Varies in the Esophagus

[wrecksm]

I am a 72 year old husband, father, grandfather, and great-grandfather suffering from Cirrhosis of the Liver.  This condition was diagnosed in 1994 0r 5 following the discovery of Hepatitis C.  It was suspected that I acquired the Hep. C as a result of a 1968 auto collision requiring a blood transfusion, as the blood screening was almost non-existant back then.  I however was a pretty heavy user of alcoholic products from age 20 to 39 years of age.  I completely went the dry road in 1972.  So I have always wondered if my Hematologist was really accurate.  I had a liver biopsy done that year of discovery revealing scaring.  Since the hep. C seemed to lay dormant at that time and for several years to follow, I chose not to take treatment.  Since the first of this year, my condition has worsend.  I have been fighting fluid retention, abdominal pain, diverticulosis, and other things associated with one in my condition.  Recent exams (colonoscopy, upper GI, a CT & EGD) revealed no cancer or polyps at this time.  The spleen is continuing to enlarge, and VARIES were discovered in my esophagus, which my specialist wants to check periodicly.  They are not too large at this point. I am hoping to have someone explain the sugnificance of VARIES and what part they play in an over all prognosis.  I am also having increasing HICCUPS, causing some difficulties and continue needing Ondansetron for my daily nausea.  I will thank you now for any replies.  My concerns are starting to get the best of me.
Rex

[Kanzou]

Jim, You're welcome. I visit this forum quite often and have gained a wealth of information from you and others, especially yours lately. I don't post nor reply often because I'm not tx'ing and haven't been on any type of tx. I'm just a post liver transplant (tp) patient living w/HCV and detected HCB antibodies.

My background, as you once requested in an earlier post, is: Age, mid 50's, geno 1a, born in Honolulu, Hawaii, raised since 8 yrs old in Los Angeles, residing in San Jose, Ca, ex senior engineer in the telecommunications wide area networking industry. No drugs, no drugs via needles either, no heavy booze unless you count college days, no drunken stupors...well maybe one or two. Do not smoke nor drink alcohol since 2000. HCV diagnosed in late 2003. Same time they found my HCC.

I was scheduled to meet the HCV program director @ UCSF, here in No Cal, this Oct but that has been put off until early Dec. From what I understand she is volunteering her services to the Katrina survivors. I can wait, they can't.

My health plan is with Kaiser Permanente who jobs the liver speciality out to UCSF and UCLA in southern Calf. I had my tp performed @ UCLA. All services are covered 100% except for piddly deductables here and there.

As far as starting tx, I'm not any time soon. I like the progress of the NM283 trails but will wait out the storm. I just don't like nor want to put myself through the interferon/ribaviron tornado either. With my suppressed immune system, I just don't know what the long term sides int/rib may cause to my body. This concerns me greatly.

Pre tp PCR RNA Quantatative was 8.5 mil. May 2, 2005 = 278,457. Sept 1, 2005 = 422,651 an increase of 144,194. Results of the remaining lab scores are fine (xcept ALT and AST). All within mid-level normal ranges. I get tested every month - CBC, AFP and liver panel. I get a biopsy every three months. Colonoscopy and endoscopy yearly. Because of my meds, I do, however, have elevated AST and ALT readings. Sept 1 ALT = 89 (range <36), AST = 46 (range 10-40). Ever since tp they kind of remain in this area - sort of like a buzzard hovering around fresh road kill. I've been told on numerous occassions that this is normal life after tp. Hmmmm. Do they see me as dead meat?

Pre tp is another story. This snapshot was taken in early November of 2003
Alkaline Phosphatase  = 172 U/L (range 47-137)
Biliribun Total = 1.4 mg/dl (0-0.3)
Alfa Feto Protein (AFP non-maternal) 452.9 ng/ml (0-15)
AST 11 U/L (10-40)
ALT 89 U/L <40
platelets around low 60's

This snapshot was taken in early Jan of 2004 (same lab)
Alkaline Phosphatase = 204
Bilirubin total = 2.5
AFP = 2238.9 <=== the big nasty growing REAL REAL fast
AST = 258
AST = 294

My tp came about due to a 3.1 x 2.7cm HCC lesion in the left lobe discovered in Nov 2003. It was .5cm from the portal vein and growing fast. By Jan of 2004 it grew half an inch. The potential of a rogue cell(s) or a mass of cells escaping out the portal vein and starting a new colony elsewhere was extremely high. The potential of it colonizing on my portal was even higher. Thus the rush to tp and not treat. Slowed the growth in early Feb 2004 by RFA (radio frequency ablation). They stick a needle like prong into you, press the handle, a claw comes out surrounding and grabbing the lesion and then they blast the lesion with microwave. Ala cooked tumor - well done please, not medium, do not serve rare. After the vicodine wore off I felt normal again. No itching and could finally sleep longer than 45 minutes. Man was I a happy camper. March 2004 the liver was yanked.

