philosophy of care

CowTown · Jul 11, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: wanderlost

I am wondering how everyone opts to go about their Cf care. What I mean is, I am sure we all have a differetn philosophy by which we deal with and treat Cf. For example: do you trust your doctor inherently and do everything s/he suggests; are you aggressive or do you tend to wait things out; do you prefer to try natural remedies before going to meds; are you eager to try new things or do you stick with the tried and true, etc.?
</end quote></div>

I respect my doc's views on things when he seems very confident, although CF brings in new and different scenarios/issues so he isn't an A+ doc on all fronts (mycobacteria stuff for example). At the same time I always ask a lot of questions so I know what's going on and what to expect or look out for, etc. I do really appreciate his knowledge though and do respect what he thinks I need to do next.

I must say before my health decline to where it is now, I used to be VERY passive with my care and wanted to wait things out in hopes of not inflicting too many harsh meds when I didn't totally need them. I was much more conservative then with what I was willing to do when my health was 80% fev1 and above. I didn't want any meds to hurt what all seemed to be working fairly well.

Now.....at 38% I'm MUCH more aggressive. I feel like I have way more to gain from trying new things and trying those seriously harsh meds (and even loosing hearing, whatever) now b/c I need to do something. That's the new outlook once my health declined.

The viewpoint changes.

And yes, I'm all for trying natural remedies after I've done the research and feel interested enough to give something a go. I also always tell my doctor when I'm trying a new alternative med so they can have it in their charts -- just in case my body freaks out they will have everything on record. <img src="i/expressions/face-icon-small-smile.gif" border="0">

CowTown · Jul 11, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: wanderlost

I am wondering how everyone opts to go about their Cf care. What I mean is, I am sure we all have a differetn philosophy by which we deal with and treat Cf. For example: do you trust your doctor inherently and do everything s/he suggests; are you aggressive or do you tend to wait things out; do you prefer to try natural remedies before going to meds; are you eager to try new things or do you stick with the tried and true, etc.?
</end quote></div>

I respect my doc's views on things when he seems very confident, although CF brings in new and different scenarios/issues so he isn't an A+ doc on all fronts (mycobacteria stuff for example). At the same time I always ask a lot of questions so I know what's going on and what to expect or look out for, etc. I do really appreciate his knowledge though and do respect what he thinks I need to do next.

I must say before my health decline to where it is now, I used to be VERY passive with my care and wanted to wait things out in hopes of not inflicting too many harsh meds when I didn't totally need them. I was much more conservative then with what I was willing to do when my health was 80% fev1 and above. I didn't want any meds to hurt what all seemed to be working fairly well.

Now.....at 38% I'm MUCH more aggressive. I feel like I have way more to gain from trying new things and trying those seriously harsh meds (and even loosing hearing, whatever) now b/c I need to do something. That's the new outlook once my health declined.

The viewpoint changes.

And yes, I'm all for trying natural remedies after I've done the research and feel interested enough to give something a go. I also always tell my doctor when I'm trying a new alternative med so they can have it in their charts -- just in case my body freaks out they will have everything on record. <img src="i/expressions/face-icon-small-smile.gif" border="0">

CowTown · Jul 11, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: wanderlost

I am wondering how everyone opts to go about their Cf care. What I mean is, I am sure we all have a differetn philosophy by which we deal with and treat Cf. For example: do you trust your doctor inherently and do everything s/he suggests; are you aggressive or do you tend to wait things out; do you prefer to try natural remedies before going to meds; are you eager to try new things or do you stick with the tried and true, etc.?
</end quote></div>

I respect my doc's views on things when he seems very confident, although CF brings in new and different scenarios/issues so he isn't an A+ doc on all fronts (mycobacteria stuff for example). At the same time I always ask a lot of questions so I know what's going on and what to expect or look out for, etc. I do really appreciate his knowledge though and do respect what he thinks I need to do next.

