Aa
CT Scan Results
Good Morning all,
Called Dr. office about my results the nurse said " It just showed your spleen was slightly enlarged which is normal with cirrhosis but your liver isn't enlarged and everything else pretty much looks normal." I asked what my MELD score was she didn't know what I was talking about so I then asked her if it was compensated or decompensated, she said "Well it doesn't say either but I guess it would be decompensated because of the spleen.
What I really need help with is...
1. What important questions should I be asking him that will be helpful to me?
2. Do doctors usually remove the spleen when it is enlarged?
Thanks, Mona
Called Dr. office about my results the nurse said " It just showed your spleen was slightly enlarged which is normal with cirrhosis but your liver isn't enlarged and everything else pretty much looks normal." I asked what my MELD score was she didn't know what I was talking about so I then asked her if it was compensated or decompensated, she said "Well it doesn't say either but I guess it would be decompensated because of the spleen.
What I really need help with is...
1. What important questions should I be asking him that will be helpful to me?
2. Do doctors usually remove the spleen when it is enlarged?
Thanks, Mona
Hi Mona
Did you mean decompensated "cirrhosis due to enlarged veins in esophagus"?
Lynn
Did you mean decompensated "cirrhosis due to enlarged veins in esophagus"?
Lynn
Just an update for those of you who aren't on the hep c community. My new GI did liver biopsy and I found out yesterday that even though the biopsy showed F3/ A2 ( no cirrhosis) he believes I have compensated cirrhosis due to enlarged veins in esophagus. Hopefully I get approval for sovaldi-olysio and I really like my new GI.
Im hoping my hepatologist at U of M will work with my GI for treatment because my GI is closer and I have other medical issues that I see my GI for and due to the fact I have cirrhosis I will still need a hepatologist after treatment.
Im hoping my hepatologist at U of M will work with my GI for treatment because my GI is closer and I have other medical issues that I see my GI for and due to the fact I have cirrhosis I will still need a hepatologist after treatment.
COMMUNITY LEADER
Hello Mona,
It is nice to hear from you again. Sorry about your recent experience with your gastroenterologist. What you are going through right now is quite devastating and should be treated seriously and delicately whenever possible. Questions should be answered and those without answers a plan should be implemented to get the answers you need so that treatment options can be considered.
Your research is paying off and you’re doing great getting things rolling. I am so glad to hear about your referral to U of M! Be sure to bring copies of your EGD, Ct scan, and blood labs to avoid retesting if possible. Talk to the clinic that ran the CT and obtain a disk of the imaging if possible. Also bring anything that documents what treatment you have been through for HCV. Lastly bring all of the medications you have been taking, don’t forget to mention OTC drugs also.
Sometimes not knowing the answers is more scary then actually knowing. I expect you will experience a highly motivated doctor(s) with your best interest in mind, reassuring that you are in good hands with your medical treatment. I wish you all the best and look forward to hearing from you again.
Take care,
Randy
It is nice to hear from you again. Sorry about your recent experience with your gastroenterologist. What you are going through right now is quite devastating and should be treated seriously and delicately whenever possible. Questions should be answered and those without answers a plan should be implemented to get the answers you need so that treatment options can be considered.
Your research is paying off and you’re doing great getting things rolling. I am so glad to hear about your referral to U of M! Be sure to bring copies of your EGD, Ct scan, and blood labs to avoid retesting if possible. Talk to the clinic that ran the CT and obtain a disk of the imaging if possible. Also bring anything that documents what treatment you have been through for HCV. Lastly bring all of the medications you have been taking, don’t forget to mention OTC drugs also.
Sometimes not knowing the answers is more scary then actually knowing. I expect you will experience a highly motivated doctor(s) with your best interest in mind, reassuring that you are in good hands with your medical treatment. I wish you all the best and look forward to hearing from you again.
