submitted request to mayo clinic FL...

Good for you.

My Dad had his transplant at Mayo and the entire experience was positive.

My mom had a dry run about a month ago but since then no calls, nothing. I am beginning to worry that its taking too long. She just became a meld of 25 and has had HCC since June (that's when we found it on MRI scan). She has had 2 chemo embolizations. She is listed with 2 transplant centers but since I joined this forum, I am in awe with the turn around with the MAYO clinic...it seems that they do ALOT of transplants.

Is there anyway to find out how many O Blood types are waiting on the MAYO list? What meld are they currently transplanting at?

Here is the link to the site: http://optn.transplant.hrsa.gov/latestData/rptData.asp

However, for some reason, it only shows data as of Dec. 31, 2012. They normally update it once a week. On average there are about 65 women on the list at one time.

I was transplanted at MELD of 25 and I am O+. I was on the list for 3 mos. So a month is a bit soon. She has to be evaluated first.

Hugs,
Connie

My Dad was also diagnosed with HCC in June. He is blood type AB ( universal recepient) and got the call (after one dry run) eleven days after being listed. It took us longer to get the initial appt at Mayo than the liver.

I was in your shoes six months ago and I'm praying for you and your Mom.

Julia

@ Julia...how is your dad doing? How long was your dad on the list? Did he also have HCC? How many lesions did ur dad have? How big were his lesions? What does universal reciepient mean...can he take any type of liver/blood?

@ Connie...I am so sorry that I misunderstood u. You don't think a month is a long time since the dry run? I feel like this is taking forever. I feel so worried for my mom.

Last night our phone rang at 4am...I jumped out of bed thinking it was "the call"...it wasn't...it was a wrong number...can you believe that...at 4am...a wring number...ugh!!! I wish it was "the call".

Post Edited (Worried daughter2) : 3/29/2013 10:26:42 PM (GMT-6)

WD, it will happen when you least expect it. I got my call at 3 AM and really wasn't expecting to get "the call" so soon. I'd had a dry run 2 weeks previous, due to a respiratory virus. I just thought I would have to wait longer and was taken by surprise.

The best thing to do is try to put it out of your mind. Relax. The call will come.

Hugs,
Connie

@ Julia...my moms meld was 12 without the HCC points. Then jumped up to 22 once her tumor hit 2cm. How did your dad get the extra points if his tumor was less than 2cm???

I thought the HCC must be a minimum of 2cm in order to get the exception/extra points??? Is this not true at MAYO? Here in NY, my mom's lesion was discovered at 9mm but didn't qualify for exception/extra meld points until it grew to 2cm...once it reached 2cm she was given the extra meld points which brought her meld to 22, then 3 months later she was given an extra 3 points which brought her meld to 25. Are things done differently at the various centers across the country in regards to exception/extra meld points for HCC?

I don't remember being told anything about size either. My Dads tumor was small enough that it didn't show up on the CT scan Mayo did and the docs ordered an MRI the day before the transplant committee met.

Your mom is lucky to have you by her side through all this. My Dad says he could never have gotten through it without me. He even sent me flowers the day he was released. Stay strong!

Hi WD! I haven't been posting much lately, but I try to keep up on how everyone is doing - and everyone here is always in my thoughts and prayers. Anyway, I've been reading your posts about your mom - it's obvious you love her very much. She's lucky to have you in her corner.

I know how nerve-wracking it is to wait for 'The Call'! My fiance was listed on 10/04/2012 and he got his liver on 11/04/2012 at TGH (Tampa General Hospital). We were literally driving ourselves nuts while waiting for 'the call'. I was getting SO stressed out. Every time one of the phones rang (TGH had 4 phone #s they could reach us at), my stomach would jump to my throat and my heart would fall to my stomach! Lol But seriously, I was a mess - we both were. We had the most wonderful TC - she was there for both of us, and we also kept in regular contact with a volunteer who works in the transplant dept. She is 6 years post-transplant and was my lifeline many days and nights. They both told me that I needed to try to relax, that the call would come when it came. They told me that I would end up getting sick because I was allowing the stress to overwhelm me. And I actually did get sick - very! My immune system was shot and I ended up getting so ill with 'something' that I was no longer allowed in the hospital after about the third day post-transplant. It was horrible. So try your best to relax. Trust me, when the time comes you'll get the call!

My fiance also had HCC and the size of his tumors had nothing to do with the extra points - the HCC alone bumped his MELD to 22. In fact, by the time of transplant, his tumors (he had 3) were 'dead'. The chemoembolizations were successful in not only shrinking the tumors, but also killing the blood supply that fed them.

And like others here have said, HCC tumors are more likely to increase in size as time goes on, rather than metastasize. Of course, left untreated, the cancer would eventually spread. But the chemoembolization helps to stop that from happening. So I really wouldn't worry about that with your mom. I can't remember the exact date right now, but there was about 9 months between my fiance's HCC diagnosis and transplant. However there was no further tumor growth after his CEs.

Hang in there - you'll get the call soon.

@ splashdancer, thank you so much. I love my mother more than anything. She is my mom but also my best friend. I want the best for her always. Thankfull, your fiance got his liver one month after being listed.

@ Connie...we went to Columbia Presbyterian and Mount Sinai...they BOTH gave us the same info regarding the lesion being 2cm to be given extra points.

Tomorrow, I am going to reach out to UNOS and clarify from them the criteria. The reason I am confused and frustrated is, my mom was diagnosed in JUNE...we had to wait until NOVEMBER to get the extra points bc that's when lesion grew to 2cm. Now its almost April, so its 10 months!!!

Tomorrow I will follow up on the potential appt w MAYO.

@ Julia...your 100% right...at least she is listed, but no calls :( she was listed with meld of 22, first week of December...now March she hit 25 meld points, still no call. I am sooo worried.

It seems like in FL, everyone is transplanted quickly! Whether its the Mayo clinic or in Tampa...thankfully, the patients there do not have a long wait.

The thought of the HCC spreading is scary!

@ Syxx...that doesn't make sense to me. There are areas that have extremely long wait lists such as California and New York (to name a few). I would "assume" that UNOS would keep it consistent across the country in regards to what the criteria is. I want to do more intense research into this.