Aa
I'm just so angry!
Is anyone else angry with the way they have been handled by Doctors and Specialist. It's like they're afraid to tell you the truth, that you're slowly and painfully dying of cirrhosis of the liver as a result of Hep C. I have gotten such a run around from Hepatic Specialists, Urologists, Internal Specialists, etc., etc., and it finally took an Allergy specialist to be able to tell me that the reason that the palms of my hands are always so red is because of Palmar Erythema. (I was only seeing him to be tested for Laytex allergies). He told me it was related to liver disease and to go home and "Google" it. Well, I've been to Dr.'s my entire life who have said it was rosaecia, circulatory problems, etc. I have found out more using the web than I have through any Doctor!!! And I'm really angry that not one Doctor has the guts to say to my face that I am dying, in spite of CAT scans showing massive areas of cirrhosis of the liver. The Hepatic specialist told me, during a follow-up, when I asked him what the grayish mass was in my liver and he suddenly went on the defensive! Mass means Cancer and this is not Cancer, he screamed at me. Is it related to the Hep C? I asked him and he replied, perhaps. He told me that because of my age, medical conditions, the fact that I'd had Hep C for over 35 years, that there was no point in even doing a biopsy on my liver, because I wasn't a candidate for any of the treatments and they would only make me sicker. But he never had the "balls" to tell me that I'm slowly wasting away from severe chronic cirrhosis of the liver!!! I got a whole bunch of information for my Primary Doctor about Vitamin deficiencies, etc. and try to always give her any info that I find on the web.Maybe she can start supplementing with some vitamins and I'll feel better. I don't have any appetite and even when I eat I still lose weight. I really apologize for announcing myself to this community this way. I really needed to vent and would like to know how others have been treated. Prayers & hugs to all of you
Yes, I was done at The Starzl Transplantation Institute in June 2000.
I have read a lot about Thomas Starzl but the name Schroter isn't familiar to me.
If you haven't read "The Puzzle People" a sort of autobiography by Thomas E Starzl, I highly recommend it. I will have to take a look and see if Schroter is mentioned.
I would guess that if those people were liver transplant recipients then Starzl was probably involved in their surgeries.
Yes that is very encouraging. I don't expect to make it that long but you never know. I didn't think I'd be here now. If I would have known I was going to live this long I would never have bought that extravagant car in 2001. I still have it though and I guess that's a good thing.
Mike
I have read a lot about Thomas Starzl but the name Schroter isn't familiar to me.
If you haven't read "The Puzzle People" a sort of autobiography by Thomas E Starzl, I highly recommend it. I will have to take a look and see if Schroter is mentioned.
I would guess that if those people were liver transplant recipients then Starzl was probably involved in their surgeries.
Yes that is very encouraging. I don't expect to make it that long but you never know. I didn't think I'd be here now. If I would have known I was going to live this long I would never have bought that extravagant car in 2001. I still have it though and I guess that's a good thing.
Mike
Sorry about my comment about the biopsy being the gold standard with the implication, of course, that it was necessary. That was misleading, or simply false, as I can see now. Thanks for the correction and enlightenment.
It just did not seem right to me to be told you have cirrhosis and there's nothing to do, and the implication that 56 is too old for TX, without more information. It sounds like a discussion about the possiblity of transplant should have followed. Or at least, as Zepora says, have "the 'balls' to tell me that I'm slowly wasting away from severe chronic cirrhosis of the liver!!!"
Zepora: I hope you get another doctor and that something works out for you.
Brent
It just did not seem right to me to be told you have cirrhosis and there's nothing to do, and the implication that 56 is too old for TX, without more information. It sounds like a discussion about the possiblity of transplant should have followed. Or at least, as Zepora says, have "the 'balls' to tell me that I'm slowly wasting away from severe chronic cirrhosis of the liver!!!"
Zepora: I hope you get another doctor and that something works out for you.
Brent
Thanks for your reply.I have always believed that every medical procedure or tx should pass this simple test: Is it both reasonable and necessary (appropriate) ? I'm sure I co-opted this view , most likely from a doctor that I have read or possibly talked with in the past.
