Liver Trouble Anyone?

K

kristenb

New member
Wow, thank you to everyone that responded! I've only been on this site for a couple of weeks and it's nice to know that there are people out there listening.
<br />
<br />Your information is really helpful. I've begun to have very slightly elevated liver enzymes (on two occassions only) but really, I'm more concerned about the extreme distention that is going on in my abdomen and the blood that I'm coughing up that doesn't ever seem to be coming from my lungs--it's like it's coming from by throat or something because it takes absolutely no effort (kind of like I just clear my throat) to get it up...anyhow, i worry about esphogeal varices (as that can be a liver disease sign)....I have mentioned to to the doctors but they say everything is fine in the liver department so far. It's just, without being disrespectful, I have been known to be aware of what is going on with me body before they do. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />As I read each one of your stories one word came to mind: troopers! What absolute troopers you all are! Thanks for reminding me to continue to be a trooper even when things don't seem to be going well. Thanks so much for your input. Every single one of you are in my thoughts.
 
P

PatrickM

New member
HI Kristen, I have been following this post and trying to get the energy to respond to it. My son was diagnosed with CF related liver disease last Sept at age 12. By Dec he was in the hospital with liver failure. It is still so hard to think about because I never even knew the liver was something we had to worry about. Never in a million years did I think cirrhosis of the liver was something I would hear when they referred to my 12 year old son. It was like being diagnosed with CF all over again. Apparently 5% of people with CF have CF related liver disease.

When I am looking at a few of your symptoms you mention above I really feel a need to respond because no one was really worried about my son's liver disease until he ended up being hospitalized. He is now by the way doing very well.

In Sept on a routine chest x ray they noticed an enlarged spleen. This ended up being portal hypertension and is caused by the bile ducts being blocked by mucus and things backing up so to speak. He was having sinus surgery so they decided to see if he had any esophageal varices which he did have. This was in October and they said lets keep an eye on him. He was put on Ursodiol but I was later told by the liver specialist the ursodiol keeps your levels in check but doesn't really help heal the liver or prevent things from worsening, it is all they have though so you take it. In regards to the varices I was told the big concern is bleeding. They said if he ever vomits or coughs up blood it could be a medical emergency and call right away. The week of Christmas he started to complain of a stomach ache, had no appetite and I thought he perhaps had a virus. He had also been on zyvox for 2 weeks and I called the clinic asking do you think the stomach discomfort could be the zyvox and no one thought it was because he had been doing ok on it. Then his stomach started to look distended and then the day after Christmas he vomited and there were streaks of blood in the mucus. We brought him in to the ER and he was admitted due to liver failure.

Now looking back I should have been much more concerned about the distended stomach which was ascites, a fluid build up in the abdomen and looking back he should have been monitored much more closely on the zyvox as they say don't take it if you have liver disease. It can also cause bone marrow suppression which occurred for him resulting in his need for a blood transfusion. I should also mention aside from scheduled sinus surgeries this was his first hospital admission so this was very scary and happened very quick.

I am 100% convinced the "liver failure" he experienced at Christmas was directly related to the zyvox. He came off that and we have since been very careful about which meds he takes, where they are metabolized etc. If you have CF related liver disease I would be VERY cautious about your medications as well. We were also told he needed a low salt diet. Kind of the opposite of his CF diet but the liver md said you need to monitor the salt due to the varices, which he does have and he had banded. Also if you have CF liver disease you should get a Hep A vaccine.

If you are coughing up blood and have a distended stomach push to have an endoscopy to see if you do have varices. My son's liver enzymes were never really high or something anyone was concerned about. His spleen was the first sign something was wrong and at his regular check up in August his CF MD did not notice it on exam but by October they could feel it.

Since Dec he has done very well. He bounced back a lot faster than his doctors predicted and that is why i am convinced the zyvox just stressed his system. Take good care of yourself and trust your gut. I agree you know your body better than anyone. I wish you the best.

