MELD 22 and On the List

[Whoyle]

I'm Bill. I'm new. First post was to existing member cuz her husband and I have similar issues that he seemed to come through extremely well,  but not sure if they are still active. I did get a welcome from Missy. Thank you for that. And thank you DOUG, fer finally gettin' me in! Not the most computer literate person on earth, but giving this a try.

Looking for those that can share with me the realities of what I'm entering into. At the risk of repeating myself on an earlier reply, I am an HCV Type 1A non-responder who developed cirrhosis. Then came the tumors and a diagnosis of HCC. Currently controling the tumors with RFA. I was listed August 11, 2010, MELD 22, in region 11, through the TP program at UNC-Chapel Hill. I'm mid-fifties (the NEW mid-thirties), in otherwise good shape and health, but the news and circumstances make me feel like I've been hit by a bus! I am full of questions, from what to expect when I get "The Call" to hospital time, recovery, how are you guys feeling that have been there/done that. Day 40 on the list, and, as I'm sure you can tell, gettin' nervous. Know some people who "know some people", but you just can't beat first hand knowledge and encouragement....

And maybe some layman's guidance on using the forum.

THANKS!

[DougV]

Glad you finally made it. 

Wish I could help you on your answers, alas all I have is the same questions you do.

Doug

[MissyMouse]

Hi again Bill. 

We have a member, Robin, who is 3 years post transplant, just finished treatment and seems to be doing really well.  I'll pop her out a note and have her check in and see if she can help you out.

Mouse

[glory]

Bill I replied to your post. I hope you get it... If not message me weforgiven@aol.com

[glory]

Bill I have no idea where my other post went. So I am sending this post in hopes that you will be able to read it.  Mike received 4 calls for backup, before we received the call  he was primary. Mike was listed on Jan 20, 2010 and received his first call on Jan 24. He made it to the top of the list on March 27, 2010.  I had just broken my right wrist that morning. Mike had taken me to the local ED they put me in a temporary cast till I could see the surgeon the following Monday.  When Mike and I arrived back home, I was going to bed due to pain shots and meds when the phone call came through around 12:30. I told Mike we had to go since you are primary.  We of course hung out in the ED at Chapel Hill from about 2:30pm until they rolled him out ready for sugery at 12:00am Sunday Morning. I was allowed to stay with Mike right up till they rolled him into the OR room. Mike said the last time he looked at the clock it was 1:00am. Mike was taken to ICU at around 8:00am.  I went into to see him around 9:30am they were working on him trying to get meds and other fluids in him. He was jerking and moving I had to leave the room I was not prepared to see that. I was told it was normal after transplant.  At 10:30am Mike was able to squeeze my hand and open his eyes. The breathing tube was removed that afternoon at 3:00pm, he was talking at 4:00pm, this was less than 24 hours after surgery. Mike was moved to a regular room the next day.

The transplant team at UNC is AWESOME. Dr. Toledo and Dr. Watson performed Mike's surgery. Dr. Gerber the head of the Transplant team is awesome as well. Mike's donor was a gunshot victim, so we had Dr. Darling (UNC Dr. treating Mike for Hep C) who was being very picky about the liver she wanted Mike to receive and Dr. Gerber both talking to us by phone before accepting the liver. They tested the liver from the donor and it came back clean. The donor was a 28 year old male. I still had concerns after the transplant due to the circumstances surrounding the donor.  About 2 months ago I was at church and a lady I know came up to me and said, my sister was the one who went and picked up the donor's liver for Mike, she also was the one who tested the liver and there could not have been a more perfect match.  I was totally blown away. We have no secrets in his healing so quickly. We are christians and we prayed a lot as well  as having others praying for us. God is the Mircacle worker in all of this and we give Him all glory and honor for this.... I hope you do as well and let me know if you have any more questions... I had surgery on my wrist 8 days after Mike's transplant. We were both out of commission. Our church  provided food for 2 weeks and cut our grass and helped us out in whatever we needed. During the time I was at UNC with Mike I stayed focused on him, when I thought about what he had been through it made my pain not so bad. Mike and Iook back now and agree my surgery was actually worse, as far as side effects go. I was so sick after my surgery I was actually worse off than he was after his transplant. UNC has transplant reunions every year maybe we will see you next year. Mike was the youngest one this year at the reunion he was 3 months post transplant at the reunion. Wishing  you all the best in the future and we will be praying for you.

[glory]

Did Bill ever get his transplant?

[Whoyle]

Bill here...No, no transplant yet. MELD upgraded from 22 (where I was originally listed) to 25 on November 12. More tumors showed up. Scheduled for another RFA next week to blast those guys outta there!

Hey, got an open question to anyone. I have cirrhosis, Hep C, and HCC. While the HCC seems to be elevating my status on the list, I'm actually listed with a diagnosis of Alcoholis cirrhosis (I'm not an alcoholic by the way) w/ Hep C. No mention of the HCC. Is that pretty standard...to leave the HCC off the diagnosis I mean?

[Whoyle]

And Glory...how's Mike doing? Well I trust.

[Whoyle]

Did Bill ever get his transplant?

Not yet. Moved Meld up to 25 though.

[glory]

Bill- We had 9 month f/u yesterday. AST and ALT creeping up and GGT was 400. Biopsy scheduled for next Wednesday. Praying whatever it is will go away.  Anyone on the board with transplant had this happen with their AST/ALT AND GGT?

[Whoyle]

My thoughts & prayers are with you and my hopes are this too shall pass. Not having been through the TP part yet, and not knowing anyone personally who has, not sure what these numbers mean post transplant, particularly at nine months.

[glory]

Bill- Liver looks good, no rejection and very little hep c seen. Ast and Alt are coming down. Have you received a call for a primary/secondary yet? Hope you are doing well. Where do you live?

[Whoyle]

No, no calls at all yet. I have been back to UNC twice to have tumors in my liver ablated, one RFA treatment (heat), and one Cryo treatment (freezing) which was done December 7. Two tumors each time. Latest MRI showed two more that they are going to follow up on in February. I am now at a MELD of 25, scheduled to go to 28 on 2/12. Being told that I am top three for my blood type.

Oh, and we live in Raleigh.

So Mike has Hep C as well? No issues with that? I've kinda been concerned about the Hep C becoming "Hep C on Steroids" once on immunosupressants.

Wish you both the best and continued success...how's the wrist, by the way?

[Whoyle]

Glory...and everyone who may have read my last post, I'm feeling a little "dumb" showing some surprise that Mike had Hep C as well as whatever other issues led to his transplant. Though I've had Hep C for a number of years (a Hepatitis Neighborhood alumni as well), which led to all the other issues that landed me on the list, I didn't join the forum until I was listed for transplant. I just realized that this forum is soooo much more than just transplants, and in fact IS called HCV Anonymous.

Hope Mike is continuing his positive progress. I'm still waitin on the call....

Are the reunions you've mentioned held at the center?

[glory]

Bill- I am just blown away you have not received any calls. We had 4 phone calls within the first 2 months. 1st one 3 days after being listed. Mike is doing great. He is having labs once a month now and they have cut back on some meds.  Mike is also working out at the gym everyday. My wrists are good. My right one is 100% will be a year 3/28 the day of Mike's transplant. My left wrist I broke in October it is 75% back to normal. I will be praying you get a call soon. The reunion is in June, I will keep you posted. Hoping to see you there. Due to the Hep C you will stay on Predisone longer than normal. Mike is down to 2.5 mg. Predisone helps with the hepc.