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Posted 3/7/2013 9:50 PM (GMT 0)
my bile duct stents should have been replaced within this week. My doctor who performed the stent placement told my coordinator to not schedule anything for sooner than 6 weeks out from this week. That might be a good sign as they might be wanting to go ahead with the cyst removal and see if they can get me scheduled within the next few weeks if my blood tests come back improved, which I know they will. I took a really nasty fall on Saturday, 3 months ago that fall would of left me horribly bruised for months. Surprisingly I had 1 small bruise and it is pretty much gone now.

Anyways, I am not sure how to take it, but I guess I will no more next Thursday when I meet with both surgeons. First time I will have 2 doctors in the same room at the same time, so we should all be on the same page I think.

Posted 3/7/2013 10:25 PM (GMT 0)
Let us know if the cyst removal is scheduled.

Hugs,
Connie
Posted 3/7/2013 10:27 PM (GMT 0)
Oh I will, I am so hoping to just get this thing out.
Posted 3/7/2013 11:49 PM (GMT 0)
yeah hopin that cyst is removed also... let us know!!! Sandia
Posted 3/14/2013 12:43 AM (GMT 0)
Well I called and got my lab numbers. I did not want to be surprised. Everything looked great. Platelets just below normal, but that runs in my family. My ALT wasthe only enzyme raised, but it went from 240 down to 70. My INR was 1.7, the lab said 1.5 is normal. Bili was 3.6 but I have no jaundice, regular doc ssod I went from 39 to 3.6 in 2 months, so just give it time.

It has been 2 months, so I should happy and accept improvement. I just thought my bili was lower based on appearance. We will see what surgeon says, based on this my MELD has dropped 10 points.
Posted 3/14/2013 2:26 AM (GMT 0)
It basically sounds like good labs! May you continue to improve.

Hugs,
Connie
Posted 3/14/2013 4:14 PM (GMT 0)
Ditto what Connie said! ML
Posted 3/14/2013 8:00 PM (GMT 0)
Very good visit, my wife was crying tears of happiness. No surgery yet but all liver diseases finally ruled out. Very happy with labs and they expect furthur improvement. Want to continue to monitor and get ok from liver specialist for surgery.
Posted 3/14/2013 8:21 PM (GMT 0)
Wonderful news, SyXx!

Hugs,
Connie
Posted 3/15/2013 1:30 PM (GMT 0)
Here is a little more detail. Apparently they were arguing about what my diagnosis was up until 5 minutes before my visit yesterday. They finally all settled on choledochal cyst. Dr. Rossi, he performed my EUS and ERCP, he thought it was a pancreatic cyst. He said its good if it is not what he thought it was because the whipple surgery is no fun to go through. When I go in to have my stents replaced, he will be redoing the ultrasound to confirm the diagnosis.

They referred me to the states best hep doctor, he is also a teacher at the U of M. I probably will not actually see him, but instead will see his nurse practioner, which I am fine with because I have seen his nurse practioner once already and he is the one who had me do the MRCP and sent me for stenting. The nurse practioner will confer with the hep doctor and let me know when it is time for the surgery. They want to make sure my liver is as healthy as possible.

They said losing the 89lbs I have lost so far is great and want me to lose about 40lbs more and then I will be sitting in the BMI range they want.

It was good to finally hear there was no sign of liver disease. He compared me to an alcoholic when it comes to my liver damage, he said now that they have it fixed there should be no more damage and with diet and exercise and avoiding toxins I should get 3 or 4 more decades out of my liver at least.
Posted 3/15/2013 1:30 PM (GMT 0)
They did say that my bile duct was HUGE, he said it is the size of a big 50 cent piece, which is absurd. They said typically its the size of a ball point pen.
Posted 3/17/2013 5:21 PM (GMT 0)
I got access to my chart, saw my labs from Jan. 4th. MELD was 29, down to 13 now.
Posted 3/17/2013 6:18 PM (GMT 0)
Miracles do happen.

Hugs,
Connie
Posted 3/17/2013 9:46 PM (GMT 0)
 Those low numbers sound good Syxx .

Ziff

Posted 3/17/2013 10:23 PM (GMT 0)
It has been an emotional week, I am glad the doctor who put my stents in came to talk to me. He just has a good vibe about him, very rare in these specialist. I know more about obstructive cirrohosis than I should now lol.
Posted 3/18/2013 12:02 AM (GMT 0)
So glad to hear your good news!!

Sandia
Posted 3/18/2013 2:06 AM (GMT 0)
 Syxx it's been kinda hectic here also . I got back into classic VWs a few years back and have slowly put together a 1965 bug to replace my old gas hog Jeep . Since I started tinkering with mine other friends have bought a few Buses , Ghias and stuff . We all just came back from the " Run in the Sun " car show this week down at the beach . Over 3000 cars showed up the first day of the weekend event . I been sleepin in a friends 69 camper van loaded with parts for the swap meet and feel like somebody beat me with a whiffle ball bat . Kinda just glad to be home ya know , But seeing all those classic rides was worth it .

 Yeah , Glad you feel confident with this guy . That goes a long way in your overall health , Nothing to make you more miserable than a snotty doctor . I gotta go see my doc on the 21st This week for my checkup but he's a pretty decent guy to be around , Just wished he didn't charge so much just to be nice .

Ziff    

Posted 3/18/2013 2:46 AM (GMT 0)
Lol my insurance has been awesome, not a dime out of pocket.

Nice on the VW, hopefully finish it soon.

Good luck at doctors!
Posted 3/21/2013 10:54 PM (GMT 0)
So with improved labs comes change back to normal BP meds. The other stuffed helpef with fluid before but i am getting dehydrated plus BP was really high, since I am down 90lbs starting low. will be fun few weeks.
Posted 4/7/2013 1:49 PM (GMT 0)
I get to see my hep doctor tomorrow. In 6 months this will be the first time other than the surgeon that I have seen the same doctor more than 1 time. I am kind of excited that things have improved so much, and to have structure of who I will be seeing on a regular basis. Hoping to set up a schedule of blood testing so I do not have to drive up and see him all the time. Then its just waiting for them to ok the cyst removal.

I went to the Water Park of America up by the Mall of America on Friday night into Saturday with my wife, daughter and niece. We stayed at the hotel attached and did did all the slides etc. I think I hit like 30mph on one slide going down in a tube. That was a blast, after 6 hours of running around chasing them I was not even tired so I know I am feeling good now.

Posted 4/7/2013 6:29 PM (GMT 0)
Wonderful, Syxx. May you continue to improve...no, normalize!

Hugs,
Connie
Posted 4/7/2013 6:40 PM (GMT 0)
Great news!  Carol
Posted 4/7/2013 7:15 PM (GMT 0)
great news!!!
Posted 4/7/2013 10:06 PM (GMT 0)
It's always nice to hear good news. Be well.
Posted 4/8/2013 2:39 AM (GMT 0)
 My Bug does 30 mph in just under 26 minutes flat . Great news Syxx , Keep um comin .

 A. Ziffle 

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