I'm in that grey area of needing to be listed: Hospitalizations 3-5x/year, FEV1 25-30%, very limited in activities some weeks/months, do okay others. Oxygen with exercise and sleep. I continually adapt and get used to most of the limitations but I sometimes feel I'm in denial about how I've progressed and wonder if I'll ever feel ready as "it could always be worse." Of course I've had 1,000 conversations with my CF and transplant docs about this and they usually come back to it's a personal choice of what I can handle, given my numbers alone <i>could</i> qualify me...<div><br></div><div>Wondering what your daily life was like when you got listed. Specifically what you could and couldn't handle (grocery shopping, showers, exercise, etc.). Was it hard to muster up the energy to eat high calories? How much did you nap? Were your symptoms mostly lung related (more mucous, cough up blood, shortness of breath, etc.) or were they overall body symptoms (body aches, fatigue, exhaustion). What you felt like at on a good week and on bad weeks...</div><div><br></div><div>How did all that change over the months <i>while</i> you were listed?</div><div><br></div><div>They keep telling me it's different for everyone so I'm trying to get a sense of the spectrum outside my doctors' limited perspective.</div><div><br></div><div>Thanks so much,</div><div>-Jason</div><div><br></div><div>Edit: I go, and have gone, to quarterly pre-transplant appointments since 2002, when I dropped down to an FEV1 of 25% for the first time. So the questions for me are no longer if I want a transplant or should I get evaluated, rather when to get on the active list.</div>
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
pre-trans quality of life
- Thread starter JT
- Start date
I'm in that grey area of needing to be listed: Hospitalizations 3-5x/year, FEV1 25-30%, very limited in activities some weeks/months, do okay others. Oxygen with exercise and sleep. I continually adapt and get used to most of the limitations but I sometimes feel I'm in denial about how I've progressed and wonder if I'll ever feel ready as "it could always be worse." Of course I've had 1,000 conversations with my CF and transplant docs about this and they usually come back to it's a personal choice of what I can handle, given my numbers alone <i>could</i> qualify me...<br>Wondering what your daily life was like when you got listed. Specifically what you could and couldn't handle (grocery shopping, showers, exercise, etc.). Was it hard to muster up the energy to eat high calories? How much did you nap? Were your symptoms mostly lung related (more mucous, cough up blood, shortness of breath, etc.) or were they overall body symptoms (body aches, fatigue, exhaustion). What you felt like at on a good week and on bad weeks...<br>How did all that change over the months <i>while</i> you were listed?<br>They keep telling me it's different for everyone so I'm trying to get a sense of the spectrum outside my doctors' limited perspective.<br>Thanks so much,-Jason<br>Edit: I go, and have gone, to quarterly pre-transplant appointments since 2002, when I dropped down to an FEV1 of 25% for the first time. So the questions for me are no longer if I want a transplant or should I get evaluated, rather when to get on the active list.
I'm in that grey area of needing to be listed: Hospitalizations 3-5x/year, FEV1 25-30%, very limited in activities some weeks/months, do okay others. Oxygen with exercise and sleep. I continually adapt and get used to most of the limitations but I sometimes feel I'm in denial about how I've progressed and wonder if I'll ever feel ready as "it could always be worse." Of course I've had 1,000 conversations with my CF and transplant docs about this and they usually come back to it's a personal choice of what I can handle, given my numbers alone <i>could</i> qualify me...<br>Wondering what your daily life was like when you got listed. Specifically what you could and couldn't handle (grocery shopping, showers, exercise, etc.). Was it hard to muster up the energy to eat high calories? How much did you nap? Were your symptoms mostly lung related (more mucous, cough up blood, shortness of breath, etc.) or were they overall body symptoms (body aches, fatigue, exhaustion). What you felt like at on a good week and on bad weeks...<br>How did all that change over the months <i>while</i> you were listed?<br>They keep telling me it's different for everyone so I'm trying to get a sense of the spectrum outside my doctors' limited perspective.<br>Thanks so much,-Jason<br>Edit: I go, and have gone, to quarterly pre-transplant appointments since 2002, when I dropped down to an FEV1 of 25% for the first time. So the questions for me are no longer if I want a transplant or should I get evaluated, rather when to get on the active list.
Hi Jason,
I have not been transplanted yet, but I've been listed since January 2011. I basically decided it was time because of a few things: I had to stop working in order to stop myself from spiraling down into illness that I couldn't come out of. I stopped eating because I didn't have time to devote to meals due to work (it takes me an hour to eat b/c I'm so short of breath/fatigued when eating - only my feeding tube saved me), I was not able to get up early anymore - I was just SO TIRED that the 8 am start time (even tho I worked from home) was killing me. I couldn't sit up in a chair for more than 1 hour and I would totally lose focus. After work was over, I was good for nothing! I couldn't make dinner, take the dogs out, do anything except lie down. I could not handle grocery shopping even, I was just so weak. I was definitely on oxygen full time for a couple months by this time, and I still had trouble showering and dressing in a timely fashion. My symptoms were not specifically lung related - it was more fatigue and just terrible quality of life. I was hospitalized before deciding on transplant than I was after making the decision. I decided it was time to be listed because I wasn't enjoying anything out of life anymore because I couldn't participate in anything!!! I hated leaving the house!
After I stopped working, I was able to commit to taking care of myself as my 'full time job'. I now sleep till 11 am daily, eat my 3 meals a day, do all my therapies and MOST importantly, I go to pulmonary rehab 3 x's a week. I can't say enough how much rehab changed my quality of life. Even though I still had to be on 4-5 liters of oxygen full time, after about 2 months of going to rehab, I had so much more energy and was able to get back to doing SOME normal things, like grocery shopping, going out to eat, taking the dogs out, cooking dinner, seeing friends, being a better wife... I gained some weight, my PFT's went up 2% (that's a lot when it's 25% haha) and I just felt more alive. So, even though now I am less fatigued, there is no way that I would go back to work now, because I need that time to remain stable before transplant....they want you to be as strong as you can be. I am still listed for transplant, because even though I can kinda get around and do things, my quality of life just still isn't where I want it to be so now I'm just playing the waiting game for that next big infection to send me down low enough that my LAS score will put me next in line....
You are right, it's a big decision and it's unique for everyone. I remember 10 years ago when I was healthy I would say I would never consider a transplant.....but here I am =). I think when it is time, you will know. For me, something inside me changed where I wasn't living anymore.....but I wanted to live because I have so much in my future to look forward to. I don't think about the transplant day to day...I go one day at a time and enjoy each moment. I hope this helps. I look forward to reading others' perspectives.
I have not been transplanted yet, but I've been listed since January 2011. I basically decided it was time because of a few things: I had to stop working in order to stop myself from spiraling down into illness that I couldn't come out of. I stopped eating because I didn't have time to devote to meals due to work (it takes me an hour to eat b/c I'm so short of breath/fatigued when eating - only my feeding tube saved me), I was not able to get up early anymore - I was just SO TIRED that the 8 am start time (even tho I worked from home) was killing me. I couldn't sit up in a chair for more than 1 hour and I would totally lose focus. After work was over, I was good for nothing! I couldn't make dinner, take the dogs out, do anything except lie down. I could not handle grocery shopping even, I was just so weak. I was definitely on oxygen full time for a couple months by this time, and I still had trouble showering and dressing in a timely fashion. My symptoms were not specifically lung related - it was more fatigue and just terrible quality of life. I was hospitalized before deciding on transplant than I was after making the decision. I decided it was time to be listed because I wasn't enjoying anything out of life anymore because I couldn't participate in anything!!! I hated leaving the house!
