Question

eganhouselisa

New member
No, I still have my lungs!I guess my CF affected my liver more than my lungs. When I was little (birth to 12 or 13 or so) I got pneumonia a lot. Then they were ok until the liver transplant. I wouldn't say they are worse <em>because</em> of the transplant, it's just that I get a lot more recurrent infections now and require PICC lines than I did during my later teenage -late 20's.
Are they thinking of doing your lungs and liver at the same time?
 

eganhouselisa

New member
No, I still have my lungs!I guess my CF affected my liver more than my lungs. When I was little (birth to 12 or 13 or so) I got pneumonia a lot. Then they were ok until the liver transplant. I wouldn't say they are worse <em>because</em> of the transplant, it's just that I get a lot more recurrent infections now and require PICC lines than I did during my later teenage -late 20's.
Are they thinking of doing your lungs and liver at the same time?
 

randomgirl

New member
Ohh thats interesting, I haven't heard of a cf patient getting a liver without lungs. But that's good that you didn't need them. And yes, they are going to do my liver and lungs at the same time. They said that as my lung functions get worse, my liver will get worse also. Yep, so I'm just waiting for one big surgery.
 

randomgirl

New member
Ohh thats interesting, I haven't heard of a cf patient getting a liver without lungs. But that's good that you didn't need them. And yes, they are going to do my liver and lungs at the same time. They said that as my lung functions get worse, my liver will get worse also. Yep, so I'm just waiting for one big surgery.
 

coltsfan715

New member
I have a friend whose daughter (around age 7) had a liver transplant and saw marked improvement in lung function afterward. Their situation is a little different though. Her daughter has CF and Alpha1. The alpha 1 is what caused her to need a liver transplant.

Anyhow, in terms of lung transplant. I know you can't eat grapefruit and now I believe pomegranate has been added to that list as well. Staying away from dusty environments or construction sites. If you can't stay completely clear of them at least wear a mask.

I had a great post transplant run. I think the important thing is to break back into things slowly. I didn't really have any post transplant lung related problems until about 4 years post transplant. I had surgery for a non transplant related issue and got a mild case of Pneumonia shortly afterward. Most of my "issues" in the year or so post transplant involved stomach viruses or food poisoning. I also had a case of appendicitis, which was interesting.

I think it is important to heed the advice of your team and take their advice and incorporate it into your life. Meaning, listen to what they say, but if there is something you want to do and it doesn't quite fit into the guidelines they set for you then ask them about it. I wanted to go to Disney World about 4 months post transplant because I had a friend from another country coming to visit WDW. I asked and they told me no. I then explained that I had been pen pals with this person for years and had never met them and it was the only chance I would get to meet them, so I really wanted to go. My docs worked with me and told me what they wanted me to do, but that yes I could go if I followed a list of rules. I went, had a great time and didn't get sick at all. I think the important thing is to weigh the benefits vs. the possible cost to you the patient.

I eat pretty much whatever. I too have to take blood pressure medication (started having b.p. issues about 9 months post transplant). I haven't worn a mask since about 1 year post transplant unless I am at the hospital r docs office for appointments. After about 6 months I didn't have to wear one unless I was in a questionable situation, around someone who is sick, construction site or what not. I think the biggest for me is going out. It is easier here in FL because bars and restaurants don't allow smoking if they sell food, but I have to be careful when I plan to go out with friends. I don't just agree to going out, I have to ask where they want to go and make sure that the place doesn't allow smoking. There are small things that you will learn to be more aware of as time passes. I also think it is funny because people on the site get offended when people steer clear of them because of their cough, but I steer clear of people because of their cough too. Yes CF isn't contagious, but the bacteria is and I look at all people who cough as having bacteria. I can be in a department store and will hear someone cough or sneeze aisles away from me or around the corner in a different section of the store. I just zone in on that sound and make sure I stay away from wherever it came from. There are things like that, which you will start to become accustomed too.

I have also realized post transplant that each patient has their "hang up" for me I get nervous with being around people that are coughing and am obsessive about not sharing food with people. Other people I know don't like being around live plants because of the soil. Others don't think people should have animals, I personally have a dog I got a few years after my transplant.

Either way I am sure you will handle it just fine. Good luck

Lindsey
 

coltsfan715

New member
I have a friend whose daughter (around age 7) had a liver transplant and saw marked improvement in lung function afterward. Their situation is a little different though. Her daughter has CF and Alpha1. The alpha 1 is what caused her to need a liver transplant.

Anyhow, in terms of lung transplant. I know you can't eat grapefruit and now I believe pomegranate has been added to that list as well. Staying away from dusty environments or construction sites. If you can't stay completely clear of them at least wear a mask.

I had a great post transplant run. I think the important thing is to break back into things slowly. I didn't really have any post transplant lung related problems until about 4 years post transplant. I had surgery for a non transplant related issue and got a mild case of Pneumonia shortly afterward. Most of my "issues" in the year or so post transplant involved stomach viruses or food poisoning. I also had a case of appendicitis, which was interesting.

I think it is important to heed the advice of your team and take their advice and incorporate it into your life. Meaning, listen to what they say, but if there is something you want to do and it doesn't quite fit into the guidelines they set for you then ask them about it. I wanted to go to Disney World about 4 months post transplant because I had a friend from another country coming to visit WDW. I asked and they told me no. I then explained that I had been pen pals with this person for years and had never met them and it was the only chance I would get to meet them, so I really wanted to go. My docs worked with me and told me what they wanted me to do, but that yes I could go if I followed a list of rules. I went, had a great time and didn't get sick at all. I think the important thing is to weigh the benefits vs. the possible cost to you the patient.

I eat pretty much whatever. I too have to take blood pressure medication (started having b.p. issues about 9 months post transplant). I haven't worn a mask since about 1 year post transplant unless I am at the hospital r docs office for appointments. After about 6 months I didn't have to wear one unless I was in a questionable situation, around someone who is sick, construction site or what not. I think the biggest for me is going out. It is easier here in FL because bars and restaurants don't allow smoking if they sell food, but I have to be careful when I plan to go out with friends. I don't just agree to going out, I have to ask where they want to go and make sure that the place doesn't allow smoking. There are small things that you will learn to be more aware of as time passes. I also think it is funny because people on the site get offended when people steer clear of them because of their cough, but I steer clear of people because of their cough too. Yes CF isn't contagious, but the bacteria is and I look at all people who cough as having bacteria. I can be in a department store and will hear someone cough or sneeze aisles away from me or around the corner in a different section of the store. I just zone in on that sound and make sure I stay away from wherever it came from. There are things like that, which you will start to become accustomed too.

I have also realized post transplant that each patient has their "hang up" for me I get nervous with being around people that are coughing and am obsessive about not sharing food with people. Other people I know don't like being around live plants because of the soil. Others don't think people should have animals, I personally have a dog I got a few years after my transplant.

Either way I am sure you will handle it just fine. Good luck

Lindsey
 
Top