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Dad is getting evaluated to be approve to be sent to a transplant center.

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Posted 3/15/2013 3:22 AM (GMT 0)
The first thing the shrink asked me was why did I want a liver. My answer; if a part in my car breaks, I replace it. My liver was broken, so I needed a transplant. A few more questions and that ended the conversation. They want to make sure you won't feel conflicted afterward - survivors guilt, or if you are suicidal and it would be a waste of a liver.

At the time I saw the shrink, it was 4 years before the transplant and I never thought it would happen.
Posted 3/27/2013 11:42 PM (GMT 0)
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 postpone his evaluation.  I'm not sure if I want to postpone his evaluation. 
Posted 3/27/2013 11:59 PM (GMT 0)
Well bust heads together.. ooopsy... if you think you want the evaluation done... then... lets ask the rest of the gang what they think... has to be some facilitating that can be done...


keep ur chin up.. and ur face to the sun... then ya can't see the shadows!!!


Sandia
Posted 3/28/2013 2:10 AM (GMT 0)
If you can't get the TACE moved up before the Mayo eval, then I'd cancel it and let Mayo do the TACE. They would most assuredly want to, anyway, to keep it below 5 cm.

The SW asked why I wanted a transplant. I told her I didn't really want one, but wanted to live. The shrink eval did not include that question.

Hugs,
Connie
Posted 3/28/2013 2:28 AM (GMT 0)
Hopefully you can get the TACE moved up as to work with the scheduled eval.
Posted 3/28/2013 2:56 AM (GMT 0)
Why can't you have the TACE on the 9th and then head to FL on the 16th. Our interventional radiologist said that for the first two days,you should take it easy...some people actually go to work the next day. I know it depends in the individual, but...how did your dad react to TACE the last time? That could give you a better idea if he will be okay to go to FL on the 16th.

I am sooo happy to hear your dad has an evaluation scheduled...a positive step in the right direction!!!
Posted 3/28/2013 4:00 AM (GMT 0)
WD, Mayo will not do the complete evaluation in one day. Be prepared to stay awhile. They generally have everything they want a patient to do all lined up. This will include an H&P, caregivers class (mandatory), abdominal MRI, chest x-ray and CT scan, stress test, pulmonary evaluation, many vials of blood (my first lab drew 24 test tubes of blood.) There are many more tests, scans, and follow-up appts. If you want to see what was required of me, in detail, do a search for My Pre-Transplant Evaluation, by using the search box in blue above.

Do you know where you will stay? If I had a house, I'd have you stay with me, but I'm in a one-bedroom apt. with strict rules.

Hugs,
Connie
Posted 3/28/2013 4:24 AM (GMT 0)
I can't imagine postponing the eval!!

I would let Mayo take over and let them know right away your concerns about the procedure you left hanging, they will surely take care of it right there, as Connie suggested and are totally competent on all things liver.

Evals can take up to a month or longer if there are any issues that pop up (brother's shingles vaccine was our culprit). With liver disease a month can literally be a matter of life and death.

Best of luck to you :)
Posted 3/28/2013 5:15 AM (GMT 0)
I totally agree however, you also have the risk (God forbid), MAYO does all of their evaluations and you are NOT a candidate, then what happens? If it was me, I would get the TACE done on the 9th then a week later (on the 16th) go to the scheduled evaluation at MAYO. Or...you can call MAYO and let them know you are scheduled for a TACE on the 9thbut don't want to reschedule your evaluate appt on the 16th, and see what their recommendation is?

It seems that the hepatologist currently caring for Thing's dad, prefers him to have the TACE procedure prior to him going to the MAYO evaluation. So, he already has that facilities opinion, now its a matter of getting an opinion from MAYO and then digesting the information and making the best decision based on the info you have collected.

BTW...Thing...I am always thinking of you and your dad.
Posted 3/28/2013 6:08 AM (GMT 0)
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 at the transplant center; however, what about if he doesn't get listed and now the TACE is delayed.

WD, the eval at Mayo is on the 9th and the TACE is on the 16th.  The last procedure he was ok for the first 2 days but then he was really tired the next 5-6 days.  If we get the TACE done here we probably won't be able to go to Mayo until the end of April.  I was the told the eval should not take longer than 3-4 weeks and usually it's done in 2 weeks but just incase they tell everyone 3-4 weeks.  Thank you for keeping us in your thoughts.