I must say before my health decline to where it is now, I used to be VERY passive with my care and wanted to wait things out in hopes of not inflicting too many harsh meds when I didn't totally need them. I was much more conservative then with what I was willing to do when my health was 80% fev1 and above. I didn't want any meds to hurt what all seemed to be working fairly well.

Now.....at 38% I'm MUCH more aggressive. I feel like I have way more to gain from trying new things and trying those seriously harsh meds (and even loosing hearing, whatever) now b/c I need to do something. That's the new outlook once my health declined.

The viewpoint changes.

And yes, I'm all for trying natural remedies after I've done the research and feel interested enough to give something a go. I also always tell my doctor when I'm trying a new alternative med so they can have it in their charts -- just in case my body freaks out they will have everything on record. <img src="i/expressions/face-icon-small-smile.gif" border="0">

CowTown · Jul 11, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: wanderlost

I am wondering how everyone opts to go about their Cf care. What I mean is, I am sure we all have a differetn philosophy by which we deal with and treat Cf. For example: do you trust your doctor inherently and do everything s/he suggests; are you aggressive or do you tend to wait things out; do you prefer to try natural remedies before going to meds; are you eager to try new things or do you stick with the tried and true, etc.?
</end quote>

I respect my doc's views on things when he seems very confident, although CF brings in new and different scenarios/issues so he isn't an A+ doc on all fronts (mycobacteria stuff for example). At the same time I always ask a lot of questions so I know what's going on and what to expect or look out for, etc. I do really appreciate his knowledge though and do respect what he thinks I need to do next.

I must say before my health decline to where it is now, I used to be VERY passive with my care and wanted to wait things out in hopes of not inflicting too many harsh meds when I didn't totally need them. I was much more conservative then with what I was willing to do when my health was 80% fev1 and above. I didn't want any meds to hurt what all seemed to be working fairly well.

Now.....at 38% I'm MUCH more aggressive. I feel like I have way more to gain from trying new things and trying those seriously harsh meds (and even loosing hearing, whatever) now b/c I need to do something. That's the new outlook once my health declined.

The viewpoint changes.

And yes, I'm all for trying natural remedies after I've done the research and feel interested enough to give something a go. I also always tell my doctor when I'm trying a new alternative med so they can have it in their charts -- just in case my body freaks out they will have everything on record. <img src="i/expressions/face-icon-small-smile.gif" border="0">

CowTown · Jul 11, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: wanderlost
 
 I am wondering how everyone opts to go about their Cf care. What I mean is, I am sure we all have a differetn philosophy by which we deal with and treat Cf. For example: do you trust your doctor inherently and do everything s/he suggests; are you aggressive or do you tend to wait things out; do you prefer to try natural remedies before going to meds; are you eager to try new things or do you stick with the tried and true, etc.?
 </end quote>
 
 
 
 I respect my doc's views on things when he seems very confident, although CF brings in new and different scenarios/issues so he isn't an A+ doc on all fronts (mycobacteria stuff for example). At the same time I always ask a lot of questions so I know what's going on and what to expect or look out for, etc. I do really appreciate his knowledge though and do respect what he thinks I need to do next.
 
 I must say before my health decline to where it is now, I used to be VERY passive with my care and wanted to wait things out in hopes of not inflicting too many harsh meds when I didn't totally need them. I was much more conservative then with what I was willing to do when my health was 80% fev1 and above. I didn't want any meds to hurt what all seemed to be working fairly well.
 
 Now.....at 38% I'm MUCH more aggressive. I feel like I have way more to gain from trying new things and trying those seriously harsh meds (and even loosing hearing, whatever) now b/c I need to do something. That's the new outlook once my health declined.
 
 The viewpoint changes.
 