Tara
 
P

PatrickM

New member
HI Kristen, I have been following this post and trying to get the energy to respond to it. My son was diagnosed with CF related liver disease last Sept at age 12. By Dec he was in the hospital with liver failure. It is still so hard to think about because I never even knew the liver was something we had to worry about. Never in a million years did I think cirrhosis of the liver was something I would hear when they referred to my 12 year old son. It was like being diagnosed with CF all over again. Apparently 5% of people with CF have CF related liver disease.

When I am looking at a few of your symptoms you mention above I really feel a need to respond because no one was really worried about my son's liver disease until he ended up being hospitalized. He is now by the way doing very well.

In Sept on a routine chest x ray they noticed an enlarged spleen. This ended up being portal hypertension and is caused by the bile ducts being blocked by mucus and things backing up so to speak. He was having sinus surgery so they decided to see if he had any esophageal varices which he did have. This was in October and they said lets keep an eye on him. He was put on Ursodiol but I was later told by the liver specialist the ursodiol keeps your levels in check but doesn't really help heal the liver or prevent things from worsening, it is all they have though so you take it. In regards to the varices I was told the big concern is bleeding. They said if he ever vomits or coughs up blood it could be a medical emergency and call right away. The week of Christmas he started to complain of a stomach ache, had no appetite and I thought he perhaps had a virus. He had also been on zyvox for 2 weeks and I called the clinic asking do you think the stomach discomfort could be the zyvox and no one thought it was because he had been doing ok on it. Then his stomach started to look distended and then the day after Christmas he vomited and there were streaks of blood in the mucus. We brought him in to the ER and he was admitted due to liver failure.

Now looking back I should have been much more concerned about the distended stomach which was ascites, a fluid build up in the abdomen and looking back he should have been monitored much more closely on the zyvox as they say don't take it if you have liver disease. It can also cause bone marrow suppression which occurred for him resulting in his need for a blood transfusion. I should also mention aside from scheduled sinus surgeries this was his first hospital admission so this was very scary and happened very quick.

I am 100% convinced the "liver failure" he experienced at Christmas was directly related to the zyvox. He came off that and we have since been very careful about which meds he takes, where they are metabolized etc. If you have CF related liver disease I would be VERY cautious about your medications as well. We were also told he needed a low salt diet. Kind of the opposite of his CF diet but the liver md said you need to monitor the salt due to the varices, which he does have and he had banded. Also if you have CF liver disease you should get a Hep A vaccine.

If you are coughing up blood and have a distended stomach push to have an endoscopy to see if you do have varices. My son's liver enzymes were never really high or something anyone was concerned about. His spleen was the first sign something was wrong and at his regular check up in August his CF MD did not notice it on exam but by October they could feel it.

Since Dec he has done very well. He bounced back a lot faster than his doctors predicted and that is why i am convinced the zyvox just stressed his system. Take good care of yourself and trust your gut. I agree you know your body better than anyone. I wish you the best.

