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pre-trans quality of life
- Thread starter JT
- Start date
Hey Jason, I have been listed for 10 months now and when I was first listed I was mostly just having trouble walking long distances and I avoided stairs at all costs. At that point I was only using oxygen at night but a few weeks after being listed my docs put me on it full time. I also found myself more tired and sleeping a lot and also needing more ivs. For the first 2-3 months I was still holding my own, I wasn't working or going to school anymore but I was still able to go out with friends and do most normal daily activities. Now I sleep a lot and spend most of my day in bed reading and watching tv. When I feel good I'll let someone convince me to get out of the house for a couple of hours for some fun. I had to get a feeding tube to keep my nutrition going because of lack of appetite, I just couldnt force myself to eat the amount of calories my body was needing. At my worst I hit 81 lbs but am back up to 105. While most of the people I know who are listed for transplant have to do ivs more often I'm a little more unusual in that right now I have to do round of iv meds every 2 weeks, that for me is the biggest pain. Honestly though I have to say that despite all these changes these 10 months have gone by so fast. It doesn't hurt to go through the evaluation now while you're healthy enough, you can always choose not to be listed at this time. But as my docs were always telling me it's better to do it and be on the transplant teams radar than weight too long and be too sick to go through all the testing. Good luck to you in whatever you decide!
Hey Jason, I have been listed for 10 months now and when I was first listed I was mostly just having trouble walking long distances and I avoided stairs at all costs. At that point I was only using oxygen at night but a few weeks after being listed my docs put me on it full time. I also found myself more tired and sleeping a lot and also needing more ivs. For the first 2-3 months I was still holding my own, I wasn't working or going to school anymore but I was still able to go out with friends and do most normal daily activities. Now I sleep a lot and spend most of my day in bed reading and watching tv. When I feel good I'll let someone convince me to get out of the house for a couple of hours for some fun. I had to get a feeding tube to keep my nutrition going because of lack of appetite, I just couldnt force myself to eat the amount of calories my body was needing. At my worst I hit 81 lbs but am back up to 105. While most of the people I know who are listed for transplant have to do ivs more often I'm a little more unusual in that right now I have to do round of iv meds every 2 weeks, that for me is the biggest pain. Honestly though I have to say that despite all these changes these 10 months have gone by so fast. It doesn't hurt to go through the evaluation now while you're healthy enough, you can always choose not to be listed at this time. But as my docs were always telling me it's better to do it and be on the transplant teams radar than weight too long and be too sick to go through all the testing. Good luck to you in whatever you decide!
Hey Jason, I have been listed for 10 months now and when I was first listed I was mostly just having trouble walking long distances and I avoided stairs at all costs. At that point I was only using oxygen at night but a few weeks after being listed my docs put me on it full time. I also found myself more tired and sleeping a lot and also needing more ivs. For the first 2-3 months I was still holding my own, I wasn't working or going to school anymore but I was still able to go out with friends and do most normal daily activities. Now I sleep a lot and spend most of my day in bed reading and watching tv. When I feel good I'll let someone convince me to get out of the house for a couple of hours for some fun. I had to get a feeding tube to keep my nutrition going because of lack of appetite, I just couldnt force myself to eat the amount of calories my body was needing. At my worst I hit 81 lbs but am back up to 105. While most of the people I know who are listed for transplant have to do ivs more often I'm a little more unusual in that right now I have to do round of iv meds every 2 weeks, that for me is the biggest pain. Honestly though I have to say that despite all these changes these 10 months have gone by so fast. It doesn't hurt to go through the evaluation now while you're healthy enough, you can always choose not to be listed at this time. But as my docs were always telling me it's better to do it and be on the transplant teams radar than weight too long and be too sick to go through all the testing. Good luck to you in whatever you decide!
Hey JT,
I'm currently evaluated, with probably going to be listed in a couple months. My quality of life isn't toooo bad. I am able to still do things around the house, go out to a restaurant/movie ect. but I do notice if I got out for a few hours, I am tired when I get home. I am on oxygen 24/7 (but not a high amount at the moment). My opinion is to get on the list sooner rather than later because you don't want to be crashing and burning waiting for new lungs. Your chances are much better if you get new lungs if your not "as sick". I currently do tuneups about 3 times a year, to keep me stable. But like I said, I will probably get listed shortly, so that improves my chances of getting lungs when I'm more healthy, rather than clinging for life.
Chicks did guys with new lungs right? ;-)
I'm currently evaluated, with probably going to be listed in a couple months. My quality of life isn't toooo bad. I am able to still do things around the house, go out to a restaurant/movie ect. but I do notice if I got out for a few hours, I am tired when I get home. I am on oxygen 24/7 (but not a high amount at the moment). My opinion is to get on the list sooner rather than later because you don't want to be crashing and burning waiting for new lungs. Your chances are much better if you get new lungs if your not "as sick". I currently do tuneups about 3 times a year, to keep me stable. But like I said, I will probably get listed shortly, so that improves my chances of getting lungs when I'm more healthy, rather than clinging for life.