Currently, the surgeons don't seem alarmed about the HCV increase, but again, this is not their course of expertise either. They're the yankers not the treaters. They confer with the hepotologist specializing in HCV treatment. I know on several occassions my labs were presented to the UCSF HCV director for analysis and they say not to be alarmed cuz she isn't. This dr heads the HCV program for all of Kaiser No Cal too. Then Kaiser annoits a dr to direct their HCV program for specific regions, and so on. Oh yeah, my last bx in July was stage 1, no nothing everything else normal.

A few months ago, w/o UCSF's knowledge, I went for a second opinion and had my labs looked at by the Kaiser HCV program (they call it passport) director for my area. She too says not be alarmed and there is time to wait for tx. I wait now until I meet head on with UCSF in early Dec. to discuss treatment.

Ok, so where/how do I think I contracted the HCV?
1. Blood transfusion when I was 5?
2. Dirty dental novacaine needle?
3. Dirty medical tetnus needle?
4. Misquito bite(s)?

Dr's always ask "How do you think you contratced the HCV?". I have presented all four to both surgical teams - UCLA and UCSF (current) and at first get stormy stares. Sorta like how dare you question us, we told you its more than likely from the transfusion. When I inform them there take is unacceptable and for them to think about the high probability of 2-4 being a source, they eventually nod their heads. But never, never verbally do they concur with this theory. Are they afraid of dirty needle lawsuits? Maybe. As far as misquitos, if they can transfer West Nile virus from human to human, why not HCV? I don't know. Its a thought.

I'll be reading and watching the posts that all you wonderful support folks provide on this forum. You are the best!

[wrecksm]

Thanks New... appreciate your input.

and Jim,
To be perfectly fair, I want to tell you that my family DR. brought up the subject of advances in treatment for Hep. C patients around two years ago and tried selling me on the idea of giving them a go.  He said that there were some improved results coming out of these treatments.  But the fact that my original liver specialist back in the mid nineties painted this negative picture of treatment at that time, I put the ball in his court and asked him, given the same information he had just given to me and at my age at the time (early 60's), what he would be inclined to do?  He replied that he'd forgo the treatment.  Remember, I didn't really have any ill effects other than becoming more fatigue as time passed, and some infections (loss of immune system??)  The specialist released me to my family DR. and said that I did not need to return unless we thought it necessary.  That specialist is the one who ordered the ultrasound and liver biopsy back the, and I have not seen him again.  The family DR. and the VA liver specialist have been following my condition and running my blood work.  The reason I got involved with my VA Med. Ctr. was to avail myself to the veteran pharmacy for needed BP and other medicines, a very affordable Vets benefit.  The VA wants to keep monitoring my Varies once a year, and do my blood tests monthly, also check my stomach fluids annually.
I have set up an appointment with my family DR. to further discuss all of this concern, and will search the other opinion that you all recommend.
I thought that the tread that I visited yesterday had filled and was no longer useable?  I'll try to get a handle on the ground rules.  Thank everyone so much for their response.

[Kanzou]

New - I couldn't help but wonder why you stated "That transplant thing is not all its cracked up to be."

I would like to clear the air as a post liver tp patient (18 mos) and HCV'er. If a medical doctor says liver transplants cure HCV then he/she is a quack. If one read this somewhere, what a myth. HCV, as we know, is a blood born desease. The majority of the HCV lives and breeds in the liver and the majority of the virus goes out with the old liver during transplant. However, some do remain in the blood. The remaining HCV will attack the new liver in due time. How fast and how hard depends on how one takes care of their liver health post tp.
  
I consume anti-rejection meds daily (3 tiny pills day), not for the HCV but to prevent my WBC from attacking the new liver and causing the the body to reject the donor organ. In the near foreseable future I will be weaned of all medication. So lets remember, liver transplant are performed as a last chance for survival, not as a cure for anything.
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Rex - Here's the UNOS (United Network for Organ Sharing) link were you will find the teaching university hospital/medical center nearest to you for the liver and HCV experts.

http://www.unos.org/

1. Click on Go To Data
2. On the left click on State Data
3. Select your state
4. In Step 2, Choose Category, select Transplant
5. In Step 2, Choose Organ, select Liver
6. In the lower selections of Step 3 click on Transplant by Donor Type, Center

Best wishes.

[jmjm530]

Not always, but sometimes the bigger the degree, the bigger the as*hole. :)

-- Jim

[jmjm530]

That's a wonderful story of hope!

Rex,

It sounds like NewSoujourn -- while a little younger -- was in a similar place to yourself. Cirrhosis with Varisces. And I think her take on the VA and some doctors is correct.

No promises, but look around, talk to some more doctors and you just may find some real hope. I don't see that with your current doctors.


New...womder if you could elaborate a little more on your "chronic heartburn", when you got it, when it went away and the symptons. I've been having a pretty bad problem with GERD/LPR from the get go. Not a pleasant combination with treatment.

-- Jim

[new-sojourn]

That transplant thing is not all its cracked up to be.  I have a friend who has an on and off series in the Seatlle Times(WA).

Jack Slater writes bout the whole experience.  Unfortuanately, his untreated hep c-1a-attacked his new liver and in less than 6 mos, he's back to a stage 3 and now has to treat and be on  anti-rejection drugs for the rrest of his life and we are both 3's now.  So transplants are not the answer always.