after transplant

nicolaj

New member
saw a transplant doctor today for the first time, and was told that after transplant you are living on borrowed time! what does he mean by this! i some how thought that by having a transplant, id live for years and years and years!! i no there are sometimes complications, but do your new lungs have an "expiry date!"
he mentioned 7 years.

nicola xx
 

nicolaj

New member
saw a transplant doctor today for the first time, and was told that after transplant you are living on borrowed time! what does he mean by this! i some how thought that by having a transplant, id live for years and years and years!! i no there are sometimes complications, but do your new lungs have an "expiry date!"
he mentioned 7 years.

nicola xx
 

nicolaj

New member
saw a transplant doctor today for the first time, and was told that after transplant you are living on borrowed time! what does he mean by this! i some how thought that by having a transplant, id live for years and years and years!! i no there are sometimes complications, but do your new lungs have an "expiry date!"
he mentioned 7 years.

nicola xx
 

JazzysMom

New member
We are already living on borrrowed time and tho a tx is potentially going to give a bit of extra quality time. Its not an easy fix. You exchange one set of meds for another and potentially one set of problems for another. There have even been people that got lungs that arent the greatest. Marjolein is one of them. They arent as strong & healthy as she would want, but they arent as bad as her old ones either. Good and bad!
 

JazzysMom

New member
We are already living on borrrowed time and tho a tx is potentially going to give a bit of extra quality time. Its not an easy fix. You exchange one set of meds for another and potentially one set of problems for another. There have even been people that got lungs that arent the greatest. Marjolein is one of them. They arent as strong & healthy as she would want, but they arent as bad as her old ones either. Good and bad!
 

JazzysMom

New member
We are already living on borrrowed time and tho a tx is potentially going to give a bit of extra quality time. Its not an easy fix. You exchange one set of meds for another and potentially one set of problems for another. There have even been people that got lungs that arent the greatest. Marjolein is one of them. They arent as strong & healthy as she would want, but they arent as bad as her old ones either. Good and bad!
 

beyerdug

New member
The problem with a transplant is that you take immune suppressing drugs. That means you basically don't have a working immune system anymore. You will take antibiotics and other drugs to help protect you but you will have problems with getting sick. Lungs are also very delicate and the shock of transplanting them weakens them. Your body will continually try to reject them as well. I don't tell you this to scare you or change your mind about a transplant. These are just the facts as I know them. I work in a transplant ICU and have seen many lung transplant patients. I am told that they usually do pretty good for the first year post transplant then start to decline in health. 7 years is also the number I have been told. Of course, I have an interest in lung transplants because of my cf and possibly needing a transplant in the future. Good luck with your endeavor.

Doug
 

beyerdug

New member
The problem with a transplant is that you take immune suppressing drugs. That means you basically don't have a working immune system anymore. You will take antibiotics and other drugs to help protect you but you will have problems with getting sick. Lungs are also very delicate and the shock of transplanting them weakens them. Your body will continually try to reject them as well. I don't tell you this to scare you or change your mind about a transplant. These are just the facts as I know them. I work in a transplant ICU and have seen many lung transplant patients. I am told that they usually do pretty good for the first year post transplant then start to decline in health. 7 years is also the number I have been told. Of course, I have an interest in lung transplants because of my cf and possibly needing a transplant in the future. Good luck with your endeavor.

Doug
 

beyerdug

New member
The problem with a transplant is that you take immune suppressing drugs. That means you basically don't have a working immune system anymore. You will take antibiotics and other drugs to help protect you but you will have problems with getting sick. Lungs are also very delicate and the shock of transplanting them weakens them. Your body will continually try to reject them as well. I don't tell you this to scare you or change your mind about a transplant. These are just the facts as I know them. I work in a transplant ICU and have seen many lung transplant patients. I am told that they usually do pretty good for the first year post transplant then start to decline in health. 7 years is also the number I have been told. Of course, I have an interest in lung transplants because of my cf and possibly needing a transplant in the future. Good luck with your endeavor.

Doug
 

Landy

New member
Someplace I had heard 2% per year too, but obviously that can be different for each patient.
I've had times where I dropped quite a few points pretty quickly & then stayed at that same place for a few years. Too bad that CF isn't more black & white, there are so many unpredictables & unknowns....
 

Landy

New member
Someplace I had heard 2% per year too, but obviously that can be different for each patient.
I've had times where I dropped quite a few points pretty quickly & then stayed at that same place for a few years. Too bad that CF isn't more black & white, there are so many unpredictables & unknowns....
 

Landy

New member
Someplace I had heard 2% per year too, but obviously that can be different for each patient.
I've had times where I dropped quite a few points pretty quickly & then stayed at that same place for a few years. Too bad that CF isn't more black & white, there are so many unpredictables & unknowns....
 

summer732

New member
Okay so I hate when people make transplant out to be worse than it is. As Joann once explained to me, the transplant team does not send your immune system packing. You have a working immune system, it is simply surpressed. So yes, you have to be careful, wash your hands, don't be around people who have something, no sharing food or drinks...but the fact is you will get colds, and you will fight them off. The average of 7 years is just that. It is an average. Some of the statistics will say "50% of the people will be alive after five years" blah blah. But what my doctor pointed out to me, is that those numbers are no indication of how well YOU will do.

So with that being said, I live everyday of my life like I will be living on and on and on. I'm not in a rush to do things as i was in the past because I have been givin the gift of time. Don't let numbers or statistics discourage you. Let the dream of being able to walk/run/jump/laugh without getting winded, coughing or using oxygen. A life where there is no vest, no chest pt, no iv's.

