagious and you are seriously one of my heroes!
 

summer732

New member
I never said that a positive attitude fixes all, but IN MY OPINION, yes, it helps! (I really don't understand what people have against smiling and being happy, even in tough situations) Believe me, I am by no means, Suzy Sunshine all the time. There are times that I get annoyed, that I am mad that I have to take yet ANOTHER one of my very few vacation days from work to sit in a hospital. That I yet again, developed a pneumonia, that my pfts are down. But guess what, sh*t happens and I'd rather do it with a positive attitude and smile on my face then piss and moan about it. And you know what, I'm determined to get better damnit! I refuse to let anything get to me without one hell of a fight! Plus, there are people who have it a lot worse off then I do, so where the hell is my right to have a bad attitude. In my opinion, I have no right to complain about anything! With all the things that have gone wrong in my life, hell I consider myself one lucky person! And you know what my pfts went up in the last month (knock on wood many times).

There is nothing wrong with having a positive attitude and BELIEVING that that positive attitude will help you through the rough times. If that is what helps people get through the tough times, then by all means, let's be positive. I try to mix a positive attitude with a sense of realism. I am realistic about my life and the things that can go wrong, but my no means do I dwell on it! My mother does though, and this is the reason her and I do not get along and/or agree when it comes to my health. And I think that a majority of people underestimate the mind/body connection. My body knows when I am in a negative mood about something, and if I am sick it takes me longer to heal.

Everyone is going to treat life differently and approach different experiences with a different attitude. Believe me, my transplant situation COULD HAVE BEEN awful if I let it. I was dying, while my friends were attending their final year of college and I was 3000 miles away from home with NO FRIENDS in sight. But what did I do, you ask? I talked to people awaiting transplant and learned everything I could about other people's experiences. My friends came to visit. I got out of the house, saw New Orleans and said to myself this could very well be my last few months on earth...am I going to cry about it? Hell no! If I'm checking out, I'm making sure to go out on top. I actaully had fun waiting for my transplant. I didn't sit around and give myself the chance to even realize what was going on. The first time I got scared and it hit me that I may not make it, was when they were wheeling me back to the operating room. By that time alls I could do was look at the surgeon and say Good Luck!

One more thing, to all of the people waiting for their transplant. Talk to people who have been through it. Not just people who are waiting, or who have been on their evaluation. People who have been through the surgery, the recovery, the good and the bad. We are the people who know what goes one, who have been in the waiting room countless number of times with others who have had their transplants, have seen the good outcomes, the bad outcomes and the worse outcomes. I remember I got a call for lungs 13 days after I was in New Orleans. It turned out to be a dry run. A couple of days later I was thankful it didn't go through because I realized I wasn't ready. All of my questions were not answered. So for the next five months, I searched out transplant patients. I asked them all of my questions until I gained a strong sense of peace. I had asked all of my questions and I was ready for that call. Whatever lay ahead of me, I was ready to handle it, good or bad. I truly felt it was in God's hands at that point. And that sense of peace, of being READY for that call is super important.

And I almost look at transplant as a right of passage too which is why i am telling you, original poster to talk to people who have been through it. You truly cannot understand the transplant experience until you have been through it.

Would I do it again? Absolutely! Would I remain as positive as I did the first time? By all means.

Good Luck to all who are waiting. And ask those questions, and stay positive no matter what anyone says.

And as usual Risa, your transplant story never ceases to amaze me. Your attitude is contagious and you are seriously one of my heroes!
 

Emily65Roses

New member
*bashes head against the wall*

I DID NOT SAY I HAVE ANYTHING AGAINST POSITIVITY!!! For f*ck's sake. You people need to read my words carefully, or not respond to them at all. Let me copy:

<div class="FTQUOTE"><begin quote><b>I have no problem with people being positive</b> (contrary to what may be popular belief around here). I'm just tired of people acting like their positivity is the reason their health was fairly successful (or why they lived so long, etc etc). Because that's crap, and <b>it makes it sound like those who died younger did so because of their own failings.</b></end quote></div>

THAT is where my problem lies.
 

Emily65Roses

New member
*bashes head against the wall*

I DID NOT SAY I HAVE ANYTHING AGAINST POSITIVITY!!! For f*ck's sake. You people need to read my words carefully, or not respond to them at all. Let me copy:

<div class="FTQUOTE"><begin quote><b>I have no problem with people being positive</b> (contrary to what may be popular belief around here). I'm just tired of people acting like their positivity is the reason their health was fairly successful (or why they lived so long, etc etc). Because that's crap, and <b>it makes it sound like those who died younger did so because of their own failings.</b></end quote></div>

THAT is where my problem lies.
 

Emily65Roses

New member
*bashes head against the wall*

I DID NOT SAY I HAVE ANYTHING AGAINST POSITIVITY!!! For f*ck's sake. You people need to read my words carefully, or not respond to them at all. Let me copy:

<div class="FTQUOTE"><begin quote><b>I have no problem with people being positive</b> (contrary to what may be popular belief around here). I'm just tired of people acting like their positivity is the reason their health was fairly successful (or why they lived so long, etc etc). Because that's crap, and <b>it makes it sound like those who died younger did so because of their own failings.</b></end quote></div>

THAT is where my problem lies.
 

Emily65Roses

New member
I have an understanding of considering the process. And do NOT tell me what I can or can't comment on. Having had a transplant doesn't make you so special that you own the transplant topic, or can decide who can or cannot reply to it.

And I didn't judge anyone's positivity regarding the situation. You HAVE to be positive to make it through that mess. I think it makes perfect sense. I told you what I have a problem with. If you can't read my words properly, do not respond.
 

Emily65Roses

New member
I have an understanding of considering the process. And do NOT tell me what I can or can't comment on. Having had a transplant doesn't make you so special that you own the transplant topic, or can decide who can or cannot reply to it.

And I didn't judge anyone's positivity regarding the situation. You HAVE to be positive to make it through that mess. I think it makes perfect sense. I told you what I have a problem with. If you can't read my words properly, do not respond.
 
Top