Hi All, It's not looking good for my dad, we need to decide if we want to do hospice. My dad is very weak, not eating, very yellow and lost a lot of weight; he can't get out of bed or walk, hard time...
Thank you for the prayers everyone. They did the drainage and there wasn't that much fluid but they are going to test it. After the procedure they took my dad off the ventilator but he had a hard...
We don't know yet, we reschedule the appts for next week if my dad gets better. I hope there is still a chance for transplant. His ammonia level went back to normal yesterday but he was still not...
His ammonia level was in the 140's so they going to put him on a ventilator to help with breathing because he's still not responding and in case they need to transport him to Kaiser. They will give...
Kaiser's tumor board reviewed the images from Mayo and don't see any invasion of the portal vein. I have a copy of the report from Mayo and it was signed off by 2 doctors. The MRI was done that...
I want to thank everyone for their kind words. He had an MRI done on 5/26 in California and didn't show any invasion. His interventional radiologist is waiting for the images from Mayo so he can...
Hi, doesn't look to good for my dad. My dad's evaluation started this Tuesday at Mayo and they did an MRI yesterday morning and found that the tumor has portal venous invasion so transplant is not...
I haven't been on for a while so just want to give everyone an update. My dad is getting his 2nd chemoembolization this afternoon. Hope everything goes smoothly and it gets rid of all the remaining...
I was told you have to be within 6 hours from Mayo. I also remembering reading that if you're from out of state you will have to relocate to Florida to get listed at Mayo....
1.8 cm is the remaining which is live. My dad's is being referred by Kaiser so they sent everything over and they have a contract with Mayo so the insurance verification was done quickly. We wanted...
@WD his last scan was on 2/25 and it was 1.8 cm. His transplant coordinator talked to the Heptalogist and he wants us to keep the appt for the TACE on the 16th and reschedule the eval at Mayo....
Hi WD, It's great you're taking your mom to Mayo. They should get your mom in after the doctors review your mom's record and insurance is verified. It took them 2 weeks before they called us for an...
I talked to Tita and she said they can't give any medical advice until they see him. She said if he get the TACE at Mayo it won't be until the evaluation is completed and we should discuss with his...
Yes, he's approved for a Kidney and Liver transplant but the decision is up to the transplant center. I called Mayo and talked to the new patient rep and she said they can't recommend any medical...
Everyone has great points and I'm thinking the same way. Thank you everyone for the great feedback. I want to do the TACE at Mayo incase anything goes wrong with the procedure so at least he's there...
Mayo called and first evaluation appt. is on 4/9 but my dad 2nd TACE procedure is schedule on 4/16. His hepotologist wants him to get the TACE done before he goes so that means we would have to...
Hi WD, He recovered from his HE on Sunday and is doing good now. I called today and the records have been reviewed by the doctor and now it's with the insurance department for approval and once that...
He's been doing great until late this morning around 2 am, he had an episode of HE. We gave him more doses of lactulose and he's back to normal tonight. He said he didn't remember anything. How about...
WD, my dad had nodules on his lungs too so they did a CT scan with contrast and it came back clean. I hope it's the same for your mom....
WD, yes his doctor is recommending a liver and kidney transplant but the decision is up to the transplant center. David, yes he has type 2 and it's controlled. So no insulin or monitoring. Carol, was...
Hi, My dad's doctor is requesting for a Liver and Kidney transplant because his kidney's function is bad, his GFR is flucuating between 26-35. For everyone that had only a liver transplant with bad...
Thank you guys for all this information. Mae, Thing is my family nick name so it's ok. Also, where did you stay during the wait? Connie, what is the meeting with the psychiatrist like and what did...
35 appts? That's a lot. He went through the eval at Kaiser and it was all done outpaitient that took a week with multiple appts each day. That was all done in October and UAB accepted all those test...
Connie, I hope they accept all the tests he has done here. How long did it take for you to get listed from start to finish?...
WD, the first TACE was traditional and I havent' talked to the doctors but the radiologist said transplant centers has their own critieria and it's their decision so now we are going to try another...
Radiologist recommended another TACE using LC beads which is more aggressive than the first TACE to try to completely kill the remaining tumor. When we got home the transplant coordinator called and...
Thanks for the prayers Sandia. I found out that they want my dad to be tumor free for 6 month before they evaluate him again. They said his AFP level was 704 (August 2012 before TACE); 190 (January...
Wow I haven't been on here for a while, good thing I set up the email notification. Hi Worried daughter2, My dad is doing good but he is still not listed. Where is your mom listed? Here's an update....
Hi Connie, Did you eat or drink anything for the lost of appetite? Ensure and etc.?...
My dad had the chemoembolization done on Wednesday and the procedure went well. He was doing fine after the procedure and yesterday; wasn't tired and had an appetite. He's meeting with the Vascular...
Connie, Your second tumor was 4.9 cm, do you remember how much it shrinked by after the chemoembolization?...
Hi Mehran, I hope your dad gets better and put on the list as soon as possible. Was his kidney's already bad before the evaluation? My dad will probably need a liver and kidney transplant too but...
Met with the radiologist yesterday and they're going to shrink the tumor with chemoembolization. Just got a call from them today and they have a cancellation tomorrow, so we're going to take that...
My dad got approve by Kaiser today, they will send him to a transplant center. His tumor is about 5 cm and they will treat it before he goes to a center. We will have to meet with an interventional...
Connie, thanks for the info. Did it get rid of the tumor completely for you? I've been reading on the net and for some people it was an inpatient procedure....
Connie, Can you tell me from your experience with chemoembolization? Was it painful, any side effects, was it done as an outpatient procedure?...
Just called the transplant coordinator @ Kaiser to follow up with my dad's MRI and she wanted to wait until tomorrow for the tumor board to review it. She said she didn't want to worry me and it...
Mehran, glad to hear your dad is in great care....
I hope so Connie. They are doing the MRI at this moment and going to discharge him....
Connie, Can the measurements from different imaging be that off by such an amount? There's a big difference between 2.8 cm and 3 mm. Ultrasound = 2.8 cm & 2.5 cm (two spots) CT Scan = 4.8 cm...
Got a call from the transplant coordinator this morning and my dad's liver doctor wants him admitted ASAP to get hydrated to improve his kidneys for an MRI w/ contrast. So I'm sitting in the ER...
That's a great suggestion David. Thanks....
David, I'll ask if they contract with Tampa General....
Sorry Connie :)...
Hi Carroll, Yes, I know it's on the other side about a 4 hour drive away. Just thought it would be nice to have family close by that can come visit....
A.Ziffle, Thanks for the recommendation. I will ask what other transplant center is an option. We were hoping Mayo in Florida was an option because we have family in St. Petersburg and hearing all...
Mehran, Can I ask how long it took Kaiser to approve your dad to UCLA? From the start of the testings until getting approval from the committee....
I don't think Alabama is currently doing live donor too because they haven't done any since 2001 and only have experience with 6 live donor prior to 2001. They haven't mention anything about a live...
Hi Connie, My dad has Medicare and we went with the Kaiser Senior Plan because he used to be under Kaiser through my mom's insurance plan until she was unemployed; it's an advantage plan with...
Hi MamaLama, David and A. Ziffle! When he was in the hospital getting hydrated for the MRI, I used the calculator on the Mayo webiste and his MELD score was 25. I have found a lot of stories...