Chicks did guys with new lungs right? ;-)
Hey JT,
I'm currently evaluated, with probably going to be listed in a couple months. My quality of life isn't toooo bad. I am able to still do things around the house, go out to a restaurant/movie ect. but I do notice if I got out for a few hours, I am tired when I get home. I am on oxygen 24/7 (but not a high amount at the moment). My opinion is to get on the list sooner rather than later because you don't want to be crashing and burning waiting for new lungs. Your chances are much better if you get new lungs if your not "as sick". I currently do tuneups about 3 times a year, to keep me stable. But like I said, I will probably get listed shortly, so that improves my chances of getting lungs when I'm more healthy, rather than clinging for life.
Chicks did guys with new lungs right? ;-)
I'm currently evaluated, with probably going to be listed in a couple months. My quality of life isn't toooo bad. I am able to still do things around the house, go out to a restaurant/movie ect. but I do notice if I got out for a few hours, I am tired when I get home. I am on oxygen 24/7 (but not a high amount at the moment). My opinion is to get on the list sooner rather than later because you don't want to be crashing and burning waiting for new lungs. Your chances are much better if you get new lungs if your not "as sick". I currently do tuneups about 3 times a year, to keep me stable. But like I said, I will probably get listed shortly, so that improves my chances of getting lungs when I'm more healthy, rather than clinging for life.
Chicks did guys with new lungs right? ;-)
Hey JT,
<br />
<br />I'm currently evaluated, with probably going to be listed in a couple months. My quality of life isn't toooo bad. I am able to still do things around the house, go out to a restaurant/movie ect. but I do notice if I got out for a few hours, I am tired when I get home. I am on oxygen 24/7 (but not a high amount at the moment). My opinion is to get on the list sooner rather than later because you don't want to be crashing and burning waiting for new lungs. Your chances are much better if you get new lungs if your not "as sick". I currently do tuneups about 3 times a year, to keep me stable. But like I said, I will probably get listed shortly, so that improves my chances of getting lungs when I'm more healthy, rather than clinging for life.
<br />
<br />Chicks did guys with new lungs right? ;-)
<br />
<br />I'm currently evaluated, with probably going to be listed in a couple months. My quality of life isn't toooo bad. I am able to still do things around the house, go out to a restaurant/movie ect. but I do notice if I got out for a few hours, I am tired when I get home. I am on oxygen 24/7 (but not a high amount at the moment). My opinion is to get on the list sooner rather than later because you don't want to be crashing and burning waiting for new lungs. Your chances are much better if you get new lungs if your not "as sick". I currently do tuneups about 3 times a year, to keep me stable. But like I said, I will probably get listed shortly, so that improves my chances of getting lungs when I'm more healthy, rather than clinging for life.
<br />
<br />Chicks did guys with new lungs right? ;-)
Laura and mag6125 - Sorry I didn't explain fully in my original post but I added an edit to it. I'm pretty informed about transplants as I was evaluated in 2002 and have gone to quarterly pre-xplant appts at my center as well as the educational seminars they put on / support groups since then. Lots of info over 9 years!! But every time I go it just seems everyone there is so much sicker than me so that's a little confusing. Of course you can only judge so much by appearances (I appear pretty healthy).
<br>
<br>Laura - Thanks for the input. So interesting you're only hospitalized once/year! Are you still on full time O2? Your get a dog comment made me smile. I'm glad you like being a dog owner! I've got two kids so I'm not lacking in the distraction department <img src="i/expressions/face-icon-small-smile.gif" border="0"> So while they're a good distraction, they're also good reminders I want to live as long as possible, hence not want to get listed prematurely.
<br>
<br>mag6125 - Helpful to hear you still went out for hours and did normal everyday activities when you were listed. So are your IV rounds two weeks on then two off and repeat? What are your indications for going on? Is it PFT'S or how you feel or other symptoms? I ask because my CF doc is giving me push back these days about going on IV's just a month after my last round. I feel I need them but he's trying crap like oral cipro that's never done anything for me!
<br>
<br>Oneof65 - Sounds like you're ready and in a good place with it. Oh, yeah chicks dig new lungs and have much respect for the battle wounds -- haha. same Q: what are your symptoms and/or stats for getting a tuneup? What are your PFT's like, if you don't mind my asking?
<br>
<br>Those that are on oxygen around the clock - are your sats regularly below 90 without it? That's just my doc's definition of needing oxygen and I'm wondering if that's universal?
<br>
<br>Sorry for so many Q's. I'm just getting a lot of confusing info from my CF doc and I'm beginning to see his opinions may be very different than mine about the best treatment plan to maximize my health up till transplant.
<br>
<br>Laura - Thanks for the input. So interesting you're only hospitalized once/year! Are you still on full time O2? Your get a dog comment made me smile. I'm glad you like being a dog owner! I've got two kids so I'm not lacking in the distraction department <img src="i/expressions/face-icon-small-smile.gif" border="0"> So while they're a good distraction, they're also good reminders I want to live as long as possible, hence not want to get listed prematurely.
<br>
<br>mag6125 - Helpful to hear you still went out for hours and did normal everyday activities when you were listed. So are your IV rounds two weeks on then two off and repeat? What are your indications for going on? Is it PFT'S or how you feel or other symptoms? I ask because my CF doc is giving me push back these days about going on IV's just a month after my last round. I feel I need them but he's trying crap like oral cipro that's never done anything for me!
