high risk donor

[falbie13]

Hey Annie,
I was told that I am not a typical person that gets put on the list. Up until July I was working between 24-36 hours a week as an ER nurse and living a fairly normal life. However, I have been on 3 weeks of IV abx every 6 weeks like clockwork for the last 2 years and my lungs have taken a beating, plus I have a huge pneumothorax that wont go away. Even though I maintain my o2 well, I only need o2 during bad exacerbations, my lungs are to scarred to work anymore. I would ask why your doctors dont think you are "sick enough" if you are on o2 constantly and have had 6 exacerbations this year. Have they atleast started the work up for a transplant?

 

[falbie13]

Hey Annie,
I was told that I am not a typical person that gets put on the list. Up until July I was working between 24-36 hours a week as an ER nurse and living a fairly normal life. However, I have been on 3 weeks of IV abx every 6 weeks like clockwork for the last 2 years and my lungs have taken a beating, plus I have a huge pneumothorax that wont go away. Even though I maintain my o2 well, I only need o2 during bad exacerbations, my lungs are to scarred to work anymore. I would ask why your doctors dont think you are "sick enough" if you are on o2 constantly and have had 6 exacerbations this year. Have they atleast started the work up for a transplant?

 

[falbie13]

Hey Annie,
I was told that I am not a typical person that gets put on the list. Up until July I was working between 24-36 hours a week as an ER nurse and living a fairly normal life. However, I have been on 3 weeks of IV abx every 6 weeks like clockwork for the last 2 years and my lungs have taken a beating, plus I have a huge pneumothorax that wont go away. Even though I maintain my o2 well, I only need o2 during bad exacerbations, my lungs are to scarred to work anymore. I would ask why your doctors dont think you are "sick enough" if you are on o2 constantly and have had 6 exacerbations this year. Have they atleast started the work up for a transplant?

 

[falbie13]

Hey Annie,
I was told that I am not a typical person that gets put on the list. Up until July I was working between 24-36 hours a week as an ER nurse and living a fairly normal life. However, I have been on 3 weeks of IV abx every 6 weeks like clockwork for the last 2 years and my lungs have taken a beating, plus I have a huge pneumothorax that wont go away. Even though I maintain my o2 well, I only need o2 during bad exacerbations, my lungs are to scarred to work anymore. I would ask why your doctors dont think you are "sick enough" if you are on o2 constantly and have had 6 exacerbations this year. Have they atleast started the work up for a transplant?

 

[falbie13]

Hey Annie,
<br />I was told that I am not a typical person that gets put on the list. Up until July I was working between 24-36 hours a week as an ER nurse and living a fairly normal life. However, I have been on 3 weeks of IV abx every 6 weeks like clockwork for the last 2 years and my lungs have taken a beating, plus I have a huge pneumothorax that wont go away. Even though I maintain my o2 well, I only need o2 during bad exacerbations, my lungs are to scarred to work anymore. I would ask why your doctors dont think you are "sick enough" if you are on o2 constantly and have had 6 exacerbations this year. Have they atleast started the work up for a transplant?

 

[arche4life]

Hey Fallon,

Mine is pretty much the same story. Up until a year ago I was working 20 hours a week and going to school full time for my archaeology degree. I had to go into the hospital for 3 months straight after which I just kept getting sick. Thats when my doctos brought up the transplant. I just finished my transplant work up about 2 weeks ago and sent my file over to UCSF Friday. I'm am supposed to get a call any time from the transplant coordinator to schedule an appointment to meet with the team to see where I fall on the list, but from what I heard from the transplant coordinator at Kaiser, she says I am doing everything prematurlly. One of the reasons she said this was cause I am still "able" to go to school. This is something I would definitely question, just based on the fact that it is my brain pushing my body through my classes (I'm sure you have noticed stubborness is a symptom of CF) So what happens now for you?? More of the waiting game??? Oh, and what is a pneumothorax?? I've heard of it, just not sure what it is?? Hope you have a good rest of the day and this post finds you well. Talk to you soon,
-Annie <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[arche4life]

Hey Fallon,

Mine is pretty much the same story. Up until a year ago I was working 20 hours a week and going to school full time for my archaeology degree. I had to go into the hospital for 3 months straight after which I just kept getting sick. Thats when my doctos brought up the transplant. I just finished my transplant work up about 2 weeks ago and sent my file over to UCSF Friday. I'm am supposed to get a call any time from the transplant coordinator to schedule an appointment to meet with the team to see where I fall on the list, but from what I heard from the transplant coordinator at Kaiser, she says I am doing everything prematurlly. One of the reasons she said this was cause I am still "able" to go to school. This is something I would definitely question, just based on the fact that it is my brain pushing my body through my classes (I'm sure you have noticed stubborness is a symptom of CF) So what happens now for you?? More of the waiting game??? Oh, and what is a pneumothorax?? I've heard of it, just not sure what it is?? Hope you have a good rest of the day and this post finds you well. Talk to you soon,
-Annie <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[arche4life]

Hey Fallon,

Mine is pretty much the same story. Up until a year ago I was working 20 hours a week and going to school full time for my archaeology degree. I had to go into the hospital for 3 months straight after which I just kept getting sick. Thats when my doctos brought up the transplant. I just finished my transplant work up about 2 weeks ago and sent my file over to UCSF Friday. I'm am supposed to get a call any time from the transplant coordinator to schedule an appointment to meet with the team to see where I fall on the list, but from what I heard from the transplant coordinator at Kaiser, she says I am doing everything prematurlly. One of the reasons she said this was cause I am still "able" to go to school. This is something I would definitely question, just based on the fact that it is my brain pushing my body through my classes (I'm sure you have noticed stubborness is a symptom of CF) So what happens now for you?? More of the waiting game??? Oh, and what is a pneumothorax?? I've heard of it, just not sure what it is?? Hope you have a good rest of the day and this post finds you well. Talk to you soon,
-Annie <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[arche4life]

