whats the real tx story?

coltsfan715 · Jan 14, 2009

The real transplant story - um .... al I can say is that to me transplant is alot like cf in the respect that EVERY case is different.

I personally am coming up on 2 years post transplant and am doing fantastic. I have had one of those - "to good to be true" transplant experiences. I have not had any issues with rejection or infection and really haven't had any issues related to my transplant at all. My pfts are around 90% and have been that way since about 3 months post transplant.

Then take in comparison one of my friends that had her transplant and spent about 2 months in the hospital recovering. Dealt with several bouts of rejection. She was discharged only to be admitted at her next appointment because during a regular test she suffered a collapsed lung. The she had to be admitted again a few weeks later because she had fluid build up on her lungs. Then a few weeks after that she was back because she just got sick from something. Now she is over a year post transplant and she was just in the hospital with a bout of pnuemonia - BUT she is doing great. If you talk to her she is enjoying life and happy she went with transplant. She is 21 and has CF.

Then I have another friend who for the love of everything holy has been through so much with his transplant but again he is still happy he chose to do it. It has just been much more challenging than he ever thought possible. He is currently wheelchair bound because he somehow got a Psuedomonas infection in his hip and it killed the ball joint. They had to remove a portion of the bone and he is in a wheelchair until they are confident that the Psuedo is completely gone and they can do a hip replacement - he is also non CFer and in his late 40s.

All I can say is that transplant is the hardest thing I have had to go through in my life and I have had an easy recovery in comparison to many - meaning relatively problem free. To think that transplant is easy is a grave mistake - the life that people have afterwards may seem great and wonderful but the steps it took to get there are NOT easy. It is just something that you have to go through or had to go through and it just isn't really talked about for the most part unless people straight up ask about it. What is more important is the life after all the recovery crap. After the hospital stay and the surgery and the limitations and all - the bad or unpleasant stuff (meaning the pain, stitches/staples, soreness, med side effects, sleeplessness, constant lab work, frequent testing, and so on) to me just doesn't seem worth mentioning all the time.

I go through everyday and honestly I rarely think about that stuff unless someone brings it up - or I have nothing to do and am just sitting .. thinking.

Either way I say make the decision based on you. Not other people's stories because most likely your story will be completely different than anyone elses. You have to go into this decision (if it is what you choose) commited to yourself and committed to taking care of yourself above anything else. Make the decision for YOU. You are the one taking the meds everyday, you are the one that is going to be in pain afterwards, you are the one that has to go through rehab and therapy, YOU are the one that has to do this for the rest of your life - not your mom, borther, boyfriend/girlfriend, husband/wife, friend, sister, dad, coworker or just random joe on the street.

This is one decision that regardless of what others think you have to make it for you. I only say that because like I said - it is by far the most difficult thing I have ever gone through in my life. I am glad I did it and I would do it again if needed but it is something that if you do not go into it fully committed you can have some setbacks and just loose your drive. Even if you go in fully committed you can have setbacks but at least you are committed to doing what needs to be done to get you to a point that you are happy and healthy.

Love Linds

Best of Luck and take as much time as you need in making your decision.

coltsfan715 · Jan 14, 2009

The real transplant story - um .... al I can say is that to me transplant is alot like cf in the respect that EVERY case is different.

I personally am coming up on 2 years post transplant and am doing fantastic. I have had one of those - "to good to be true" transplant experiences. I have not had any issues with rejection or infection and really haven't had any issues related to my transplant at all. My pfts are around 90% and have been that way since about 3 months post transplant.

Then take in comparison one of my friends that had her transplant and spent about 2 months in the hospital recovering. Dealt with several bouts of rejection. She was discharged only to be admitted at her next appointment because during a regular test she suffered a collapsed lung. The she had to be admitted again a few weeks later because she had fluid build up on her lungs. Then a few weeks after that she was back because she just got sick from something. Now she is over a year post transplant and she was just in the hospital with a bout of pnuemonia - BUT she is doing great. If you talk to her she is enjoying life and happy she went with transplant. She is 21 and has CF.

Then I have another friend who for the love of everything holy has been through so much with his transplant but again he is still happy he chose to do it. It has just been much more challenging than he ever thought possible. He is currently wheelchair bound because he somehow got a Psuedomonas infection in his hip and it killed the ball joint. They had to remove a portion of the bone and he is in a wheelchair until they are confident that the Psuedo is completely gone and they can do a hip replacement - he is also non CFer and in his late 40s.

All I can say is that transplant is the hardest thing I have had to go through in my life and I have had an easy recovery in comparison to many - meaning relatively problem free. To think that transplant is easy is a grave mistake - the life that people have afterwards may seem great and wonderful but the steps it took to get there are NOT easy. It is just something that you have to go through or had to go through and it just isn't really talked about for the most part unless people straight up ask about it. What is more important is the life after all the recovery crap. After the hospital stay and the surgery and the limitations and all - the bad or unpleasant stuff (meaning the pain, stitches/staples, soreness, med side effects, sleeplessness, constant lab work, frequent testing, and so on) to me just doesn't seem worth mentioning all the time.

I go through everyday and honestly I rarely think about that stuff unless someone brings it up - or I have nothing to do and am just sitting .. thinking.