<br>
<br>Oneof65 - Sounds like you're ready and in a good place with it. Oh, yeah chicks dig new lungs and have much respect for the battle wounds -- haha. same Q: what are your symptoms and/or stats for getting a tuneup? What are your PFT's like, if you don't mind my asking?
<br>
<br>Those that are on oxygen around the clock - are your sats regularly below 90 without it? That's just my doc's definition of needing oxygen and I'm wondering if that's universal?
<br>
<br>Sorry for so many Q's. I'm just getting a lot of confusing info from my CF doc and I'm beginning to see his opinions may be very different than mine about the best treatment plan to maximize my health up till transplant.
Laura and mag6125 - Sorry I didn't explain fully in my original post but I added an edit to it. I'm pretty informed about transplants as I was evaluated in 2002 and have gone to quarterly pre-xplant appts at my center as well as the educational seminars they put on / support groups since then. Lots of info over 9 years!! But every time I go it just seems everyone there is so much sicker than me so that's a little confusing. Of course you can only judge so much by appearances (I appear pretty healthy).
<br>
<br>Laura - Thanks for the input. So interesting you're only hospitalized once/year! Are you still on full time O2? Your get a dog comment made me smile. I'm glad you like being a dog owner! I've got two kids so I'm not lacking in the distraction department <img src="i/expressions/face-icon-small-smile.gif" border="0"> So while they're a good distraction, they're also good reminders I want to live as long as possible, hence not want to get listed prematurely.
<br>
<br>mag6125 - Helpful to hear you still went out for hours and did normal everyday activities when you were listed. So are your IV rounds two weeks on then two off and repeat? What are your indications for going on? Is it PFT'S or how you feel or other symptoms? I ask because my CF doc is giving me push back these days about going on IV's just a month after my last round. I feel I need them but he's trying crap like oral cipro that's never done anything for me!
<br>
<br>Oneof65 - Sounds like you're ready and in a good place with it. Oh, yeah chicks dig new lungs and have much respect for the battle wounds -- haha. same Q: what are your symptoms and/or stats for getting a tuneup? What are your PFT's like, if you don't mind my asking?
<br>
<br>Those that are on oxygen around the clock - are your sats regularly below 90 without it? That's just my doc's definition of needing oxygen and I'm wondering if that's universal?
<br>
<br>Sorry for so many Q's. I'm just getting a lot of confusing info from my CF doc and I'm beginning to see his opinions may be very different than mine about the best treatment plan to maximize my health up till transplant.
<br>
<br>Laura - Thanks for the input. So interesting you're only hospitalized once/year! Are you still on full time O2? Your get a dog comment made me smile. I'm glad you like being a dog owner! I've got two kids so I'm not lacking in the distraction department <img src="i/expressions/face-icon-small-smile.gif" border="0"> So while they're a good distraction, they're also good reminders I want to live as long as possible, hence not want to get listed prematurely.
<br>
<br>mag6125 - Helpful to hear you still went out for hours and did normal everyday activities when you were listed. So are your IV rounds two weeks on then two off and repeat? What are your indications for going on? Is it PFT'S or how you feel or other symptoms? I ask because my CF doc is giving me push back these days about going on IV's just a month after my last round. I feel I need them but he's trying crap like oral cipro that's never done anything for me!
<br>
<br>Oneof65 - Sounds like you're ready and in a good place with it. Oh, yeah chicks dig new lungs and have much respect for the battle wounds -- haha. same Q: what are your symptoms and/or stats for getting a tuneup? What are your PFT's like, if you don't mind my asking?
<br>
<br>Those that are on oxygen around the clock - are your sats regularly below 90 without it? That's just my doc's definition of needing oxygen and I'm wondering if that's universal?
<br>
<br>Sorry for so many Q's. I'm just getting a lot of confusing info from my CF doc and I'm beginning to see his opinions may be very different than mine about the best treatment plan to maximize my health up till transplant.
Laura and mag6125 - Sorry I didn't explain fully in my original post but I added an edit to it. I'm pretty informed about transplants as I was evaluated in 2002 and have gone to quarterly pre-xplant appts at my center as well as the educational seminars they put on / support groups since then. Lots of info over 9 years!! But every time I go it just seems everyone there is so much sicker than me so that's a little confusing. Of course you can only judge so much by appearances (I appear pretty healthy).
<br>
<br>Laura - Thanks for the input. So interesting you're only hospitalized once/year! Are you still on full time O2? Your get a dog comment made me smile. I'm glad you like being a dog owner! I've got two kids so I'm not lacking in the distraction department <img src="i/expressions/face-icon-small-smile.gif" border="0"> So while they're a good distraction, they're also good reminders I want to live as long as possible, hence not want to get listed prematurely.
<br>
<br>mag6125 - Helpful to hear you still went out for hours and did normal everyday activities when you were listed. So are your IV rounds two weeks on then two off and repeat? What are your indications for going on? Is it PFT'S or how you feel or other symptoms? I ask because my CF doc is giving me push back these days about going on IV's just a month after my last round. I feel I need them but he's trying crap like oral cipro that's never done anything for me!