Take care,
Randy
I went to my Dr. and am now have many thoughts, fears and unanswered questioned that I don't even know where to start but will try. After the nurse saying it was cirrhosis and the rest he said he can't say whether it is or isn't cirrhosis. He said I have prominent veins but not varices, said my portal veins were enlarged so I asked if I had portal hypertension which he said he was unsure. He said not to worry that he was going to start the new treatment as soon as it came available in a couple months. I told him I had been doing a lot of research and reading articles and that it wasn't available for me and I didn't feel comfortable waiting for it to become available for me. That is when his arrogance and condescending attitude really came out. Told me that was called treatment naïve I said yes Im aware of that, said I was over reacting and shouldn't read so much. I told him I wanted another liver bio since I haven't had one since 2001 he said there was no need to do that til new tx was available. I then said I don't want to wait that long so he had the audacity to ask me how long I thought I had to live. Of course I told him I had no idea and I was shocked he even asked me this of course he asked me in a way assuming that I thought I had all the answers. I have a colonoscopy in Jan with him and of course he said any surgery for heartburn or other surgery in the stomach area is out of the question because of the "prominent veins". So this Dr./ patient relationship is over after Jan. 3. I a good note I shared this devastating Dr. visit with my PCP and he has referred me to U of M, I go on Feb. 5 I am also confident that if it is cirrhosis it is in the beginning stages since he said the scan wasn't a clear answer either way.
Yes, this is exciting news about simeprevir. Mona would need to ask a hepatologist about the possibility of treating with simeprevir, since she 1) has Cirrhosis, and 2) has previously treated with Interferon and had to stop treatment due to thyroid problems. I'm not sure how improved her chances of clearing her Hep C would be given that it would require that Interferon and Ribavirin be taken along with the simeprevir and the treatment would last 48 weeks and she wasn't able to tolerate Interferon before. Only a very good hepatologist very familiar with Hep C could say, but my guess is that she will not be able to treat her Hep C this year or next year.
Advocate1955
Advocate1955
Hi Mona
and anyone else who might be interested:
OLYSIOTM (simeprevir) Receives FDA Approval for Combination Treatment of Chronic Hepatitis C
http://www.olysio.com/intro/
and anyone else who might be interested:
OLYSIOTM (simeprevir) Receives FDA Approval for Combination Treatment of Chronic Hepatitis C
http://www.olysio.com/intro/
I found this link at Henry Ford http://www.henryford.com/body.cfm?id=38441&action=detail&ref=167&bolShowHFPN=true
for Kimberly A. Brown, M.D.
Board Certifications:
American Board of Internal Medicine
American Board of Internal Medicine: Gastroenterology
American Board of Internal Medicine: Transplant Hepatology
I searches under specality Cirrhosis
also Stuart C. Gordon, M.D.
Board Certifications:
American Board of Internal Medicine
American Board of Internal Medicine: Gastroenterology
American Board of Internal Medicine: Transplant Hepatology
http://www.henryford.com/body.cfm?id=38441&action=detail&ref=3834&bolShowHFPN=true
Hope this helps
Lynn
for Kimberly A. Brown, M.D.
Board Certifications:
American Board of Internal Medicine
American Board of Internal Medicine: Gastroenterology
American Board of Internal Medicine: Transplant Hepatology
I searches under specality Cirrhosis
also Stuart C. Gordon, M.D.
Board Certifications:
American Board of Internal Medicine
American Board of Internal Medicine: Gastroenterology
American Board of Internal Medicine: Transplant Hepatology
http://www.henryford.com/body.cfm?id=38441&action=detail&ref=3834&bolShowHFPN=true
Hope this helps
Lynn
Well, you have two of the tests that we would need to calculate your MELD (Bili and Creatinine), but we don't have the INR (also known as PT or Prothrombin Time), so we can't calculate it. I agree with you. There are a lot of concerns in the way that your Gastroenterologist has handled your case. Rectal bleeding could have been just hemorrhoids, but it also could have been intestinal varices (probably not). Yes, obesity is a factor in both the progression of Cirrhosis as well as the successful treatment of Hep C. But the biggest issue that I see is that your Gastroenterologist has not done the standard kind of monitoring that should be done with a patient with Hep C. He should have monitored your labs at least every year, he should have done a liver biopsy every 3 years until you developed Cirrhosis, and then once you developed Cirrhosis, he should have referred you to a hepatologist for more careful monitoring to screen for liver cancer and to discuss ongoing trials of new medications for treating Hep C, since it sounds like you won't be able to do either the triple therapies that came out in 2011 or the new ones that are coming out next month, since you had complications with Interferon.