Either way I say make the decision based on you. Not other people's stories because most likely your story will be completely different than anyone elses. You have to go into this decision (if it is what you choose) commited to yourself and committed to taking care of yourself above anything else. Make the decision for YOU. You are the one taking the meds everyday, you are the one that is going to be in pain afterwards, you are the one that has to go through rehab and therapy, YOU are the one that has to do this for the rest of your life - not your mom, borther, boyfriend/girlfriend, husband/wife, friend, sister, dad, coworker or just random joe on the street.

This is one decision that regardless of what others think you have to make it for you. I only say that because like I said - it is by far the most difficult thing I have ever gone through in my life. I am glad I did it and I would do it again if needed but it is something that if you do not go into it fully committed you can have some setbacks and just loose your drive. Even if you go in fully committed you can have setbacks but at least you are committed to doing what needs to be done to get you to a point that you are happy and healthy.

Love Linds

Best of Luck and take as much time as you need in making your decision.

coltsfan715 · Jan 14, 2009

The real transplant story - um .... al I can say is that to me transplant is alot like cf in the respect that EVERY case is different.

I personally am coming up on 2 years post transplant and am doing fantastic. I have had one of those - "to good to be true" transplant experiences. I have not had any issues with rejection or infection and really haven't had any issues related to my transplant at all. My pfts are around 90% and have been that way since about 3 months post transplant.

Then take in comparison one of my friends that had her transplant and spent about 2 months in the hospital recovering. Dealt with several bouts of rejection. She was discharged only to be admitted at her next appointment because during a regular test she suffered a collapsed lung. The she had to be admitted again a few weeks later because she had fluid build up on her lungs. Then a few weeks after that she was back because she just got sick from something. Now she is over a year post transplant and she was just in the hospital with a bout of pnuemonia - BUT she is doing great. If you talk to her she is enjoying life and happy she went with transplant. She is 21 and has CF.

Then I have another friend who for the love of everything holy has been through so much with his transplant but again he is still happy he chose to do it. It has just been much more challenging than he ever thought possible. He is currently wheelchair bound because he somehow got a Psuedomonas infection in his hip and it killed the ball joint. They had to remove a portion of the bone and he is in a wheelchair until they are confident that the Psuedo is completely gone and they can do a hip replacement - he is also non CFer and in his late 40s.

All I can say is that transplant is the hardest thing I have had to go through in my life and I have had an easy recovery in comparison to many - meaning relatively problem free. To think that transplant is easy is a grave mistake - the life that people have afterwards may seem great and wonderful but the steps it took to get there are NOT easy. It is just something that you have to go through or had to go through and it just isn't really talked about for the most part unless people straight up ask about it. What is more important is the life after all the recovery crap. After the hospital stay and the surgery and the limitations and all - the bad or unpleasant stuff (meaning the pain, stitches/staples, soreness, med side effects, sleeplessness, constant lab work, frequent testing, and so on) to me just doesn't seem worth mentioning all the time.

I go through everyday and honestly I rarely think about that stuff unless someone brings it up - or I have nothing to do and am just sitting .. thinking.

Either way I say make the decision based on you. Not other people's stories because most likely your story will be completely different than anyone elses. You have to go into this decision (if it is what you choose) commited to yourself and committed to taking care of yourself above anything else. Make the decision for YOU. You are the one taking the meds everyday, you are the one that is going to be in pain afterwards, you are the one that has to go through rehab and therapy, YOU are the one that has to do this for the rest of your life - not your mom, borther, boyfriend/girlfriend, husband/wife, friend, sister, dad, coworker or just random joe on the street.

This is one decision that regardless of what others think you have to make it for you. I only say that because like I said - it is by far the most difficult thing I have ever gone through in my life. I am glad I did it and I would do it again if needed but it is something that if you do not go into it fully committed you can have some setbacks and just loose your drive. Even if you go in fully committed you can have setbacks but at least you are committed to doing what needs to be done to get you to a point that you are happy and healthy.

Love Linds

Best of Luck and take as much time as you need in making your decision.

coltsfan715 · Jan 14, 2009

The real transplant story - um .... al I can say is that to me transplant is alot like cf in the respect that EVERY case is different.

I personally am coming up on 2 years post transplant and am doing fantastic. I have had one of those - "to good to be true" transplant experiences. I have not had any issues with rejection or infection and really haven't had any issues related to my transplant at all. My pfts are around 90% and have been that way since about 3 months post transplant.

Then take in comparison one of my friends that had her transplant and spent about 2 months in the hospital recovering. Dealt with several bouts of rejection. She was discharged only to be admitted at her next appointment because during a regular test she suffered a collapsed lung. The she had to be admitted again a few weeks later because she had fluid build up on her lungs. Then a few weeks after that she was back because she just got sick from something. Now she is over a year post transplant and she was just in the hospital with a bout of pnuemonia - BUT she is doing great. If you talk to her she is enjoying life and happy she went with transplant. She is 21 and has CF.

Then I have another friend who for the love of everything holy has been through so much with his transplant but again he is still happy he chose to do it. It has just been much more challenging than he ever thought possible. He is currently wheelchair bound because he somehow got a Psuedomonas infection in his hip and it killed the ball joint. They had to remove a portion of the bone and he is in a wheelchair until they are confident that the Psuedo is completely gone and they can do a hip replacement - he is also non CFer and in his late 40s.