Hey Fallon,

Mine is pretty much the same story. Up until a year ago I was working 20 hours a week and going to school full time for my archaeology degree. I had to go into the hospital for 3 months straight after which I just kept getting sick. Thats when my doctos brought up the transplant. I just finished my transplant work up about 2 weeks ago and sent my file over to UCSF Friday. I'm am supposed to get a call any time from the transplant coordinator to schedule an appointment to meet with the team to see where I fall on the list, but from what I heard from the transplant coordinator at Kaiser, she says I am doing everything prematurlly. One of the reasons she said this was cause I am still "able" to go to school. This is something I would definitely question, just based on the fact that it is my brain pushing my body through my classes (I'm sure you have noticed stubborness is a symptom of CF) So what happens now for you?? More of the waiting game??? Oh, and what is a pneumothorax?? I've heard of it, just not sure what it is?? Hope you have a good rest of the day and this post finds you well. Talk to you soon,
-Annie <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[arche4life]

Hey Fallon,
<br />
<br />Mine is pretty much the same story. Up until a year ago I was working 20 hours a week and going to school full time for my archaeology degree. I had to go into the hospital for 3 months straight after which I just kept getting sick. Thats when my doctos brought up the transplant. I just finished my transplant work up about 2 weeks ago and sent my file over to UCSF Friday. I'm am supposed to get a call any time from the transplant coordinator to schedule an appointment to meet with the team to see where I fall on the list, but from what I heard from the transplant coordinator at Kaiser, she says I am doing everything prematurlly. One of the reasons she said this was cause I am still "able" to go to school. This is something I would definitely question, just based on the fact that it is my brain pushing my body through my classes (I'm sure you have noticed stubborness is a symptom of CF) So what happens now for you?? More of the waiting game??? Oh, and what is a pneumothorax?? I've heard of it, just not sure what it is?? Hope you have a good rest of the day and this post finds you well. Talk to you soon,
<br />-Annie <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[CountryGirl]

Annie,

Hey I went to Stanford for my transplant and my lung function was about 25% when I got the call for my lungs AND I was only on O2 at night. I think this lady at Kaiser is being ridiculous, do not listen to her. If your lung function is getting in the low 30s and your on O2 pretty much 24/7 you definitely need to be thinking about transplant. Leave up to the transplant team to tell you you are not ready and even then they could be wrong. Mine was at first. Please dont wait, you dont want to have something go terribly wrong and it be too late to get new lungs.

 

[CountryGirl]

Annie,

Hey I went to Stanford for my transplant and my lung function was about 25% when I got the call for my lungs AND I was only on O2 at night. I think this lady at Kaiser is being ridiculous, do not listen to her. If your lung function is getting in the low 30s and your on O2 pretty much 24/7 you definitely need to be thinking about transplant. Leave up to the transplant team to tell you you are not ready and even then they could be wrong. Mine was at first. Please dont wait, you dont want to have something go terribly wrong and it be too late to get new lungs.

 

[CountryGirl]

Annie,

Hey I went to Stanford for my transplant and my lung function was about 25% when I got the call for my lungs AND I was only on O2 at night. I think this lady at Kaiser is being ridiculous, do not listen to her. If your lung function is getting in the low 30s and your on O2 pretty much 24/7 you definitely need to be thinking about transplant. Leave up to the transplant team to tell you you are not ready and even then they could be wrong. Mine was at first. Please dont wait, you dont want to have something go terribly wrong and it be too late to get new lungs.

 

[CountryGirl]

Annie,

Hey I went to Stanford for my transplant and my lung function was about 25% when I got the call for my lungs AND I was only on O2 at night. I think this lady at Kaiser is being ridiculous, do not listen to her. If your lung function is getting in the low 30s and your on O2 pretty much 24/7 you definitely need to be thinking about transplant. Leave up to the transplant team to tell you you are not ready and even then they could be wrong. Mine was at first. Please dont wait, you dont want to have something go terribly wrong and it be too late to get new lungs.

 

[CountryGirl]

Annie,
<br />
<br />Hey I went to Stanford for my transplant and my lung function was about 25% when I got the call for my lungs AND I was only on O2 at night. I think this lady at Kaiser is being ridiculous, do not listen to her. If your lung function is getting in the low 30s and your on O2 pretty much 24/7 you definitely need to be thinking about transplant. Leave up to the transplant team to tell you you are not ready and even then they could be wrong. Mine was at first. Please dont wait, you dont want to have something go terribly wrong and it be too late to get new lungs.

 

[arche4life]

Hey Anna,

How are you doing now post transplant? How are you feeling? How are things different? Have you had any setbacks?

 

[arche4life]

Hey Anna,

How are you doing now post transplant? How are you feeling? How are things different? Have you had any setbacks?

 

[arche4life]

Hey Anna,

How are you doing now post transplant? How are you feeling? How are things different? Have you had any setbacks?

 

[arche4life]

Hey Anna,

How are you doing now post transplant? How are you feeling? How are things different? Have you had any setbacks?

 

[arche4life]

Hey Anna,
<br />
<br />How are you doing now post transplant? How are you feeling? How are things different? Have you had any setbacks?