Tara
 
P

PatrickM

New member
HI Kristen, I have been following this post and trying to get the energy to respond to it. My son was diagnosed with CF related liver disease last Sept at age 12. By Dec he was in the hospital with liver failure. It is still so hard to think about because I never even knew the liver was something we had to worry about. Never in a million years did I think cirrhosis of the liver was something I would hear when they referred to my 12 year old son. It was like being diagnosed with CF all over again. Apparently 5% of people with CF have CF related liver disease.
<br />
<br />When I am looking at a few of your symptoms you mention above I really feel a need to respond because no one was really worried about my son's liver disease until he ended up being hospitalized. He is now by the way doing very well.
<br />
<br />In Sept on a routine chest x ray they noticed an enlarged spleen. This ended up being portal hypertension and is caused by the bile ducts being blocked by mucus and things backing up so to speak. He was having sinus surgery so they decided to see if he had any esophageal varices which he did have. This was in October and they said lets keep an eye on him. He was put on Ursodiol but I was later told by the liver specialist the ursodiol keeps your levels in check but doesn't really help heal the liver or prevent things from worsening, it is all they have though so you take it. In regards to the varices I was told the big concern is bleeding. They said if he ever vomits or coughs up blood it could be a medical emergency and call right away. The week of Christmas he started to complain of a stomach ache, had no appetite and I thought he perhaps had a virus. He had also been on zyvox for 2 weeks and I called the clinic asking do you think the stomach discomfort could be the zyvox and no one thought it was because he had been doing ok on it. Then his stomach started to look distended and then the day after Christmas he vomited and there were streaks of blood in the mucus. We brought him in to the ER and he was admitted due to liver failure.
<br />
<br />Now looking back I should have been much more concerned about the distended stomach which was ascites, a fluid build up in the abdomen and looking back he should have been monitored much more closely on the zyvox as they say don't take it if you have liver disease. It can also cause bone marrow suppression which occurred for him resulting in his need for a blood transfusion. I should also mention aside from scheduled sinus surgeries this was his first hospital admission so this was very scary and happened very quick.
<br />
<br />I am 100% convinced the "liver failure" he experienced at Christmas was directly related to the zyvox. He came off that and we have since been very careful about which meds he takes, where they are metabolized etc. If you have CF related liver disease I would be VERY cautious about your medications as well. We were also told he needed a low salt diet. Kind of the opposite of his CF diet but the liver md said you need to monitor the salt due to the varices, which he does have and he had banded. Also if you have CF liver disease you should get a Hep A vaccine.
<br />
<br />If you are coughing up blood and have a distended stomach push to have an endoscopy to see if you do have varices. My son's liver enzymes were never really high or something anyone was concerned about. His spleen was the first sign something was wrong and at his regular check up in August his CF MD did not notice it on exam but by October they could feel it.
<br />
<br />Since Dec he has done very well. He bounced back a lot faster than his doctors predicted and that is why i am convinced the zyvox just stressed his system. Take good care of yourself and trust your gut. I agree you know your body better than anyone. I wish you the best.
<br />
<br />Tara
 
E

Ender

New member
Just out of curiousity, what were your enzyme numbers at? My recent blood tests showed that i had elevated liver enzymes, and i kinda scared the hell outta me, although my doc didn't look overly concerned? One of them was 5x normal and the other was 2x. What kinda numbers are you guys seeing, and should i be overly concerned?

Good post <img src="i/expressions/face-icon-small-smile.gif" border="0">

Kiel
 
E

Ender

New member
Just out of curiousity, what were your enzyme numbers at? My recent blood tests showed that i had elevated liver enzymes, and i kinda scared the hell outta me, although my doc didn't look overly concerned? One of them was 5x normal and the other was 2x. What kinda numbers are you guys seeing, and should i be overly concerned?

Good post <img src="i/expressions/face-icon-small-smile.gif" border="0">

Kiel
 
E

Ender

New member
Just out of curiousity, what were your enzyme numbers at? My recent blood tests showed that i had elevated liver enzymes, and i kinda scared the hell outta me, although my doc didn't look overly concerned? One of them was 5x normal and the other was 2x. What kinda numbers are you guys seeing, and should i be overly concerned?
<br />
<br />Good post <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Kiel
 
P

PatrickM

New member
Hi Kiel,
I am not sure if these are the tests you are looking at but for my son in 10/09 his AST was 48, normal 2-40. ALT was 48, 3-30 normal, Alkaline Phosphatase 479, 40-360 normal. His white blood count was also low, 3.4 normal 4.5-13.5, I think that factors in as well. In 3/10 his AST was 52, ALT 34. He started on the Ursodiol in mid October so that will help his numbers to look more in the normal range. The enlarged spleen was the big thing for us because that tells you the bile ducts are backing up and that led to the endoscopy and the discovery of the varices. I hope those numbers help you. Keep in mind it may be different for kids than adults and maybe that is why your doctors are not overly concerned. I am really not sure what it all means.

Good luck-

Tara
 
P

PatrickM

New member
Hi Kiel,
I am not sure if these are the tests you are looking at but for my son in 10/09 his AST was 48, normal 2-40. ALT was 48, 3-30 normal, Alkaline Phosphatase 479, 40-360 normal. His white blood count was also low, 3.4 normal 4.5-13.5, I think that factors in as well. In 3/10 his AST was 52, ALT 34. He started on the Ursodiol in mid October so that will help his numbers to look more in the normal range. The enlarged spleen was the big thing for us because that tells you the bile ducts are backing up and that led to the endoscopy and the discovery of the varices. I hope those numbers help you. Keep in mind it may be different for kids than adults and maybe that is why your doctors are not overly concerned. I am really not sure what it all means.