All I can say is that transplant is the hardest thing I have had to go through in my life and I have had an easy recovery in comparison to many - meaning relatively problem free. To think that transplant is easy is a grave mistake - the life that people have afterwards may seem great and wonderful but the steps it took to get there are NOT easy. It is just something that you have to go through or had to go through and it just isn't really talked about for the most part unless people straight up ask about it. What is more important is the life after all the recovery crap. After the hospital stay and the surgery and the limitations and all - the bad or unpleasant stuff (meaning the pain, stitches/staples, soreness, med side effects, sleeplessness, constant lab work, frequent testing, and so on) to me just doesn't seem worth mentioning all the time.

I go through everyday and honestly I rarely think about that stuff unless someone brings it up - or I have nothing to do and am just sitting .. thinking.

Either way I say make the decision based on you. Not other people's stories because most likely your story will be completely different than anyone elses. You have to go into this decision (if it is what you choose) commited to yourself and committed to taking care of yourself above anything else. Make the decision for YOU. You are the one taking the meds everyday, you are the one that is going to be in pain afterwards, you are the one that has to go through rehab and therapy, YOU are the one that has to do this for the rest of your life - not your mom, borther, boyfriend/girlfriend, husband/wife, friend, sister, dad, coworker or just random joe on the street.

This is one decision that regardless of what others think you have to make it for you. I only say that because like I said - it is by far the most difficult thing I have ever gone through in my life. I am glad I did it and I would do it again if needed but it is something that if you do not go into it fully committed you can have some setbacks and just loose your drive. Even if you go in fully committed you can have setbacks but at least you are committed to doing what needs to be done to get you to a point that you are happy and healthy.

Love Linds

Best of Luck and take as much time as you need in making your decision.

coltsfan715 · Jan 14, 2009

The real transplant story - um .... al I can say is that to me transplant is alot like cf in the respect that EVERY case is different.
 
 I personally am coming up on 2 years post transplant and am doing fantastic. I have had one of those - "to good to be true" transplant experiences. I have not had any issues with rejection or infection and really haven't had any issues related to my transplant at all. My pfts are around 90% and have been that way since about 3 months post transplant.
 
 Then take in comparison one of my friends that had her transplant and spent about 2 months in the hospital recovering. Dealt with several bouts of rejection. She was discharged only to be admitted at her next appointment because during a regular test she suffered a collapsed lung. The she had to be admitted again a few weeks later because she had fluid build up on her lungs. Then a few weeks after that she was back because she just got sick from something. Now she is over a year post transplant and she was just in the hospital with a bout of pnuemonia - BUT she is doing great. If you talk to her she is enjoying life and happy she went with transplant. She is 21 and has CF.
 
 Then I have another friend who for the love of everything holy has been through so much with his transplant but again he is still happy he chose to do it. It has just been much more challenging than he ever thought possible. He is currently wheelchair bound because he somehow got a Psuedomonas infection in his hip and it killed the ball joint. They had to remove a portion of the bone and he is in a wheelchair until they are confident that the Psuedo is completely gone and they can do a hip replacement - he is also non CFer and in his late 40s.
 
 All I can say is that transplant is the hardest thing I have had to go through in my life and I have had an easy recovery in comparison to many - meaning relatively problem free. To think that transplant is easy is a grave mistake - the life that people have afterwards may seem great and wonderful but the steps it took to get there are NOT easy. It is just something that you have to go through or had to go through and it just isn't really talked about for the most part unless people straight up ask about it. What is more important is the life after all the recovery crap. After the hospital stay and the surgery and the limitations and all - the bad or unpleasant stuff (meaning the pain, stitches/staples, soreness, med side effects, sleeplessness, constant lab work, frequent testing, and so on) to me just doesn't seem worth mentioning all the time.
 
 I go through everyday and honestly I rarely think about that stuff unless someone brings it up - or I have nothing to do and am just sitting .. thinking.
 
 Either way I say make the decision based on you. Not other people's stories because most likely your story will be completely different than anyone elses. You have to go into this decision (if it is what you choose) commited to yourself and committed to taking care of yourself above anything else. Make the decision for YOU. You are the one taking the meds everyday, you are the one that is going to be in pain afterwards, you are the one that has to go through rehab and therapy, YOU are the one that has to do this for the rest of your life - not your mom, borther, boyfriend/girlfriend, husband/wife, friend, sister, dad, coworker or just random joe on the street.
 
 This is one decision that regardless of what others think you have to make it for you. I only say that because like I said - it is by far the most difficult thing I have ever gone through in my life. I am glad I did it and I would do it again if needed but it is something that if you do not go into it fully committed you can have some setbacks and just loose your drive. Even if you go in fully committed you can have setbacks but at least you are committed to doing what needs to be done to get you to a point that you are happy and healthy.
 
 Love Linds
 
 Best of Luck and take as much time as you need in making your decision.

coltsfan715 · Jan 14, 2009

I just wanted to add - because I kind of made it seem like you do the rehab and appt thing all the time for the rest of your life in one of the sentences.

