Acute Organ Rejection -- Moderate Grade as seen on Biopsy at 15 months post transplant

Well, Mike had his 4 month check up at Jackson this week.

No tumors in lungs or liver.

His shoulder is healing.

But, his liver biopsy showed two things:  Acute Organ Rejection -- Moderate grade.  And changes typical of active Hep C.

Pick us up off the floor!  Didn't he just go through all this?????

The doc explained that in cases like this it is a chicken and egg thing.  Yes, he has Hep C, nothing new there. And his Viral Load has been in the double digit millions since transplant, so no real surprises.

And the biopsy shows moderate acute rejection. Those words knocked me over until I started reading. Rejection is not uncommon and doesn't mean the liver will fail tomorrow.  "Acute" means right now there is some rejection going on.  "Chronic" rejection is the bad one...that one IS failing.

The plan:

Increase his antirejection drugs:  3 mg prograf twice a day (from 2.5mg) and 500 cellcept (from 250) twice a day. They may add prednasone next (but we hope not).

Start him on combo Hep C treatment:  he will take Interferon and Ribavarin for at least 6 months. He had a horrible reaction last time (2003) and is nervous. Doc said they would start him on a low dose and watch his blood counts and increase once they know he can tolerate the drugs.

This center is in somewhat of a transition in their attitude toward treatment.  Some of the docs say you might as well treat while the liver is in good shape as response to meds is higher.  Others say why bother.  OUR doc wants to do the treatment so we have put this in his hands and hope for the best.  The doc who was against this decision has moved to a new department.  

They are not using  the new antiviral drugs post transplant because they see some problem with the protocol and the anti rejection meds.  We shall see about that also.

Mike goes back to weekly labs.  They did a new viral load and took blood for some of the tests they did pre transplant.

Mike has been more tired lately so we are not surprised that something is "wrong."  Now we continue day by day. He is alive, doing pretty well.

His attitude after a day of thinking about it is better already, so I am glad I waited a day to post and digest all this myself.  He had his shoulder fixed in June and the doc told him it was a 9 month PT rehab.  So if hte Interferon starts September 1st, he can be rehabbing and taking treatment with the Spring to look forward to a new shoulder and feeling good again.

We are taking David's guidance on this. He worked through most of his treatment post transplant and hope Mike will feel pretty well too.

Though I am worried about the crankies...we just got through all that!

Hugs,

Carol

 

What happened to me is similar to Mike's condition. A year after the transplant, my surgeon told me my viral load was increasing. It had been dormant up until then. The transplant team watched my load climb and 3 months later when I was up for a visit, my surgeon went over everything that was going on, but never said what to do. He asked me what I thought. It was obvious and I said I'd be willing to go through the interferon/ribavirin therapy. He said that was what he hoped I'd say. There was no point in going through a transplant and then letting Hep C damage my new liver. I began the treatment and it wasn't nearly as bad as when I had done it in 2004. I still felt as if I had the flu, though not as severe as the first time. My belief is that the first time, my liver was in bad shape, and this time, I was working with a new, healthy liver. I also had a mild episode of rejection last summer, so they raise my prograf from 1 mg. twice a day, to 2 mg. in the am and still 1 mg. in the pm. After a few months, they knocked my dose back to 1 mg. twice a day. The main reason to do the treatment is to keep a new liver as pristine as possible. This was not a setback to me, and I hope Mike will see it that way as well. A transplant doesn't rid your body of Hep C. I have been clear of the virus for the past 8 months, but that could change any day. My surgeon said that if the virus returned, they'd give me the 3 part cocktail. I'm hoping not to have to deal with that for a while, if ever.

Sorry to hear this news about mike .......
Danelle

This is looking scarey. Mike's rejection/Hep C is doing crazy stuff to his post tranplant lab numbers. Have other post transplant folks had goofy numbers after year?


Createnine 1.65

Alk PHos 207 (Range 70-115)
AST 183 (Range 10-35)
ALT 129 (Range 9-60)
GGT 357 (Range 3-70)

The white and red numbers have been low all along, so they haven't seem real worried about that.