Connie, you're so nice! We will probably be staying at The Inn at Mayo the entire time we are there.  We do have relatives in St. Pete which is 3.5 hours away and was told we had to be within 6 hours; so that's an option too.

I'm going to call Mayo tomorrow and try to talk to his pre transplant coordinator and see if we can get their opinion.

Thanks everyone.

 

Posted 3/28/2013 6:49 AM (GMT 0)
Thing...I am sorry, I must of misread the dates. Definitely call MAYO and see what they suggest...you never know, they might not even suggest the TACE, especially since.his tumor has now shrunk.to 1.3cm (I can't remember if that's what you said) and they "might" be able to give him a liver sooner.

Are they still considering a multi organ transplant? (Kidney and liver)
Posted 3/28/2013 3:05 PM (GMT 0)
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 advice because they haven't seen my dad as a patient and don't know his current status; if his current physican is recommending the TACE prodecure we should take that into consideration because he is under his care. If we need to change they will try to re-schedule at the end of April.

Also, his pre-transplant coordinator will be Tita. Connie and Mae, have you worked with her?
Posted 3/28/2013 6:25 PM (GMT 0)
It's a tough decision, but you will know what to do. Good luck with your decision. Your dad is in good hands either way.
Posted 3/28/2013 6:36 PM (GMT 0)
Yes, my pre-transplant coordinator was Tita. She's a tiny thing...about 4'9" and very competent and sweet. Probably in her early 30s, but I'm not very good in guessing age.

You might also look into Gabriel House on the Mayo Campus. It recently opened and rates are lower than The Inn. It's family-style housing, with a shared kitchen and common area.

It probably won't make a difference if the TACE is done on the 9th and Mayo eval. the end of April. The tumor is not going to grow significantly, esp. if he gets the TACE done. It just needs to be less than 5 cm. to qualify for transplant.

From what you've told us about your dad's health, I don't believe he would be rejected as a transplant recipient. He would need to have some major health problems, unrelated to liver disease, to be denied.

Hugs,
Connie
Posted 3/28/2013 8:36 PM (GMT 0)
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 current doctor to see what he wants. So, it looks like we will not be going to Mayo until the end of April.
Posted 3/28/2013 9:52 PM (GMT 0)
Okay.

Hugs,
Connie
Posted 3/29/2013 3:21 AM (GMT 0)
Hi Connie,
You must feel like a giant, next to Tita, who's 4'9." You must have an inch on her, maybe 2. HA!
Posted 3/29/2013 3:47 AM (GMT 0)
Yeah, David, 2." I told her it's rare for me to look down on people.

Hugs,
Connie
Posted 3/29/2013 4:07 AM (GMT 0)
@ Thing...how big is your dad's tumor? Did you speak to his treating hepatologist and let him know if its okay for the TACE to be postponed? Maybe, the TACE appt could be moved up?
Posted 4/1/2013 3:15 PM (GMT 0)
@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.
Posted 4/1/2013 3:51 PM (GMT 0)
@ Thing...is the 1.8cm the "live" tumor or is it what is inactive since he had the embolization?
I submitted an online request to MAYO on Friday night. I will call them this afternoon. Did you sent all the paper work over or did your dads doctor?

Did you get a new date for the MAYO evaluation?
Posted 4/1/2013 4:16 PM (GMT 0)
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 to go to Mayo from the beginning but Mayo wasn't accepting Medicare patients at that time but something has changed so they are sending my dad now. My dad is on their Senior Advantage Plan through Medicare.

The plan is to have his TACE on 4/16 and try to schedule the eval to start in the middle of May so he has time to recover. Hopefully they can schedule everything in 2 weeks since we are giving 1.5 month notice.
Posted 4/1/2013 6:23 PM (GMT 0)
A tumor of 1.8 is a far cry from 5 cm, so he has time.

I've been going to Mayo since '05 with regular Medicare (no supplement) and Medicaid Medically Needy as a secondary. MN doesn't cover much, but every little bit helps.

Since this thread is well into 4 pages, I will lock it and create a PT. 2.

Hugs,
Connie
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