CF diet on new lungs

[alikey1]

Hey everyone,

Let me give some info about me my name is Ali and I'm a 29 male and had double lung transplant on Jan. 28, 2008 at UCSF in San Francisco. My older brother and I both have cystic Firbrosis but he past away when he was 20 in 1997. I start on the list about 4 years ago when my lung capacity went down to 20%. I was still able to work and care for my wife and two kids. In June 2007 my lung capacity came down to 8% and I went on full time oxygen and I couldn't work any more and all I did is just be stuck at home doing meds all day which I was use too. I worked out on the treadmill as much as I can which I think helped me alot even though I went very slow on it. I don't remember for some reason but my wife told me on January 21st this year 2008 my lungs were bleeding and I went to hospital and I had to go on life support and get on ecmo. My carbondyoxide was over 200% and the doctors did not know if they should do the surgery but I passed the test they gave me. Everone had UCSF said they had never seen a patient with carbondyoxide over 200% before??? I guess my lungs finally gave up and the person who donated their lungs save my family and I. They told be that I can write a letter in few months so I can give the donating family time to grieve. I want to thank them so much!!! Anyways enough about me, the question I wanted to ask everyone is what kind of diet to you eat. I try to eat very healty but I'm always wanting to know other cf patients that have been pretty healthy for a long time if its there diet?

Thank you very much for taking the time,

Ali Keyghobadi
29 CF male
Tracy Ca

 

[alikey1]

Hey everyone,

Let me give some info about me my name is Ali and I'm a 29 male and had double lung transplant on Jan. 28, 2008 at UCSF in San Francisco. My older brother and I both have cystic Firbrosis but he past away when he was 20 in 1997. I start on the list about 4 years ago when my lung capacity went down to 20%. I was still able to work and care for my wife and two kids. In June 2007 my lung capacity came down to 8% and I went on full time oxygen and I couldn't work any more and all I did is just be stuck at home doing meds all day which I was use too. I worked out on the treadmill as much as I can which I think helped me alot even though I went very slow on it. I don't remember for some reason but my wife told me on January 21st this year 2008 my lungs were bleeding and I went to hospital and I had to go on life support and get on ecmo. My carbondyoxide was over 200% and the doctors did not know if they should do the surgery but I passed the test they gave me. Everone had UCSF said they had never seen a patient with carbondyoxide over 200% before??? I guess my lungs finally gave up and the person who donated their lungs save my family and I. They told be that I can write a letter in few months so I can give the donating family time to grieve. I want to thank them so much!!! Anyways enough about me, the question I wanted to ask everyone is what kind of diet to you eat. I try to eat very healty but I'm always wanting to know other cf patients that have been pretty healthy for a long time if its there diet?

Thank you very much for taking the time,

Ali Keyghobadi
29 CF male
Tracy Ca

 

[alikey1]

Hey everyone,

Let me give some info about me my name is Ali and I'm a 29 male and had double lung transplant on Jan. 28, 2008 at UCSF in San Francisco. My older brother and I both have cystic Firbrosis but he past away when he was 20 in 1997. I start on the list about 4 years ago when my lung capacity went down to 20%. I was still able to work and care for my wife and two kids. In June 2007 my lung capacity came down to 8% and I went on full time oxygen and I couldn't work any more and all I did is just be stuck at home doing meds all day which I was use too. I worked out on the treadmill as much as I can which I think helped me alot even though I went very slow on it. I don't remember for some reason but my wife told me on January 21st this year 2008 my lungs were bleeding and I went to hospital and I had to go on life support and get on ecmo. My carbondyoxide was over 200% and the doctors did not know if they should do the surgery but I passed the test they gave me. Everone had UCSF said they had never seen a patient with carbondyoxide over 200% before??? I guess my lungs finally gave up and the person who donated their lungs save my family and I. They told be that I can write a letter in few months so I can give the donating family time to grieve. I want to thank them so much!!! Anyways enough about me, the question I wanted to ask everyone is what kind of diet to you eat. I try to eat very healty but I'm always wanting to know other cf patients that have been pretty healthy for a long time if its there diet?