After I stopped working, I was able to commit to taking care of myself as my 'full time job'. I now sleep till 11 am daily, eat my 3 meals a day, do all my therapies and MOST importantly, I go to pulmonary rehab 3 x's a week. I can't say enough how much rehab changed my quality of life. Even though I still had to be on 4-5 liters of oxygen full time, after about 2 months of going to rehab, I had so much more energy and was able to get back to doing SOME normal things, like grocery shopping, going out to eat, taking the dogs out, cooking dinner, seeing friends, being a better wife... I gained some weight, my PFT's went up 2% (that's a lot when it's 25% haha) and I just felt more alive. So, even though now I am less fatigued, there is no way that I would go back to work now, because I need that time to remain stable before transplant....they want you to be as strong as you can be. I am still listed for transplant, because even though I can kinda get around and do things, my quality of life just still isn't where I want it to be so now I'm just playing the waiting game for that next big infection to send me down low enough that my LAS score will put me next in line....
You are right, it's a big decision and it's unique for everyone. I remember 10 years ago when I was healthy I would say I would never consider a transplant.....but here I am =). I think when it is time, you will know. For me, something inside me changed where I wasn't living anymore.....but I wanted to live because I have so much in my future to look forward to. I don't think about the transplant day to day...I go one day at a time and enjoy each moment. I hope this helps. I look forward to reading others' perspectives.
Hi Jason,
I have not been transplanted yet, but I've been listed since January 2011. I basically decided it was time because of a few things: I had to stop working in order to stop myself from spiraling down into illness that I couldn't come out of. I stopped eating because I didn't have time to devote to meals due to work (it takes me an hour to eat b/c I'm so short of breath/fatigued when eating - only my feeding tube saved me), I was not able to get up early anymore - I was just SO TIRED that the 8 am start time (even tho I worked from home) was killing me. I couldn't sit up in a chair for more than 1 hour and I would totally lose focus. After work was over, I was good for nothing! I couldn't make dinner, take the dogs out, do anything except lie down. I could not handle grocery shopping even, I was just so weak. I was definitely on oxygen full time for a couple months by this time, and I still had trouble showering and dressing in a timely fashion. My symptoms were not specifically lung related - it was more fatigue and just terrible quality of life. I was hospitalized before deciding on transplant than I was after making the decision. I decided it was time to be listed because I wasn't enjoying anything out of life anymore because I couldn't participate in anything!!! I hated leaving the house!
After I stopped working, I was able to commit to taking care of myself as my 'full time job'. I now sleep till 11 am daily, eat my 3 meals a day, do all my therapies and MOST importantly, I go to pulmonary rehab 3 x's a week. I can't say enough how much rehab changed my quality of life. Even though I still had to be on 4-5 liters of oxygen full time, after about 2 months of going to rehab, I had so much more energy and was able to get back to doing SOME normal things, like grocery shopping, going out to eat, taking the dogs out, cooking dinner, seeing friends, being a better wife... I gained some weight, my PFT's went up 2% (that's a lot when it's 25% haha) and I just felt more alive. So, even though now I am less fatigued, there is no way that I would go back to work now, because I need that time to remain stable before transplant....they want you to be as strong as you can be. I am still listed for transplant, because even though I can kinda get around and do things, my quality of life just still isn't where I want it to be so now I'm just playing the waiting game for that next big infection to send me down low enough that my LAS score will put me next in line....
You are right, it's a big decision and it's unique for everyone. I remember 10 years ago when I was healthy I would say I would never consider a transplant.....but here I am =). I think when it is time, you will know. For me, something inside me changed where I wasn't living anymore.....but I wanted to live because I have so much in my future to look forward to. I don't think about the transplant day to day...I go one day at a time and enjoy each moment. I hope this helps. I look forward to reading others' perspectives.
I have not been transplanted yet, but I've been listed since January 2011. I basically decided it was time because of a few things: I had to stop working in order to stop myself from spiraling down into illness that I couldn't come out of. I stopped eating because I didn't have time to devote to meals due to work (it takes me an hour to eat b/c I'm so short of breath/fatigued when eating - only my feeding tube saved me), I was not able to get up early anymore - I was just SO TIRED that the 8 am start time (even tho I worked from home) was killing me. I couldn't sit up in a chair for more than 1 hour and I would totally lose focus. After work was over, I was good for nothing! I couldn't make dinner, take the dogs out, do anything except lie down. I could not handle grocery shopping even, I was just so weak. I was definitely on oxygen full time for a couple months by this time, and I still had trouble showering and dressing in a timely fashion. My symptoms were not specifically lung related - it was more fatigue and just terrible quality of life. I was hospitalized before deciding on transplant than I was after making the decision. I decided it was time to be listed because I wasn't enjoying anything out of life anymore because I couldn't participate in anything!!! I hated leaving the house!
After I stopped working, I was able to commit to taking care of myself as my 'full time job'. I now sleep till 11 am daily, eat my 3 meals a day, do all my therapies and MOST importantly, I go to pulmonary rehab 3 x's a week. I can't say enough how much rehab changed my quality of life. Even though I still had to be on 4-5 liters of oxygen full time, after about 2 months of going to rehab, I had so much more energy and was able to get back to doing SOME normal things, like grocery shopping, going out to eat, taking the dogs out, cooking dinner, seeing friends, being a better wife... I gained some weight, my PFT's went up 2% (that's a lot when it's 25% haha) and I just felt more alive. So, even though now I am less fatigued, there is no way that I would go back to work now, because I need that time to remain stable before transplant....they want you to be as strong as you can be. I am still listed for transplant, because even though I can kinda get around and do things, my quality of life just still isn't where I want it to be so now I'm just playing the waiting game for that next big infection to send me down low enough that my LAS score will put me next in line....
You are right, it's a big decision and it's unique for everyone. I remember 10 years ago when I was healthy I would say I would never consider a transplant.....but here I am =). I think when it is time, you will know. For me, something inside me changed where I wasn't living anymore.....but I wanted to live because I have so much in my future to look forward to. I don't think about the transplant day to day...I go one day at a time and enjoy each moment. I hope this helps. I look forward to reading others' perspectives.
Hi Jason,
<br />I have not been transplanted yet, but I've been listed since January 2011. I basically decided it was time because of a few things: I had to stop working in order to stop myself from spiraling down into illness that I couldn't come out of. I stopped eating because I didn't have time to devote to meals due to work (it takes me an hour to eat b/c I'm so short of breath/fatigued when eating - only my feeding tube saved me), I was not able to get up early anymore - I was just SO TIRED that the 8 am start time (even tho I worked from home) was killing me. I couldn't sit up in a chair for more than 1 hour and I would totally lose focus. After work was over, I was good for nothing! I couldn't make dinner, take the dogs out, do anything except lie down. I could not handle grocery shopping even, I was just so weak. I was definitely on oxygen full time for a couple months by this time, and I still had trouble showering and dressing in a timely fashion. My symptoms were not specifically lung related - it was more fatigue and just terrible quality of life. I was hospitalized before deciding on transplant than I was after making the decision. I decided it was time to be listed because I wasn't enjoying anything out of life anymore because I couldn't participate in anything!!! I hated leaving the house!