Hepatologists usually start with the specialty of Gastroenterology and then go on to do some other specialized training in Hepatology. At this point, if I were you, I would not go with a Gastroenterologist who specializes in Hep C. I would go with a Hepatologist who specializes in Hep C. That's just my opinion.
Keep posting and let us know what your MELD score is and whether your liver is compensated or decompensated when you find out.
Advocate1955
Hepatologists usually start with the specialty of Gastroenterology and then go on to do some other specialized training in Hepatology. At this point, if I were you, I would not go with a Gastroenterologist who specializes in Hep C. I would go with a Hepatologist who specializes in Hep C. That's just my opinion.
Keep posting and let us know what your MELD score is and whether your liver is compensated or decompensated when you find out.
Advocate1955
ok this is my CMP
Albumin Lvl 3.6 g/dL
Alk Phos 80 IU/L
ALT 55 IU/L
AsT 53 IU/L
Bili Total 0.4 mg/dL
Urea Nitrogen 8 mg/dL
Calcium Lvl Total 9.6 mg/dL
Chloride 101
Creatinine 0.8
Glucose Lvl 117
HCO3 32
Potassium Lvl 4.5
Sodium 137
Total Protein 7.4
Anion Gap 4
MDRD eGFR >60
Albumin Lvl 3.6 g/dL
Alk Phos 80 IU/L
ALT 55 IU/L
AsT 53 IU/L
Bili Total 0.4 mg/dL
Urea Nitrogen 8 mg/dL
Calcium Lvl Total 9.6 mg/dL
Chloride 101
Creatinine 0.8
Glucose Lvl 117
HCO3 32
Potassium Lvl 4.5
Sodium 137
Total Protein 7.4
Anion Gap 4
MDRD eGFR >60
I am Genotype 1a, he stopped treatment because my thyroid levels were extremely high they had to shrink it. Im finding out a lot of things Im not happy about after doing a lot of reading this past week, like I had rectal bleeding this summer enough to cause me concern and skipped calling my PCP and called my GI and they said oh don't worry its probably hemorrhoids even though I've already had polyps removed in 2006. Im just frustrated at this point, I feel if he would have kept a closer eye on me I wouldn't have progressed this far. I was thin in 2000 and now am obese I asked him 2 yrs ago concerned about my weight and he said just exercise I explained I didn't have the energy to and from what I've read my weight gain should have been treated because it puts me at higher risk of progressing faster.
I don't have any of my results to lab work except from my PCP but I would need to know the name of lab work because I have access to them online. I've requested a copy of all my records from my GI which I will pick up Tuesday at my appointment.
When I looked up hepatologist at the Henry Ford Transplant Center it only list GI's that specialize in HCV and cirrhosis. I could only find Hepatologists at the U of M transplant Center. That being said I'm a little confused on it.
Thanks for all your help and thanks for the link.
Mona
I don't have any of my results to lab work except from my PCP but I would need to know the name of lab work because I have access to them online. I've requested a copy of all my records from my GI which I will pick up Tuesday at my appointment.
When I looked up hepatologist at the Henry Ford Transplant Center it only list GI's that specialize in HCV and cirrhosis. I could only find Hepatologists at the U of M transplant Center. That being said I'm a little confused on it.
Thanks for all your help and thanks for the link.
Mona
Mona,
Here is the link to the questions I referred to. You can cut and paste them into a word document and modify them to suit your specific situation as some are not relevant to your case. Again thanks to both HectorSF and OrphanedHawk for developing these questions:
http://www.medhelp.org/user_journals/show/615811/Preparing-for-first-appointment-with-hepatologist
Also, Mona, if you have your INR, bilirubin, and creatine results from your last labwork, we can help you calculate your MELD score or give you a link to a calculator that will tell you your MELD score. If you know those results, post them on this thread, and Randy and I can help you figure out your MELD.
Advocate1955
Here is the link to the questions I referred to. You can cut and paste them into a word document and modify them to suit your specific situation as some are not relevant to your case. Again thanks to both HectorSF and OrphanedHawk for developing these questions:
http://www.medhelp.org/user_journals/show/615811/Preparing-for-first-appointment-with-hepatologist
Also, Mona, if you have your INR, bilirubin, and creatine results from your last labwork, we can help you calculate your MELD score or give you a link to a calculator that will tell you your MELD score. If you know those results, post them on this thread, and Randy and I can help you figure out your MELD.
