Aa
A
A
Close
89592_tn?1391278022
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





Cancel
5 Answers
Page 1 of 1
446474_tn?1446351282
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
Comment
Cancel
446474_tn?1446351282
Comment
Comment
Submit Comment
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
Comment
Cancel
89592_tn?1391278022
Comment
Comment
Submit Comment
446474_tn?1446351282
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
Comment
Cancel
446474_tn?1446351282
Comment
Comment
Submit Comment
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.
Comment
Cancel
89592_tn?1391278022
Comment
Comment
Submit Comment
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
Comment
Cancel
5032487_tn?1365827621
Comment
Comment
Submit Comment
Your Answer
89592_tn?1391278022
Answer
Know how to answer? Tap here to leave your answer...
Answer
Cleveland Clinic Appt / lupus & cirrhosis
Submit Answer
A
A
Recent Activity
406584_tn?1399591666
Blank
10356 commented on dominosarah's status
Feb 05
406584_tn?1399591666
Blank
10356 commented on dominosarah's status
Feb 02
1113735_tn?1273178030
Blank
Diamando6 commented on photo
Jan 30
Blank
Weight Tracker
Track your weight over time
Start Tracking Now
Top Hepatitis Answerers
446474_tn?1446351282
Blank
San Francisco, CA
683231_tn?1438659664
Blank
Auburn, WA
317787_tn?1428318779
Blank
DC
Avatar_universal
Blank
6708370_tn?1450863629
Blank
San Francisco, CA
Avatar_universal
Blank
Cirrhosis of the Liver Community Resources
RSS Expert Activity
233488_tn?1310696703
Blank
Marathon Running Done Over Many Yea...
May 21 by John C Hagan III, MD, FACS, FAAOBlank
233488_tn?1310696703
Blank
New Article on Multifocal IOL vs &q...
May 21 by John C Hagan III, MD, FACS, FAAOBlank
748543_tn?1443740527
Blank
TMJ/TMJ The Connection Between Teet...
01/15 by Hamidreza Nassery , DMD, FICOI, FAGD, FICCMOBlank
Top Hepatitis Answerers
446474_tn?1446351282
Blank
San Francisco, CA
683231_tn?1438659664
Blank
Auburn, WA
317787_tn?1428318779
Blank
DC
Avatar_universal
Blank
6708370_tn?1450863629
Blank
San Francisco, CA
Avatar_universal
Blank