<br />
<br />After I stopped working, I was able to commit to taking care of myself as my 'full time job'. I now sleep till 11 am daily, eat my 3 meals a day, do all my therapies and MOST importantly, I go to pulmonary rehab 3 x's a week. I can't say enough how much rehab changed my quality of life. Even though I still had to be on 4-5 liters of oxygen full time, after about 2 months of going to rehab, I had so much more energy and was able to get back to doing SOME normal things, like grocery shopping, going out to eat, taking the dogs out, cooking dinner, seeing friends, being a better wife... I gained some weight, my PFT's went up 2% (that's a lot when it's 25% haha) and I just felt more alive. So, even though now I am less fatigued, there is no way that I would go back to work now, because I need that time to remain stable before transplant....they want you to be as strong as you can be. I am still listed for transplant, because even though I can kinda get around and do things, my quality of life just still isn't where I want it to be so now I'm just playing the waiting game for that next big infection to send me down low enough that my LAS score will put me next in line....
<br />
<br />You are right, it's a big decision and it's unique for everyone. I remember 10 years ago when I was healthy I would say I would never consider a transplant.....but here I am =). I think when it is time, you will know. For me, something inside me changed where I wasn't living anymore.....but I wanted to live because I have so much in my future to look forward to. I don't think about the transplant day to day...I go one day at a time and enjoy each moment. I hope this helps. I look forward to reading others' perspectives.
<br />I have not been transplanted yet, but I've been listed since January 2011. I basically decided it was time because of a few things: I had to stop working in order to stop myself from spiraling down into illness that I couldn't come out of. I stopped eating because I didn't have time to devote to meals due to work (it takes me an hour to eat b/c I'm so short of breath/fatigued when eating - only my feeding tube saved me), I was not able to get up early anymore - I was just SO TIRED that the 8 am start time (even tho I worked from home) was killing me. I couldn't sit up in a chair for more than 1 hour and I would totally lose focus. After work was over, I was good for nothing! I couldn't make dinner, take the dogs out, do anything except lie down. I could not handle grocery shopping even, I was just so weak. I was definitely on oxygen full time for a couple months by this time, and I still had trouble showering and dressing in a timely fashion. My symptoms were not specifically lung related - it was more fatigue and just terrible quality of life. I was hospitalized before deciding on transplant than I was after making the decision. I decided it was time to be listed because I wasn't enjoying anything out of life anymore because I couldn't participate in anything!!! I hated leaving the house!
<br />
<br />After I stopped working, I was able to commit to taking care of myself as my 'full time job'. I now sleep till 11 am daily, eat my 3 meals a day, do all my therapies and MOST importantly, I go to pulmonary rehab 3 x's a week. I can't say enough how much rehab changed my quality of life. Even though I still had to be on 4-5 liters of oxygen full time, after about 2 months of going to rehab, I had so much more energy and was able to get back to doing SOME normal things, like grocery shopping, going out to eat, taking the dogs out, cooking dinner, seeing friends, being a better wife... I gained some weight, my PFT's went up 2% (that's a lot when it's 25% haha) and I just felt more alive. So, even though now I am less fatigued, there is no way that I would go back to work now, because I need that time to remain stable before transplant....they want you to be as strong as you can be. I am still listed for transplant, because even though I can kinda get around and do things, my quality of life just still isn't where I want it to be so now I'm just playing the waiting game for that next big infection to send me down low enough that my LAS score will put me next in line....
<br />
<br />You are right, it's a big decision and it's unique for everyone. I remember 10 years ago when I was healthy I would say I would never consider a transplant.....but here I am =). I think when it is time, you will know. For me, something inside me changed where I wasn't living anymore.....but I wanted to live because I have so much in my future to look forward to. I don't think about the transplant day to day...I go one day at a time and enjoy each moment. I hope this helps. I look forward to reading others' perspectives.
paintfreak939
New member
<P>Hi All, </P>
<P>I have been transplanted now for over a year. Before the transplant I could hardly breath, tieing my shoes was a challenge. I was on oxygen 24/7 My fev1 got to be less than 16% and most of the times I never wanted to move from the bed. medial tasks were now unable to be completed.</P>
<P>pre transplant - I had to go to the gym everyday. I worked out 5 days a week after a period of time during pre-tx I walked 5 to 6 miles a day. lifted weights road a bike and swam in pool that previously I would have drowned. </P>
<P> </P>
<P>after transplant I can now walk/run 5 miles a day still go to the gym everyday. without exception. I sometimes like now am on iv's for vaious infections pop up due to being imuno-supresed. however, My quality of life is much better. I still can not work nor will I probably every be able do to CF mainly but I can breath and sleept with out much interuption.</P>
<P> </P>
<P>paintfreak939</P>
<P>any question just follow up</P>
<P>I have been transplanted now for over a year. Before the transplant I could hardly breath, tieing my shoes was a challenge. I was on oxygen 24/7 My fev1 got to be less than 16% and most of the times I never wanted to move from the bed. medial tasks were now unable to be completed.</P>
<P>pre transplant - I had to go to the gym everyday. I worked out 5 days a week after a period of time during pre-tx I walked 5 to 6 miles a day. lifted weights road a bike and swam in pool that previously I would have drowned. </P>
<P> </P>
<P>after transplant I can now walk/run 5 miles a day still go to the gym everyday. without exception. I sometimes like now am on iv's for vaious infections pop up due to being imuno-supresed. however, My quality of life is much better. I still can not work nor will I probably every be able do to CF mainly but I can breath and sleept with out much interuption.</P>
<P> </P>
<P>paintfreak939</P>
<P>any question just follow up</P>
paintfreak939
New member
<P>Hi All, </P>
<P>I have been transplanted now for over a year. Before the transplant I could hardly breath, tieing my shoes was a challenge. I was on oxygen 24/7 My fev1 got to be less than 16% and most of the times I never wanted to move from the bed. medial tasks were now unable to be completed.</P>
<P>pre transplant - I had to go to the gym everyday. I worked out 5 days a week after a period of time during pre-tx I walked 5 to 6 miles a day.lifted weights road a bike and swam in pool that previously I would have drowned. </P>
<P></P>
<P>after transplant I can now walk/run 5 miles a day still go to the gym everyday. without exception. I sometimes like now am on iv's for vaious infections pop up due to being imuno-supresed. however, My quality of life is much better. I still can not work nor will I probably every be able do to CF mainly but I can breath and sleept with out much interuption.</P>
<P></P>
<P>paintfreak939</P>
<P>any question just follow up</P>
<P>I have been transplanted now for over a year. Before the transplant I could hardly breath, tieing my shoes was a challenge. I was on oxygen 24/7 My fev1 got to be less than 16% and most of the times I never wanted to move from the bed. medial tasks were now unable to be completed.</P>
<P>pre transplant - I had to go to the gym everyday. I worked out 5 days a week after a period of time during pre-tx I walked 5 to 6 miles a day.lifted weights road a bike and swam in pool that previously I would have drowned. </P>
<P></P>
<P>after transplant I can now walk/run 5 miles a day still go to the gym everyday. without exception. I sometimes like now am on iv's for vaious infections pop up due to being imuno-supresed. however, My quality of life is much better. I still can not work nor will I probably every be able do to CF mainly but I can breath and sleept with out much interuption.</P>
<P></P>
<P>paintfreak939</P>
<P>any question just follow up</P>
paintfreak939
New member
<P><BR>Hi All, </P>