I am now at a point where I do not go to rehab (and haven't since about 3months post) and I have appts every 3-4 months and lab work every few months as well).

Your life does become semi normal - if that is possible. Now I am working about 30 hours a week and going to school fulltime and just recently bought my first place with my fiance and am really enjoying life in general.

I just wanted to clarify that for a second sorry <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey

coltsfan715 · Jan 14, 2009

I just wanted to add - because I kind of made it seem like you do the rehab and appt thing all the time for the rest of your life in one of the sentences.

I am now at a point where I do not go to rehab (and haven't since about 3months post) and I have appts every 3-4 months and lab work every few months as well).

Your life does become semi normal - if that is possible. Now I am working about 30 hours a week and going to school fulltime and just recently bought my first place with my fiance and am really enjoying life in general.

I just wanted to clarify that for a second sorry <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey

coltsfan715 · Jan 14, 2009

I just wanted to add - because I kind of made it seem like you do the rehab and appt thing all the time for the rest of your life in one of the sentences.

I am now at a point where I do not go to rehab (and haven't since about 3months post) and I have appts every 3-4 months and lab work every few months as well).

Your life does become semi normal - if that is possible. Now I am working about 30 hours a week and going to school fulltime and just recently bought my first place with my fiance and am really enjoying life in general.

I just wanted to clarify that for a second sorry <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey

coltsfan715 · Jan 14, 2009

I just wanted to add - because I kind of made it seem like you do the rehab and appt thing all the time for the rest of your life in one of the sentences.

I am now at a point where I do not go to rehab (and haven't since about 3months post) and I have appts every 3-4 months and lab work every few months as well).

Your life does become semi normal - if that is possible. Now I am working about 30 hours a week and going to school fulltime and just recently bought my first place with my fiance and am really enjoying life in general.

I just wanted to clarify that for a second sorry <img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey

coltsfan715 · Jan 14, 2009

I just wanted to add - because I kind of made it seem like you do the rehab and appt thing all the time for the rest of your life in one of the sentences.
 
 I am now at a point where I do not go to rehab (and haven't since about 3months post) and I have appts every 3-4 months and lab work every few months as well).
 
 Your life does become semi normal - if that is possible. Now I am working about 30 hours a week and going to school fulltime and just recently bought my first place with my fiance and am really enjoying life in general.
 
 I just wanted to clarify that for a second sorry <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 Lindsey

summer732 · Jan 14, 2009

I agree with most of the people on here that everyone is so different. So I don't think that the people who have great stories are sugar coating anything, that was just their journey.

I say talk to a range of people. When I was deciding about transplant my doctor made me speak to people who didn't have great outcomes as well as people who did. Make sure the roadblocks that you could quite possibly face are challenges that you can handle.

From the people I have talked to, or who have come to me for advice, two of them have died (one on the table, one about three months post tx), one is in chronic rejection and back on oxygen, another had to have another single lung tx, one is about 3 1/2 years post tx and doing fabulous, another one is still waiting. The person that I spoke to is 12 years post tx and she is doing amazing.

My point is you just never know. You have to decide if this is the road for you. It's definitely a challenging road. There are feelings of guilt. The side effects in the beginning are a lot to deal with, although eventually they go away. And no, you can't 'plan' your cleanouts. There is a greater sense of urgency now if your pfts fall a bit or if you have a runny nose.

All of those things are simply trade offs. There are going to be difficult times, but are those enough to overwhelm the good times? For me, that answer would be no. I thank God everyday because I have had an amazing post transplant experience and am now training to run a half marathon (hopefully one day I'll be able to run a full...but baby steps first!). My only advice is exercise, exercise, exercise. It is quite possibly the single most important thing both pre and post transplant.

Good luck with your decision!

summer732 · Jan 14, 2009

I agree with most of the people on here that everyone is so different. So I don't think that the people who have great stories are sugar coating anything, that was just their journey.

I say talk to a range of people. When I was deciding about transplant my doctor made me speak to people who didn't have great outcomes as well as people who did. Make sure the roadblocks that you could quite possibly face are challenges that you can handle.

From the people I have talked to, or who have come to me for advice, two of them have died (one on the table, one about three months post tx), one is in chronic rejection and back on oxygen, another had to have another single lung tx, one is about 3 1/2 years post tx and doing fabulous, another one is still waiting. The person that I spoke to is 12 years post tx and she is doing amazing.

My point is you just never know. You have to decide if this is the road for you. It's definitely a challenging road. There are feelings of guilt. The side effects in the beginning are a lot to deal with, although eventually they go away. And no, you can't 'plan' your cleanouts. There is a greater sense of urgency now if your pfts fall a bit or if you have a runny nose.

All of those things are simply trade offs. There are going to be difficult times, but are those enough to overwhelm the good times? For me, that answer would be no. I thank God everyday because I have had an amazing post transplant experience and am now training to run a half marathon (hopefully one day I'll be able to run a full...but baby steps first!). My only advice is exercise, exercise, exercise. It is quite possibly the single most important thing both pre and post transplant.

Good luck with your decision!

summer732 · Jan 14, 2009

I agree with most of the people on here that everyone is so different. So I don't think that the people who have great stories are sugar coating anything, that was just their journey.

