pre-trans quality of life

[summer732]

Don't wait too long. There is a very fine line between being sick enough to need a transplant and too sick to get it. Remember, you are listed by your LAS. So you can go through the evaluation and be put on the list according to your score. Just because you are listed doesn't mean you are going in right away. The last thing you want though is to be on your death bed when you are called (on a vent, no energy). The surgery and recovery is draining and is a full time job. You need to be a little bit "healthy" to get through that with a fight chance at a good survival.

JT my life is so completely different now. You are right about me going from one extreme to the other. Just keep picturing your life after the transplant and all of those things that you want to do but can't. It will help you get through it all.

 

[summer732]

Don't wait too long. There is a very fine line between being sick enough to need a transplant and too sick to get it. Remember, you are listed by your LAS. So you can go through the evaluation and be put on the list according to your score. Just because you are listed doesn't mean you are going in right away. The last thing you want though is to be on your death bed when you are called (on a vent, no energy). The surgery and recovery is draining and is a full time job. You need to be a little bit "healthy" to get through that with a fight chance at a good survival.
<br />
<br />JT my life is so completely different now. You are right about me going from one extreme to the other. Just keep picturing your life after the transplant and all of those things that you want to do but can't. It will help you get through it all.

 

[Smile769]

I'm new to this site but I have come on here recently and have been reading a lot of posts about transplant and its all been very helpful. Ive been seeing a transplant team since January 2011 and have been evaluated now I guess its just a waiting game.

This past summer I was on IV meds and now about a month and half later I dont feel so well. I didnt have a cold or anything which usually sends me into a lung infection. Every morning I wake up and feel achy and have a headache, pretty short or breath. Im on oxygen when I sleep. Has anyone experienced any of these problems?? They say I probably have an infection because my FEV dropped also and Im on oral antibiotics.

At my last CF doctor appointment she mentioned I might want to consider being listed soon. I thought it was strange because I thought you had to be oxygen dependent and no one has suggested that to me thus far. Was anyone on here in a situation similar to this?

------------------------------
Shannon
24/f/cf

 

[Smile769]

I'm new to this site but I have come on here recently and have been reading a lot of posts about transplant and its all been very helpful. Ive been seeing a transplant team since January 2011 and have been evaluated now I guess its just a waiting game.

This past summer I was on IV meds and now about a month and half later I dont feel so well. I didnt have a cold or anything which usually sends me into a lung infection. Every morning I wake up and feel achy and have a headache, pretty short or breath. Im on oxygen when I sleep. Has anyone experienced any of these problems?? They say I probably have an infection because my FEV dropped also and Im on oral antibiotics.

At my last CF doctor appointment she mentioned I might want to consider being listed soon. I thought it was strange because I thought you had to be oxygen dependent and no one has suggested that to me thus far. Was anyone on here in a situation similar to this?

------------------------------
Shannon
24/f/cf

 

[Smile769]

I'm new to this site but I have come on here recently and have been reading a lot of posts about transplant and its all been very helpful. Ive been seeing a transplant team since January 2011 and have been evaluated now I guess its just a waiting game.
<br />
<br />This past summer I was on IV meds and now about a month and half later I dont feel so well. I didnt have a cold or anything which usually sends me into a lung infection. Every morning I wake up and feel achy and have a headache, pretty short or breath. Im on oxygen when I sleep. Has anyone experienced any of these problems?? They say I probably have an infection because my FEV dropped also and Im on oral antibiotics.
<br />
<br />At my last CF doctor appointment she mentioned I might want to consider being listed soon. I thought it was strange because I thought you had to be oxygen dependent and no one has suggested that to me thus far. Was anyone on here in a situation similar to this?
<br />
<br />------------------------------
<br />Shannon
<br />24/f/cf
<br />

 

[PinkPigg]

Hey Shannon,

Sounds like we are in a similar boat. I'm on O2 at night also but not during the day. Like you my exacerbations are getting more frequent. Due to the increased frequency & severity of infection, I was evaluated last August for transplant. They also wanted me to be evaluated because my bugs are becoming more resistant to antibiotics.

The results are that I am close but still not quite there. As part of the process I found out that I have rectal cancer. It is cured now but I won't be eligible to be listed until I'm cancer free for two years (some centers require five years). I'm so glad that my work up happened when it did. It's a great way to find out if there are any other health issues to deal with before you get really really sick. So I say look into getting worked up.

Peace,
Steph

 

[PinkPigg]

Hey Shannon,

Sounds like we are in a similar boat. I'm on O2 at night also but not during the day. Like you my exacerbations are getting more frequent. Due to the increased frequency & severity of infection, I was evaluated last August for transplant. They also wanted me to be evaluated because my bugs are becoming more resistant to antibiotics.