<P>I have been transplanted now for over a year. Before the transplant I could hardly breath, tieing my shoes was a challenge. I was on oxygen 24/7 My fev1 got to be less than 16% and most of the times I never wanted to move from the bed. medial tasks were now unable to be completed.</P>
<P>pre transplant - I had to go to the gym everyday. I worked out 5 days a week after a period of time during pre-tx I walked 5 to 6 miles a day.lifted weights road a bike and swam in pool that previously I would have drowned. </P>
<P></P>
<P>after transplant I can now walk/run 5 miles a day still go to the gym everyday. without exception. I sometimes like now am on iv's for vaious infections pop up due to being imuno-supresed. however, My quality of life is much better. I still can not work nor will I probably every be able do to CF mainly but I can breath and sleept with out much interuption.</P>
<P></P>
<P>paintfreak939</P>
<P>any question just follow up</P>
<P>I have been transplanted now for over a year. Before the transplant I could hardly breath, tieing my shoes was a challenge. I was on oxygen 24/7 My fev1 got to be less than 16% and most of the times I never wanted to move from the bed. medial tasks were now unable to be completed.</P>
<P>pre transplant - I had to go to the gym everyday. I worked out 5 days a week after a period of time during pre-tx I walked 5 to 6 miles a day.lifted weights road a bike and swam in pool that previously I would have drowned. </P>
<P></P>
<P>after transplant I can now walk/run 5 miles a day still go to the gym everyday. without exception. I sometimes like now am on iv's for vaious infections pop up due to being imuno-supresed. however, My quality of life is much better. I still can not work nor will I probably every be able do to CF mainly but I can breath and sleept with out much interuption.</P>
<P></P>
<P>paintfreak939</P>
<P>any question just follow up</P>
Hi JT,
This is such an important time in your journey and such a difficult decision to make. While I was listed, my quality of life was pretty poor. Leading up to being listed for the transplant, I was holding my own. I finished two years of college with a pretty heavy work load. I struggled to walk around campus but it was nothing that I couldn't adjust to. After my sophomore year, things changed for me quite rapidly. I went into the hospital for what I thought was just a normal clean out. Turns out, my lungs were so full of mucous that I ended up spending three weeks in the hospital and the doctors were not sure that I was going to pull through. I was fighting 104 degree fevers (you feel like you are burning from the inside out) and was coughing so much that I was just physically exhausted. The doctors did a bronchoscopy and cleaned out my lungs and lo and behold, I started a very slow recovery. From that point on, I was on oxygen almost all of the time. I did go back to school, but I was also getting evaluated for the transplant at that point. I got listed and then again went back to a steady decline. It was difficult to impossible to walk up or down the stairs since my knees were so swollen from fluid back up in my body. I couldn't walk around campus anymore. My oxygen was on 24/7. I had no social life. Basically, I wasn't really living anymore.
When I was listed, it was how long you were on the list, not how sick you were. Since I knew time was running out, we moved to New Orleans which had a significantly shorter wait time and would give me the best chance for survival. I did not do all that much while we waited other than hang out with my friends/family who came to visit. I wasn't in school anymore and suriving all of a sudden became my full time job.
Now, here I am, seven whole years after my transplant. Life could not be better. I live and work in the best city in the world. And believe me, I work a ton of hours and I'm not even tired. I ran a half marathon. I go to the gym every day. I see my friends when I want to. Life is great these days. I've had my share of issues after my transplant (PTLD, Sinus Polyps needing surgeries, pneumonia) but these are all bumps in the road.
This is a personal decision, but there is a very full life wiating for you on the other side.
This is such an important time in your journey and such a difficult decision to make. While I was listed, my quality of life was pretty poor. Leading up to being listed for the transplant, I was holding my own. I finished two years of college with a pretty heavy work load. I struggled to walk around campus but it was nothing that I couldn't adjust to. After my sophomore year, things changed for me quite rapidly. I went into the hospital for what I thought was just a normal clean out. Turns out, my lungs were so full of mucous that I ended up spending three weeks in the hospital and the doctors were not sure that I was going to pull through. I was fighting 104 degree fevers (you feel like you are burning from the inside out) and was coughing so much that I was just physically exhausted. The doctors did a bronchoscopy and cleaned out my lungs and lo and behold, I started a very slow recovery. From that point on, I was on oxygen almost all of the time. I did go back to school, but I was also getting evaluated for the transplant at that point. I got listed and then again went back to a steady decline. It was difficult to impossible to walk up or down the stairs since my knees were so swollen from fluid back up in my body. I couldn't walk around campus anymore. My oxygen was on 24/7. I had no social life. Basically, I wasn't really living anymore.
When I was listed, it was how long you were on the list, not how sick you were. Since I knew time was running out, we moved to New Orleans which had a significantly shorter wait time and would give me the best chance for survival. I did not do all that much while we waited other than hang out with my friends/family who came to visit. I wasn't in school anymore and suriving all of a sudden became my full time job.
Now, here I am, seven whole years after my transplant. Life could not be better. I live and work in the best city in the world. And believe me, I work a ton of hours and I'm not even tired. I ran a half marathon. I go to the gym every day. I see my friends when I want to. Life is great these days. I've had my share of issues after my transplant (PTLD, Sinus Polyps needing surgeries, pneumonia) but these are all bumps in the road.
This is a personal decision, but there is a very full life wiating for you on the other side.
Hi JT,
This is such an important time in your journey and such a difficult decision to make. While I was listed, my quality of life was pretty poor. Leading up to being listed for the transplant, I was holding my own. I finished two years of college with a pretty heavy work load. I struggled to walk around campus but it was nothing that I couldn't adjust to. After my sophomore year, things changed for me quite rapidly. I went into the hospital for what I thought was just a normal clean out. Turns out, my lungs were so full of mucous that I ended up spending three weeks in the hospital and the doctors were not sure that I was going to pull through. I was fighting 104 degree fevers (you feel like you are burning from the inside out) and was coughing so much that I was just physically exhausted. The doctors did a bronchoscopy and cleaned out my lungs and lo and behold, I started a very slow recovery. From that point on, I was on oxygen almost all of the time. I did go back to school, but I was also getting evaluated for the transplant at that point. I got listed and then again went back to a steady decline. It was difficult to impossible to walk up or down the stairs since my knees were so swollen from fluid back up in my body. I couldn't walk around campus anymore. My oxygen was on 24/7. I had no social life. Basically, I wasn't really living anymore.
When I was listed, it was how long you were on the list, not how sick you were. Since I knew time was running out, we moved to New Orleans which had a significantly shorter wait time and would give me the best chance for survival. I did not do all that much while we waited other than hang out with my friends/family who came to visit. I wasn't in school anymore and suriving all of a sudden became my full time job.
Now, here I am, seven whole years after my transplant. Life could not be better. I live and work in the best city in the world. And believe me, I work a ton of hours and I'm not even tired. I ran a half marathon. I go to the gym every day. I see my friends when I want to. Life is great these days. I've had my share of issues after my transplant (PTLD, Sinus Polyps needing surgeries, pneumonia) but these are all bumps in the road.
This is a personal decision, but there is a very full life wiating for you on the other side.