I say talk to a range of people. When I was deciding about transplant my doctor made me speak to people who didn't have great outcomes as well as people who did. Make sure the roadblocks that you could quite possibly face are challenges that you can handle.

From the people I have talked to, or who have come to me for advice, two of them have died (one on the table, one about three months post tx), one is in chronic rejection and back on oxygen, another had to have another single lung tx, one is about 3 1/2 years post tx and doing fabulous, another one is still waiting. The person that I spoke to is 12 years post tx and she is doing amazing.

My point is you just never know. You have to decide if this is the road for you. It's definitely a challenging road. There are feelings of guilt. The side effects in the beginning are a lot to deal with, although eventually they go away. And no, you can't 'plan' your cleanouts. There is a greater sense of urgency now if your pfts fall a bit or if you have a runny nose.

All of those things are simply trade offs. There are going to be difficult times, but are those enough to overwhelm the good times? For me, that answer would be no. I thank God everyday because I have had an amazing post transplant experience and am now training to run a half marathon (hopefully one day I'll be able to run a full...but baby steps first!). My only advice is exercise, exercise, exercise. It is quite possibly the single most important thing both pre and post transplant.

Good luck with your decision!

summer732 · Jan 14, 2009

I agree with most of the people on here that everyone is so different. So I don't think that the people who have great stories are sugar coating anything, that was just their journey.

I say talk to a range of people. When I was deciding about transplant my doctor made me speak to people who didn't have great outcomes as well as people who did. Make sure the roadblocks that you could quite possibly face are challenges that you can handle.

From the people I have talked to, or who have come to me for advice, two of them have died (one on the table, one about three months post tx), one is in chronic rejection and back on oxygen, another had to have another single lung tx, one is about 3 1/2 years post tx and doing fabulous, another one is still waiting. The person that I spoke to is 12 years post tx and she is doing amazing.

My point is you just never know. You have to decide if this is the road for you. It's definitely a challenging road. There are feelings of guilt. The side effects in the beginning are a lot to deal with, although eventually they go away. And no, you can't 'plan' your cleanouts. There is a greater sense of urgency now if your pfts fall a bit or if you have a runny nose.

All of those things are simply trade offs. There are going to be difficult times, but are those enough to overwhelm the good times? For me, that answer would be no. I thank God everyday because I have had an amazing post transplant experience and am now training to run a half marathon (hopefully one day I'll be able to run a full...but baby steps first!). My only advice is exercise, exercise, exercise. It is quite possibly the single most important thing both pre and post transplant.

Good luck with your decision!

summer732 · Jan 14, 2009

I agree with most of the people on here that everyone is so different. So I don't think that the people who have great stories are sugar coating anything, that was just their journey.
 
 I say talk to a range of people. When I was deciding about transplant my doctor made me speak to people who didn't have great outcomes as well as people who did. Make sure the roadblocks that you could quite possibly face are challenges that you can handle.
 
 From the people I have talked to, or who have come to me for advice, two of them have died (one on the table, one about three months post tx), one is in chronic rejection and back on oxygen, another had to have another single lung tx, one is about 3 1/2 years post tx and doing fabulous, another one is still waiting. The person that I spoke to is 12 years post tx and she is doing amazing.
 
 My point is you just never know. You have to decide if this is the road for you. It's definitely a challenging road. There are feelings of guilt. The side effects in the beginning are a lot to deal with, although eventually they go away. And no, you can't 'plan' your cleanouts. There is a greater sense of urgency now if your pfts fall a bit or if you have a runny nose.
 
 All of those things are simply trade offs. There are going to be difficult times, but are those enough to overwhelm the good times? For me, that answer would be no. I thank God everyday because I have had an amazing post transplant experience and am now training to run a half marathon (hopefully one day I'll be able to run a full...but baby steps first!). My only advice is exercise, exercise, exercise. It is quite possibly the single most important thing both pre and post transplant.
 
 Good luck with your decision!

Transplantmommy · Jan 14, 2009

I know that my transplant story may seem like a fairy tale but I have told people about the bad parts of it too. There was a lot that I actually hated about the transplant...the pain, the chest tubes, the nightmares from the meds, the not eating for 5 days, and my vocal cords were damaged and I could hardly talk above a whisper for 2 months after the Tx. Seriously, people standing right next to me could hardly hear me talking and it irritated the hell out of me!

What else went wrong? I had acute rejection within the first month of the tx. I had to be on high doses of Solumedrol which gave me some weird feelings and also gave me horrible nightmares. It really was awful and I couldn't imagine the day that I would have to do that again. Because of having the double lung and liver transplant the doctors had to cut through my sternum and about 2 months after the transplant I had a sternum wire poking through my skin and had to go into surgery for that. It was fixed and now I have what looks like a permanent bruise on my tx scar. I had another episode of rejection right after the surgery that I had and I could not be treated for that one because it would have hindered me recovering from the surgery. The rejection went away on it's own and I didn't have to be treated (thank God). That's only the beginning of things that have happened to me though.