<br>
<br>Oneof65 - Sounds like you're ready and in a good place with it. Oh, yeah chicks dig new lungs and have much respect for the battle wounds -- haha. same Q: what are your symptoms and/or stats for getting a tuneup? What are your PFT's like, if you don't mind my asking?
<br>
<br>Those that are on oxygen around the clock - are your sats regularly below 90 without it? That's just my doc's definition of needing oxygen and I'm wondering if that's universal?
<br>
<br>Sorry for so many Q's. I'm just getting a lot of confusing info from my CF doc and I'm beginning to see his opinions may be very different than mine about the best treatment plan to maximize my health up till transplant.
<br>
<br>Laura - Thanks for the input. So interesting you're only hospitalized once/year! Are you still on full time O2? Your get a dog comment made me smile. I'm glad you like being a dog owner! I've got two kids so I'm not lacking in the distraction department <img src="i/expressions/face-icon-small-smile.gif" border="0"> So while they're a good distraction, they're also good reminders I want to live as long as possible, hence not want to get listed prematurely.
<br>
<br>mag6125 - Helpful to hear you still went out for hours and did normal everyday activities when you were listed. So are your IV rounds two weeks on then two off and repeat? What are your indications for going on? Is it PFT'S or how you feel or other symptoms? I ask because my CF doc is giving me push back these days about going on IV's just a month after my last round. I feel I need them but he's trying crap like oral cipro that's never done anything for me!
<br>
<br>Oneof65 - Sounds like you're ready and in a good place with it. Oh, yeah chicks dig new lungs and have much respect for the battle wounds -- haha. same Q: what are your symptoms and/or stats for getting a tuneup? What are your PFT's like, if you don't mind my asking?
<br>
<br>Those that are on oxygen around the clock - are your sats regularly below 90 without it? That's just my doc's definition of needing oxygen and I'm wondering if that's universal?
<br>
<br>Sorry for so many Q's. I'm just getting a lot of confusing info from my CF doc and I'm beginning to see his opinions may be very different than mine about the best treatment plan to maximize my health up till transplant.
Yes, I am on O2 full time - 5 liters at rest and 6-8 when exercising. It's pretty annoying b/c the concentrators for the portable oxygen only go up to 5 liters, so I can't really exercise outside of pulmonary rehab and take a lot of rests when walking around/grocery shopping/doing things on weekends. But, you get used to it.....everything is just a slight adjustment! So my doctor prefers that I am above 92%, but 90% seems to be the norm. I drop below 90 if I'm off oxygen for more than probably 2 minutes.
I only grow aspergillus, so I guess my flare ups are contained. I mostly stay home and am a total frequent hand washer, so I tend not to pick up bugs anywhere...my husband hardly gets sick, and I have no kids to bring home infections =)
What transplant center are you attending? I appear VERY healthy..I look the same as my photo except I wear oxygen, so it is very deceiving! I did look like the healthiest person at my seminars, too, but a lot of ppl were old with COPD and they ARE going to look sick! However, the way I see it, the LAS really controls when your body is 'ready' to get new lungs. If all the tests get me to an LAS that makes it be my turn, then so be it....that is what the score is for. I've been LAS = 38.1 for 9 mo. now and I still haven't gotten the call. Does your tx team give you any indication of past wait times for certain scores? My team says once you hit 40, you should start preparing for a call.
Having said that, now that you mention children are involved, I can see why you are more hesitant to just being listed at this point. If you are still managing okay, I can fully understand why you would not want to rush into transplant, which as we know, has risky outcomes. This is a dilemma! Do you have a wife/girlfriend that has an opinion?
I can see why your doctor is concerned about back to back IV's. You don't want to become resistant to antibiotics, there are only limited drugs that they can treat with. Wondering, if you do develop resistance, could that affect your ability to be listed? Have you ever been tested for MAC? When I was waaaaay fatigued and useless a few years back, MAC tests came back positive (I've since treated it). I have had 2 adult CF docs, and each of them said regardless if I have fevers or dropping PFT's, that how I feel overall is also just as important to detect an exacerbation. A lot of times my PFT will be stable, but I will just "feel worse" for a week or two - and I just know it's time....I was taught not all symptoms need to be tangible or measurable. But then again, I wasn't asking for 5 IV's a year =). Have you ever considered a second opinion from another CF center/doctor?
It seems like you need to ask yourself what other limitations would you consider before you get listed (ie, once I'm on oxygen f/t, I will list....etc.). What is your threshold... Second, CF sneaks up on you, as most of us know, and what if you get an infection that really makes you sick and you're not listed - it's possible you may not get the chance to get new lungs. I know this is very morbid and hard to think about.
Believe me, there are days where I doubt my decision to be listed, like, "I feel really good today, would I be ready if they called me tomorrow?"....but I just put it out of my mind. I can't dwell on that or I would go crazy. I trust that I made an educated decision, supported by my family and I just have to accept the decision I made. It's really hard, but I literally focus only on the next minute of my life and enjoy that as much as possible.
I hope you can come to a resolution that will take away some of your stress. Again, if you feel like spilling your guts to someone who understands, I'd be willing.