This is such an important time in your journey and such a difficult decision to make. While I was listed, my quality of life was pretty poor. Leading up to being listed for the transplant, I was holding my own. I finished two years of college with a pretty heavy work load. I struggled to walk around campus but it was nothing that I couldn't adjust to. After my sophomore year, things changed for me quite rapidly. I went into the hospital for what I thought was just a normal clean out. Turns out, my lungs were so full of mucous that I ended up spending three weeks in the hospital and the doctors were not sure that I was going to pull through. I was fighting 104 degree fevers (you feel like you are burning from the inside out) and was coughing so much that I was just physically exhausted. The doctors did a bronchoscopy and cleaned out my lungs and lo and behold, I started a very slow recovery. From that point on, I was on oxygen almost all of the time. I did go back to school, but I was also getting evaluated for the transplant at that point. I got listed and then again went back to a steady decline. It was difficult to impossible to walk up or down the stairs since my knees were so swollen from fluid back up in my body. I couldn't walk around campus anymore. My oxygen was on 24/7. I had no social life. Basically, I wasn't really living anymore.
When I was listed, it was how long you were on the list, not how sick you were. Since I knew time was running out, we moved to New Orleans which had a significantly shorter wait time and would give me the best chance for survival. I did not do all that much while we waited other than hang out with my friends/family who came to visit. I wasn't in school anymore and suriving all of a sudden became my full time job.
Now, here I am, seven whole years after my transplant. Life could not be better. I live and work in the best city in the world. And believe me, I work a ton of hours and I'm not even tired. I ran a half marathon. I go to the gym every day. I see my friends when I want to. Life is great these days. I've had my share of issues after my transplant (PTLD, Sinus Polyps needing surgeries, pneumonia) but these are all bumps in the road.
This is a personal decision, but there is a very full life wiating for you on the other side.
Hi JT,
<br />
<br />This is such an important time in your journey and such a difficult decision to make. While I was listed, my quality of life was pretty poor. Leading up to being listed for the transplant, I was holding my own. I finished two years of college with a pretty heavy work load. I struggled to walk around campus but it was nothing that I couldn't adjust to. After my sophomore year, things changed for me quite rapidly. I went into the hospital for what I thought was just a normal clean out. Turns out, my lungs were so full of mucous that I ended up spending three weeks in the hospital and the doctors were not sure that I was going to pull through. I was fighting 104 degree fevers (you feel like you are burning from the inside out) and was coughing so much that I was just physically exhausted. The doctors did a bronchoscopy and cleaned out my lungs and lo and behold, I started a very slow recovery. From that point on, I was on oxygen almost all of the time. I did go back to school, but I was also getting evaluated for the transplant at that point. I got listed and then again went back to a steady decline. It was difficult to impossible to walk up or down the stairs since my knees were so swollen from fluid back up in my body. I couldn't walk around campus anymore. My oxygen was on 24/7. I had no social life. Basically, I wasn't really living anymore.
<br />
<br />When I was listed, it was how long you were on the list, not how sick you were. Since I knew time was running out, we moved to New Orleans which had a significantly shorter wait time and would give me the best chance for survival. I did not do all that much while we waited other than hang out with my friends/family who came to visit. I wasn't in school anymore and suriving all of a sudden became my full time job.
<br />
<br />Now, here I am, seven whole years after my transplant. Life could not be better. I live and work in the best city in the world. And believe me, I work a ton of hours and I'm not even tired. I ran a half marathon. I go to the gym every day. I see my friends when I want to. Life is great these days. I've had my share of issues after my transplant (PTLD, Sinus Polyps needing surgeries, pneumonia) but these are all bumps in the road.
<br />
<br />This is a personal decision, but there is a very full life wiating for you on the other side.
<br />
<br />This is such an important time in your journey and such a difficult decision to make. While I was listed, my quality of life was pretty poor. Leading up to being listed for the transplant, I was holding my own. I finished two years of college with a pretty heavy work load. I struggled to walk around campus but it was nothing that I couldn't adjust to. After my sophomore year, things changed for me quite rapidly. I went into the hospital for what I thought was just a normal clean out. Turns out, my lungs were so full of mucous that I ended up spending three weeks in the hospital and the doctors were not sure that I was going to pull through. I was fighting 104 degree fevers (you feel like you are burning from the inside out) and was coughing so much that I was just physically exhausted. The doctors did a bronchoscopy and cleaned out my lungs and lo and behold, I started a very slow recovery. From that point on, I was on oxygen almost all of the time. I did go back to school, but I was also getting evaluated for the transplant at that point. I got listed and then again went back to a steady decline. It was difficult to impossible to walk up or down the stairs since my knees were so swollen from fluid back up in my body. I couldn't walk around campus anymore. My oxygen was on 24/7. I had no social life. Basically, I wasn't really living anymore.
<br />
<br />When I was listed, it was how long you were on the list, not how sick you were. Since I knew time was running out, we moved to New Orleans which had a significantly shorter wait time and would give me the best chance for survival. I did not do all that much while we waited other than hang out with my friends/family who came to visit. I wasn't in school anymore and suriving all of a sudden became my full time job.
<br />
<br />Now, here I am, seven whole years after my transplant. Life could not be better. I live and work in the best city in the world. And believe me, I work a ton of hours and I'm not even tired. I ran a half marathon. I go to the gym every day. I see my friends when I want to. Life is great these days. I've had my share of issues after my transplant (PTLD, Sinus Polyps needing surgeries, pneumonia) but these are all bumps in the road.
<br />
<br />This is a personal decision, but there is a very full life wiating for you on the other side.
Thank you so much for your replies.
Ldude - "My symptoms were not specifically lung related - it was more fatigue and just terrible quality of life." This is very helpful for me to hear. My CF doc continually points out that most patients have more lung-related symptoms upon admission. He thinks (and has ruled out anything he can think of) I have something else going on driving my symptoms of fatigue/exhaustion/aches. Makes me feel like a wimp when I raise the flag for a hospital admission because I don't have raging fevers, high CRP's, oxygen 24/7, etc. My whole body is just BEAT and I can't function. It's so subjective and hard to decipher how much, if any, is related to depression vs. just an effect of CF. Sounds like you have a great perspective and I'll keep you in my thoughts as you're listed. I don't know how you don't think about transplant more often. I'm jealous because I can't get it out of my mind for a single day! Good for you. Looking forward to hearing you got the call when the time is right! I too now consider my full time job my health as I cut WAY back working as of 2 years ago (self employed so just work a few hours/week now). But it's depressing sometimes even though I feel it's the right thing to do at this stage. Do you experience that at all?
painfreak - That's great you were able to keep in such good shape pre-xplant. I'm sure that played a role in how well you're doing now. I'm doing my best and exercising 5 days/week but I'm noticing I get sick if I push just a little too hard. Such a tough balance. Which of your current limitations, if you don't mind my asking, prevent you from working?
Margaret - What an inspiration you are! Sounds like you've gone from one extreme to the other. Love hearing of the active life you're leading now. I hear you that a full life is waiting on the other side. I can really picture that. I just want to go as long as I can without it but it's hard to imagine doing just that some days. There's a part of me that feels the right thing to do is "stick it out" and not get listed until it's painfully obvious (fevers, oxygen 24/7, even more admissions, etc) but I given how often I am currently just plain run down and nonfunctional from a whole body perspective, it's hard to imagine.
I look forward to more discussion and hearing more stories. Thanks again.
