Esophageal varices

I finally got in to see my GI and he says I have stage 4A. He says I am fairly well compensated for now and might improve with good diet and quitting alcohol. He said at my stage I am not anywhere near needing a transplant. He also said that treating the HCV is out of the question due to the stage of my liver disease, he will not treat cirrhotics due to severity of the treatment, low success rate and the possible length of treatment being up to 72 weeks. I was ok with that because I am not sure I would tolerate treatment at this point anyway.

Scheduled me for esophageal endoscopy and recommended a colonoscopy at the same time since they were putting me under. I declined the colonoscopy, which seemed to upset him. But I left feeling pretty encouraged and ready to work on getting myself healthier.

Following the procedure I was still very sedated when I was released. Doc explained that he had banded 3 vessels and I would be scheduled for another procedure in 4 weeks, and thereafter until they got all of them banded. This was a surprise to me, I didn't know it had to be done that way. Then he told my husband that I needed the colonoscopy if I ever want to be put on transplant list. They handed me a paper that said take it easy today and return to normal activities and diet tomorrow. When I got home the pain started hitting me bad, felt like I was trying to swallow a block of wood and it was not constant but like spasms that spread across my chest.

When it got so bad the next day, I called him and he said the pain was normal and the vessels he banded were very large and potentially catastrophic and the pain might last until they "drop off." And he also said I was supposed to be on clear liquids for the next few days. Now, is this normal that they would just neglect to tell someone all this? Or is my experience unusual? Should I expect this every time I have this procedure? And how many times does it usually take to get all the enlarged vessels taken care of? Hope someone with experience can explain this since my providers don't seem to think it is important to keep patients informed. grrrr

I agree with Connie...you should have the colonoscopy at the same time of your next procedure, in 4 weeks. A colonoscopy is one of the tests that they request during the transplant evaluation process.

Did you ever know that you had enlarged esophageal varices, prior to your endoscopy?

A clear liquid diet is recommended after an endoscopy and its normal for your throat to feel sore and uncomfy, following the procedure.

I hope your feeling better

Cannot remember name of drug, starts with L, but it is a prescription that helps with spasms. I will look for name and post, it should help make you more comfortable.

Thanks! I'll ask him about it next time.

The first time I had an endoscopy, I experienced the same pain that you're describing. I didn't have a sore throat and really wanted to eat, but shortly after swallowing I would get an intense pain that put me off my next mouthful. It definitely felt more like it was in my chest than in my throat. I think the Omeprazole (or other PPI) helps with this - it certainly did for me. It gets easier the more banding you have done, although I haven't been lucky enough to get a GA for any of mine - only sedation.

Jamie

Hi Barry, I did question him about not treating and he said he personally would not do it because the protocol is that cirrhotics are not eligible. He acknowledged that some doc's disagree. I have an appointment at Barnes in St. Louis in Oct and he said I might get a different opinion from the hepatologist there. My genotype is 1-a.
He also said that I would have to be 6 months alcohol free prior to anyone considering tx, so waiting for the new drugs is likely my best option anyway.

Right now I am feeling really down about the varices, as it sounded like there are a significant number and they are quite large. And I am questioning if he was correct in his staging as my symptoms seem to be nearer to a 4b than 4a from what I read. He did not even mention a MELD score.

Like I said, I left the first appointment feeling somewhat encouraged, but the varices have me scared that things could start to go downhill a lot quicker than I thought. And I am not feeling very well about the Dr/patient relationship with this particular doctor. He seems to not care much about communicating anything unless I ask him specific questions. In fact he questioned me about why I wanted to know about certain things when I asked him questions. The lack of communication regarding complications and after care when I had the varices banded really upset me. I also felt like the surgi/center was rather negligent for releasing me when I was so heavily sedated and complaining of pain. I slept for 28 hours and when my husband got home from work the next day he could not wake me until he started shaking me and slapping at my face. He was kind of frightened by that. I am just hoping that when I get in to the hepatologist they will be more patient centered than what I have experienced so far.

           i do agree with you on the 4b status.  early stage has few complications, so my feeling is complete cirrhosis.  you are not ineligible because your cirr. its the alcohol.  you cant tx right now, so take care of your medical issues,   there will be so many treatments coming out inthe next 2 years that hep c as we know it will be history.  the most important thing will be to make sure that nobody falls thru the cracks and be too sick to treat. 

                                 all the best    barry

                                     

One very good reason: Hep C, left untreated, invariably leads to liver cancer. Due to your present stage, that would be the next thing to happen. I've had HCC twice and am lucky to be alive. I have a gut feeling that I have it again, but won't find out until after an MRI with contrast on the 21st. If I am still free of HCC, I will push for treatment (any kind) ASAP.

Hugs,
Connie

DD, that's very sweet of you. Wishing you a Happy Birthday in advance!

On some other forums and my e-mail, I am known as DancingDigits, so I automatically think a post addressed to DD is for me. The name comes from my 15-year career as a medical transcriptionist.

Hugs,
Connie

LOL, Sandia. If you look on Google, there are several people using that name.

Hugs,
Connie

I have had banding 3 times for esophageal varices. Each time was an emergency situation caused by vomiting blood. Its not fun, so definately get them banded early if possible. I have never suffered any pain afterwards, even on the big ones. If a trained endoscopy specialist isn't doing the procedure, that might be the problem. (There are also colonoscopy specialists).

Luckily I see a wonderful hepatologist at an excellent hospital located in a city with more hospital beds per square mile than people (Boston, and just kidding, but there are a dang lot of hospitals there!). After every procedure I recieve the results in the mail, explaining what they found, did, and prescribe. I have access to my blood tests within a few hours, and always have everything fully explained, especially what to do after a procedure. Occassionally, my Hep will call me to discuss tests or results or explain options and new procedures.

It makes me sad when I read about people who receive sub-par care, and I most strenuously suggest you immediately switch to a Hepatologist, ask for explanations and insist on learning your results, and what they mean. You owe it to yourself. Best of luck!

-K

I am on the verge of tears again today because I am so frustrated with this situation. The pain is still there, not nearly as bad as it was, but I have a constant feeling like there is a lump stuck somewhere down there and every bite I take seems to cause pressure like my esophagus is trying to push it back up. I called this morning to ask if this is normal and find out how long I can expect to heal. The GI assistant happened to call me to schedule the next endoscopy so I explained it to her and she said she had never heard of any problems like this before and of course threw in that it might be that I was overreacting because I can't handle pain. I told her that I was not very happy with the treatment I got in recovery, that even though I was complaining of pain no pain assessment was done, and they did not give me the correct after care instructions.

I am new to being a patient, but I have been a caregiver for others in the past and this is not how they were treated. She said she would pass that information on to the surgi/center. Not that she seemed to care, just pass it on.

My PC has always sent me a copy of my lab reports, but the Hematologist and GI have not bothered to even tell me what they tested for or share the results. I guess when I talk to him when he calls about the pain I will have to request those. I know I have had 3 labs done that I never heard anything about. I think he operates on the belief that I don't need to know anything because he is the doctor and I'm not.

I called Barnes again today and requested to be put on a list for cancellations, so if an earlier apt comes up I might be able to get in there sooner than Oct. Maybe I should calm down and wait, but I feel like I need to be more proactive and won't get much help until I find someone who cares to keep me informed and involved in my treatment. thanks for listening!

David, Dr. Ukomadu at Brigham Woman's. Its been descibed as a more intimate version of MGH, they both share the same residents and my Doc can admit at MGH as I am sure some from there can admit at BWH. It just isn't quite so large.

I go to the transplant center at MGH, since BWH doesn't do livers, they do other types of transplants.

-K