 
 And yes, I'm all for trying natural remedies after I've done the research and feel interested enough to give something a go. I also always tell my doctor when I'm trying a new alternative med so they can have it in their charts -- just in case my body freaks out they will have everything on record. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Diane · Jul 11, 2008

I tend to listen to what my Dr. says and ask questions and go from there. I tend to trust this Dr. i have now because he is way more aggressive in his treating cf than the other Dr. was.There are 3 Dr.s on the cf team at my hospital. I normally saw only the one, but that Dr. is on leave for a while so i have been seeing the one i didnt think i would like and guess what.... I LOVE HIM!! He is great at being proactive and aggressive.
In the past i used to wait things out because i had that luxury. I dont have that luxury anymore since i realized it is best to treat right away while my pfts are in the 40's. I dont want them to go any lower for as long as i can hold them here .
I do use some natural remedies ( GLutathione, L-Lysine ). There are benefits to using natural remedies as long as you find the right ones for you to use.
As for being up to trying new things, i am up for it depending on what it is. I have been dragging my feet about trying HS because i have hemoptysis probs and i am afraid it might trigger that, but someday i will try it at the lowest % possible. I did partake in the Aztreonam study, and before getting cepacia i used to do a lot of trials and studies. Now with cepacia we are usually excluded from all these things.
Although i hate change, in some areas it is good. Since you are wrestling with the idea of making changes you can always make a few changes and if they dont work you can always return to your regular ways of doing things. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Diane · Jul 11, 2008

I tend to listen to what my Dr. says and ask questions and go from there. I tend to trust this Dr. i have now because he is way more aggressive in his treating cf than the other Dr. was.There are 3 Dr.s on the cf team at my hospital. I normally saw only the one, but that Dr. is on leave for a while so i have been seeing the one i didnt think i would like and guess what.... I LOVE HIM!! He is great at being proactive and aggressive.
In the past i used to wait things out because i had that luxury. I dont have that luxury anymore since i realized it is best to treat right away while my pfts are in the 40's. I dont want them to go any lower for as long as i can hold them here .
I do use some natural remedies ( GLutathione, L-Lysine ). There are benefits to using natural remedies as long as you find the right ones for you to use.
As for being up to trying new things, i am up for it depending on what it is. I have been dragging my feet about trying HS because i have hemoptysis probs and i am afraid it might trigger that, but someday i will try it at the lowest % possible. I did partake in the Aztreonam study, and before getting cepacia i used to do a lot of trials and studies. Now with cepacia we are usually excluded from all these things.
Although i hate change, in some areas it is good. Since you are wrestling with the idea of making changes you can always make a few changes and if they dont work you can always return to your regular ways of doing things. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Diane · Jul 11, 2008

I tend to listen to what my Dr. says and ask questions and go from there. I tend to trust this Dr. i have now because he is way more aggressive in his treating cf than the other Dr. was.There are 3 Dr.s on the cf team at my hospital. I normally saw only the one, but that Dr. is on leave for a while so i have been seeing the one i didnt think i would like and guess what.... I LOVE HIM!! He is great at being proactive and aggressive.
In the past i used to wait things out because i had that luxury. I dont have that luxury anymore since i realized it is best to treat right away while my pfts are in the 40's. I dont want them to go any lower for as long as i can hold them here .
I do use some natural remedies ( GLutathione, L-Lysine ). There are benefits to using natural remedies as long as you find the right ones for you to use.
As for being up to trying new things, i am up for it depending on what it is. I have been dragging my feet about trying HS because i have hemoptysis probs and i am afraid it might trigger that, but someday i will try it at the lowest % possible. I did partake in the Aztreonam study, and before getting cepacia i used to do a lot of trials and studies. Now with cepacia we are usually excluded from all these things.
Although i hate change, in some areas it is good. Since you are wrestling with the idea of making changes you can always make a few changes and if they dont work you can always return to your regular ways of doing things. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Diane · Jul 11, 2008