His Viral load last time they did it was 6.7M, which is down from earlier readings. They did another one this week which isn't back.

Mike is more tired these days and a bit depressed about the changing numbers and the diagnosis of moderate, acute organ rejection. I guess that is understandable.

We know he will have problems again, but we were hoping for a few good years first.

Back to weekly labs.

Likely Interferon/Ribavarin on the horizon once insurance hurdles overcome.

Carol

Mike too....his AST/ALTs were in the 20s for a long time!!!! We had such hope. From your lips to HIS ears...that this is just a blip! ML

Frantic this morning.

Mike fell into a pool this morning, hit the recently injured arm on the side!  Tripped watching 6 year old showing off a new trick...in the deep end with no swimmies!

He is ghastly white, fell on the bad side, at first thought he broke a rib and elbow now says he is "fine", fell fast aleep and looks like a ghost.  Screws in shoulder have been in 5.5 weeks and should be pretty good.

I'll take him to an ER later if he continues to look like death warmed over. Or is complaining of pain. I hear a trip to Miami in my chrystal ball...crap!!!

We have company that arrived for a week lst night, son's ex and daughter...which should be a great distraction...now this.

Poor Mike can't catch a break.

Worried,

Carol

Ack! Carol! How awful! I agree with Connie...good it was the pool and not the cement. Please post back how Mike is doing.

Emma

"At least docs are in their offices tomorrow!!!"

Amen. Give a call. His liver may be a little bruised, but hopefully is otherwise fine; i.e., no laceration. The liver actually is on the left, too, under the ribs. It's that small tail on the left side.

Good that his color is better.

BTW, my alk phos at 237 and GGT at 715 are higher than Mike's.

Hugs,
Connie

His liver has been in long enough that it's as solid as it will ever be. Bruising it wouldn't be good, so let's hope it was just painful and nothing else.

Labs a bit better this week.

But Mike still is feeling tired and done in.

He took a fall, I think I told you, but maybe not, hurt himself and may have broken a rib or two. 

His viral load is down to just under 7 million. Woo Hoo.

Having a devil of a time with "new" Medicaid rules.  It isn't a good time to be a sick person on Medicaid in Florida.  Don't get me started on that.

The Medicaid year starts July 1st and they told us today that Mike had used up his $1500 in out patient procedures for THE YEAR...through June 30, 2013.  Can that be right?

Appeals going in tommorrow.

AAARGH.

Best,

Carol

So after the labs this week, I calculated his MELD. How does a guy go from great labs, to bad labs, to a little bit better labs and have a MELD score of 13?


This is like 2 years ago all over again.



His creatinine is messing him up. He is dehydrated and has slept a really lot lately, mornings and evenings and to bed at 8:30. He is taking his second afternoon nap now.



WE talked to his TP Coordinator yesterday and she said they'd put him back on prednisone if this keeps up.



Maybe the shoulder surgery set him back a bit. Maybe the fall messed him up.



He keeps telling me that he tastes ammonia in his mouth...ammonia, again?



And he had really bad leg cramps yesterday.



More water, must encourage him to drink more water.



Carol

Post Edited By Moderator (hep93) : 8/25/2012 1:18:26 PM (GMT-6)

He isn't eligible for Medicare until he is 65. He'll be 63 in November, so he has 2.5 years to hold on before the "better" insurance. Til then, he will try to work within the Medicaid requirements. He made good progress on Friday appealing his request to move back into Straight Medicaid from managed care. Our governor wants everyone in managed care where there are quotas and donut holes that are unstated to the average Joe...no charts, no pharmaceutical forumlary, no rules of the road...just SNAP, you are in the TRAP. He had good luck with a representative at our local Medicaid office...so maybe, just maybe the problems will go away again for a while.

They do have a list of conditions that qualify you for regular Medicaid: Aids, COPD, some others, but not HCV...What?

I guess that cerebral hemorrhage in 2005 closed the deal for me with SS, after the transplant.