Aa
NASH/Fatty Liver
My wife was diagnosed back in 2007-08 with Fatty Liver and advised to make a lot of life changes which she has been unable to do. We are currently stuck in an information vacuum with the healthcare providers because the surgeon who was going to remove her spleen and repair an umbilical hernia cancelled the surgery and referred her to a more advanced facility.
The insurance company refused the refferal because the doctor is out of network and somewhere along the line the referral was mistakenly sent in for "idiopathic scoliosis" instead of the real problem regarding the spleen, liver and umbilical hernia.
To date she has had her gall bladder removed, spleen due to be removed, now has an umbilical hernia, is beginning to lose weight which she has not been able to accomplish previously on her own. Her white blood cell counts have been all over the place, though mostly low, her neutrophils have been below 1000 on a couple of occasions.
All very scary stuff, I can't really talk to her about it because my fears are pretty dire. I believe her liver has progressed to a more advanced cirrhosis, developed portal hypertension, now has ascites which has contributed to an umbilical hernia. I hope to God I'm wrong but am taking care of her and a diabetic ten year old with the help of one of my adult children and I don't really know for sure where this is going.
Any input on her symptoms listed above and a few more I'll list below I would appreciate some input.
further symptoms
occasional rash's itching
bloody noses
tired all of the time
nausea
constipation
bruising
The insurance company refused the refferal because the doctor is out of network and somewhere along the line the referral was mistakenly sent in for "idiopathic scoliosis" instead of the real problem regarding the spleen, liver and umbilical hernia.
To date she has had her gall bladder removed, spleen due to be removed, now has an umbilical hernia, is beginning to lose weight which she has not been able to accomplish previously on her own. Her white blood cell counts have been all over the place, though mostly low, her neutrophils have been below 1000 on a couple of occasions.
All very scary stuff, I can't really talk to her about it because my fears are pretty dire. I believe her liver has progressed to a more advanced cirrhosis, developed portal hypertension, now has ascites which has contributed to an umbilical hernia. I hope to God I'm wrong but am taking care of her and a diabetic ten year old with the help of one of my adult children and I don't really know for sure where this is going.
Any input on her symptoms listed above and a few more I'll list below I would appreciate some input.
further symptoms
occasional rash's itching
bloody noses
tired all of the time
nausea
constipation
bruising
COMMUNITY LEADER
Your question can only be really answered by a highly trained and experienced doctor who specializes in such things. This is nothing any layman could even pretend to understand.
At a liver transplant center "Interventional Radiology" are the department that typically deals with portal hypertension issues beyond basic med management issues related to cirrhosis of the liver. As the inventors of angioplasty and the catheter-delivered stent, interventional radiologists pioneered modern minimally invasive medicine. Using X-rays, CT, ultrasound, MRI, and other imaging modalities, interventional radiologists obtain images which are then used to direct interventional instruments throughout the body. These procedures are usually performed using needles and narrow tubes called catheters, rather than by making large incisions into the body as in traditional surgery.
Many conditions that once required open surgery can now be treated non-surgically by interventional radiologists. By minimizing the physical trauma to the patient, non-surgical interventions can reduce infection rates and recovery time, as well as shorten hospital stays.
I have had them perform many procedures of myself over the years and are thank full for all they can do to help people.
Hernias are common in people with cirrhosis. Many of us had hernias for years mostly due to having ascites. Since ascites will come and go while a person has advanced cirrhosis hernias are usually not addressed until AFTER transplant. For many of us living with hernias was part of learning to live with cirrhosis.
Besides abdominal procedures should be avoided as they will make the transplant surgery even more difficult to due because of scar tissue they create.
I would recommend getting your wife evaluated at a liver transplant center soon as it appears cirrhosis will only get worse over time and at some point in the not too distant future she will need a new liver.
Her complications are being something that only experts can manage. She needs a team of doctors to manage all of the issues of your liver disease. The doctors at a liver transplant center are the experts in managing all aspects of liver disease and it complications and ultimately the only folks that can get your wide wife listed for a liver transplant.
Good luck.
Hector
At a liver transplant center "Interventional Radiology" are the department that typically deals with portal hypertension issues beyond basic med management issues related to cirrhosis of the liver. As the inventors of angioplasty and the catheter-delivered stent, interventional radiologists pioneered modern minimally invasive medicine. Using X-rays, CT, ultrasound, MRI, and other imaging modalities, interventional radiologists obtain images which are then used to direct interventional instruments throughout the body. These procedures are usually performed using needles and narrow tubes called catheters, rather than by making large incisions into the body as in traditional surgery.
Many conditions that once required open surgery can now be treated non-surgically by interventional radiologists. By minimizing the physical trauma to the patient, non-surgical interventions can reduce infection rates and recovery time, as well as shorten hospital stays.
I have had them perform many procedures of myself over the years and are thank full for all they can do to help people.