The results are that I am close but still not quite there. As part of the process I found out that I have rectal cancer. It is cured now but I won't be eligible to be listed until I'm cancer free for two years (some centers require five years). I'm so glad that my work up happened when it did. It's a great way to find out if there are any other health issues to deal with before you get really really sick. So I say look into getting worked up.

Peace,
Steph

 

[PinkPigg]

Hey Shannon,
<br />
<br />Sounds like we are in a similar boat. I'm on O2 at night also but not during the day. Like you my exacerbations are getting more frequent. Due to the increased frequency & severity of infection, I was evaluated last August for transplant. They also wanted me to be evaluated because my bugs are becoming more resistant to antibiotics.
<br />
<br />The results are that I am close but still not quite there. As part of the process I found out that I have rectal cancer. It is cured now but I won't be eligible to be listed until I'm cancer free for two years (some centers require five years). I'm so glad that my work up happened when it did. It's a great way to find out if there are any other health issues to deal with before you get really really sick. So I say look into getting worked up.
<br />
<br />Peace,
<br />Steph

 

[chuckstyl5]

I was listed for 3 months with O2 24/7 and until the day i got the call i was at work everyday from 7:30-4:30 .. I got home sat down for my treatments and got the call

 

[chuckstyl5]

I was listed for 3 months with O2 24/7 and until the day i got the call i was at work everyday from 7:30-4:30 .. I got home sat down for my treatments and got the call

 

[chuckstyl5]

I was listed for 3 months with O2 24/7 and until the day i got the call i was at work everyday from 7:30-4:30 .. I got home sat down for my treatments and got the call

 

[dream2live]

<P>I just had my lastest PFT's done and they are below 30%, which should qualify me to start on thhe process of being on the transplant list.  I really don't knnow how I feel about this.  The reason I say this is because:  all I'm doing is trading one problem or another, still have to take a bunch of pills, and I would still have to be careful of who I am around.  </P>
<P> </P>
<P>Yes, i is a very difficult and life alternating decision to mae. </P>

 

[dream2live]

<P>I just had my lastest PFT's done and they are below 30%, which should qualify me to start on thhe process of being on the transplant list. I really don't knnow how I feel about this. The reason I say this is because: all I'm doing is trading one problem or another, still have to take a bunch of pills, and I would still have to be careful of who I am around. </P>
<P></P>
<P>Yes, i is a very difficult and life alternating decision to mae.</P>

 

[dream2live]

<P>I just had my lastest PFT's done and they are below 30%, which should qualify me to start on thhe process of being on the transplant list. I really don't knnow how I feel about this. The reason I say this is because: all I'm doing is trading one problem or another, still have to take a bunch of pills, and I would still have to be careful of who I am around. </P>
<P></P>
<P>Yes, i is a very difficult and life alternating decision to mae.<BR></P>

 

[dream2live]

<P>I just had my lastest PFT's done and they are below 30%, which should qualify me to start on thhe process of being on the transplant list.  I really don't knnow how I feel about this.  The reason I say this is because:  all I'm doing is trading one problem or another, still have to take a bunch of pills, and I would still have to be careful of who I am around.  </P>
<P> </P>
<P>Yes, i is a very difficult and life alternating decision to mae. </P>

 

[dream2live]

<P>I just had my lastest PFT's done and they are below 30%, which should qualify me to start on thhe process of being on the transplant list. I really don't knnow how I feel about this. The reason I say this is because: all I'm doing is trading one problem or another, still have to take a bunch of pills, and I would still have to be careful of who I am around. </P>
<P></P>
<P>Yes, i is a very difficult and life alternating decision to mae.</P>

 

[dream2live]

<P>I just had my lastest PFT's done and they are below 30%, which should qualify me to start on thhe process of being on the transplant list. I really don't knnow how I feel about this. The reason I say this is because: all I'm doing is trading one problem or another, still have to take a bunch of pills, and I would still have to be careful of who I am around. </P>
<P></P>
<P>Yes, i is a very difficult and life alternating decision to mae.<BR></P>

 

[kaphi72]

Hi Shannon, maybe you could ask your doctor to check out your co2 level. I've had problems with that in the past, symptoms were similar to what you described.

 

[kaphi72]

Hi Shannon, maybe you could ask your doctor to check out your co2 level. I've had problems with that in the past, symptoms were similar to what you described.

 

[kaphi72]

Hi Shannon, maybe you could ask your doctor to check out your co2 level. I've had problems with that in the past, symptoms were similar to what you described.