I tend to listen to what my Dr. says and ask questions and go from there. I tend to trust this Dr. i have now because he is way more aggressive in his treating cf than the other Dr. was.There are 3 Dr.s on the cf team at my hospital. I normally saw only the one, but that Dr. is on leave for a while so i have been seeing the one i didnt think i would like and guess what.... I LOVE HIM!! He is great at being proactive and aggressive.
In the past i used to wait things out because i had that luxury. I dont have that luxury anymore since i realized it is best to treat right away while my pfts are in the 40's. I dont want them to go any lower for as long as i can hold them here .
I do use some natural remedies ( GLutathione, L-Lysine ). There are benefits to using natural remedies as long as you find the right ones for you to use.
As for being up to trying new things, i am up for it depending on what it is. I have been dragging my feet about trying HS because i have hemoptysis probs and i am afraid it might trigger that, but someday i will try it at the lowest % possible. I did partake in the Aztreonam study, and before getting cepacia i used to do a lot of trials and studies. Now with cepacia we are usually excluded from all these things.
Although i hate change, in some areas it is good. Since you are wrestling with the idea of making changes you can always make a few changes and if they dont work you can always return to your regular ways of doing things. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Diane · Jul 11, 2008

I tend to listen to what my Dr. says and ask questions and go from there. I tend to trust this Dr. i have now because he is way more aggressive in his treating cf than the other Dr. was.There are 3 Dr.s on the cf team at my hospital. I normally saw only the one, but that Dr. is on leave for a while so i have been seeing the one i didnt think i would like and guess what.... I LOVE HIM!! He is great at being proactive and aggressive.
 In the past i used to wait things out because i had that luxury. I dont have that luxury anymore since i realized it is best to treat right away while my pfts are in the 40's. I dont want them to go any lower for as long as i can hold them here .
 I do use some natural remedies ( GLutathione, L-Lysine ). There are benefits to using natural remedies as long as you find the right ones for you to use.
 As for being up to trying new things, i am up for it depending on what it is. I have been dragging my feet about trying HS because i have hemoptysis probs and i am afraid it might trigger that, but someday i will try it at the lowest % possible. I did partake in the Aztreonam study, and before getting cepacia i used to do a lot of trials and studies. Now with cepacia we are usually excluded from all these things.
 Although i hate change, in some areas it is good. Since you are wrestling with the idea of making changes you can always make a few changes and if they dont work you can always return to your regular ways of doing things. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ratatosk · Jul 11, 2008

We tend to be like ktsmom -- pretty much trust him, he's very agressive, proactive. He's also available. Knows his stuff. Keeps up to date on new treatments, etc. And while it didn't seem so at the time, we feel fortunate that DS had to be lifelighted to a hospital in the City when he was born, because we're not so sure the outcome would've been the same.

The local accreditted CF center just doesn't have the same level of service and we don't have the same rapport, same level of trust.

Ratatosk · Jul 11, 2008

We tend to be like ktsmom -- pretty much trust him, he's very agressive, proactive. He's also available. Knows his stuff. Keeps up to date on new treatments, etc. And while it didn't seem so at the time, we feel fortunate that DS had to be lifelighted to a hospital in the City when he was born, because we're not so sure the outcome would've been the same.

The local accreditted CF center just doesn't have the same level of service and we don't have the same rapport, same level of trust.

Ratatosk · Jul 11, 2008

We tend to be like ktsmom -- pretty much trust him, he's very agressive, proactive. He's also available. Knows his stuff. Keeps up to date on new treatments, etc. And while it didn't seem so at the time, we feel fortunate that DS had to be lifelighted to a hospital in the City when he was born, because we're not so sure the outcome would've been the same.

The local accreditted CF center just doesn't have the same level of service and we don't have the same rapport, same level of trust.

Ratatosk · Jul 11, 2008

We tend to be like ktsmom -- pretty much trust him, he's very agressive, proactive. He's also available. Knows his stuff. Keeps up to date on new treatments, etc. And while it didn't seem so at the time, we feel fortunate that DS had to be lifelighted to a hospital in the City when he was born, because we're not so sure the outcome would've been the same.

The local accreditted CF center just doesn't have the same level of service and we don't have the same rapport, same level of trust.

