post transplant lifestyle

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Smile769

New member
I'm going to be listed soon (hopefully) and I feel like I have been getting some mixed information about treatments after transplant. Sometimes they say I will still do them and other times they say only initially. Did anyone or does anyone still do their breathing treatments and use this vest after transplant?
Also I have only read about some of the food restrictions..what are some of them? Will I have to drastically change my diet?
 
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Smile769

New member
I'm going to be listed soon (hopefully) and I feel like I have been getting some mixed information about treatments after transplant. Sometimes they say I will still do them and other times they say only initially. Did anyone or does anyone still do their breathing treatments and use this vest after transplant?
Also I have only read about some of the food restrictions..what are some of them? Will I have to drastically change my diet?
 
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shinkdew

New member
I still do Cayston and Tobi, those are the only breathing treatments I do, no vest. Eventually, I'll only be doing one of them instead of both. As far as food restrictions, the only things I can't eat are grapefruit, raw meat and fish, buffets and most fast food. I didn't eat any of them before tx so it wasn't a big deal. The only real problem I've had is with portion control, I was so used to eating 3,500-4,000 calories a day that eating a normal diet took a little getting used too.
 
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shinkdew

New member
I still do Cayston and Tobi, those are the only breathing treatments I do, no vest. Eventually, I'll only be doing one of them instead of both. As far as food restrictions, the only things I can't eat are grapefruit, raw meat and fish, buffets and most fast food. I didn't eat any of them before tx so it wasn't a big deal. The only real problem I've had is with portion control, I was so used to eating 3,500-4,000 calories a day that eating a normal diet took a little getting used too.
 
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Smile769

New member
Yeah they said I'll probably have to still use Cayston or Tobi. Did you ever have to do any other treatment..xopenex? pulmozyme? even the first few months or when you got sick after transplant? How come you can't eat fish or fast food...why do you take in less calories? Sorry Im like bombarding you with questions.
 
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Smile769

New member
Yeah they said I'll probably have to still use Cayston or Tobi. Did you ever have to do any other treatment..xopenex? pulmozyme? even the first few months or when you got sick after transplant? How come you can't eat fish or fast food...why do you take in less calories? Sorry Im like bombarding you with questions.
 
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summer732

New member
I have tendency to get some mucous plugs sometimes, so I would say I do Albuterol and Hypertonic saline maybe a maximum of 3 x a week. And that is only if I feel like I need just a little extra moisture to lubricate my airways.

I don't eat raw fish or meat either. I do eat sushi as long as it is a cooked roll (shrimp tempura roll, california roll, etc. Don't take my sushi away!). No sashimi though. I've never heard about the restriction on fast food, but I'm assuming this has to do with the sodium in fast food. I can't have grapefruit either.

Other than that, I really eat whatever I want.
 
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summer732

New member
I have tendency to get some mucous plugs sometimes, so I would say I do Albuterol and Hypertonic saline maybe a maximum of 3 x a week. And that is only if I feel like I need just a little extra moisture to lubricate my airways.

I don't eat raw fish or meat either. I do eat sushi as long as it is a cooked roll (shrimp tempura roll, california roll, etc. Don't take my sushi away!). No sashimi though. I've never heard about the restriction on fast food, but I'm assuming this has to do with the sodium in fast food. I can't have grapefruit either.

Other than that, I really eat whatever I want.
 
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Tisha

New member
I believed the reason to our high-calory diet was the malabsorption. Then my lung therapist said it was because of the recurrent infections, that we needed so many calories. That might be confirmed by shinkdew's comment about reducing calories. Good to know, when improving in health - we don't want to become obese! Hahaha!
 
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Tisha

New member
I believed the reason to our high-calory diet was the malabsorption. Then my lung therapist said it was because of the recurrent infections, that we needed so many calories. That might be confirmed by shinkdew's comment about reducing calories. Good to know, when improving in health - we don't want to become obese! Hahaha!
 
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