Thank you very much for taking the time,

Ali Keyghobadi
29 CF male
Tracy Ca

 

[alikey1]

Hey everyone,

Let me give some info about me my name is Ali and I'm a 29 male and had double lung transplant on Jan. 28, 2008 at UCSF in San Francisco. My older brother and I both have cystic Firbrosis but he past away when he was 20 in 1997. I start on the list about 4 years ago when my lung capacity went down to 20%. I was still able to work and care for my wife and two kids. In June 2007 my lung capacity came down to 8% and I went on full time oxygen and I couldn't work any more and all I did is just be stuck at home doing meds all day which I was use too. I worked out on the treadmill as much as I can which I think helped me alot even though I went very slow on it. I don't remember for some reason but my wife told me on January 21st this year 2008 my lungs were bleeding and I went to hospital and I had to go on life support and get on ecmo. My carbondyoxide was over 200% and the doctors did not know if they should do the surgery but I passed the test they gave me. Everone had UCSF said they had never seen a patient with carbondyoxide over 200% before??? I guess my lungs finally gave up and the person who donated their lungs save my family and I. They told be that I can write a letter in few months so I can give the donating family time to grieve. I want to thank them so much!!! Anyways enough about me, the question I wanted to ask everyone is what kind of diet to you eat. I try to eat very healty but I'm always wanting to know other cf patients that have been pretty healthy for a long time if its there diet?

Thank you very much for taking the time,

Ali Keyghobadi
29 CF male
Tracy Ca

 

[alikey1]

Hey everyone,
<br />
<br />Let me give some info about me my name is Ali and I'm a 29 male and had double lung transplant on Jan. 28, 2008 at UCSF in San Francisco. My older brother and I both have cystic Firbrosis but he past away when he was 20 in 1997. I start on the list about 4 years ago when my lung capacity went down to 20%. I was still able to work and care for my wife and two kids. In June 2007 my lung capacity came down to 8% and I went on full time oxygen and I couldn't work any more and all I did is just be stuck at home doing meds all day which I was use too. I worked out on the treadmill as much as I can which I think helped me alot even though I went very slow on it. I don't remember for some reason but my wife told me on January 21st this year 2008 my lungs were bleeding and I went to hospital and I had to go on life support and get on ecmo. My carbondyoxide was over 200% and the doctors did not know if they should do the surgery but I passed the test they gave me. Everone had UCSF said they had never seen a patient with carbondyoxide over 200% before??? I guess my lungs finally gave up and the person who donated their lungs save my family and I. They told be that I can write a letter in few months so I can give the donating family time to grieve. I want to thank them so much!!! Anyways enough about me, the question I wanted to ask everyone is what kind of diet to you eat. I try to eat very healty but I'm always wanting to know other cf patients that have been pretty healthy for a long time if its there diet?
<br />
<br />Thank you very much for taking the time,
<br />
<br />Ali Keyghobadi
<br />29 CF male
<br />Tracy Ca
<br />

 

[coltsfan715]

I will be honest and say that I haven't changed my diet too much other than eating out. I will eat out occasionally but only at a handful of places and have been steering clear of fast food. I eat alot of pastas, soups, veggies, fruits and so on. I also found that especially shortly after transplant drinking alot of water or juices... i.e NOT sodas ... helped a lot. I had my transplant 10 months ago today and have done great so far - no issues to speak of in regards to my lungs.

I am so glad that you were able to get this new chance and I hope that your recovery continues to progress in a positive way.

The only thing that I have a hard time with now post transplant is fighting the craving for sweets. I NEVER had a thing for sweets .. like chocolates and such ... pre transplant but now I do all the time. I just have to ignore it mostly.

Take Care,
Linds

 

[coltsfan715]

I will be honest and say that I haven't changed my diet too much other than eating out. I will eat out occasionally but only at a handful of places and have been steering clear of fast food. I eat alot of pastas, soups, veggies, fruits and so on. I also found that especially shortly after transplant drinking alot of water or juices... i.e NOT sodas ... helped a lot. I had my transplant 10 months ago today and have done great so far - no issues to speak of in regards to my lungs.

I am so glad that you were able to get this new chance and I hope that your recovery continues to progress in a positive way.

The only thing that I have a hard time with now post transplant is fighting the craving for sweets. I NEVER had a thing for sweets .. like chocolates and such ... pre transplant but now I do all the time. I just have to ignore it mostly.

Take Care,
Linds

 

[coltsfan715]

I will be honest and say that I haven't changed my diet too much other than eating out. I will eat out occasionally but only at a handful of places and have been steering clear of fast food. I eat alot of pastas, soups, veggies, fruits and so on. I also found that especially shortly after transplant drinking alot of water or juices... i.e NOT sodas ... helped a lot. I had my transplant 10 months ago today and have done great so far - no issues to speak of in regards to my lungs.

I am so glad that you were able to get this new chance and I hope that your recovery continues to progress in a positive way.

