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Posted 3/12/2013 10:41 PM (GMT 0)
I have a few questions...

For those who had transplants...how long did you wait on the list, before you got "the call"?

Where are/were you listed? And what was/is your meld score?

For those who had/have HCC...how many tumors and how big were they before you were transplanted?

Thanks.
Posted 3/12/2013 11:16 PM (GMT 0)
Hi, WD! I had my transplant at Mayo in Jacksonville, FL. I was on the waiting list for 3 mos. prior to getting "the call." My MELD at time of transplant was 25. It had been around 11, but I automatically was given points for HCC, after which I was at MELD of 22. At the end of 3 mos, I got an additional 3 points for being on the list for 3 mos., so MELD was 25 at time of transplant. My tumor had been 4.9 cm when noted on MRI. I had one chemoembolization to shrink it. However, I don't know the tumor size after that, as I was transplanted soon after.

I did receive a call after being on the list for 2 1/2 mos., but had to forgo the liver as I had a respiratory virus.

Hugs,
Connie
Posted 3/12/2013 11:44 PM (GMT 0)
Hi Connie.

How many chemo embolizations did you have to shrink down your tumor? Do you live in FL or did you relocate there to wait for the transplant? Wow...I can't believe how short the waiting list is at MAYO in FL!!! How many transplants do they do in a month alone?!?!

I believe in a prior thread, you said this was your second time having HCC. Were you scanned often (every 6 months, etc) after the first time with HCC? When was your last scan done before your 4.9cm tumor was found?

My mom's tumor was 9mm when it was found in June 2012. Before that, her last scan was in Nov 2011 and it was clear...then 7 months later (June) it was there...that was one of the WORST days of my life! Then we had to wait until it grew to 2cm in order for her to get the additional meld points and become a meld of 22. In November 2012 it grew to approx 2cm and she got the extra pts(meld became 22) and she was able to be treated via chemo embolization. I hope the waiting of allowing the tumor to grow to 2cm, didn't do more harm. Unfortunately, in order for her to get extra points, we had no choice but to wait for it to grow to 2cm for the exception points...otherwise if we would of treated it when it was less than 2cm, she would stay at a meld of 12. Now, that itself is a stressful situation...having something, knowing it needs to be treated but in order to benefit, you need to let it grow. I hope my explanation makes sense...I don't know if I ever make sense anymore :-(

Connie...I constantly worry about and for my mom. I know I need to move forward...but I am scared...actually I am petrified for her.

Post Edited (Worried daughter2) : 3/12/2013 5:50:46 PM (GMT-6)

Posted 3/13/2013 1:55 AM (GMT 0)
WD, at the time the first tumor was found, I was getting an ultrasound once a year. The tumor was 12 cm x 11.5 cm and took up the entire rt. lobe. It had also metastasized into the inferior vena cava (a large vessel that runs off the liver.) Since Shands (where I was diagnosed) said they couldn't help me, I went to Mayo and they literally saved my life. I had my first chemoembolization which shrunk the tumor to approx. 9 x 8 cm. and the metastasized part shrunk into the original tumor. A few months later, the Mayo Interventional Radiologist introduced TheraSphere (microscopic beads of radiation) directly into the tumor. It killed the tumor and the entire rt. lobe, which was removed.

After that experience, I had either an MRI or CT scan every 3 mos., and later every 6 mos. After 4 years like that, a new tumor was detected on the remaining left lobe. I had one chemoembolization and 3 mos. later I received my transplant.

Fortunately, I was already in Jacksonville, actually Jacksonville Beach, which is 12 min. to Mayo by car. After the first lobe and HCC were removed, I thought of moving to the Gulf Coast. However, something told me I should remain here. I have almost everything done at Mayo. I'm going tomorrow for labs, hand x-rays and a meeting with a hand surgeon, as I'm having pain from trigger fingers. As a post-transplant patient, I have labs once a month. Post discharge after transplant, I had blood drawn 4 days a week. Then it gradually decreased.

Hugs,
Connie
Posted 3/13/2013 1:59 AM (GMT 0)
What size was the 2nd tumor when they found it? Was it the 4.9cm? How much time passed between scans before they discovered the HCC the second time?

My biggest, biggest fear is that the HCC will metastasize. So anxious about that!!!
Posted 3/13/2013 2:38 AM (GMT 0)
WD,

My partner was transplanted May 1, 2011.

His MELD was 24 the day he was transplanted.

He was listed in February 2011, but he was eliglble for listing (sort of) in October of 2010 when he was referred to U Miami/Jackson Memorial in Miami, FL. His MELD was 26 that day and he was really really sick. BUT he was actively drinking alcohol through September 27, 2010. They would not list him until he was alcohol free for 6 months in a PROGRAM. So he went to AA 4 - 6 times a week sick as a dog.