Weren't you tp'ed at Starzl's Liver Palace and Emporium ? in PA ? I just read the obit of Dr Schroter another tp pioneer that mentored Starzl at one point. Both were great doctors who started the very earliest tp programs (CO and PA) from scratch that grew to national prominence and served as models for future tp centers. On the topic of tp, we just celebrated someone's 30th anniversary since their tp. Another in attendance was at 26 years post-tp. Its fantastic to see such long term survival occurring in people.
Mr Liver
Weren't you tp'ed at Starzl's Liver Palace and Emporium ? in PA ? I just read the obit of Dr Schroter another tp pioneer that mentored Starzl at one point. Both were great doctors who started the very earliest tp programs (CO and PA) from scratch that grew to national prominence and served as models for future tp centers. On the topic of tp, we just celebrated someone's 30th anniversary since their tp. Another in attendance was at 26 years post-tp. Its fantastic to see such long term survival occurring in people.
Mr Liver
Thanks to all of you for your feed-back. The Gastroenterologist that I saw was also a Hepatologist, but I guess I should still get a second opinion. I do believe that he honestly felt that I had been put through enough pain and suffering, therefore didn't want to do the biopsy. My red palms only started after the transfusion, sorry 'bout that confusion. I always thought it was from wearing gloves at work. I have lost a lot of weight, My IBS is steatorrhea, my muscles have atrophied, I have never been a drinker and don't drink now. This is not cirrhosis due to alcoholism. I have small nodules around my eyelids and also suffer from blepharitis and I'm losing my hair, the spinal stenosis makes it difficult to position me for procedures or other surgeries, I've had so many surgeries and tests that they can't find a vein on my body and have to insert a PIC line....and on and on...... but I really appreciate all your help and will try to get some of my stats and catscan results posted as soon as I can sort through all my medical records. Whew! Take a breath!!!
Hugs & Prayers & Thanks
Hugs & Prayers & Thanks
Jim took the words right out of my mouth because I was going to say, "by "hepatic specilist" do you mean a hepatologist, or a gastro?"
Because the deal is that gastroenterologists do NOT know nearly enough about your liver to treat someone who has liver complications due to hepatitis c and needs real information about their liver status AND an action plan, and a general practitioner or internal medicine doctor knows even less.
It's kind of like hiring a general contractor to work on the electrical system in your home instead of a licensed electrician. While the gc may have done some electrical work just by default, he won't know nearly as much about it as an actual electrician would. So you need to find a hepatologist. Preferably at a teaching hospital.
And Mr. Liver brings up a good point about a biopsy perhaps not being done in some advanced cases, but only a hepatologist should make that decision for you, and you haven't seen one yet. Also. A mass does not have to be malignant. It can be anything from an adenoma to focal nodular hyperplasia to an hemangioma. There can sometimes be complications from some of these benign masses if they get too large, but until you have seen a hepatologist and have more info, don't jump to the worst case scenario.
You say that nobody has told you that you have cirrhosis so I am wondering where you are getting the information? Is it from your copy of the catscan report. Specifically what does the report say if you wouldn't mind posting the exact language of the conclusion?
Because the deal is that gastroenterologists do NOT know nearly enough about your liver to treat someone who has liver complications due to hepatitis c and needs real information about their liver status AND an action plan, and a general practitioner or internal medicine doctor knows even less.
It's kind of like hiring a general contractor to work on the electrical system in your home instead of a licensed electrician. While the gc may have done some electrical work just by default, he won't know nearly as much about it as an actual electrician would. So you need to find a hepatologist. Preferably at a teaching hospital.
And Mr. Liver brings up a good point about a biopsy perhaps not being done in some advanced cases, but only a hepatologist should make that decision for you, and you haven't seen one yet. Also. A mass does not have to be malignant. It can be anything from an adenoma to focal nodular hyperplasia to an hemangioma. There can sometimes be complications from some of these benign masses if they get too large, but until you have seen a hepatologist and have more info, don't jump to the worst case scenario.
You say that nobody has told you that you have cirrhosis so I am wondering where you are getting the information? Is it from your copy of the catscan report. Specifically what does the report say if you wouldn't mind posting the exact language of the conclusion?
Thank you for that bit of information. I had no idea that a biopsy was contraindicated under such circumstances. Thanks for explaining that so well and adding to the collective knowledge base. That is good to know.