Good luck-

Tara
 
P

PatrickM

New member
Hi Kiel,
<br />I am not sure if these are the tests you are looking at but for my son in 10/09 his AST was 48, normal 2-40. ALT was 48, 3-30 normal, Alkaline Phosphatase 479, 40-360 normal. His white blood count was also low, 3.4 normal 4.5-13.5, I think that factors in as well. In 3/10 his AST was 52, ALT 34. He started on the Ursodiol in mid October so that will help his numbers to look more in the normal range. The enlarged spleen was the big thing for us because that tells you the bile ducts are backing up and that led to the endoscopy and the discovery of the varices. I hope those numbers help you. Keep in mind it may be different for kids than adults and maybe that is why your doctors are not overly concerned. I am really not sure what it all means.
<br />
<br />Good luck-
<br />
<br />Tara
 
K

kristenb

New member
Tara,

wow, thank you so much for your guidance and inisight. you spent so much time to write what you did and i found great comfort in that. simply sharing your experience is very helpful and affirmating. it affirms that i should continue to press on and guide my docs to at least check my liver. my liver could very well turn out to be fine; but, if it's not, i'd rather find out as early as possible. thanks for reminding me to press on no matter what the health care team has said in the past.

i am so sorry to hear about yet another obsticle that your son is being faced with. this damn disease can be so unrelentless at times...i am thinking of you and your son and wishing you both well.i hope you realize how helpful your words were to me. <img src="i/expressions/face-icon-small-smile.gif" border="0"> take care of yourself and i'm sure we'll be chatting soon. i will post an update after the endoscopy (my appointment is now going to be in the middle of september, geez, i thought it was sooner...)

Take care,

Kristen
 
K

kristenb

New member
Tara,

wow, thank you so much for your guidance and inisight. you spent so much time to write what you did and i found great comfort in that. simply sharing your experience is very helpful and affirmating. it affirms that i should continue to press on and guide my docs to at least check my liver. my liver could very well turn out to be fine; but, if it's not, i'd rather find out as early as possible. thanks for reminding me to press on no matter what the health care team has said in the past.

i am so sorry to hear about yet another obsticle that your son is being faced with. this damn disease can be so unrelentless at times...i am thinking of you and your son and wishing you both well.i hope you realize how helpful your words were to me. <img src="i/expressions/face-icon-small-smile.gif" border="0"> take care of yourself and i'm sure we'll be chatting soon. i will post an update after the endoscopy (my appointment is now going to be in the middle of september, geez, i thought it was sooner...)

Take care,

Kristen
 
K

kristenb

New member
Tara,
<br />
<br />wow, thank you so much for your guidance and inisight. you spent so much time to write what you did and i found great comfort in that. simply sharing your experience is very helpful and affirmating. it affirms that i should continue to press on and guide my docs to at least check my liver. my liver could very well turn out to be fine; but, if it's not, i'd rather find out as early as possible. thanks for reminding me to press on no matter what the health care team has said in the past.
<br />
<br />i am so sorry to hear about yet another obsticle that your son is being faced with. this damn disease can be so unrelentless at times...i am thinking of you and your son and wishing you both well.i hope you realize how helpful your words were to me. <img src="i/expressions/face-icon-small-smile.gif" border="0"> take care of yourself and i'm sure we'll be chatting soon. i will post an update after the endoscopy (my appointment is now going to be in the middle of september, geez, i thought it was sooner...)
<br />
<br />Take care,
<br />
<br />Kristen
 
T

Transplantmommy

New member
My liver was enlarged when I was born, which was the first symptom, but nothing really happened until I was a teenager. I started having some really bad pains in my stomach when I was around 12 and they would be on and off. It wasn't until I was about 14 that the doctors thought that it was bad enough to start searching for what was wrong. I was tested for cancer and a few other things (all negative) before they decided to do a liver biopsy. That is when they found that I had cirrhosis of the liver and other tests also showed that I had portal hypertension (high blood pressure in the liver) and that is why I had a swollen spleen.

