Clear Lungs, Fatty Liver

6

65rosessamurai

Guest
Hello Everyone, newcomers and "seasoned" members.

65ROSESSAMURAI is back....

And I'm currently being poked, probed and even shaken (not stirred) while they are looking at my liver. The numbers were higher than two years ago, and I thought my lack of energy was due to a lung infection, but the lungs haven't changed much in two years.

So out of curiosity (and more info for me), although it is unusual to have liver issues at this age (and not sooner), has anyone else had liver issues, and what kind of things did you do/change to improve the situation?
 
R

Ratatosk

Administrator
Staff member
DS had high liver levels when he was a baby and was put on Actigall (urisidoil) or bile salts. Also can't remember... Do you still have your gall bladder?
 
6

65rosessamurai

Guest
Yep, still got it, and was told it was "dormant" but no need for surgery at this moment, according to the Ultrasound Tech.
 
P

Printer

Active member
Before I was dx with CF, I tested positive for sorosis (sp) of the liver and was accused of being an alcholic. Liver damage in CF patients can be caused by mucus just as pancreatitis and CFRD are. If you can "control" mucus with Toby, Pulmizyme or Sailine the liver damage will self correct.

Bill
 
6

65rosessamurai

Guest
I've been using NAC for nearly 5 years, but I don't think its related (good or bad)

my understanding with Pulmozyme is that it is for a specific dna, and I've never been tested for that.
 
R

Ratatosk

Administrator
Staff member
Pulmozyme isn't for a specific DNA. It's used to thin mucus -- product literature describes it acting like little scissors to chop up the DNA in the mucus...?; however, it's a VERY spendy drug, so not sure you'd be able to get it in Japan. Might be able to get mucomyst for inhalation and orally.
 
B

beleache

New member
Hey Fred. I am also on Urisodiol, due to having sludge in my liver lol ... Glad to hear your lungs are behaving ! :) joni
 
6

65rosessamurai

Guest
Pulmozyme was actually offered to me when I visited the CF doc last month...said they just got the drug imported a few months ago. Not sure if I wanna try it, since there were a few warnings written on it, but I can check to see how it affects the liver, hoping the doc I see tomorrow actually knows (This one isn't a CF doc).
 
R

Ratatosk

Administrator
Staff member
DS has been on pulmozyme since he was 2.5 years old and hasn't had any issues. It's inhaled. DS nebs it before bed once a day.
 
L

Lena Bean

New member
I've been on pulmozyme for as long as I can remember, at least 17 years, maybe longer? I don't believe it helps the liver. When my doctor told me I have a fatty liver, I was basically told that ursodiol would do for my liver what pulmozyme did for my lungs.
 
B

bcl0328

New member
Can anyone explain this?

In addition to minor side effects and the risk of interactions, Pulmozyme has the potential to cause serious medical complications. In some cases, Pulmozyme has been linked to cardiovascular and respiratory problems, including heart failure, pneumonia and respiratory failure. Pulmozyme also increases blood sugar levels, triggering the development of Type 2 diabetes in patients at risk for the disease. Inhalant treatments of Pulmozyme sometimes result in damage to your organs, including the gall bladder, liver and pancreas. It also contributes to the formation of blockages in the intestines.
 
R

Ratatosk

Administrator
Staff member
bcl0328 said:
Can anyone explain this?

In addition to minor side effects and the risk of interactions, Pulmozyme has the potential to cause serious medical complications. In some cases, Pulmozyme has been linked to cardiovascular and respiratory problems, including heart failure, pneumonia and respiratory failure. Pulmozyme also increases blood sugar levels, triggering the development of Type 2 diabetes in patients at risk for the disease. Inhalant treatments of Pulmozyme sometimes result in damage to your organs, including the gall bladder, liver and pancreas. It also contributes to the formation of blockages in the intestines.
Click to expand...

Huh? Never heard that before. DS has been on it since age 2 1/2 with no issues. I do know the product info warns against using if you're allergic to hamster ovaries. :)
 
6

65rosessamurai

Guest
Ratatosk said:
Huh? Never heard that before. DS has been on it since age 2 1/2 with no issues. I do know the product info warns against using if you're allergic to hamster ovaries. :)
Click to expand...
I also am curious as to the source. This was nothing i had come across.

In regards to the NAC, I doubt its Pharma NAC, unless that is the one being imported and using a different label. I may be getting mine through Europe, but would have to do research on the specifics. Regardless, I've been on NAC over two years, but my liver numbers had increased over the past year, maybe within a two-year period.


My lifestyle had changed drastically, my physical activity has decreased due to work, lack of energy (of course), lifestyle and old injuries prohibiting me from continuing the physical activity I used to do.

After seeing three doctors, the conclusion was basically there is no medication to help with the fatty liver (which would mean the medication is not available in Japan), but that the increase in physical activity may improve the situation by cutting down a bit on weight.

So, day five of doing "Wi Game" training (cheap, convenient)....
 
D

Debra

New member
My daughter is 19 has excellent lung function but is experiencing liver disease. She has cirrhosis with portal hypertension. She is on the ursidol which helps clear the sludge but that does not help the portal hypertension. As I have read in the other posts, yes there are side effects to certain CF medications but you need to weigh the good effects against the bad. Excellent lung function is the benefit of using these meds. Also, the inhaled medications such as pulmozyne and tobi do NOT help the function of the liver. They are solely to benefit lung function. Unfortunately, most liver damage is irreversible.
 
You must log in or register to reply here.
Top