I only grow aspergillus, so I guess my flare ups are contained. I mostly stay home and am a total frequent hand washer, so I tend not to pick up bugs anywhere...my husband hardly gets sick, and I have no kids to bring home infections =)
What transplant center are you attending? I appear VERY healthy..I look the same as my photo except I wear oxygen, so it is very deceiving! I did look like the healthiest person at my seminars, too, but a lot of ppl were old with COPD and they ARE going to look sick! However, the way I see it, the LAS really controls when your body is 'ready' to get new lungs. If all the tests get me to an LAS that makes it be my turn, then so be it....that is what the score is for. I've been LAS = 38.1 for 9 mo. now and I still haven't gotten the call. Does your tx team give you any indication of past wait times for certain scores? My team says once you hit 40, you should start preparing for a call.
Having said that, now that you mention children are involved, I can see why you are more hesitant to just being listed at this point. If you are still managing okay, I can fully understand why you would not want to rush into transplant, which as we know, has risky outcomes. This is a dilemma! Do you have a wife/girlfriend that has an opinion?
I can see why your doctor is concerned about back to back IV's. You don't want to become resistant to antibiotics, there are only limited drugs that they can treat with. Wondering, if you do develop resistance, could that affect your ability to be listed? Have you ever been tested for MAC? When I was waaaaay fatigued and useless a few years back, MAC tests came back positive (I've since treated it). I have had 2 adult CF docs, and each of them said regardless if I have fevers or dropping PFT's, that how I feel overall is also just as important to detect an exacerbation. A lot of times my PFT will be stable, but I will just "feel worse" for a week or two - and I just know it's time....I was taught not all symptoms need to be tangible or measurable. But then again, I wasn't asking for 5 IV's a year =). Have you ever considered a second opinion from another CF center/doctor?
It seems like you need to ask yourself what other limitations would you consider before you get listed (ie, once I'm on oxygen f/t, I will list....etc.). What is your threshold... Second, CF sneaks up on you, as most of us know, and what if you get an infection that really makes you sick and you're not listed - it's possible you may not get the chance to get new lungs. I know this is very morbid and hard to think about.
Believe me, there are days where I doubt my decision to be listed, like, "I feel really good today, would I be ready if they called me tomorrow?"....but I just put it out of my mind. I can't dwell on that or I would go crazy. I trust that I made an educated decision, supported by my family and I just have to accept the decision I made. It's really hard, but I literally focus only on the next minute of my life and enjoy that as much as possible.
I hope you can come to a resolution that will take away some of your stress. Again, if you feel like spilling your guts to someone who understands, I'd be willing.
Yes, I am on O2 full time - 5 liters at rest and 6-8 when exercising. It's pretty annoying b/c the concentrators for the portable oxygen only go up to 5 liters, so I can't really exercise outside of pulmonary rehab and take a lot of rests when walking around/grocery shopping/doing things on weekends. But, you get used to it.....everything is just a slight adjustment! So my doctor prefers that I am above 92%, but 90% seems to be the norm. I drop below 90 if I'm off oxygen for more than probably 2 minutes.
I only grow aspergillus, so I guess my flare ups are contained. I mostly stay home and am a total frequent hand washer, so I tend not to pick up bugs anywhere...my husband hardly gets sick, and I have no kids to bring home infections =)
What transplant center are you attending? I appear VERY healthy..I look the same as my photo except I wear oxygen, so it is very deceiving! I did look like the healthiest person at my seminars, too, but a lot of ppl were old with COPD and they ARE going to look sick! However, the way I see it, the LAS really controls when your body is 'ready' to get new lungs. If all the tests get me to an LAS that makes it be my turn, then so be it....that is what the score is for. I've been LAS = 38.1 for 9 mo. now and I still haven't gotten the call. Does your tx team give you any indication of past wait times for certain scores? My team says once you hit 40, you should start preparing for a call.
Having said that, now that you mention children are involved, I can see why you are more hesitant to just being listed at this point. If you are still managing okay, I can fully understand why you would not want to rush into transplant, which as we know, has risky outcomes. This is a dilemma! Do you have a wife/girlfriend that has an opinion?
I can see why your doctor is concerned about back to back IV's. You don't want to become resistant to antibiotics, there are only limited drugs that they can treat with. Wondering, if you do develop resistance, could that affect your ability to be listed? Have you ever been tested for MAC? When I was waaaaay fatigued and useless a few years back, MAC tests came back positive (I've since treated it). I have had 2 adult CF docs, and each of them said regardless if I have fevers or dropping PFT's, that how I feel overall is also just as important to detect an exacerbation. A lot of times my PFT will be stable, but I will just "feel worse" for a week or two - and I just know it's time....I was taught not all symptoms need to be tangible or measurable. But then again, I wasn't asking for 5 IV's a year =). Have you ever considered a second opinion from another CF center/doctor?
It seems like you need to ask yourself what other limitations would you consider before you get listed (ie, once I'm on oxygen f/t, I will list....etc.). What is your threshold... Second, CF sneaks up on you, as most of us know, and what if you get an infection that really makes you sick and you're not listed - it's possible you may not get the chance to get new lungs. I know this is very morbid and hard to think about.
Believe me, there are days where I doubt my decision to be listed, like, "I feel really good today, would I be ready if they called me tomorrow?"....but I just put it out of my mind. I can't dwell on that or I would go crazy. I trust that I made an educated decision, supported by my family and I just have to accept the decision I made. It's really hard, but I literally focus only on the next minute of my life and enjoy that as much as possible.
