Cirrhosis of the Liver Community
Cleveland Clinic Appt / lupus & cirrhosis
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Cirrhosis is the end result of chronic liver damage caused by chronic liver diseases. The purpose of the community is to share support and information with Cirrhosis of the Liver patients and their loved ones. Topics in the community include: causes, clinical trials, complications, family issues, living with Cirrhosis of the Liver, prognosis, research, surgery, treatments

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Cleveland Clinic Appt / lupus & cirrhosis

Last week I had my first appt at the CC with Dr Barnes.  It took months to get in.  CC is awesome....the campus is something to see.  Kind of like Disney World but you're there for health issues.  Lots of shuttles...every dept runs smoothly.  Its really something to see.

Dr Barnes ordered labs, had 13 vials taken.  I'm a hard stick so that's always fun.  Most of my labs came back prety good.  EXCEPT I do have rheum arth, sjogrens, raynauds etc etc.  I have been telling my rheumy that I have luous but my bloodwork never showed it except for this time...and its SCLEROSIJNG LUPUS.  

I go for a cat scan next week.  This makes me so nervous.  I guess my thought pattern is.....what more will they find??  How bad will it be?  What else is going on?  I know Dr B mentioned something about "vascular" testing.

My Ultrasound in Aug showed mild hetergeneous echocencity and this past US in March showed hetergeneous coarse echotexture.  Two different drs read the US...  Dr Barnes had me bring in the cds but he didnt even look at them stating that the cat scan will tell us more.  (Guess that's what I'm afraid of).  I hope that my liver did not get worse in 6 months.  He was not concerned about the cysts.  

My latest labs have all been in normal range except for the ALT and AST which were just a few numbers above normal.  The CMP panel was all normal..protime, INR, etc all good.  

I'm still trying to come to terms with this disease.  I seem to always have something else going on.  

I see why a hepatologist is so important.  My gastro was content to just schedule a US 6 months to a year down the road.  He also wanted me to have a liver bx but the hep said no.  The gastro also scheduled another EGD in August and my hepatologist didn't want that done either.  Dr Barnes upped the beta blocker that my pcp prescribed for me.  Said it was too low...needed a higher dosage.  Dr Barnes ordered lots of labs so he could omit some diseases and go from there. My pcp and gastro did not.   The previous gastro did not order a beta blocker saying that they dont order them unless there is a bleed.  REALLY?  I know Hector mentioned in one of the earlier posts, that you dont want that first bleed...even though the gastro said to me "your varices will not bleed".  So, I made an appt w/ my pcp to get a beta blocker.  

My rheumy prescribes an oral fosomax..(osteoporosis meds) and the hepatologist said not to take them orally....to ask for an IV infusion....because of the varices.  

Glad that the CC is not that far from me..about 1 1/2 hours.  

This week is free from drs appts..so far.  I don't know how to act.  Next week is the cat scan.    

Hope you're all doing well.  

Paula
OH





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446474_tn?1404424777
Not feeling rushed and really listened too is what we all need but unfortunately not so easy to come by.

Last night I had a great hour talk with my doctor saying everything that is concerning me about my liver cancer and asking about any options for me depending on how things go when we get the results of my recent cancer treatment. She is 2-3 steps ahead of me. She told me about things I need heard of and no other doctor or patient I have known has had done. So at least I have some things to try before I run out of options and hospice is it.

Sounds like you are in good hands. That is a big part of the battle.
Good luck with everything!

Hector
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446474_tn?1404424777
The Cleveland Clinic is one of the best liver disease hospitals in the country. The Gastroenterologists and Hepatologists at Cleveland Clinic are some of the best anywhere.

You are in good hands and very lucky.

Hector
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89592_tn?1391278022
Thank you Hector...

I love Dr Barnes....he really took his time with me (more than an hour and a half..) and listened.  

Its an amazing, well oiled machine..that Cleveland Clinic.

Thank you for all your help too....made me chase that beta blocker.

Sending good wishes....Paula
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446474_tn?1404424777
Not feeling rushed and really listened too is what we all need but unfortunately not so easy to come by.

Last night I had a great hour talk with my doctor saying everything that is concerning me about my liver cancer and asking about any options for me depending on how things go when we get the results of my recent cancer treatment. She is 2-3 steps ahead of me. She told me about things I need heard of and no other doctor or patient I have known has had done. So at least I have some things to try before I run out of options and hospice is it.

Sounds like you are in good hands. That is a big part of the battle.
Good luck with everything!

Hector
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89592_tn?1391278022
sounds like you have a wonderful hepatologist also...priceless.  That she is thinking further down the road, also,is a promising sign.  

When are the results coming in?  Starting the prayers now.  

Glad there are some options available..though I'll pray for good resuits coming in and you on your way for that transplant.  Gosh....darn timing is everything.  

Thanks Hector.....you're always in my prayers.  

Paula

PS Dr Barnes told me that by the time I may have complications...I may be out of the age ceiling required for a transplant,  HMMM.. Also, I moved my cat scan to Friday.....tired of waiting and just want to get it done.
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5032487_tn?1365827621
Please keep the posts coming HectorSF.  I hope your AFP gets in range to back to TP listing,   Illness and this process is an emotional roller coaster ride that is taxing.  I've seen it numerous of times.  It amazes me how you still give back even when you are going through what you go through.  This is my desire in life. YO YOU ARE AWESOME~kelly
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