Ratatosk · Jul 11, 2008

We tend to be like ktsmom -- pretty much trust him, he's very agressive, proactive. He's also available. Knows his stuff. Keeps up to date on new treatments, etc. And while it didn't seem so at the time, we feel fortunate that DS had to be lifelighted to a hospital in the City when he was born, because we're not so sure the outcome would've been the same.
 
 The local accreditted CF center just doesn't have the same level of service and we don't have the same rapport, same level of trust.

Transplantmommy · Jul 11, 2008

When I was in Junior High, I had a hard time trusting my CF doc because my Mom and I didn't like him that much and didn't listen to anything that we said.

I was switched to the adult doc when I was 18 and I trust him whole heartedly. Of course I have questioned some of the things that he has wanted me to do, and in the end, I normally ended up doing what he wanted me to with the exception of one thing....the pregnancy. When he found out that I really was pregnant on August 1, 2005 he told me to terminate the pregnancy and gave me all of the reasons why...I was trying to get listed for double lung and liver transplants, my lung function was 40%, I had constant infections, and we had just found holes, aspergillus, and staph in my lungs in the end of 2004. I really listened to everything that he had to say, but in the end it was my choice to go against his advice and keep the baby. I felt WONDERFUL throughout the pregnancy (with the exception of a couple of infections) and you would never know that I was carrying a baby with only 40% lung function. The baby was born 7 weeks early but was absolutely healthy and so was I. Brady is now 2 1/2 and is doing great! This is one time where I am really happy that I didn't go along with what the doc wanted. He is in turn really happy for me too! I will go to see him for the first time in 6 months this week.

I sometimes would wait things out but if it came on quick and seemed to be getting worse, I would call the doc and see what he wanted to do, especially if I was coughing up blood. At first, I was in the hospital all the time and then he suggested a port and doing IV antibiotics at home and I jumped right on that train!! Anything to stay out of the hospital or make the stay shorter. I never tried any natural healing or remedies...I always jst did the antibiotics that the docs said.

I am definitely open to new studies, drugs, and techniques....anything that would make me live longer and possibly help with a cure one day. If I didn't like to try new things, I would not be here today. I had to put my life in the hands of the docs at the Cleveland Clinic who had never done double lung and liver transplant before. I agreed to do it and they agreed to list me. I had a very successful surgery on January 31, 2007....I was the first and I will not be their last as they are testing/listing more people now for double lung and liver.

Now that I have had the tranpslants, I won't be trying any of the new meds or anything that they come out with. My main concern now will be rejection as the CF DNA is not in these lungs. Of course there is still risk of infection and things, but the CF part of it all is not there. I also have to be very aggressive with things now...I cannot risk losing these new lungs and liver!!

Transplantmommy · Jul 11, 2008

When I was in Junior High, I had a hard time trusting my CF doc because my Mom and I didn't like him that much and didn't listen to anything that we said.

I was switched to the adult doc when I was 18 and I trust him whole heartedly. Of course I have questioned some of the things that he has wanted me to do, and in the end, I normally ended up doing what he wanted me to with the exception of one thing....the pregnancy. When he found out that I really was pregnant on August 1, 2005 he told me to terminate the pregnancy and gave me all of the reasons why...I was trying to get listed for double lung and liver transplants, my lung function was 40%, I had constant infections, and we had just found holes, aspergillus, and staph in my lungs in the end of 2004. I really listened to everything that he had to say, but in the end it was my choice to go against his advice and keep the baby. I felt WONDERFUL throughout the pregnancy (with the exception of a couple of infections) and you would never know that I was carrying a baby with only 40% lung function. The baby was born 7 weeks early but was absolutely healthy and so was I. Brady is now 2 1/2 and is doing great! This is one time where I am really happy that I didn't go along with what the doc wanted. He is in turn really happy for me too! I will go to see him for the first time in 6 months this week.