The only thing that I have a hard time with now post transplant is fighting the craving for sweets. I NEVER had a thing for sweets .. like chocolates and such ... pre transplant but now I do all the time. I just have to ignore it mostly.

Take Care,
Linds

 

[coltsfan715]

I will be honest and say that I haven't changed my diet too much other than eating out. I will eat out occasionally but only at a handful of places and have been steering clear of fast food. I eat alot of pastas, soups, veggies, fruits and so on. I also found that especially shortly after transplant drinking alot of water or juices... i.e NOT sodas ... helped a lot. I had my transplant 10 months ago today and have done great so far - no issues to speak of in regards to my lungs.

I am so glad that you were able to get this new chance and I hope that your recovery continues to progress in a positive way.

The only thing that I have a hard time with now post transplant is fighting the craving for sweets. I NEVER had a thing for sweets .. like chocolates and such ... pre transplant but now I do all the time. I just have to ignore it mostly.

Take Care,
Linds

 

[coltsfan715]

I will be honest and say that I haven't changed my diet too much other than eating out. I will eat out occasionally but only at a handful of places and have been steering clear of fast food. I eat alot of pastas, soups, veggies, fruits and so on. I also found that especially shortly after transplant drinking alot of water or juices... i.e NOT sodas ... helped a lot. I had my transplant 10 months ago today and have done great so far - no issues to speak of in regards to my lungs.
<br />
<br />I am so glad that you were able to get this new chance and I hope that your recovery continues to progress in a positive way.
<br />
<br />The only thing that I have a hard time with now post transplant is fighting the craving for sweets. I NEVER had a thing for sweets .. like chocolates and such ... pre transplant but now I do all the time. I just have to ignore it mostly.
<br />
<br />Take Care,
<br />Linds

 

[alikey1]

Hey Linds,

Thank you so much for the reply. I know what you mean about the sweets. The meds I'm on make my hands shake very badly and I have to always check my suger now which goes up easy. The Dr. said it should go away as soon as they lower my doses. I don't eat junk food or fast food too but I read alot on organic foods but since our health is mostly about eating and getting the calories I'm kind of scared to try. I wanted to see what other CF'ers ate??? I'm glad you are doing great!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ali K
29 CF male
Tracy Ca

 

[alikey1]

Hey Linds,

Thank you so much for the reply. I know what you mean about the sweets. The meds I'm on make my hands shake very badly and I have to always check my suger now which goes up easy. The Dr. said it should go away as soon as they lower my doses. I don't eat junk food or fast food too but I read alot on organic foods but since our health is mostly about eating and getting the calories I'm kind of scared to try. I wanted to see what other CF'ers ate??? I'm glad you are doing great!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ali K
29 CF male
Tracy Ca

 

[alikey1]

Hey Linds,

Thank you so much for the reply. I know what you mean about the sweets. The meds I'm on make my hands shake very badly and I have to always check my suger now which goes up easy. The Dr. said it should go away as soon as they lower my doses. I don't eat junk food or fast food too but I read alot on organic foods but since our health is mostly about eating and getting the calories I'm kind of scared to try. I wanted to see what other CF'ers ate??? I'm glad you are doing great!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ali K
29 CF male
Tracy Ca

 

[alikey1]

Hey Linds,

Thank you so much for the reply. I know what you mean about the sweets. The meds I'm on make my hands shake very badly and I have to always check my suger now which goes up easy. The Dr. said it should go away as soon as they lower my doses. I don't eat junk food or fast food too but I read alot on organic foods but since our health is mostly about eating and getting the calories I'm kind of scared to try. I wanted to see what other CF'ers ate??? I'm glad you are doing great!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ali K
29 CF male
Tracy Ca

 

[alikey1]

Hey Linds,
<br />
<br />Thank you so much for the reply. I know what you mean about the sweets. The meds I'm on make my hands shake very badly and I have to always check my suger now which goes up easy. The Dr. said it should go away as soon as they lower my doses. I don't eat junk food or fast food too but I read alot on organic foods but since our health is mostly about eating and getting the calories I'm kind of scared to try. I wanted to see what other CF'ers ate??? I'm glad you are doing great!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Ali K
<br />29 CF male
<br />Tracy Ca
<br />

 

[coltsfan715]

Hey Ali,

I just wanted to add I think natural foods are a great thing and honestly have wanted to try them myself. I will most likely start trying them more when I am out on my own with my fiance. Right now it is hard since I am still with my parents and my step brother - getting them to agree to natural herbal stuff isn't so easy.

I think whole grain foods are great .. like whole grain pastas. Those I have tried and they are pretty darn good in flavor.