Hernias are common in people with cirrhosis. Many of us had hernias for years mostly due to having ascites. Since ascites will come and go while a person has advanced cirrhosis hernias are usually not addressed until AFTER transplant. For many of us living with hernias was part of learning to live with cirrhosis.
Besides abdominal procedures should be avoided as they will make the transplant surgery even more difficult to due because of scar tissue they create.
I would recommend getting your wife evaluated at a liver transplant center soon as it appears cirrhosis will only get worse over time and at some point in the not too distant future she will need a new liver.
Her complications are being something that only experts can manage. She needs a team of doctors to manage all of the issues of your liver disease. The doctors at a liver transplant center are the experts in managing all aspects of liver disease and it complications and ultimately the only folks that can get your wide wife listed for a liver transplant.
Good luck.
Hector
COMMUNITY LEADER
Only her doctors know the true status of her health and why she needs so many serious procedures removing her organs. Talk to her doctors and come to understand at least the basics of her health issues so you can be of support to her while she is going through such a difficult time. I know that is what myself and most people with serious health challenges want.
While there are many people with fatty liver disease in this country very few of them have cirrhosis of the liver. Fatty liver disease is a form of liver disease like hepatitis C liver disease, alcoholic liver disease and many other forms of liver disease but the amount of disease various form one patient to another. It often take 20-40 years of having liver disease before a person develop stage 4 liver disease (cirrhosis).
Your wife has had her gall bladder removed and is going to have her spleen removed I understand from what you have written. How can it be that she and yourself don’t understand her diagnosis when the doctors have already explained to your why she needed here organs removed? She or you must have sign the consent forms to have there procedures performed and the potential risks involved. No one has these organs removed unless they have serious health issues.
I am not sure why you imagine she has advanced cirrhosis based on your story.
If she had advanced cirrhosis it is unlikely she could have these procedures done as people with advanced cirrhosis do not tolerate surgeries well. They are at a high risk for bleeding issues due to poor clotting and serious infection. Also since they have been looking at abdominal organs they would be seeing cirrhosis on every scan she has of the gall bladder and spleen. It would be obvious never mind her liver lab numbers would all be abnormal.
The chances are you imagining something that doesn’t exit. Obviously your wife has serious health issues, to help her the most it would be best to face the reality of those then worry about something she doesn’t have.
Best to her and you.
Hector
While there are many people with fatty liver disease in this country very few of them have cirrhosis of the liver. Fatty liver disease is a form of liver disease like hepatitis C liver disease, alcoholic liver disease and many other forms of liver disease but the amount of disease various form one patient to another. It often take 20-40 years of having liver disease before a person develop stage 4 liver disease (cirrhosis).
Your wife has had her gall bladder removed and is going to have her spleen removed I understand from what you have written. How can it be that she and yourself don’t understand her diagnosis when the doctors have already explained to your why she needed here organs removed? She or you must have sign the consent forms to have there procedures performed and the potential risks involved. No one has these organs removed unless they have serious health issues.
I am not sure why you imagine she has advanced cirrhosis based on your story.
If she had advanced cirrhosis it is unlikely she could have these procedures done as people with advanced cirrhosis do not tolerate surgeries well. They are at a high risk for bleeding issues due to poor clotting and serious infection. Also since they have been looking at abdominal organs they would be seeing cirrhosis on every scan she has of the gall bladder and spleen. It would be obvious never mind her liver lab numbers would all be abnormal.
The chances are you imagining something that doesn’t exit. Obviously your wife has serious health issues, to help her the most it would be best to face the reality of those then worry about something she doesn’t have.
Best to her and you.
Hector
2 Comments
Hector, thanks for responding. The history is complicated, she is in denial of how her diet is affecting her health. She has convinced herself that she doesn't eat very much.
This is text from the report we received today for the CT scan that led to the postponement of her surgery.
ABDOMEN: The liver now demonstrates a nodular contour, compatible with cirrhosis. Multiple varices are present in the upper abdomen. The spleen is markedly enlarged, measuring 28 cm cranicaudal x 18 mm AP x 10 CM transverse. There is a prominence of the left renal vein, suggestive of spontaneous splenorenal shunting.
The report goes on to talk about indications of portal hypertension and the hernia. The only real good news I can see is that there is no free fluid.
This is text from the report we received today for the CT scan that led to the postponement of her surgery.
ABDOMEN: The liver now demonstrates a nodular contour, compatible with cirrhosis. Multiple varices are present in the upper abdomen. The spleen is markedly enlarged, measuring 28 cm cranicaudal x 18 mm AP x 10 CM transverse. There is a prominence of the left renal vein, suggestive of spontaneous splenorenal shunting.
The report goes on to talk about indications of portal hypertension and the hernia. The only real good news I can see is that there is no free fluid.
The Surgeon today told my wife that he can't to the surgery because, if I understand this right the splenorenal shunting. His nurse, told my wife over the phone that the surgery would lead to renal failure. Does this make any sense?
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