They pushed the envelope of time for Mike...they counted September-February as the 6 months though Sept was well gone before his quit and February had barely begun...becasue they found a 2 cm HCC in the right lobe. They listed him in February and took a second MRI in April...still less than 5cm. We got the call April 30th and he got his liver overnight...closed him up on May 1st.

So he was 2.5 months ON THE LIST.

He had treatment in 2003. He was good from 2004 - 2008, then started down hill.

Anything else?

Carol in FL
Posted 3/13/2013 3:16 AM (GMT 0)
I know I have a lot of questions. Just so many on my mind.

MamaLama...does your partner have Hep C or B or is his cirrohis due to drinking? I am assuming he doesn't drink any more? How big was his tumor the time he was transplanted? Did it "grow" between the Feb/April timeframe? Thank Goodness your partner got "the call"...what a blessing! Why is he going down hill?

It sounds like FL has a shorter wait time? Why is that?

How about Cleveland??? Any info about this center? Anyone?
Posted 3/13/2013 4:14 AM (GMT 0)
Wd,

Mike has Hep C, still, as it is blood born and comes right back attacking the liver. After transplant 2 years, his MELD is running around 12 even NOW!

His cirrhosis was from both Hep C and alcoholic cirrhosis.  He has been sober since Septermber 27, 2010.  His MELD was 24 the day of transplant.  While he was waiting for the 6 months, the quitting drinking and the full regime of meds they give folks pulled his MELD down to 16, 15, 13 over time. Then it started back up again. He had all the sides:  edema up past his knees, horrible HE, nose bleeds, bleeds in the small bowel, port hypertention, etc etc.

His tumor was not larger when they did the second MRI.  But he got the points...to 22 though I think he was at 24 the day of his transplant without the tumor points.

He was going down hill because his kidneys and liver were failing at the same time. He was hospitalized a week a month from that October 2010 until transplant...acute kidney failure, acute pancreatitis, sepsis, and more acute kidney failure. It seemed like he needed some albumin and some IV electrolyte boosting and then he'd be pretty good for a while. We got a handicapped thingie for the car as he could hardly walk 10 feet without sitting down. We got a walker for the house. He had a heck of a time getting to the toilet. I had to get him up at night.  We got him a fob with a push button to call me or 911 if I didn't answer as he was falling all the time and couldn't get up.

Now he is back cooking and shopping and doing most of his regular stuff. What he'd really like to do is play some golf.  Maybe if they had a little nap spot every  6 holes he'd make it around!

It is after midnight in my timezone. I have to get some sleep! NIGHT!

Carol

OOOPs, shorter wait times.  Evidently there are enough donors for those who need them here.  More densly populated areas are slower...NY/MA/CA/AZ...they don't transplant til the 30s.  The VET programs don't transplant until the 30s.

And this is going to sound AWFUL. But FL is one of the states with no helmet law....we call unhelmeted motorcycle drivers--donors. Sad. But evidently....

http://www.miamiherald.com/2012/06/18/2856134/helmetless-biking-is-good-for.html

Maybe the weather is nicer and they drive those bikes more months???   If we still lived in CT we would have gone to Mass General...and they have a long list.

More tomorrow.

 

Posted 3/13/2013 4:20 PM (GMT 0)
Hi Carol.

That was an interesting article in the Miami herald!

Actually sounds like your partner is doing well...shopping and cooking are big accomplishments! A nap...well, I think we all can use one or two daily...lol!!!
I am in NY and the wait time is sooo long!!!
Any feedback in the Cleveland Clinic in Ohio???
Posted 3/13/2013 4:26 PM (GMT 0)
I don't recall any cc patients her is last year

But put it in the search and see what pops up

The cc satellite here in FL is beautiful. I had a serious surgery there on 2009 that had some complications. So I am not a fan.

ML
Posted 3/13/2013 4:34 PM (GMT 0)
Oh...I hope all is well with you now...after your surgery?

I heard good things about them but haven't encountered anyone here on this forum who had their transplant there.

I went to the website you posted...
http://optn.transplant.hrsa.gov/latestData/viewDataReports.asp

Although helpful, it sure confused the heck out of me...all those numbers are overwhelming.
Posted 3/13/2013 4:51 PM (GMT 0)
If you give me some information, I might be able to run a report or two for you.