Trish
Trish
Yes. Find another doctor. Someone who will help you find your exact health status at this time. Then you will know if you can treat or not. How do you know you have cirrhosis??? I am 56 and had the virus for 38 years before learning I had cirrhosis.
You say you've had red palms your entire life? Well it can't be related to cirrhosis because you would be here now if it was.
Compensated cirrhosis. Are you decompensated? What are your symtoms. There is also a transplant if you can't do treatment or it doesn't work for you.
Don't give up hope just because you have had a few bad docs. There are a lot of good one out there. But you have to stand up for yourself and don't take no for an answer.
Good luck.
Hector
You say you've had red palms your entire life? Well it can't be related to cirrhosis because you would be here now if it was.
Compensated cirrhosis. Are you decompensated? What are your symtoms. There is also a transplant if you can't do treatment or it doesn't work for you.
Don't give up hope just because you have had a few bad docs. There are a lot of good one out there. But you have to stand up for yourself and don't take no for an answer.
Good luck.
Hector
I agree with you completely and it's good to see a well stated view that is contrary to the general consensus here that a biopsy is always appropriate.
Mike
Mike
Zepora, general health, liver stage, concomitant illnesses, age, being overweight, etc, all can play a part in a doctor's decision to offer treatment for HCV. The drug makers recommend against treating those with advanced liver disease, so he may be influenced by this as well. HCV tx in this population has been known to push the patient into decompensation, or worsen already existing symptoms, so that too, may play a part in a doctor's decision, particularly if the doctor isn't a hepatologist accustomed to treating this subset of patients.
Magnum- Biopsies are not always necessary and are contraindicated in several settings. When a patient presents with enough clinical signs of cirrhosis,e.g., palmar erythema, varices, ascites, spider angioma, wasting, a shrunken hard liver upon palpation,etc. etc, a biopsy is not needed and would only expose the patient to unnecessary risk . It's especially not needed in this particular case considering the CAT scan zepora had which showed cirrhosis.
Two other situations where a biopsy is not necessary or recommended are:
Someone who is known to have been recently infected.
Someone who is going to treat regardless of biopsy outcome.
Mr Liver
Magnum- Biopsies are not always necessary and are contraindicated in several settings. When a patient presents with enough clinical signs of cirrhosis,e.g., palmar erythema, varices, ascites, spider angioma, wasting, a shrunken hard liver upon palpation,etc. etc, a biopsy is not needed and would only expose the patient to unnecessary risk . It's especially not needed in this particular case considering the CAT scan zepora had which showed cirrhosis.
Two other situations where a biopsy is not necessary or recommended are:
Someone who is known to have been recently infected.
Someone who is going to treat regardless of biopsy outcome.
Mr Liver
Dont get me started on ANGER& FRUSTRATION with docs.
It is a really good thing that nuclear bombs are hard to get... there would be a few less buildings in Pittsburgh UPMC.
good luck with your search for treatment.
It is a really good thing that nuclear bombs are hard to get... there would be a few less buildings in Pittsburgh UPMC.
good luck with your search for treatment.
I agree with all that the others have written. I just want to say that I understand a little about how difficult it can be emotionally to be sick and feeling mistreated / abandoned by the doctors that you depend on.
Do you have anybody that could help you travel to appointments and talk for you? It sounds like you really need some kind of support network to see you though this. Please try and get the help you need.
Wishing you well,
dointime
Do you have anybody that could help you travel to appointments and talk for you? It sounds like you really need some kind of support network to see you though this. Please try and get the help you need.
Wishing you well,
dointime
I can't believe all the replies that I received and I'd like to thank you all for your support. You're right, I haven't had 2nd or 3rd opinions from other Hepatologists, and the one that I did see was really an GI Specialist. My problems is that I've had so many surgeries in my lifetime and my medical history is so complicated that no Dr. seems to want to take on my case. I have to travel to see Specialists, which makes it really difficult and exhausting. I just get so choked up when the Dr.'s say that there's nothing they can do for me that's not going to make me sicker than I already am that it's hard to stay proactive. I just don't have the energy for all the arguments and opinions, not to mention the traveling, etc. I don't want any more pain, but I'd like a better quality of life!