I hope you can come to a resolution that will take away some of your stress. Again, if you feel like spilling your guts to someone who understands, I'd be willing.
I only grow aspergillus, so I guess my flare ups are contained. I mostly stay home and am a total frequent hand washer, so I tend not to pick up bugs anywhere...my husband hardly gets sick, and I have no kids to bring home infections =)
What transplant center are you attending? I appear VERY healthy..I look the same as my photo except I wear oxygen, so it is very deceiving! I did look like the healthiest person at my seminars, too, but a lot of ppl were old with COPD and they ARE going to look sick! However, the way I see it, the LAS really controls when your body is 'ready' to get new lungs. If all the tests get me to an LAS that makes it be my turn, then so be it....that is what the score is for. I've been LAS = 38.1 for 9 mo. now and I still haven't gotten the call. Does your tx team give you any indication of past wait times for certain scores? My team says once you hit 40, you should start preparing for a call.
Having said that, now that you mention children are involved, I can see why you are more hesitant to just being listed at this point. If you are still managing okay, I can fully understand why you would not want to rush into transplant, which as we know, has risky outcomes. This is a dilemma! Do you have a wife/girlfriend that has an opinion?
I can see why your doctor is concerned about back to back IV's. You don't want to become resistant to antibiotics, there are only limited drugs that they can treat with. Wondering, if you do develop resistance, could that affect your ability to be listed? Have you ever been tested for MAC? When I was waaaaay fatigued and useless a few years back, MAC tests came back positive (I've since treated it). I have had 2 adult CF docs, and each of them said regardless if I have fevers or dropping PFT's, that how I feel overall is also just as important to detect an exacerbation. A lot of times my PFT will be stable, but I will just "feel worse" for a week or two - and I just know it's time....I was taught not all symptoms need to be tangible or measurable. But then again, I wasn't asking for 5 IV's a year =). Have you ever considered a second opinion from another CF center/doctor?
It seems like you need to ask yourself what other limitations would you consider before you get listed (ie, once I'm on oxygen f/t, I will list....etc.). What is your threshold... Second, CF sneaks up on you, as most of us know, and what if you get an infection that really makes you sick and you're not listed - it's possible you may not get the chance to get new lungs. I know this is very morbid and hard to think about.
Believe me, there are days where I doubt my decision to be listed, like, "I feel really good today, would I be ready if they called me tomorrow?"....but I just put it out of my mind. I can't dwell on that or I would go crazy. I trust that I made an educated decision, supported by my family and I just have to accept the decision I made. It's really hard, but I literally focus only on the next minute of my life and enjoy that as much as possible.
I hope you can come to a resolution that will take away some of your stress. Again, if you feel like spilling your guts to someone who understands, I'd be willing.
Yes, I am on O2 full time - 5 liters at rest and 6-8 when exercising. It's pretty annoying b/c the concentrators for the portable oxygen only go up to 5 liters, so I can't really exercise outside of pulmonary rehab and take a lot of rests when walking around/grocery shopping/doing things on weekends. But, you get used to it.....everything is just a slight adjustment! So my doctor prefers that I am above 92%, but 90% seems to be the norm. I drop below 90 if I'm off oxygen for more than probably 2 minutes.
<br />
<br />I only grow aspergillus, so I guess my flare ups are contained. I mostly stay home and am a total frequent hand washer, so I tend not to pick up bugs anywhere...my husband hardly gets sick, and I have no kids to bring home infections =)
<br />
<br />What transplant center are you attending? I appear VERY healthy..I look the same as my photo except I wear oxygen, so it is very deceiving! I did look like the healthiest person at my seminars, too, but a lot of ppl were old with COPD and they ARE going to look sick! However, the way I see it, the LAS really controls when your body is 'ready' to get new lungs. If all the tests get me to an LAS that makes it be my turn, then so be it....that is what the score is for. I've been LAS = 38.1 for 9 mo. now and I still haven't gotten the call. Does your tx team give you any indication of past wait times for certain scores? My team says once you hit 40, you should start preparing for a call.
<br />
<br />Having said that, now that you mention children are involved, I can see why you are more hesitant to just being listed at this point. If you are still managing okay, I can fully understand why you would not want to rush into transplant, which as we know, has risky outcomes. This is a dilemma! Do you have a wife/girlfriend that has an opinion?
<br />
<br />I can see why your doctor is concerned about back to back IV's. You don't want to become resistant to antibiotics, there are only limited drugs that they can treat with. Wondering, if you do develop resistance, could that affect your ability to be listed? Have you ever been tested for MAC? When I was waaaaay fatigued and useless a few years back, MAC tests came back positive (I've since treated it). I have had 2 adult CF docs, and each of them said regardless if I have fevers or dropping PFT's, that how I feel overall is also just as important to detect an exacerbation. A lot of times my PFT will be stable, but I will just "feel worse" for a week or two - and I just know it's time....I was taught not all symptoms need to be tangible or measurable. But then again, I wasn't asking for 5 IV's a year =). Have you ever considered a second opinion from another CF center/doctor?