I know that my LFT's were off, enzymes were elevated, etc...but I don't remember the numbers, I was too young. I was sent to liver transplant evaluations in NYC and then to Children's in Pittsburgh, both of which said I was a long way away from liver transplant.

It wasn't until I was 23 that the talk about liver transplant came up again, and this time it was time to talk about lung transplant too. I was listed for double lung and liver transplant on August 24, 2006 and I had the transplant on January 31, 2007. All of my functions have been great since!
 
T

Transplantmommy

New member
My liver was enlarged when I was born, which was the first symptom, but nothing really happened until I was a teenager. I started having some really bad pains in my stomach when I was around 12 and they would be on and off. It wasn't until I was about 14 that the doctors thought that it was bad enough to start searching for what was wrong. I was tested for cancer and a few other things (all negative) before they decided to do a liver biopsy. That is when they found that I had cirrhosis of the liver and other tests also showed that I had portal hypertension (high blood pressure in the liver) and that is why I had a swollen spleen.

I know that my LFT's were off, enzymes were elevated, etc...but I don't remember the numbers, I was too young. I was sent to liver transplant evaluations in NYC and then to Children's in Pittsburgh, both of which said I was a long way away from liver transplant.

It wasn't until I was 23 that the talk about liver transplant came up again, and this time it was time to talk about lung transplant too. I was listed for double lung and liver transplant on August 24, 2006 and I had the transplant on January 31, 2007. All of my functions have been great since!
 
T

Transplantmommy

New member
My liver was enlarged when I was born, which was the first symptom, but nothing really happened until I was a teenager. I started having some really bad pains in my stomach when I was around 12 and they would be on and off. It wasn't until I was about 14 that the doctors thought that it was bad enough to start searching for what was wrong. I was tested for cancer and a few other things (all negative) before they decided to do a liver biopsy. That is when they found that I had cirrhosis of the liver and other tests also showed that I had portal hypertension (high blood pressure in the liver) and that is why I had a swollen spleen.
<br />
<br />I know that my LFT's were off, enzymes were elevated, etc...but I don't remember the numbers, I was too young. I was sent to liver transplant evaluations in NYC and then to Children's in Pittsburgh, both of which said I was a long way away from liver transplant.
<br />
<br />It wasn't until I was 23 that the talk about liver transplant came up again, and this time it was time to talk about lung transplant too. I was listed for double lung and liver transplant on August 24, 2006 and I had the transplant on January 31, 2007. All of my functions have been great since!
 
K

kristenb

New member
patti,
thanks for your response. yeah, so glad to hear after all of your struggles that you received new lungs and liver. (it doesn't even seem real to say that!). i really hope you are feeling well.

out of curiosity, do you remember if you had any facial, neck or abdominal swelling due to the liver probs/portal hypertension)?

take care.
 
K

kristenb

New member
patti,
thanks for your response. yeah, so glad to hear after all of your struggles that you received new lungs and liver. (it doesn't even seem real to say that!). i really hope you are feeling well.

out of curiosity, do you remember if you had any facial, neck or abdominal swelling due to the liver probs/portal hypertension)?

take care.
 
K

kristenb

New member
patti,
<br />thanks for your response. yeah, so glad to hear after all of your struggles that you received new lungs and liver. (it doesn't even seem real to say that!). i really hope you are feeling well.
<br />
<br />out of curiosity, do you remember if you had any facial, neck or abdominal swelling due to the liver probs/portal hypertension)?
<br />
<br />take care.
 
T

Transplantmommy

New member
I was fortunate enough that I didn't really have a lot of side effects from my liver disease. The main one was the enlarged varices and spleen...and elevated numbers. I don't remember any swelling at all...but I did have one friend who had swelling from liver troubles...and also from her kidneys. She coudln't get listed for lungs and liver, and had a lung transplant. Unfortunately, her liver was not strong enough for all of the new meds she was on post tx, and she passed 2 months after her transplant. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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