Thanks to all for your support and I'll keep you posted on any news.
Thanks to all for your support and I'll keep you posted on any news.
I agree with the folks above.
You really do need to find a good hep doctor who will take the right steps with you to a. first determine if you have cirrhosis for sure (biopsy) b. find a course of treatment that can save your life if you do.
Cirrhosis doesn't have to be a death sentence and I would really hesitate trusting any doctor who would even infer such a thing.
Most all of us in here have had hep for 20 - 30 years. Most of us are not young. Most of us have complications from other illnesses or problems. But you don't see us "wasting away" of a disease.............instead we are here to fight to kill the disease and repair our livers if possible!!!!
Any doctor that would not encourage you to do so..............doesn't seem like much of a doctor to me. Isn't that like what their main job is?
You really do need to find a good hep doctor who will take the right steps with you to a. first determine if you have cirrhosis for sure (biopsy) b. find a course of treatment that can save your life if you do.
Cirrhosis doesn't have to be a death sentence and I would really hesitate trusting any doctor who would even infer such a thing.
Most all of us in here have had hep for 20 - 30 years. Most of us are not young. Most of us have complications from other illnesses or problems. But you don't see us "wasting away" of a disease.............instead we are here to fight to kill the disease and repair our livers if possible!!!!
Any doctor that would not encourage you to do so..............doesn't seem like much of a doctor to me. Isn't that like what their main job is?
Have you been to a liver specialist (hepatologist) as opposed to a gatroenterologist? If so, have you been to more than one liver specialist for a second opinion? Has any of your doctors suggested a liver biopsy to confirm cirrhosis?
You should know that age and even cirrhosis do not necessarily exlude treatment. We have had a number of people here -- older than you -- who have treated successfuly, and some have had cirrhosis. And while people can die from cirrhosis, it doesn't necessarily have to be the death sentence that you suggest.
It's easy to get angry with doctors these days as the standard of care is often not up to par. Best way to handle that is to move on and find another doctor who hopefullly will do a better job. In your case you only want to see a liver specialist (hepatologist) who can be found at your larger, teaching hospitals. Any travel would be well worth the time.
-- Jim
You should know that age and even cirrhosis do not necessarily exlude treatment. We have had a number of people here -- older than you -- who have treated successfuly, and some have had cirrhosis. And while people can die from cirrhosis, it doesn't necessarily have to be the death sentence that you suggest.
It's easy to get angry with doctors these days as the standard of care is often not up to par. Best way to handle that is to move on and find another doctor who hopefullly will do a better job. In your case you only want to see a liver specialist (hepatologist) who can be found at your larger, teaching hospitals. Any travel would be well worth the time.
-- Jim
Vent, vent and vent some more, anytime that is what we are here for!
Brent said it all, try to stay optimistic and I hope you are feeling better soon. It is very frustrating just having a Hep C diagnosis and those that we tell and shouldn't have told in hindsight etc. the lack of knowledge from general public to health care providers that seem to keep us in the dark (mine did, they were not that informatative). I learned everything about side effects and over the counter remedies for everything on this forum. It truly has been a blessing.
Peace and Love,
Trish
Brent said it all, try to stay optimistic and I hope you are feeling better soon. It is very frustrating just having a Hep C diagnosis and those that we tell and shouldn't have told in hindsight etc. the lack of knowledge from general public to health care providers that seem to keep us in the dark (mine did, they were not that informatative). I learned everything about side effects and over the counter remedies for everything on this forum. It truly has been a blessing.
Peace and Love,
Trish
The age thing is hogwash. Also ,I am not sure how he can say you have cirrhosis without a biopsy. That is the gold standard for staging liver disease. Sounds like a GP who is not up on the disease. You need to see a hepatologist and get the whole story. It might not be as bad as you imagine. See one, and don't walk away until all your questions are answered. I am the same age as you and have had a liver transplant and am now treating for Hep C. So I am pretty sure that your age is not the issue. Treatment may spare you the need for a transplant. Keep studying; the more you know the better off you will be.
Best luck to you. Hope to hear an update with you feeling better!
Brent
Best luck to you. Hope to hear an update with you feeling better!
Brent
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