Ldude - "My symptoms were not specifically lung related - it was more fatigue and just terrible quality of life." This is very helpful for me to hear. My CF doc continually points out that most patients have more lung-related symptoms upon admission. He thinks (and has ruled out anything he can think of) I have something else going on driving my symptoms of fatigue/exhaustion/aches. Makes me feel like a wimp when I raise the flag for a hospital admission because I don't have raging fevers, high CRP's, oxygen 24/7, etc. My whole body is just BEAT and I can't function. It's so subjective and hard to decipher how much, if any, is related to depression vs. just an effect of CF. Sounds like you have a great perspective and I'll keep you in my thoughts as you're listed. I don't know how you don't think about transplant more often. I'm jealous because I can't get it out of my mind for a single day! Good for you. Looking forward to hearing you got the call when the time is right! I too now consider my full time job my health as I cut WAY back working as of 2 years ago (self employed so just work a few hours/week now). But it's depressing sometimes even though I feel it's the right thing to do at this stage. Do you experience that at all?
painfreak - That's great you were able to keep in such good shape pre-xplant. I'm sure that played a role in how well you're doing now. I'm doing my best and exercising 5 days/week but I'm noticing I get sick if I push just a little too hard. Such a tough balance. Which of your current limitations, if you don't mind my asking, prevent you from working?
Margaret - What an inspiration you are! Sounds like you've gone from one extreme to the other. Love hearing of the active life you're leading now. I hear you that a full life is waiting on the other side. I can really picture that. I just want to go as long as I can without it but it's hard to imagine doing just that some days. There's a part of me that feels the right thing to do is "stick it out" and not get listed until it's painfully obvious (fevers, oxygen 24/7, even more admissions, etc) but I given how often I am currently just plain run down and nonfunctional from a whole body perspective, it's hard to imagine.
I look forward to more discussion and hearing more stories. Thanks again.
Thank you so much for your replies.
Ldude - "My symptoms were not specifically lung related - it was more fatigue and just terrible quality of life." This is very helpful for me to hear. My CF doc continually points out that most patients have more lung-related symptoms upon admission. He thinks (and has ruled out anything he can think of) I have something else going on driving my symptoms of fatigue/exhaustion/aches. Makes me feel like a wimp when I raise the flag for a hospital admission because I don't have raging fevers, high CRP's, oxygen 24/7, etc. My whole body is just BEAT and I can't function. It's so subjective and hard to decipher how much, if any, is related to depression vs. just an effect of CF. Sounds like you have a great perspective and I'll keep you in my thoughts as you're listed. I don't know how you don't think about transplant more often. I'm jealous because I can't get it out of my mind for a single day! Good for you. Looking forward to hearing you got the call when the time is right! I too now consider my full time job my health as I cut WAY back working as of 2 years ago (self employed so just work a few hours/week now). But it's depressing sometimes even though I feel it's the right thing to do at this stage. Do you experience that at all?
painfreak - That's great you were able to keep in such good shape pre-xplant. I'm sure that played a role in how well you're doing now. I'm doing my best and exercising 5 days/week but I'm noticing I get sick if I push just a little too hard. Such a tough balance. Which of your current limitations, if you don't mind my asking, prevent you from working?
Margaret - What an inspiration you are! Sounds like you've gone from one extreme to the other. Love hearing of the active life you're leading now. I hear you that a full life is waiting on the other side. I can really picture that. I just want to go as long as I can without it but it's hard to imagine doing just that some days. There's a part of me that feels the right thing to do is "stick it out" and not get listed until it's painfully obvious (fevers, oxygen 24/7, even more admissions, etc) but I given how often I am currently just plain run down and nonfunctional from a whole body perspective, it's hard to imagine.
I look forward to more discussion and hearing more stories. Thanks again.
Ldude - "My symptoms were not specifically lung related - it was more fatigue and just terrible quality of life." This is very helpful for me to hear. My CF doc continually points out that most patients have more lung-related symptoms upon admission. He thinks (and has ruled out anything he can think of) I have something else going on driving my symptoms of fatigue/exhaustion/aches. Makes me feel like a wimp when I raise the flag for a hospital admission because I don't have raging fevers, high CRP's, oxygen 24/7, etc. My whole body is just BEAT and I can't function. It's so subjective and hard to decipher how much, if any, is related to depression vs. just an effect of CF. Sounds like you have a great perspective and I'll keep you in my thoughts as you're listed. I don't know how you don't think about transplant more often. I'm jealous because I can't get it out of my mind for a single day! Good for you. Looking forward to hearing you got the call when the time is right! I too now consider my full time job my health as I cut WAY back working as of 2 years ago (self employed so just work a few hours/week now). But it's depressing sometimes even though I feel it's the right thing to do at this stage. Do you experience that at all?
painfreak - That's great you were able to keep in such good shape pre-xplant. I'm sure that played a role in how well you're doing now. I'm doing my best and exercising 5 days/week but I'm noticing I get sick if I push just a little too hard. Such a tough balance. Which of your current limitations, if you don't mind my asking, prevent you from working?
Margaret - What an inspiration you are! Sounds like you've gone from one extreme to the other. Love hearing of the active life you're leading now. I hear you that a full life is waiting on the other side. I can really picture that. I just want to go as long as I can without it but it's hard to imagine doing just that some days. There's a part of me that feels the right thing to do is "stick it out" and not get listed until it's painfully obvious (fevers, oxygen 24/7, even more admissions, etc) but I given how often I am currently just plain run down and nonfunctional from a whole body perspective, it's hard to imagine.
I look forward to more discussion and hearing more stories. Thanks again.
Thank you so much for your replies.
<br />
<br />Ldude - "My symptoms were not specifically lung related - it was more fatigue and just terrible quality of life." This is very helpful for me to hear. My CF doc continually points out that most patients have more lung-related symptoms upon admission. He thinks (and has ruled out anything he can think of) I have something else going on driving my symptoms of fatigue/exhaustion/aches. Makes me feel like a wimp when I raise the flag for a hospital admission because I don't have raging fevers, high CRP's, oxygen 24/7, etc. My whole body is just BEAT and I can't function. It's so subjective and hard to decipher how much, if any, is related to depression vs. just an effect of CF. Sounds like you have a great perspective and I'll keep you in my thoughts as you're listed. I don't know how you don't think about transplant more often. I'm jealous because I can't get it out of my mind for a single day! Good for you. Looking forward to hearing you got the call when the time is right! I too now consider my full time job my health as I cut WAY back working as of 2 years ago (self employed so just work a few hours/week now). But it's depressing sometimes even though I feel it's the right thing to do at this stage. Do you experience that at all?
<br />
<br />painfreak - That's great you were able to keep in such good shape pre-xplant. I'm sure that played a role in how well you're doing now. I'm doing my best and exercising 5 days/week but I'm noticing I get sick if I push just a little too hard. Such a tough balance. Which of your current limitations, if you don't mind my asking, prevent you from working?
<br />
<br />Margaret - What an inspiration you are! Sounds like you've gone from one extreme to the other. Love hearing of the active life you're leading now. I hear you that a full life is waiting on the other side. I can really picture that. I just want to go as long as I can without it but it's hard to imagine doing just that some days. There's a part of me that feels the right thing to do is "stick it out" and not get listed until it's painfully obvious (fevers, oxygen 24/7, even more admissions, etc) but I given how often I am currently just plain run down and nonfunctional from a whole body perspective, it's hard to imagine.
<br />
<br />I look forward to more discussion and hearing more stories. Thanks again.