Advocate1955
Great answers from Randy.
Just to review, you have Hep C, probably Genotype 1, you've treated your Hep C previously, you had some scarring per your 2000 liver biopsy, you have Cirrhosis, you have portal hypertension as indicated by non bleeding esophageal varices, and a slightly enlarged spleen.
The most important thing is that you cannot continue to see a Gastroenterologist. You must see a Hepatologist, and preferably one who has experience in treating Hep C.
As I mentioned in your previous post, contrary to what your Gastroenterologist told you, you are probably not a candidate for the new Hep C treatments that will be coming out next month or early January hopefully. That is because you have treated previously. These new treatments are only for treatment naive Genotype 1s. If you are Genotype 1 and since you have previously treated, these new treatments will not be approved for you. If you are Genotype 2 or 3, you may be able to try those treatments, but I don't think you are based on your history of treatment.
So, your Gastroenterologist is uninformed about Hep C and Hep C treatments. Secondly, you have Cirrhosis. A good gastroenterologist would have referred you to a hepatologist the minute he/she concluded that you have Cirrhosis, because a gastroenterologist does not specialize in the liver. Gastroenterologists treat the entire digestive system, and hepatologists focus and specialize in the liver.
The most important thing to do right now is make an appointment with a hepatologist at a university based medical center that has a transplant center. That is where you will find a hepatologist.
The big questions will be "What is my MELD score" and "Is my liver compensated or decompensated". If your MELD score is relatively low (e.g. 6-9?), and compensated, you may be able to treat your Hep C using one of the currently approved triple therapies (Interferon, Ribavirin, and a Protease Inhibitor such as Incivek or Victrellis). If your MELD score is higher (10+?), and decompensated, you may not be able to treat your Hep C with one of the currently approved therapies because it may damage your liver further or cause it to fail. Only a very good gastroenterologist or a hepatologist can answer these questions.
It scares me that your current gastroenterologist doesn't know that the new treatments will not be approved for you. The companies have not even requested approval for Genotype 1s who have previously treated, because the results in the trials were not good for this population.
It also scares me that your current gastroenterologist's nurse cannot tell you your MELD score or tell you if your liver is compensated or decompensated.
I am going to post a link to some basic questions that you can ask a hepatologist. HectorSF developed some of these questions and another forum member OrphanedHawk developed some of them. I combined them into a set of questions and they are on my journals. I'll send you the link in a minute.
Advocate1955
Just to review, you have Hep C, probably Genotype 1, you've treated your Hep C previously, you had some scarring per your 2000 liver biopsy, you have Cirrhosis, you have portal hypertension as indicated by non bleeding esophageal varices, and a slightly enlarged spleen.
The most important thing is that you cannot continue to see a Gastroenterologist. You must see a Hepatologist, and preferably one who has experience in treating Hep C.
As I mentioned in your previous post, contrary to what your Gastroenterologist told you, you are probably not a candidate for the new Hep C treatments that will be coming out next month or early January hopefully. That is because you have treated previously. These new treatments are only for treatment naive Genotype 1s. If you are Genotype 1 and since you have previously treated, these new treatments will not be approved for you. If you are Genotype 2 or 3, you may be able to try those treatments, but I don't think you are based on your history of treatment.
So, your Gastroenterologist is uninformed about Hep C and Hep C treatments. Secondly, you have Cirrhosis. A good gastroenterologist would have referred you to a hepatologist the minute he/she concluded that you have Cirrhosis, because a gastroenterologist does not specialize in the liver. Gastroenterologists treat the entire digestive system, and hepatologists focus and specialize in the liver.
The most important thing to do right now is make an appointment with a hepatologist at a university based medical center that has a transplant center. That is where you will find a hepatologist.
The big questions will be "What is my MELD score" and "Is my liver compensated or decompensated". If your MELD score is relatively low (e.g. 6-9?), and compensated, you may be able to treat your Hep C using one of the currently approved triple therapies (Interferon, Ribavirin, and a Protease Inhibitor such as Incivek or Victrellis). If your MELD score is higher (10+?), and decompensated, you may not be able to treat your Hep C with one of the currently approved therapies because it may damage your liver further or cause it to fail. Only a very good gastroenterologist or a hepatologist can answer these questions.