Center
Blood Type
Hep C right?
Meld Score

I think that is all I'd need.
Posted 3/13/2013 4:56 PM (GMT 0)
Thanks...I will send you a private message.
Posted 3/13/2013 5:00 PM (GMT 0)
I went on the transplant list at MGH in August of 2005. My MELD scores hovered between 12 and 17 for 4 years. Then it went to 18 and I was hospitalized locally for a week. After that week, it had jumped up 6 points to 24. A day later, I got the "call" and had my transplant on July 23, 2009. They found 2 small cancerous tumors in my old liver afterwards.
Posted 3/13/2013 5:18 PM (GMT 0)
@ mamalama...I actually emailed you directly...hope that's okay.

@ david...did you know about the tumors before the transplant? How big were they? Did you have any scans before (Mri, CT, Pet) that may of seen these tumors or were they missed? Were you very sick...is that why your meld score jumped so high? Do you have Hep C?

Sorry for all the questions.
Posted 3/13/2013 5:19 PM (GMT 0)
Playing the reports is not easy until you figure it out, it took me a few days before I got it figured out. When I was first having issues I wanted to find out the wait time in Minnesota, I determined that if I had to go that route I would list at the U of Minnesota and U of Iowa. U of MN is an hour drive while U of Iowa is 2 to 2.5 hour drive, but I have family down there and the wait time and average MELD score for transplant is lower.
Posted 3/13/2013 5:21 PM (GMT 0)
WD< got it. ML
Posted 3/13/2013 5:54 PM (GMT 0)
@ mamalama...thank you sooo much!!!

@ syxx...are u/were u dual listed? Did you have your transplant?
Posted 3/13/2013 6:14 PM (GMT 0)
No, I went and got a second opinion about 2 months after the first doctor told me I needed a transplant, because I was starting to get really sick and the doctor was just a @$#. It was found that I had a cyst that had completely closed my bile duct, the hep I saw the second time told me there was no excuse for missing it. I told him I just got hounded about alcohol even though I do not drink.

My liver has been severly damaged due to the bile eating away at my tissue, however since I had stents put in I have completely turned around. They said they have no idea what my liver function would be at due to this. I have an appt. tomorrow with 2 specialists in biliary diseases and liver surgeries. They will determine based on my labs if they should do the surgery. They both agree now that the stents are allowing bile to flow my liver should not continue to go downhill, but its a matter of if the surgery is to risky. Right now I feel as healthy as I ever did, no issues at all, compared to 2 months ago.

If it is to risky, they said they will have me evaluated so the cyst can be removed at the time a transplant would be done. This i just found out, so I hope I hear lets schedule the surgery.
Posted 3/13/2013 6:36 PM (GMT 0)
Wow, this is quite a story, such a turn around. Keep us in the loop about who is going to do what when....that first doc was not on top of things....good that you pushed hard! Carol
Posted 3/13/2013 6:44 PM (GMT 0)
I agree with Carol...a second opinion is always important!!! So happy to hear your doing well. Keep us posted on tomorrow's appt...lots of luck!!!
Posted 3/13/2013 6:50 PM (GMT 0)
My primary doctor said that most people just go with what the doctor says. She said if you have any hesitation or concerns you should seek a second opinion. My wife and I decided we wanted to be 100% sure because of my age and them not being able to come up with a diagnosis, within 10 days of seeing the second doctor I was in having stents placed.

My bilirubin was like 39 and my INR was 2.3 when I went in for the stents, the doctor said typically he would hold off with the INR that high, but he told me we need to do this so you can get better. He put his hand on my shoulder and said, we got this. Gave me a few transfusions and we were off.

 

Posted 3/13/2013 8:27 PM (GMT 0)
Sounds like you have a great doctor on your team!!! It's awesome when the patient and doctor see eye to eye.
Posted 3/13/2013 9:43 PM (GMT 0)
Hello,

My name is Pam - my husband, Ron, received a liver transplant February 3, 2011.  I journaled throughout the entire journey.  I hope it's helpful to you.

http://ronslivertransplant.blogspot.com/

If you have any questions, please feel free to contact me [email protected]

Best wishes.

Pam and Ron

Posted 3/13/2013 9:48 PM (GMT 0)
WD, with the 2nd tumor, it was found on MRI. It had been 6 mos. since I'd previously been scanned. I believe it was 2 something cm. It grew rapidly and reached 4.9 cm before I received a chemoembolization to shrink it. I'm not sure how large the tumor was after that chemoembolization, as I was transplanted very soon after. Transplant will not be done if a tumor is larger than 5 cm or if multiple smaller tumors equal 5 cm.

I have a blog on here, My Pre-Transplant Evaluation, and another for Post-Transplant, which is ongoing. Do a search for these and you may find some more explicit answers to your questions. However, you must realize that every patient is different and different transplant centers handle things differently.

Hugs,
Connie
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