<br />
<br />Ldude - "My symptoms were not specifically lung related - it was more fatigue and just terrible quality of life." This is very helpful for me to hear. My CF doc continually points out that most patients have more lung-related symptoms upon admission. He thinks (and has ruled out anything he can think of) I have something else going on driving my symptoms of fatigue/exhaustion/aches. Makes me feel like a wimp when I raise the flag for a hospital admission because I don't have raging fevers, high CRP's, oxygen 24/7, etc. My whole body is just BEAT and I can't function. It's so subjective and hard to decipher how much, if any, is related to depression vs. just an effect of CF. Sounds like you have a great perspective and I'll keep you in my thoughts as you're listed. I don't know how you don't think about transplant more often. I'm jealous because I can't get it out of my mind for a single day! Good for you. Looking forward to hearing you got the call when the time is right! I too now consider my full time job my health as I cut WAY back working as of 2 years ago (self employed so just work a few hours/week now). But it's depressing sometimes even though I feel it's the right thing to do at this stage. Do you experience that at all?
<br />
<br />painfreak - That's great you were able to keep in such good shape pre-xplant. I'm sure that played a role in how well you're doing now. I'm doing my best and exercising 5 days/week but I'm noticing I get sick if I push just a little too hard. Such a tough balance. Which of your current limitations, if you don't mind my asking, prevent you from working?
<br />
<br />Margaret - What an inspiration you are! Sounds like you've gone from one extreme to the other. Love hearing of the active life you're leading now. I hear you that a full life is waiting on the other side. I can really picture that. I just want to go as long as I can without it but it's hard to imagine doing just that some days. There's a part of me that feels the right thing to do is "stick it out" and not get listed until it's painfully obvious (fevers, oxygen 24/7, even more admissions, etc) but I given how often I am currently just plain run down and nonfunctional from a whole body perspective, it's hard to imagine.
<br />
<br />I look forward to more discussion and hearing more stories. Thanks again.
Hi JT,
One thing I have noticed is that my CF doctor does NOT know all there is to know about transplants. You really need to meet the transplant team at the hospital you wish the transplant to take place. Only they are the ones that can evaluate your physical readiness for transplant. One key thing is that the transplant team wants you to be relatively 'healthy', because you'll come through the surgery and recovery so much better. You have to be a certain weight, you must go to rehab and you must be committed to staying strong before the call comes. So, regardless what your CF doctor thinks, I think you should still push him to refer you to the transplant team so you can get the correct information before making your decision. The transplant team will even conduct all of the tests necessary to be listed and let you make the final decision on this after you have all the information - that is what they did for my cousin....and it's really good b/c once he finally decides to be listed, he's already "in" with the transplant team, so it will be way quicker to be listed in case you do get really sick.
If you can't keep transplant out of your head, my advice is to get the consulation. I was depressed for a while when I was first thinking about stopping work, like I was wimp. However, a month before my last day, I was just so fatigued and distracted, I was actually begging for disability to come faster. It was depressing to realize I couldn't 100% be the person I wanted to be at that moment in time in terms of fulfilling committments to my job, friends, husband, but I realized if I kept working, I would literally die, and then that wouldn't benefit anyone! I just had to turn it around and say to myself "this is my time now" and know that once I am healthy again, I will be able to give back to all the wonderful people that are giving to me right now. I plan on going into patient advocacy once I am better so I can give back.
It's funny, even though I am not working, I feel fulfilled now. It's hard to invest time into yourself, but it is making me a better person. I have more time for my husband, cooking dinners at my own pace, seeing friends....before when I was working, I couldn't do it all. I find I have a lot better of a personal life now, even though most of it is therapy, but I am more free to spend my "free" time in a quality way. I learned to find joy in the things I was missing when I worked 40 hours a week! Maybe that's why I don't think about transplant much anymore...I just find joy in the daily things, live in the moment - you can't dwell on things you cannot control (It took me 30 yrs to learn this).
I think once you become educated about transplant and find out your overall health from the transplant team, you can make a better decision and hopefully stop thinking about transplant every day! I hope I've given you some tips on some ways to turn your sad days into better days. Get a dog - they're a fun distraction =)
Laura
One thing I have noticed is that my CF doctor does NOT know all there is to know about transplants. You really need to meet the transplant team at the hospital you wish the transplant to take place. Only they are the ones that can evaluate your physical readiness for transplant. One key thing is that the transplant team wants you to be relatively 'healthy', because you'll come through the surgery and recovery so much better. You have to be a certain weight, you must go to rehab and you must be committed to staying strong before the call comes. So, regardless what your CF doctor thinks, I think you should still push him to refer you to the transplant team so you can get the correct information before making your decision. The transplant team will even conduct all of the tests necessary to be listed and let you make the final decision on this after you have all the information - that is what they did for my cousin....and it's really good b/c once he finally decides to be listed, he's already "in" with the transplant team, so it will be way quicker to be listed in case you do get really sick.
If you can't keep transplant out of your head, my advice is to get the consulation. I was depressed for a while when I was first thinking about stopping work, like I was wimp. However, a month before my last day, I was just so fatigued and distracted, I was actually begging for disability to come faster. It was depressing to realize I couldn't 100% be the person I wanted to be at that moment in time in terms of fulfilling committments to my job, friends, husband, but I realized if I kept working, I would literally die, and then that wouldn't benefit anyone! I just had to turn it around and say to myself "this is my time now" and know that once I am healthy again, I will be able to give back to all the wonderful people that are giving to me right now. I plan on going into patient advocacy once I am better so I can give back.
It's funny, even though I am not working, I feel fulfilled now. It's hard to invest time into yourself, but it is making me a better person. I have more time for my husband, cooking dinners at my own pace, seeing friends....before when I was working, I couldn't do it all. I find I have a lot better of a personal life now, even though most of it is therapy, but I am more free to spend my "free" time in a quality way. I learned to find joy in the things I was missing when I worked 40 hours a week! Maybe that's why I don't think about transplant much anymore...I just find joy in the daily things, live in the moment - you can't dwell on things you cannot control (It took me 30 yrs to learn this).
I think once you become educated about transplant and find out your overall health from the transplant team, you can make a better decision and hopefully stop thinking about transplant every day! I hope I've given you some tips on some ways to turn your sad days into better days. Get a dog - they're a fun distraction =)
Laura
Hi JT,
One thing I have noticed is that my CF doctor does NOT know all there is to know about transplants. You really need to meet the transplant team at the hospital you wish the transplant to take place. Only they are the ones that can evaluate your physical readiness for transplant. One key thing is that the transplant team wants you to be relatively 'healthy', because you'll come through the surgery and recovery so much better. You have to be a certain weight, you must go to rehab and you must be committed to staying strong before the call comes. So, regardless what your CF doctor thinks, I think you should still push him to refer you to the transplant team so you can get the correct information before making your decision. The transplant team will even conduct all of the tests necessary to be listed and let you make the final decision on this after you have all the information - that is what they did for my cousin....and it's really good b/c once he finally decides to be listed, he's already "in" with the transplant team, so it will be way quicker to be listed in case you do get really sick.
If you can't keep transplant out of your head, my advice is to get the consulation. I was depressed for a while when I was first thinking about stopping work, like I was wimp. However, a month before my last day, I was just so fatigued and distracted, I was actually begging for disability to come faster. It was depressing to realize I couldn't 100% be the person I wanted to be at that moment in time in terms of fulfilling committments to my job, friends, husband, but I realized if I kept working, I would literally die, and then that wouldn't benefit anyone! I just had to turn it around and say to myself "this is my time now" and know that once I am healthy again, I will be able to give back to all the wonderful people that are giving to me right now. I plan on going into patient advocacy once I am better so I can give back.