Also like I said Fruits and Veggies and veggie dip as well. I switched up my snacks after talking to my doc cause they were afraid I was gaining to much weight too quickly. I had difficulty gaining the weight until about 3 months post then I put on about 20 lbs in 3 months. The doc told me I wasn't overweight but he wanted me to watch what I was eating so instead of cookies and milk I switched to oranges or apples or veggies (carrots and celery) and a ranch dip. I would sit and literally put down a whole package of celery and/or a whole bag of carrots. I can still do that as well as put away a few cucumbers if they are available. They are good too cause they are pretty easy on your blood sugar and they aren't so fatty like cookies.

I started doing that at about 6 months post and have managed to keep my weight stable - some days I top out at 128 but most days I am around 125 which is where I need to be.

I think it is great that you are looking into diet changes. I think the more natural things too will help with the function of your other organs ... I think my drinking a ton of water in the first months after transplant is what has helped my kidneys and liver functions to maintain at perfect levels even with all the meds ... I am still taking ALL the antivirals, antifungals and so on not to mention all the other non transplant related stuff I had to and have to take.

Another place you may want to go that may be beneficial in regards to your dietary questions is this site below.

WWW.TransplantBuddies.ORG

It is actually run by a fellow CFer from this board named Risa. She is amazing. She helped me through my pre and post transplant issues and she has a TON of useful information about herbal/natural foods and alternative therapies for things. She as well as her site are a wonderful resource.

Best of Luck,
Lindsey

 

[coltsfan715]

Hey Ali,

I just wanted to add I think natural foods are a great thing and honestly have wanted to try them myself. I will most likely start trying them more when I am out on my own with my fiance. Right now it is hard since I am still with my parents and my step brother - getting them to agree to natural herbal stuff isn't so easy.

I think whole grain foods are great .. like whole grain pastas. Those I have tried and they are pretty darn good in flavor.

Also like I said Fruits and Veggies and veggie dip as well. I switched up my snacks after talking to my doc cause they were afraid I was gaining to much weight too quickly. I had difficulty gaining the weight until about 3 months post then I put on about 20 lbs in 3 months. The doc told me I wasn't overweight but he wanted me to watch what I was eating so instead of cookies and milk I switched to oranges or apples or veggies (carrots and celery) and a ranch dip. I would sit and literally put down a whole package of celery and/or a whole bag of carrots. I can still do that as well as put away a few cucumbers if they are available. They are good too cause they are pretty easy on your blood sugar and they aren't so fatty like cookies.

I started doing that at about 6 months post and have managed to keep my weight stable - some days I top out at 128 but most days I am around 125 which is where I need to be.

I think it is great that you are looking into diet changes. I think the more natural things too will help with the function of your other organs ... I think my drinking a ton of water in the first months after transplant is what has helped my kidneys and liver functions to maintain at perfect levels even with all the meds ... I am still taking ALL the antivirals, antifungals and so on not to mention all the other non transplant related stuff I had to and have to take.

Another place you may want to go that may be beneficial in regards to your dietary questions is this site below.

WWW.TransplantBuddies.ORG

It is actually run by a fellow CFer from this board named Risa. She is amazing. She helped me through my pre and post transplant issues and she has a TON of useful information about herbal/natural foods and alternative therapies for things. She as well as her site are a wonderful resource.

Best of Luck,
Lindsey

 

[coltsfan715]

Hey Ali,

I just wanted to add I think natural foods are a great thing and honestly have wanted to try them myself. I will most likely start trying them more when I am out on my own with my fiance. Right now it is hard since I am still with my parents and my step brother - getting them to agree to natural herbal stuff isn't so easy.

I think whole grain foods are great .. like whole grain pastas. Those I have tried and they are pretty darn good in flavor.

Also like I said Fruits and Veggies and veggie dip as well. I switched up my snacks after talking to my doc cause they were afraid I was gaining to much weight too quickly. I had difficulty gaining the weight until about 3 months post then I put on about 20 lbs in 3 months. The doc told me I wasn't overweight but he wanted me to watch what I was eating so instead of cookies and milk I switched to oranges or apples or veggies (carrots and celery) and a ranch dip. I would sit and literally put down a whole package of celery and/or a whole bag of carrots. I can still do that as well as put away a few cucumbers if they are available. They are good too cause they are pretty easy on your blood sugar and they aren't so fatty like cookies.

I started doing that at about 6 months post and have managed to keep my weight stable - some days I top out at 128 but most days I am around 125 which is where I need to be.