It scares me that your current gastroenterologist doesn't know that the new treatments will not be approved for you. The companies have not even requested approval for Genotype 1s who have previously treated, because the results in the trials were not good for this population.
It also scares me that your current gastroenterologist's nurse cannot tell you your MELD score or tell you if your liver is compensated or decompensated.
I am going to post a link to some basic questions that you can ask a hepatologist. HectorSF developed some of these questions and another forum member OrphanedHawk developed some of them. I combined them into a set of questions and they are on my journals. I'll send you the link in a minute.
Advocate1955
Hello Randy,
Thank you so much for your help again. You have been so helpful to me I just wish I could give you a hug to show my appreciation. You have relieved a lot of the anxiety I have been having of the unknown and feel much better about my situation after reading your comments. I am taking your advise about seeing a hepatologist at a transplant center and I will be asking for a copy of all my lab results including my RA results along with copies of my ultrasound and CT scan. I was prepared for the worst and hoping for the best. I feel Im in the middle of both and Im ok with that. I think Im going to go and take a much needed nap now. Thanks again!
Mona
Thank you so much for your help again. You have been so helpful to me I just wish I could give you a hug to show my appreciation. You have relieved a lot of the anxiety I have been having of the unknown and feel much better about my situation after reading your comments. I am taking your advise about seeing a hepatologist at a transplant center and I will be asking for a copy of all my lab results including my RA results along with copies of my ultrasound and CT scan. I was prepared for the worst and hoping for the best. I feel Im in the middle of both and Im ok with that. I think Im going to go and take a much needed nap now. Thanks again!
Mona
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Enlarged spleen (splenomegaly) is consistent with portal hypertension which has also resulted in developing varices (enlarged blood vessels). When esophageal varices are discovered, they are graded according to their size, as follows:
• Grade 1 – Small, straight esophageal varices
• Grade 2 – Enlarged, tortuous esophageal varices occupying less than one third of the lumen
• Grade 3 – Large, coil-shaped esophageal varices occupying more than one third of the lumen
The esophageal varices are also inspected for red wheals, which are dilated intra-epithelial veins under tension and which carry a significant risk for bleeding. The grading of esophageal varices and identification of red wheals by endoscopy predict a patient's bleeding risk, on which treatment is based. A question for your doctor is what grade do you have? What are the risks of a bleed? This is probably noted on the endoscopy report which you should also obtain a copy of.
Common treatment for non-bleeding varices include:
• Drugs called beta blockers, such as propranolol and nadolol, are used to reduce the risk of bleeding.
• A rubber band can be placed around the veins during an EGD procedure. This is also called Banding.
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Cirrhosis is divided into two stages: Compensated and decompensated.
• Compensated cirrhosis means that the body still functions fairly well despite scarring of the liver. Many people with compensated cirrhosis experience few or no symptoms.
• Decompensated cirrhosis means that the severe scarring of the liver has damaged and disrupted essential body functions. Patients with decompensated cirrhosis develop many serious and life-threatening symptoms and complications.
Major symptoms of decompensation include:
Jaundice
Bleeding varices
Ascites
Edema
Hepatic Encephalopathy
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“Do doctors usually remove the spleen when it is enlarged?”
The spleen has the ability to enlarge more than twice its size. Complication of an enlarged spleen are: lowered platelet count and compromised immune system. Splenomegaly is common in all persons with portal hypertension, rarely is a splenectomy performed. Portal hypertension is a direct result of your cirrhosis.
“What important questions should I be asking him that will be helpful to me?”
Talk to him about your treatment options. At this point your HCV can no longer be left untreated. Your cirrhosis will continue to advance until you achieve SVR. Finding out your MELD score is a good idea. I am hoping you are in the early stages of cirrhosis (compensated), based on the symptoms you have mentioned and your spleen being only slightly enlarged this is good. I still strongly suggest a referral to a transplant center would be well worth your commute for the best possible outcome. In the event your cirrhosis continues to advance and transplant is needed you will already have established your medical history, blood labs and imagining tests along with a relationship with your doctor(s) and the TP center.
I hope this helps you out, good luck.
Randy