Guest guest Posted May 15, 2001 Report Share Posted May 15, 2001 jen, hi this is greg.i just read your e-mail and it seems that we have had almost the exact same problems.kinda weird when i read it,but i have been banded 11 times and was one step away from TIPS when i was in a coma but i came out of it and stabilized enough to put it off.but i have had no bleeds for 5 months and i got my blood test results a couple of days ago and they are still normal.but your e-mail has me wondering just how bad my liver is.my GI said it is still hard to tell how much damage i have but my LFT are very good.i hope he is being honest with me about everything because he has never told me how long my liver would last.i have asked but he said it is hard to say.i was really looking for something as in yrs. but he wouldn't say.i hope he just isnt trying not to scare me or something! are there any specific tests that can show the amount of damage? i have had CT scans and abdominal scans but i dont think that shows the extent of the damage.i might go crazy before i find out!!!!!!!!!!!!!!!!! Greg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2001 Report Share Posted May 15, 2001 Larry, I was diagnosed with esophogeal varacies almost a year ago. Two major bleeds resulting in two 5 day hospitalizations and 9 outpt surgies rubber banding/scholero therapy done during a 6 month period. I recently had a TIPS shunt placed in my liver and have been bleed free for almost 5 months now. I am on disability and yesterday returned to work part time and am feeling the best I have felt in years. The shunt has done wonders for me. I have cirrhosis. Am a childs level A and am told I could still have another 5 years or more with my liver as long as my esophogeal varacies are under control. I am not on the list for a transplant at this time as I don't meet criteria with regards to lab values etc.... when the time comes I suppose it would have to be an emergency situation or hopefully years from now. Feel free to ask any questions and welcome to the group. Jen On Tue, 15 May 2001 12:18:26 -0700 (PDT), wrote: > Sorry, Joanne, you can tell I am new. Thanks for the > link. I am currently active in two HH lists, one > sponsored by the American Hemochromatosis Society. I > just wanted to get some feedback from a group that > might have more experience with cirrhosis and > esophageal varices. Thanks again. > > Larry > > > --- Jeff Cathcart <JJCATHCART@...> wrote: > > http://www.americanhs.org/prevention_mag_12_99.htm > > This is a good article > > on Hemochromatosis. Joanne (not Jeff....he is my > > husband ; ) ) > > Re: [ ] Warning Signs of > > Esophageal varices > > > > > > > Thanks for the reply, Jeff. My wife has > > > hemochromatosis resulting in cirrhosis. Been > > having > > > some chest pains (she is under the care of a > > > cardiologist, he says it's not cardiac??). I knew > > > that typically varices were " silent " but thought I > > > would check with this group to get beyond the > > medical > > > literature to some personal experiences. > > > > > > Thanks again > > > > > > Larry > > > > > > Wife, > > > C282Y/C282Y > > > Dx 1998 > > > Starting ferritin: 6160 > > > 101 phleb and counting > > > Most recent ferritin: 67 > > > Beta Thalassemia Minor (Hgb 8.0-9.5g/dL) > > > > > > > > > --- Jeff Cathcart <JJCATHCART@...> > > wrote: > > > > Varices give no " warning " ......you MAY have > > little > > > > bleeds....but the only > > > > way to find out for sure is to have an endoscopy > > > > done. They insert a tube > > > > down the throat after spraying it to numb it > > then > > > > take pictures and > > > > ....look about.....Painless and well worth it.a > > > > bleed is scary. Varices > > > > are dilated and fragile blood vessels in the > > > > esophagus. They are caused by > > > > the increase of pressure within the portal vein > > > > (venous system). Because > > > > they are so fragile they may bleed from > > something as > > > > simple sneezing, > > > > coughing, or vomiting. They occur most often at > > > > night when we are sleeping > > > > as for some reason the portal pressure increases > > at > > > > night. Therefore if you > > > > are put on a blood pressure med ..such as > > > > propranolol and you are only to > > > > take one a day..that one should always be taken > > > > before bed! (Personally I > > > > take 3 a day..but that is me and my docs) One > > must > > > > remember that portal > > > > pressure can occur even if you do not have high > > > > blood pressure..so