Yes, transplant has it downs. i.e catching two pretty serious cold viruses with a pneumonia back to back and losing some lung function (my case right now). But with some hard work and determination and the right mix of a bump and taper on the steroids and some antibiotics, my lung functions have slowly been going back up to my baseline. Hopefully next month, I will be back to normal! When it comes to transplant you have to roll with the punches. Take the good with the bad. Because believe me, as good as it can get with a transplant is worth every annoying doctor's appointment, every cat scan, chest x-ray and set of pfts that I have had to do when things got a little rough.

Believe me, there is nothing like going to work for a week then, walking around the city with friends on the weekends, dancing all night, doing the Irish Jig in the middle of the street during St. Patrick's day celebrations, only to be thrown into fits of laughter, take a deep breath and keep walking....
 

summer732

New member
Okay so I hate when people make transplant out to be worse than it is. As Joann once explained to me, the transplant team does not send your immune system packing. You have a working immune system, it is simply surpressed. So yes, you have to be careful, wash your hands, don't be around people who have something, no sharing food or drinks...but the fact is you will get colds, and you will fight them off. The average of 7 years is just that. It is an average. Some of the statistics will say "50% of the people will be alive after five years" blah blah. But what my doctor pointed out to me, is that those numbers are no indication of how well YOU will do.

So with that being said, I live everyday of my life like I will be living on and on and on. I'm not in a rush to do things as i was in the past because I have been givin the gift of time. Don't let numbers or statistics discourage you. Let the dream of being able to walk/run/jump/laugh without getting winded, coughing or using oxygen. A life where there is no vest, no chest pt, no iv's.

Yes, transplant has it downs. i.e catching two pretty serious cold viruses with a pneumonia back to back and losing some lung function (my case right now). But with some hard work and determination and the right mix of a bump and taper on the steroids and some antibiotics, my lung functions have slowly been going back up to my baseline. Hopefully next month, I will be back to normal! When it comes to transplant you have to roll with the punches. Take the good with the bad. Because believe me, as good as it can get with a transplant is worth every annoying doctor's appointment, every cat scan, chest x-ray and set of pfts that I have had to do when things got a little rough.

Believe me, there is nothing like going to work for a week then, walking around the city with friends on the weekends, dancing all night, doing the Irish Jig in the middle of the street during St. Patrick's day celebrations, only to be thrown into fits of laughter, take a deep breath and keep walking....
 

summer732

New member
Okay so I hate when people make transplant out to be worse than it is. As Joann once explained to me, the transplant team does not send your immune system packing. You have a working immune system, it is simply surpressed. So yes, you have to be careful, wash your hands, don't be around people who have something, no sharing food or drinks...but the fact is you will get colds, and you will fight them off. The average of 7 years is just that. It is an average. Some of the statistics will say "50% of the people will be alive after five years" blah blah. But what my doctor pointed out to me, is that those numbers are no indication of how well YOU will do.

So with that being said, I live everyday of my life like I will be living on and on and on. I'm not in a rush to do things as i was in the past because I have been givin the gift of time. Don't let numbers or statistics discourage you. Let the dream of being able to walk/run/jump/laugh without getting winded, coughing or using oxygen. A life where there is no vest, no chest pt, no iv's.

Yes, transplant has it downs. i.e catching two pretty serious cold viruses with a pneumonia back to back and losing some lung function (my case right now). But with some hard work and determination and the right mix of a bump and taper on the steroids and some antibiotics, my lung functions have slowly been going back up to my baseline. Hopefully next month, I will be back to normal! When it comes to transplant you have to roll with the punches. Take the good with the bad. Because believe me, as good as it can get with a transplant is worth every annoying doctor's appointment, every cat scan, chest x-ray and set of pfts that I have had to do when things got a little rough.

Believe me, there is nothing like going to work for a week then, walking around the city with friends on the weekends, dancing all night, doing the Irish Jig in the middle of the street during St. Patrick's day celebrations, only to be thrown into fits of laughter, take a deep breath and keep walking....
 

eli

New member
Just a qiuck ???

When you say the immune system is supressed, is it supressed for a short period or for the rest of you life post transplant?

Sorry if its a dumb question!
 

eli

New member
Just a qiuck ???

When you say the immune system is supressed, is it supressed for a short period or for the rest of you life post transplant?

Sorry if its a dumb question!
 

eli

New member
Just a qiuck ???

When you say the immune system is supressed, is it supressed for a short period or for the rest of you life post transplant?

Sorry if its a dumb question!
 

beyerdug

New member
Your immune system is suppressed for the rest of your post transplant life. That is because your body will continue to try and rid itself of the new lungs. The lungs are foreign to your body and act like an antigen. Your bodies immune system will try and fight them off by creating an antibody. The immune suppressing drugs will help keep your body from creating that antibody, not only for the lungs but because the drugs aren't tailored specifically for the lungs, they will also limit the antibodies your system can create to fight off infections. You will also take a regimen of antibiotics, antifungals, steroids, and other drugs. Some people think they get a new lung and their life becomes normal. That is not so, life is what you make of it if you have cf or a lung transplant. Drugs and complications are just a part of life for us.

Doug
 

beyerdug

New member
Your immune system is suppressed for the rest of your post transplant life. That is because your body will continue to try and rid itself of the new lungs. The lungs are foreign to your body and act like an antigen. Your bodies immune system will try and fight them off by creating an antibody. The immune suppressing drugs will help keep your body from creating that antibody, not only for the lungs but because the drugs aren't tailored specifically for the lungs, they will also limit the antibodies your system can create to fight off infections. You will also take a regimen of antibiotics, antifungals, steroids, and other drugs. Some people think they get a new lung and their life becomes normal. That is not so, life is what you make of it if you have cf or a lung transplant. Drugs and complications are just a part of life for us.

Doug
 
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