It's funny, even though I am not working, I feel fulfilled now. It's hard to invest time into yourself, but it is making me a better person. I have more time for my husband, cooking dinners at my own pace, seeing friends....before when I was working, I couldn't do it all. I find I have a lot better of a personal life now, even though most of it is therapy, but I am more free to spend my "free" time in a quality way. I learned to find joy in the things I was missing when I worked 40 hours a week! Maybe that's why I don't think about transplant much anymore...I just find joy in the daily things, live in the moment - you can't dwell on things you cannot control (It took me 30 yrs to learn this).
I think once you become educated about transplant and find out your overall health from the transplant team, you can make a better decision and hopefully stop thinking about transplant every day! I hope I've given you some tips on some ways to turn your sad days into better days. Get a dog - they're a fun distraction =)
Laura
One thing I have noticed is that my CF doctor does NOT know all there is to know about transplants. You really need to meet the transplant team at the hospital you wish the transplant to take place. Only they are the ones that can evaluate your physical readiness for transplant. One key thing is that the transplant team wants you to be relatively 'healthy', because you'll come through the surgery and recovery so much better. You have to be a certain weight, you must go to rehab and you must be committed to staying strong before the call comes. So, regardless what your CF doctor thinks, I think you should still push him to refer you to the transplant team so you can get the correct information before making your decision. The transplant team will even conduct all of the tests necessary to be listed and let you make the final decision on this after you have all the information - that is what they did for my cousin....and it's really good b/c once he finally decides to be listed, he's already "in" with the transplant team, so it will be way quicker to be listed in case you do get really sick.
If you can't keep transplant out of your head, my advice is to get the consulation. I was depressed for a while when I was first thinking about stopping work, like I was wimp. However, a month before my last day, I was just so fatigued and distracted, I was actually begging for disability to come faster. It was depressing to realize I couldn't 100% be the person I wanted to be at that moment in time in terms of fulfilling committments to my job, friends, husband, but I realized if I kept working, I would literally die, and then that wouldn't benefit anyone! I just had to turn it around and say to myself "this is my time now" and know that once I am healthy again, I will be able to give back to all the wonderful people that are giving to me right now. I plan on going into patient advocacy once I am better so I can give back.
It's funny, even though I am not working, I feel fulfilled now. It's hard to invest time into yourself, but it is making me a better person. I have more time for my husband, cooking dinners at my own pace, seeing friends....before when I was working, I couldn't do it all. I find I have a lot better of a personal life now, even though most of it is therapy, but I am more free to spend my "free" time in a quality way. I learned to find joy in the things I was missing when I worked 40 hours a week! Maybe that's why I don't think about transplant much anymore...I just find joy in the daily things, live in the moment - you can't dwell on things you cannot control (It took me 30 yrs to learn this).
I think once you become educated about transplant and find out your overall health from the transplant team, you can make a better decision and hopefully stop thinking about transplant every day! I hope I've given you some tips on some ways to turn your sad days into better days. Get a dog - they're a fun distraction =)
Laura
Hi JT,
<br />One thing I have noticed is that my CF doctor does NOT know all there is to know about transplants. You really need to meet the transplant team at the hospital you wish the transplant to take place. Only they are the ones that can evaluate your physical readiness for transplant. One key thing is that the transplant team wants you to be relatively 'healthy', because you'll come through the surgery and recovery so much better. You have to be a certain weight, you must go to rehab and you must be committed to staying strong before the call comes. So, regardless what your CF doctor thinks, I think you should still push him to refer you to the transplant team so you can get the correct information before making your decision. The transplant team will even conduct all of the tests necessary to be listed and let you make the final decision on this after you have all the information - that is what they did for my cousin....and it's really good b/c once he finally decides to be listed, he's already "in" with the transplant team, so it will be way quicker to be listed in case you do get really sick.
<br />
<br />If you can't keep transplant out of your head, my advice is to get the consulation. I was depressed for a while when I was first thinking about stopping work, like I was wimp. However, a month before my last day, I was just so fatigued and distracted, I was actually begging for disability to come faster. It was depressing to realize I couldn't 100% be the person I wanted to be at that moment in time in terms of fulfilling committments to my job, friends, husband, but I realized if I kept working, I would literally die, and then that wouldn't benefit anyone! I just had to turn it around and say to myself "this is my time now" and know that once I am healthy again, I will be able to give back to all the wonderful people that are giving to me right now. I plan on going into patient advocacy once I am better so I can give back.
<br />
<br />It's funny, even though I am not working, I feel fulfilled now. It's hard to invest time into yourself, but it is making me a better person. I have more time for my husband, cooking dinners at my own pace, seeing friends....before when I was working, I couldn't do it all. I find I have a lot better of a personal life now, even though most of it is therapy, but I am more free to spend my "free" time in a quality way. I learned to find joy in the things I was missing when I worked 40 hours a week! Maybe that's why I don't think about transplant much anymore...I just find joy in the daily things, live in the moment - you can't dwell on things you cannot control (It took me 30 yrs to learn this).
<br />
<br />I think once you become educated about transplant and find out your overall health from the transplant team, you can make a better decision and hopefully stop thinking about transplant every day! I hope I've given you some tips on some ways to turn your sad days into better days. Get a dog - they're a fun distraction =)
<br />
<br />Laura
<br />One thing I have noticed is that my CF doctor does NOT know all there is to know about transplants. You really need to meet the transplant team at the hospital you wish the transplant to take place. Only they are the ones that can evaluate your physical readiness for transplant. One key thing is that the transplant team wants you to be relatively 'healthy', because you'll come through the surgery and recovery so much better. You have to be a certain weight, you must go to rehab and you must be committed to staying strong before the call comes. So, regardless what your CF doctor thinks, I think you should still push him to refer you to the transplant team so you can get the correct information before making your decision. The transplant team will even conduct all of the tests necessary to be listed and let you make the final decision on this after you have all the information - that is what they did for my cousin....and it's really good b/c once he finally decides to be listed, he's already "in" with the transplant team, so it will be way quicker to be listed in case you do get really sick.
<br />
<br />If you can't keep transplant out of your head, my advice is to get the consulation. I was depressed for a while when I was first thinking about stopping work, like I was wimp. However, a month before my last day, I was just so fatigued and distracted, I was actually begging for disability to come faster. It was depressing to realize I couldn't 100% be the person I wanted to be at that moment in time in terms of fulfilling committments to my job, friends, husband, but I realized if I kept working, I would literally die, and then that wouldn't benefit anyone! I just had to turn it around and say to myself "this is my time now" and know that once I am healthy again, I will be able to give back to all the wonderful people that are giving to me right now. I plan on going into patient advocacy once I am better so I can give back.
<br />
<br />It's funny, even though I am not working, I feel fulfilled now. It's hard to invest time into yourself, but it is making me a better person. I have more time for my husband, cooking dinners at my own pace, seeing friends....before when I was working, I couldn't do it all. I find I have a lot better of a personal life now, even though most of it is therapy, but I am more free to spend my "free" time in a quality way. I learned to find joy in the things I was missing when I worked 40 hours a week! Maybe that's why I don't think about transplant much anymore...I just find joy in the daily things, live in the moment - you can't dwell on things you cannot control (It took me 30 yrs to learn this).
<br />
<br />I think once you become educated about transplant and find out your overall health from the transplant team, you can make a better decision and hopefully stop thinking about transplant every day! I hope I've given you some tips on some ways to turn your sad days into better days. Get a dog - they're a fun distraction =)
<br />
<br />Laura