can not > > > > be discovered by blood pressure tests.mine has > > > > always been or low....before > > > > Propranolol.mine was about 110 to 120 over 80. > > > > > > > > > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 Hi Greg, I guess I would have to say that my Gastro has determined the length of time my liver has as a result of ultra sounds. I have NEVER had a liver biopsy as my clotting factors put me at high risk for bleeding out during the procedure. Some would say that I have not had an accuarate diagnosis as a result of NOT having a biopsy but others will argue that a diagnosis of AIH can be made when the patient responds to medication treatment (which is what happened with me). My Gastro tells me that not everyone with cirrhosis will develop esophogeal varacies even those he has seen with end stage cirrhosis, and then there are those of us who have them in the early stage. He said it has to do with the placement of the scarring on the liver. To imagine the liver with a string wraped around it...imagine pulling that string, some threads will constrict and tighten more then others (like a ball of thread) my scarring just happens to be near the portal vein which is causing the problem. I did the beta blocker method, the banding, the scolerotherapy with only minimal results during 6 months. If I understand and read my referral to radiology for the TIPS shunt it indicated that I met criteria for the procedure as I would be a good candidate for liver transplantation in the future, my childs scoring was only an A rating, higher scores may or may not be a factor in determining eligability for a TIPIS shunt (I am not sure of this) and that all other attempts to control the bleeds had been exhausted. Once I got the shunt I thought I would be on lactulose and the protein in my diet restricted. My gastro says NO and that my liver needs that nutritional value. When and if I begin to suffer symtpoms of encelophathy then I will go on the lactulose syrup to control it. You might want to ask your doc to tell you what CHILDS level category your liver falls into. I assume he/she would have to do this anyway in order to asses your qualifications for a TIPS shunt. You say your LFT's are pretty good, and mine are also with mediation. The standing order for me today is a two year follow up with radiology to balloon open the shunt as it starts to close in time. Ultra sounds every 3 months to evaluate blood flow and velocity. I now only see my Gastro once every 3 months for med management etc. Prior to the shunt I was told I had 1-7 years left before I would need a transplant. Post TIPS shunt my report is 5 (maybe even close to 10) years before I would need a transplant. Are you on any disability? I quit working part time one month after my shunt. I have been taking it easy and getting lots of rest over the last 4 months. I returned to work part time 2 days ago, selected an employer within walkin walking distance (2-3 mins) from home. Evenings and weekends off, casual attire and a pleasant and fun atmosphere. I hope and pray I can continue to be bleed free and that going back to work won't put me at any serious health risks. On Wed, 16 May 2001 01:07:02 EDT, wrote: > jen, > hi this is greg.i just read your e-mail and it seems that we have had almost > the exact same problems.kinda weird when i read it,but i have been banded 11 > times and was one step away from TIPS when i was in a coma but i came out of > it and stabilized enough to put it off.but i have had no bleeds for 5 months > and i got my blood test results a couple of days ago and they are still > normal.but your e-mail has me wondering just how bad my liver is.my GI said > it is still hard to tell how much damage i have but my LFT are very good.i > hope he is being honest with me about everything because he has never told me > how long my liver would last.i have asked but he said it is hard to say.i was > really looking for something as in yrs. but he wouldn't say.i hope he just > isnt trying not to scare me or something! are there any specific tests that > can show the amount of damage? i have had CT scans and abdominal scans but i > dont think that shows the extent of the damage.i might go crazy before i find > out!!!!!!!!!!!!!!!!! > > Greg _______________________________________________________ Send a cool gift with your E-Card http://www.bluemountain.com/giftcenter/ Quote Link to comment Share on other sites More sharing options...
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