I had three more surgeries after that, and although they were not directly related to the transplant, having the transplant and the new medications kind of kick started my colon going bad. I had problems with my colon on and off for a couple of years and the doctors never caught it. It was after the transplant and having new medications that irritated it even more to where the doctors were able to see what the matter was. I had c-diff and the beginning of Ulcerative Colitis. I was put on Flagyl in May 2007 and that helped for the 10 days that I was on it. But, once it stopped, the pain was back. I went back to the doctor and he sent me for a CT scan and they saw that my colon was infected and inflamed. I was sent back out to my transplant center and the lung doctors weren't sure what was happening but again I was feeling better and was going to go home. They sent the colorectal team in to see me before I was going to home and instead of telling me that I could go home, I was told that I needed surgery that night to have my colon removed. I went into surgery an hour later to have my colon removed and I woke up with a colostomy bag. Part of my small intestine was pulled through my abdomen, there was a bag placed over it, and that's how I went to the bathroom for 9 months. My surgery was on June 14, 2007, I had the surgery to attach the small intestine to the rectum on December 5, 2007, and then I had the final surgery to close the ileostomy and get rid of the colostomy bag on March 5, 2008. After 9 months, I was finally going to the bathroom normally again but now without my colon I go even more frequent than a CFer would.

Other than those complications, I had a fairly quick recovery. I had my double lung and liver on January 31, 2007 and was out of the hospital on February 12, and then home on March 2. My lung function has gone from 15% pre-tx to 94% post tx and I feel amazing. I never thought that a transplant could do this for me. I am going on 2 years this month and I am very happy with the results. Even with everything that happened post tx, I would definitely do it all over again. Like others above me have said, all transplants are different. I became friends with a guy on the Internet who has CF and had his double lung a month after I had mine. He didn't really have many complications and was feeling great and then went into chronic rejection right after his one year anniversary. He looked to me for help and I hooked him up with my team at the Cleveland Clinic, and after his first appointments there, he decided that he didn't want to go through it again. Sadly, he passed on November 8, 2008. He didn't even make it to 2 years. It still hurts to think about it....that I couldn't help him.

The way that I look at the transplant process is....go for it. If you don't take a chance on transplants, we all know where we would eventually end up anyway. Our crappy lungs can't hold on forever.

Transplantmommy · Jan 14, 2009

I know that my transplant story may seem like a fairy tale but I have told people about the bad parts of it too. There was a lot that I actually hated about the transplant...the pain, the chest tubes, the nightmares from the meds, the not eating for 5 days, and my vocal cords were damaged and I could hardly talk above a whisper for 2 months after the Tx. Seriously, people standing right next to me could hardly hear me talking and it irritated the hell out of me!

What else went wrong? I had acute rejection within the first month of the tx. I had to be on high doses of Solumedrol which gave me some weird feelings and also gave me horrible nightmares. It really was awful and I couldn't imagine the day that I would have to do that again. Because of having the double lung and liver transplant the doctors had to cut through my sternum and about 2 months after the transplant I had a sternum wire poking through my skin and had to go into surgery for that. It was fixed and now I have what looks like a permanent bruise on my tx scar. I had another episode of rejection right after the surgery that I had and I could not be treated for that one because it would have hindered me recovering from the surgery. The rejection went away on it's own and I didn't have to be treated (thank God). That's only the beginning of things that have happened to me though.

I had three more surgeries after that, and although they were not directly related to the transplant, having the transplant and the new medications kind of kick started my colon going bad. I had problems with my colon on and off for a couple of years and the doctors never caught it. It was after the transplant and having new medications that irritated it even more to where the doctors were able to see what the matter was. I had c-diff and the beginning of Ulcerative Colitis. I was put on Flagyl in May 2007 and that helped for the 10 days that I was on it. But, once it stopped, the pain was back. I went back to the doctor and he sent me for a CT scan and they saw that my colon was infected and inflamed. I was sent back out to my transplant center and the lung doctors weren't sure what was happening but again I was feeling better and was going to go home. They sent the colorectal team in to see me before I was going to home and instead of telling me that I could go home, I was told that I needed surgery that night to have my colon removed. I went into surgery an hour later to have my colon removed and I woke up with a colostomy bag. Part of my small intestine was pulled through my abdomen, there was a bag placed over it, and that's how I went to the bathroom for 9 months. My surgery was on June 14, 2007, I had the surgery to attach the small intestine to the rectum on December 5, 2007, and then I had the final surgery to close the ileostomy and get rid of the colostomy bag on March 5, 2008. After 9 months, I was finally going to the bathroom normally again but now without my colon I go even more frequent than a CFer would.

Other than those complications, I had a fairly quick recovery. I had my double lung and liver on January 31, 2007 and was out of the hospital on February 12, and then home on March 2. My lung function has gone from 15% pre-tx to 94% post tx and I feel amazing. I never thought that a transplant could do this for me. I am going on 2 years this month and I am very happy with the results. Even with everything that happened post tx, I would definitely do it all over again. Like others above me have said, all transplants are different. I became friends with a guy on the Internet who has CF and had his double lung a month after I had mine. He didn't really have many complications and was feeling great and then went into chronic rejection right after his one year anniversary. He looked to me for help and I hooked him up with my team at the Cleveland Clinic, and after his first appointments there, he decided that he didn't want to go through it again. Sadly, he passed on November 8, 2008. He didn't even make it to 2 years. It still hurts to think about it....that I couldn't help him.