<br />
<br />It seems like you need to ask yourself what other limitations would you consider before you get listed (ie, once I'm on oxygen f/t, I will list....etc.). What is your threshold... Second, CF sneaks up on you, as most of us know, and what if you get an infection that really makes you sick and you're not listed - it's possible you may not get the chance to get new lungs. I know this is very morbid and hard to think about.
<br />
<br />Believe me, there are days where I doubt my decision to be listed, like, "I feel really good today, would I be ready if they called me tomorrow?"....but I just put it out of my mind. I can't dwell on that or I would go crazy. I trust that I made an educated decision, supported by my family and I just have to accept the decision I made. It's really hard, but I literally focus only on the next minute of my life and enjoy that as much as possible.
<br />
<br />I hope you can come to a resolution that will take away some of your stress. Again, if you feel like spilling your guts to someone who understands, I'd be willing.
<br />
<br />I only grow aspergillus, so I guess my flare ups are contained. I mostly stay home and am a total frequent hand washer, so I tend not to pick up bugs anywhere...my husband hardly gets sick, and I have no kids to bring home infections =)
<br />
<br />What transplant center are you attending? I appear VERY healthy..I look the same as my photo except I wear oxygen, so it is very deceiving! I did look like the healthiest person at my seminars, too, but a lot of ppl were old with COPD and they ARE going to look sick! However, the way I see it, the LAS really controls when your body is 'ready' to get new lungs. If all the tests get me to an LAS that makes it be my turn, then so be it....that is what the score is for. I've been LAS = 38.1 for 9 mo. now and I still haven't gotten the call. Does your tx team give you any indication of past wait times for certain scores? My team says once you hit 40, you should start preparing for a call.
<br />
<br />Having said that, now that you mention children are involved, I can see why you are more hesitant to just being listed at this point. If you are still managing okay, I can fully understand why you would not want to rush into transplant, which as we know, has risky outcomes. This is a dilemma! Do you have a wife/girlfriend that has an opinion?
<br />
<br />I can see why your doctor is concerned about back to back IV's. You don't want to become resistant to antibiotics, there are only limited drugs that they can treat with. Wondering, if you do develop resistance, could that affect your ability to be listed? Have you ever been tested for MAC? When I was waaaaay fatigued and useless a few years back, MAC tests came back positive (I've since treated it). I have had 2 adult CF docs, and each of them said regardless if I have fevers or dropping PFT's, that how I feel overall is also just as important to detect an exacerbation. A lot of times my PFT will be stable, but I will just "feel worse" for a week or two - and I just know it's time....I was taught not all symptoms need to be tangible or measurable. But then again, I wasn't asking for 5 IV's a year =). Have you ever considered a second opinion from another CF center/doctor?
<br />
<br />It seems like you need to ask yourself what other limitations would you consider before you get listed (ie, once I'm on oxygen f/t, I will list....etc.). What is your threshold... Second, CF sneaks up on you, as most of us know, and what if you get an infection that really makes you sick and you're not listed - it's possible you may not get the chance to get new lungs. I know this is very morbid and hard to think about.
<br />
<br />Believe me, there are days where I doubt my decision to be listed, like, "I feel really good today, would I be ready if they called me tomorrow?"....but I just put it out of my mind. I can't dwell on that or I would go crazy. I trust that I made an educated decision, supported by my family and I just have to accept the decision I made. It's really hard, but I literally focus only on the next minute of my life and enjoy that as much as possible.
<br />
<br />I hope you can come to a resolution that will take away some of your stress. Again, if you feel like spilling your guts to someone who understands, I'd be willing.
Jason, right now my iv treatments lasts 1-3 weeks depending how soon I start after I start feeling bad. They don't really base it on my pft numbers anymore (which range 18-23) because at this point the little bit of difference is small enough to be within the computer margin of error. What we really watch for is weight loss, fatigue, fevers, increased cough and sputum, shortness of breath, weakness and inability to do easy daily tasks. But typically I am doing 2 weeks of ivs and then 2 weeks off. I'm at the point where I'm resistant to pretty much all oral antibiotics so I have no choice but ivs. I know they sometimes worry about doing them so frequently because of risk of cdiff and toxic effects to the kidneys. You know you're body best, if you feel the orals arent doing anything for you then push for a tune up. Also in reference to you're question about oxygen, I'm still on a pretty low level 2.5 liters, when I'm feeling really crappy I'll bump it up to 3. By overnight sleep test and 6 min walk I qualify for u2 24/7 , but for LAS scoring requirements I don't meet the level to say I require it at rest which I think is 90%, but the dumb thing is when they check that at my appointments they only have you sit there for a min or two on room air. If they watched longer than that they'd see that my sats drop lower. Needless to say the scoring for the list is very frustrating for me, I've been listed 10 months and my score is only decimal points higher than when I was listed, despite obviously feeling worse, increased ivs, etc.