I sometimes would wait things out but if it came on quick and seemed to be getting worse, I would call the doc and see what he wanted to do, especially if I was coughing up blood. At first, I was in the hospital all the time and then he suggested a port and doing IV antibiotics at home and I jumped right on that train!! Anything to stay out of the hospital or make the stay shorter. I never tried any natural healing or remedies...I always jst did the antibiotics that the docs said.

I am definitely open to new studies, drugs, and techniques....anything that would make me live longer and possibly help with a cure one day. If I didn't like to try new things, I would not be here today. I had to put my life in the hands of the docs at the Cleveland Clinic who had never done double lung and liver transplant before. I agreed to do it and they agreed to list me. I had a very successful surgery on January 31, 2007....I was the first and I will not be their last as they are testing/listing more people now for double lung and liver.

Now that I have had the tranpslants, I won't be trying any of the new meds or anything that they come out with. My main concern now will be rejection as the CF DNA is not in these lungs. Of course there is still risk of infection and things, but the CF part of it all is not there. I also have to be very aggressive with things now...I cannot risk losing these new lungs and liver!!

Transplantmommy · Jul 11, 2008

When I was in Junior High, I had a hard time trusting my CF doc because my Mom and I didn't like him that much and didn't listen to anything that we said.

I was switched to the adult doc when I was 18 and I trust him whole heartedly. Of course I have questioned some of the things that he has wanted me to do, and in the end, I normally ended up doing what he wanted me to with the exception of one thing....the pregnancy. When he found out that I really was pregnant on August 1, 2005 he told me to terminate the pregnancy and gave me all of the reasons why...I was trying to get listed for double lung and liver transplants, my lung function was 40%, I had constant infections, and we had just found holes, aspergillus, and staph in my lungs in the end of 2004. I really listened to everything that he had to say, but in the end it was my choice to go against his advice and keep the baby. I felt WONDERFUL throughout the pregnancy (with the exception of a couple of infections) and you would never know that I was carrying a baby with only 40% lung function. The baby was born 7 weeks early but was absolutely healthy and so was I. Brady is now 2 1/2 and is doing great! This is one time where I am really happy that I didn't go along with what the doc wanted. He is in turn really happy for me too! I will go to see him for the first time in 6 months this week.

I sometimes would wait things out but if it came on quick and seemed to be getting worse, I would call the doc and see what he wanted to do, especially if I was coughing up blood. At first, I was in the hospital all the time and then he suggested a port and doing IV antibiotics at home and I jumped right on that train!! Anything to stay out of the hospital or make the stay shorter. I never tried any natural healing or remedies...I always jst did the antibiotics that the docs said.

I am definitely open to new studies, drugs, and techniques....anything that would make me live longer and possibly help with a cure one day. If I didn't like to try new things, I would not be here today. I had to put my life in the hands of the docs at the Cleveland Clinic who had never done double lung and liver transplant before. I agreed to do it and they agreed to list me. I had a very successful surgery on January 31, 2007....I was the first and I will not be their last as they are testing/listing more people now for double lung and liver.

Now that I have had the tranpslants, I won't be trying any of the new meds or anything that they come out with. My main concern now will be rejection as the CF DNA is not in these lungs. Of course there is still risk of infection and things, but the CF part of it all is not there. I also have to be very aggressive with things now...I cannot risk losing these new lungs and liver!!

Transplantmommy · Jul 11, 2008

When I was in Junior High, I had a hard time trusting my CF doc because my Mom and I didn't like him that much and didn't listen to anything that we said.