The way that I look at the transplant process is....go for it. If you don't take a chance on transplants, we all know where we would eventually end up anyway. Our crappy lungs can't hold on forever.

Transplantmommy · Jan 14, 2009

I know that my transplant story may seem like a fairy tale but I have told people about the bad parts of it too. There was a lot that I actually hated about the transplant...the pain, the chest tubes, the nightmares from the meds, the not eating for 5 days, and my vocal cords were damaged and I could hardly talk above a whisper for 2 months after the Tx. Seriously, people standing right next to me could hardly hear me talking and it irritated the hell out of me!

What else went wrong? I had acute rejection within the first month of the tx. I had to be on high doses of Solumedrol which gave me some weird feelings and also gave me horrible nightmares. It really was awful and I couldn't imagine the day that I would have to do that again. Because of having the double lung and liver transplant the doctors had to cut through my sternum and about 2 months after the transplant I had a sternum wire poking through my skin and had to go into surgery for that. It was fixed and now I have what looks like a permanent bruise on my tx scar. I had another episode of rejection right after the surgery that I had and I could not be treated for that one because it would have hindered me recovering from the surgery. The rejection went away on it's own and I didn't have to be treated (thank God). That's only the beginning of things that have happened to me though.

I had three more surgeries after that, and although they were not directly related to the transplant, having the transplant and the new medications kind of kick started my colon going bad. I had problems with my colon on and off for a couple of years and the doctors never caught it. It was after the transplant and having new medications that irritated it even more to where the doctors were able to see what the matter was. I had c-diff and the beginning of Ulcerative Colitis. I was put on Flagyl in May 2007 and that helped for the 10 days that I was on it. But, once it stopped, the pain was back. I went back to the doctor and he sent me for a CT scan and they saw that my colon was infected and inflamed. I was sent back out to my transplant center and the lung doctors weren't sure what was happening but again I was feeling better and was going to go home. They sent the colorectal team in to see me before I was going to home and instead of telling me that I could go home, I was told that I needed surgery that night to have my colon removed. I went into surgery an hour later to have my colon removed and I woke up with a colostomy bag. Part of my small intestine was pulled through my abdomen, there was a bag placed over it, and that's how I went to the bathroom for 9 months. My surgery was on June 14, 2007, I had the surgery to attach the small intestine to the rectum on December 5, 2007, and then I had the final surgery to close the ileostomy and get rid of the colostomy bag on March 5, 2008. After 9 months, I was finally going to the bathroom normally again but now without my colon I go even more frequent than a CFer would.

Other than those complications, I had a fairly quick recovery. I had my double lung and liver on January 31, 2007 and was out of the hospital on February 12, and then home on March 2. My lung function has gone from 15% pre-tx to 94% post tx and I feel amazing. I never thought that a transplant could do this for me. I am going on 2 years this month and I am very happy with the results. Even with everything that happened post tx, I would definitely do it all over again. Like others above me have said, all transplants are different. I became friends with a guy on the Internet who has CF and had his double lung a month after I had mine. He didn't really have many complications and was feeling great and then went into chronic rejection right after his one year anniversary. He looked to me for help and I hooked him up with my team at the Cleveland Clinic, and after his first appointments there, he decided that he didn't want to go through it again. Sadly, he passed on November 8, 2008. He didn't even make it to 2 years. It still hurts to think about it....that I couldn't help him.

The way that I look at the transplant process is....go for it. If you don't take a chance on transplants, we all know where we would eventually end up anyway. Our crappy lungs can't hold on forever.

Transplantmommy · Jan 14, 2009

I know that my transplant story may seem like a fairy tale but I have told people about the bad parts of it too. There was a lot that I actually hated about the transplant...the pain, the chest tubes, the nightmares from the meds, the not eating for 5 days, and my vocal cords were damaged and I could hardly talk above a whisper for 2 months after the Tx. Seriously, people standing right next to me could hardly hear me talking and it irritated the hell out of me!

What else went wrong? I had acute rejection within the first month of the tx. I had to be on high doses of Solumedrol which gave me some weird feelings and also gave me horrible nightmares. It really was awful and I couldn't imagine the day that I would have to do that again. Because of having the double lung and liver transplant the doctors had to cut through my sternum and about 2 months after the transplant I had a sternum wire poking through my skin and had to go into surgery for that. It was fixed and now I have what looks like a permanent bruise on my tx scar. I had another episode of rejection right after the surgery that I had and I could not be treated for that one because it would have hindered me recovering from the surgery. The rejection went away on it's own and I didn't have to be treated (thank God). That's only the beginning of things that have happened to me though.