Jason, right now my iv treatments lasts 1-3 weeks depending how soon I start after I start feeling bad. They don't really base it on my pft numbers anymore (which range 18-23) because at this point the little bit of difference is small enough to be within the computer margin of error. What we really watch for is weight loss, fatigue, fevers, increased cough and sputum, shortness of breath, weakness and inability to do easy daily tasks. But typically I am doing 2 weeks of ivs and then 2 weeks off. I'm at the point where I'm resistant to pretty much all oral antibiotics so I have no choice but ivs. I know they sometimes worry about doing them so frequently because of risk of cdiff and toxic effects to the kidneys. You know you're body best, if you feel the orals arent doing anything for you then push for a tune up. Also in reference to you're question about oxygen, I'm still on a pretty low level 2.5 liters, when I'm feeling really crappy I'll bump it up to 3. By overnight sleep test and 6 min walk I qualify for u2 24/7 , but for LAS scoring requirements I don't meet the level to say I require it at rest which I think is 90%, but the dumb thing is when they check that at my appointments they only have you sit there for a min or two on room air. If they watched longer than that they'd see that my sats drop lower. Needless to say the scoring for the list is very frustrating for me, I've been listed 10 months and my score is only decimal points higher than when I was listed, despite obviously feeling worse, increased ivs, etc.
Jason, right now my iv treatments lasts 1-3 weeks depending how soon I start after I start feeling bad. They don't really base it on my pft numbers anymore (which range 18-23) because at this point the little bit of difference is small enough to be within the computer margin of error. What we really watch for is weight loss, fatigue, fevers, increased cough and sputum, shortness of breath, weakness and inability to do easy daily tasks. But typically I am doing 2 weeks of ivs and then 2 weeks off. I'm at the point where I'm resistant to pretty much all oral antibiotics so I have no choice but ivs. I know they sometimes worry about doing them so frequently because of risk of cdiff and toxic effects to the kidneys. You know you're body best, if you feel the orals arent doing anything for you then push for a tune up. Also in reference to you're question about oxygen, I'm still on a pretty low level 2.5 liters, when I'm feeling really crappy I'll bump it up to 3. By overnight sleep test and 6 min walk I qualify for u2 24/7 , but for LAS scoring requirements I don't meet the level to say I require it at rest which I think is 90%, but the dumb thing is when they check that at my appointments they only have you sit there for a min or two on room air. If they watched longer than that they'd see that my sats drop lower. Needless to say the scoring for the list is very frustrating for me, I've been listed 10 months and my score is only decimal points higher than when I was listed, despite obviously feeling worse, increased ivs, etc.
markinohio
New member
I thought I would chime in on this forum because I am in a similiar situation. I am sick enough to have evaluated, but not sick enough to be listed quite yet. I use O2 24/7. My O2 sat without O2 is about 93-94% at rest, but drops to the 80's with activity and drops at night. I am in the hospital about 3 times per year. And, I don't look "sick" compared to others I've seen who are on or near the transplant state. Although I am not as active as I used to be, my quality of life is not horrible. I have a wife and two boys and would like to be around as long as possible to watch the kids grow. We've decided to wait a while longer and to get all I can out of my lungs before I get listed. I do have cepacia and that does not help with the odds of me living a long time with new lungs. I have about 50/50 chance of living past five years, but every case is different. So, I'll keep doing what I'm doing until it gets bad enough to need new lungs.
So to answer the original poster, my opinion would be to wait as long as possible if you're still able to function, but ther is no easy answer.
Mark
So to answer the original poster, my opinion would be to wait as long as possible if you're still able to function, but ther is no easy answer.
Mark
markinohio
New member
I thought I would chime in on this forum because I am in a similiar situation. I am sick enough to have evaluated, but not sick enough to be listed quite yet. I use O2 24/7. My O2 sat without O2 is about 93-94% at rest, but drops to the 80's with activity and drops at night. I am in the hospital about 3 times per year. And, I don't look "sick" compared to others I've seen who are on or near the transplant state. Although I am not as active as I used to be, my quality of life is not horrible. I have a wife and two boys and would like to be around as long as possible to watch the kids grow. We've decided to wait a while longer and to get all I can out of my lungs before I get listed. I do have cepacia and that does not help with the odds of me living a long time with new lungs. I have about 50/50 chance of living past five years, but every case is different. So, I'll keep doing what I'm doing until it gets bad enough to need new lungs.
So to answer the original poster, my opinion would be to wait as long as possible if you're still able to function, but ther is no easy answer.
Mark
So to answer the original poster, my opinion would be to wait as long as possible if you're still able to function, but ther is no easy answer.
Mark
markinohio
New member
I thought I would chime in on this forum because I am in a similiar situation. I am sick enough to have evaluated, but not sick enough to be listed quite yet. I use O2 24/7. My O2 sat without O2 is about 93-94% at rest, but drops to the 80's with activity and drops at night. I am in the hospital about 3 times per year. And, I don't look "sick" compared to others I've seen who are on or near the transplant state. Although I am not as active as I used to be, my quality of life is not horrible. I have a wife and two boys and would like to be around as long as possible to watch the kids grow. We've decided to wait a while longer and to get all I can out of my lungs before I get listed. I do have cepacia and that does not help with the odds of me living a long time with new lungs. I have about 50/50 chance of living past five years, but every case is different. So, I'll keep doing what I'm doing until it gets bad enough to need new lungs.
<br />So to answer the original poster, my opinion would be to wait as long as possible if you're still able to function, but ther is no easy answer.
<br />Mark
<br />So to answer the original poster, my opinion would be to wait as long as possible if you're still able to function, but ther is no easy answer.
<br />Mark
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.
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.