I was switched to the adult doc when I was 18 and I trust him whole heartedly. Of course I have questioned some of the things that he has wanted me to do, and in the end, I normally ended up doing what he wanted me to with the exception of one thing....the pregnancy. When he found out that I really was pregnant on August 1, 2005 he told me to terminate the pregnancy and gave me all of the reasons why...I was trying to get listed for double lung and liver transplants, my lung function was 40%, I had constant infections, and we had just found holes, aspergillus, and staph in my lungs in the end of 2004. I really listened to everything that he had to say, but in the end it was my choice to go against his advice and keep the baby. I felt WONDERFUL throughout the pregnancy (with the exception of a couple of infections) and you would never know that I was carrying a baby with only 40% lung function. The baby was born 7 weeks early but was absolutely healthy and so was I. Brady is now 2 1/2 and is doing great! This is one time where I am really happy that I didn't go along with what the doc wanted. He is in turn really happy for me too! I will go to see him for the first time in 6 months this week.

I sometimes would wait things out but if it came on quick and seemed to be getting worse, I would call the doc and see what he wanted to do, especially if I was coughing up blood. At first, I was in the hospital all the time and then he suggested a port and doing IV antibiotics at home and I jumped right on that train!! Anything to stay out of the hospital or make the stay shorter. I never tried any natural healing or remedies...I always jst did the antibiotics that the docs said.

I am definitely open to new studies, drugs, and techniques....anything that would make me live longer and possibly help with a cure one day. If I didn't like to try new things, I would not be here today. I had to put my life in the hands of the docs at the Cleveland Clinic who had never done double lung and liver transplant before. I agreed to do it and they agreed to list me. I had a very successful surgery on January 31, 2007....I was the first and I will not be their last as they are testing/listing more people now for double lung and liver.

Now that I have had the tranpslants, I won't be trying any of the new meds or anything that they come out with. My main concern now will be rejection as the CF DNA is not in these lungs. Of course there is still risk of infection and things, but the CF part of it all is not there. I also have to be very aggressive with things now...I cannot risk losing these new lungs and liver!!

Transplantmommy · Jul 11, 2008

When I was in Junior High, I had a hard time trusting my CF doc because my Mom and I didn't like him that much and didn't listen to anything that we said.
 
 I was switched to the adult doc when I was 18 and I trust him whole heartedly. Of course I have questioned some of the things that he has wanted me to do, and in the end, I normally ended up doing what he wanted me to with the exception of one thing....the pregnancy. When he found out that I really was pregnant on August 1, 2005 he told me to terminate the pregnancy and gave me all of the reasons why...I was trying to get listed for double lung and liver transplants, my lung function was 40%, I had constant infections, and we had just found holes, aspergillus, and staph in my lungs in the end of 2004. I really listened to everything that he had to say, but in the end it was my choice to go against his advice and keep the baby. I felt WONDERFUL throughout the pregnancy (with the exception of a couple of infections) and you would never know that I was carrying a baby with only 40% lung function. The baby was born 7 weeks early but was absolutely healthy and so was I. Brady is now 2 1/2 and is doing great! This is one time where I am really happy that I didn't go along with what the doc wanted. He is in turn really happy for me too! I will go to see him for the first time in 6 months this week.
 
 I sometimes would wait things out but if it came on quick and seemed to be getting worse, I would call the doc and see what he wanted to do, especially if I was coughing up blood. At first, I was in the hospital all the time and then he suggested a port and doing IV antibiotics at home and I jumped right on that train!! Anything to stay out of the hospital or make the stay shorter. I never tried any natural healing or remedies...I always jst did the antibiotics that the docs said.
 
 I am definitely open to new studies, drugs, and techniques....anything that would make me live longer and possibly help with a cure one day. If I didn't like to try new things, I would not be here today. I had to put my life in the hands of the docs at the Cleveland Clinic who had never done double lung and liver transplant before. I agreed to do it and they agreed to list me. I had a very successful surgery on January 31, 2007....I was the first and I will not be their last as they are testing/listing more people now for double lung and liver.
 
 Now that I have had the tranpslants, I won't be trying any of the new meds or anything that they come out with. My main concern now will be rejection as the CF DNA is not in these lungs. Of course there is still risk of infection and things, but the CF part of it all is not there. I also have to be very aggressive with things now...I cannot risk losing these new lungs and liver!!

philosophy of care

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