I think it is great that you are looking into diet changes. I think the more natural things too will help with the function of your other organs ... I think my drinking a ton of water in the first months after transplant is what has helped my kidneys and liver functions to maintain at perfect levels even with all the meds ... I am still taking ALL the antivirals, antifungals and so on not to mention all the other non transplant related stuff I had to and have to take.

Another place you may want to go that may be beneficial in regards to your dietary questions is this site below.

WWW.TransplantBuddies.ORG

It is actually run by a fellow CFer from this board named Risa. She is amazing. She helped me through my pre and post transplant issues and she has a TON of useful information about herbal/natural foods and alternative therapies for things. She as well as her site are a wonderful resource.

Best of Luck,
Lindsey

 

[coltsfan715]

Hey Ali,

I just wanted to add I think natural foods are a great thing and honestly have wanted to try them myself. I will most likely start trying them more when I am out on my own with my fiance. Right now it is hard since I am still with my parents and my step brother - getting them to agree to natural herbal stuff isn't so easy.

I think whole grain foods are great .. like whole grain pastas. Those I have tried and they are pretty darn good in flavor.

Also like I said Fruits and Veggies and veggie dip as well. I switched up my snacks after talking to my doc cause they were afraid I was gaining to much weight too quickly. I had difficulty gaining the weight until about 3 months post then I put on about 20 lbs in 3 months. The doc told me I wasn't overweight but he wanted me to watch what I was eating so instead of cookies and milk I switched to oranges or apples or veggies (carrots and celery) and a ranch dip. I would sit and literally put down a whole package of celery and/or a whole bag of carrots. I can still do that as well as put away a few cucumbers if they are available. They are good too cause they are pretty easy on your blood sugar and they aren't so fatty like cookies.

I started doing that at about 6 months post and have managed to keep my weight stable - some days I top out at 128 but most days I am around 125 which is where I need to be.

I think it is great that you are looking into diet changes. I think the more natural things too will help with the function of your other organs ... I think my drinking a ton of water in the first months after transplant is what has helped my kidneys and liver functions to maintain at perfect levels even with all the meds ... I am still taking ALL the antivirals, antifungals and so on not to mention all the other non transplant related stuff I had to and have to take.

Another place you may want to go that may be beneficial in regards to your dietary questions is this site below.

WWW.TransplantBuddies.ORG

It is actually run by a fellow CFer from this board named Risa. She is amazing. She helped me through my pre and post transplant issues and she has a TON of useful information about herbal/natural foods and alternative therapies for things. She as well as her site are a wonderful resource.

Best of Luck,
Lindsey

 

[coltsfan715]

Hey Ali,
<br />
<br />I just wanted to add I think natural foods are a great thing and honestly have wanted to try them myself. I will most likely start trying them more when I am out on my own with my fiance. Right now it is hard since I am still with my parents and my step brother - getting them to agree to natural herbal stuff isn't so easy.
<br />
<br />I think whole grain foods are great .. like whole grain pastas. Those I have tried and they are pretty darn good in flavor.
<br />
<br />Also like I said Fruits and Veggies and veggie dip as well. I switched up my snacks after talking to my doc cause they were afraid I was gaining to much weight too quickly. I had difficulty gaining the weight until about 3 months post then I put on about 20 lbs in 3 months. The doc told me I wasn't overweight but he wanted me to watch what I was eating so instead of cookies and milk I switched to oranges or apples or veggies (carrots and celery) and a ranch dip. I would sit and literally put down a whole package of celery and/or a whole bag of carrots. I can still do that as well as put away a few cucumbers if they are available. They are good too cause they are pretty easy on your blood sugar and they aren't so fatty like cookies.
<br />
<br />I started doing that at about 6 months post and have managed to keep my weight stable - some days I top out at 128 but most days I am around 125 which is where I need to be.
<br />
<br />I think it is great that you are looking into diet changes. I think the more natural things too will help with the function of your other organs ... I think my drinking a ton of water in the first months after transplant is what has helped my kidneys and liver functions to maintain at perfect levels even with all the meds ... I am still taking ALL the antivirals, antifungals and so on not to mention all the other non transplant related stuff I had to and have to take.
<br />
<br />Another place you may want to go that may be beneficial in regards to your dietary questions is this site below.
<br />
<br />WWW.TransplantBuddies.ORG
<br />
<br />It is actually run by a fellow CFer from this board named Risa. She is amazing. She helped me through my pre and post transplant issues and she has a TON of useful information about herbal/natural foods and alternative therapies for things. She as well as her site are a wonderful resource.
<br />
<br />Best of Luck,
<br />Lindsey
<br />
<br />