I had three more surgeries after that, and although they were not directly related to the transplant, having the transplant and the new medications kind of kick started my colon going bad. I had problems with my colon on and off for a couple of years and the doctors never caught it. It was after the transplant and having new medications that irritated it even more to where the doctors were able to see what the matter was. I had c-diff and the beginning of Ulcerative Colitis. I was put on Flagyl in May 2007 and that helped for the 10 days that I was on it. But, once it stopped, the pain was back. I went back to the doctor and he sent me for a CT scan and they saw that my colon was infected and inflamed. I was sent back out to my transplant center and the lung doctors weren't sure what was happening but again I was feeling better and was going to go home. They sent the colorectal team in to see me before I was going to home and instead of telling me that I could go home, I was told that I needed surgery that night to have my colon removed. I went into surgery an hour later to have my colon removed and I woke up with a colostomy bag. Part of my small intestine was pulled through my abdomen, there was a bag placed over it, and that's how I went to the bathroom for 9 months. My surgery was on June 14, 2007, I had the surgery to attach the small intestine to the rectum on December 5, 2007, and then I had the final surgery to close the ileostomy and get rid of the colostomy bag on March 5, 2008. After 9 months, I was finally going to the bathroom normally again but now without my colon I go even more frequent than a CFer would.

Other than those complications, I had a fairly quick recovery. I had my double lung and liver on January 31, 2007 and was out of the hospital on February 12, and then home on March 2. My lung function has gone from 15% pre-tx to 94% post tx and I feel amazing. I never thought that a transplant could do this for me. I am going on 2 years this month and I am very happy with the results. Even with everything that happened post tx, I would definitely do it all over again. Like others above me have said, all transplants are different. I became friends with a guy on the Internet who has CF and had his double lung a month after I had mine. He didn't really have many complications and was feeling great and then went into chronic rejection right after his one year anniversary. He looked to me for help and I hooked him up with my team at the Cleveland Clinic, and after his first appointments there, he decided that he didn't want to go through it again. Sadly, he passed on November 8, 2008. He didn't even make it to 2 years. It still hurts to think about it....that I couldn't help him.

The way that I look at the transplant process is....go for it. If you don't take a chance on transplants, we all know where we would eventually end up anyway. Our crappy lungs can't hold on forever.

Transplantmommy · Jan 14, 2009

I know that my transplant story may seem like a fairy tale but I have told people about the bad parts of it too. There was a lot that I actually hated about the transplant...the pain, the chest tubes, the nightmares from the meds, the not eating for 5 days, and my vocal cords were damaged and I could hardly talk above a whisper for 2 months after the Tx. Seriously, people standing right next to me could hardly hear me talking and it irritated the hell out of me!
 
 What else went wrong? I had acute rejection within the first month of the tx. I had to be on high doses of Solumedrol which gave me some weird feelings and also gave me horrible nightmares. It really was awful and I couldn't imagine the day that I would have to do that again. Because of having the double lung and liver transplant the doctors had to cut through my sternum and about 2 months after the transplant I had a sternum wire poking through my skin and had to go into surgery for that. It was fixed and now I have what looks like a permanent bruise on my tx scar. I had another episode of rejection right after the surgery that I had and I could not be treated for that one because it would have hindered me recovering from the surgery. The rejection went away on it's own and I didn't have to be treated (thank God). That's only the beginning of things that have happened to me though.
 
 I had three more surgeries after that, and although they were not directly related to the transplant, having the transplant and the new medications kind of kick started my colon going bad. I had problems with my colon on and off for a couple of years and the doctors never caught it. It was after the transplant and having new medications that irritated it even more to where the doctors were able to see what the matter was. I had c-diff and the beginning of Ulcerative Colitis. I was put on Flagyl in May 2007 and that helped for the 10 days that I was on it. But, once it stopped, the pain was back. I went back to the doctor and he sent me for a CT scan and they saw that my colon was infected and inflamed. I was sent back out to my transplant center and the lung doctors weren't sure what was happening but again I was feeling better and was going to go home. They sent the colorectal team in to see me before I was going to home and instead of telling me that I could go home, I was told that I needed surgery that night to have my colon removed. I went into surgery an hour later to have my colon removed and I woke up with a colostomy bag. Part of my small intestine was pulled through my abdomen, there was a bag placed over it, and that's how I went to the bathroom for 9 months. My surgery was on June 14, 2007, I had the surgery to attach the small intestine to the rectum on December 5, 2007, and then I had the final surgery to close the ileostomy and get rid of the colostomy bag on March 5, 2008. After 9 months, I was finally going to the bathroom normally again but now without my colon I go even more frequent than a CFer would.
 
 Other than those complications, I had a fairly quick recovery. I had my double lung and liver on January 31, 2007 and was out of the hospital on February 12, and then home on March 2. My lung function has gone from 15% pre-tx to 94% post tx and I feel amazing. I never thought that a transplant could do this for me. I am going on 2 years this month and I am very happy with the results. Even with everything that happened post tx, I would definitely do it all over again. Like others above me have said, all transplants are different. I became friends with a guy on the Internet who has CF and had his double lung a month after I had mine. He didn't really have many complications and was feeling great and then went into chronic rejection right after his one year anniversary. He looked to me for help and I hooked him up with my team at the Cleveland Clinic, and after his first appointments there, he decided that he didn't want to go through it again. Sadly, he passed on November 8, 2008. He didn't even make it to 2 years. It still hurts to think about it....that I couldn't help him.
 
 The way that I look at the transplant process is....go for it. If you don't take a chance on transplants, we all know where we would eventually end up anyway. Our crappy lungs can't hold on forever.

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