Dilemna... where to go

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arneeb
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Date Joined Nov 2009
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   Posted 12/20/2009 2:55 AM (GMT -7)   
Mike has liver cancer... the U of M sent a packet... and included medical releases that are going to NY from Minnesota... which will take in a good week... a full week to get there... ok then there's the follow up...
Mike has had full work ups... colonoscopy, CT, Ultrasound, liver biopsy... etc
ok the problem is the transplant team won't get him in at least for 3 weeks to start evaluation... some of which has already been done.. meanwhile this cancer is growing...
and I  have repeatedly requested an appointment for an oncologist now... mainly because Mike does not have the sobriety necessary for a transplant at this point... and now I read it will be a year...
 
so I'm thinking that need to get him in to an oncologist and maybe even over to the Mayo Clinic... we've been having nothing but run around from the U of M... and no straight talk... I specifially asked about the sobriety time..
Mike is attending AA now... and I know he will pay the consequences... as he is late to this...
he is serious... and following through...  and he isn't one to make that statement and not...
anyways...
I'm gonna check out the Mayo... just to get the oncology going and see if their transplant team isn't even a little easier to work with... and maybe they can figure out when he is speaking with them that he speaks English...
the U of M after speaking to Mike asked me on 2 different occasionis 5 times if he spoke English because his last name is hispanic... anyways... we're struggling with these decisions... we want to address the cancer first...
and I'm looking at living donor... too... so... anyways thank u guys for all ur help along the way.. just needed to put this down...

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/20/2009 12:33 PM (GMT -7)   
Very well stated, Rick.
 
Sandi, I don't think you will find any transplant center that is going to require less than 6 months of sobriety for transplant.  Regarding the cancer, I am very pro-Mayo as they literally saved my life.  Shands Jacksonville diagnosed  my liver cancer in early 2005, but I believe they missed it the previous year.  I was having a sonogram every year.  When it was discovered, it was 12 cm x 11.5 cm and had spread into the inferior vena cava.  After diagnosis, it didn't grow any more.  However, I couldn't get an appt. with an oncologist at Shands and the GI doctor and my primary care doc pretty much said it was hopeless and fatal.  In May of '05, I received Medicare, so I made an appt. at Mayo myself (you can get online and request your own appt.  They will call you within 2 days.)  Although I'd had CT, MRI, and blood work at Shands, Mayo repeated everything and more.  As I mentioned previously, I only saw an oncologist once at Mayo.  From there I went to the Transplant Team, though they determined I wasn't eligible for transplant, due to the metastasis.  However, to this day, I am seen by the Transplant Team. 
 
It was 2 yrs. from diagnosis of cancer before I finally had surgery.  During that time, I was really worried that the tumor was going to metastasize to my lungs or another organ and make me ineligible for treatment.  Sobriety was never a problem, as I had been sober 19 yrs. when I first went to Mayo.  However, after chemoembolization, I had a long wait for the TheraSphere.  It had been used at Rochester, but never in Jacksonville, so there was all sorts of red tape and they had to prove various things before being approved to go ahead.  It was a drug study.  I was #2 in the study.  Between the chemoembolizaton and the TheraSphere, the tumor had shrunk enough--and basically died, as had the rt. lobe--to qualify for surgical removal of the rt. lobe in May '07.  It was the holdup for TheraSphere that took so long, as everything else went very quickly.  After TheraSphere, I had to wait a number of months for it to do its work on the tumor, before being eligible for surgery.
 
I think you are right to concentrate on the cancer first, as I do not believe they would do transplant until it is absolutely determined that it hasn't spread...and maybe not even then.  It is also best not to have Mike's medical care scattered about in different facilities.  If you feel uncomfortable with U of M, contact Mayo.  I will tell you that they don't accept Medicaid as a primary insurance, but due to the complexity of his case, there may be a way around that (such as their charity funding.)  I do know that Mayo Jacksonville treats everyone very respectfully.  Be sure you have all reports with you and, if possible, actual film.  They will probably still go ahead with their own testing, though.  It is a paperless facility and everyone you come in contact with can pull up his info on the computer, including all recent testing and consults.
 
Best of luck and let us know what you decide.
 
Hugs,
Connie
 
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 12/20/2009 2:17:09 PM (GMT-7)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/20/2009 2:16 PM (GMT -7)   
Shanie, welcome to the forum!  It is best for you to start a new topic, rather than reply to another person's, so that you can receive specific answers to your dad's problems.  Just click on New Topic and give it a title, instead of hitting Reply.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


shanie74
New Member


Date Joined Dec 2009
Total Posts : 4
   Posted 12/20/2009 2:38 PM (GMT -7)   
Thank you very much. I appreciate it.

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 12/20/2009 9:54 PM (GMT -7)   
wow thanks for all the info guys.. will have to read it over and over again... ok... I know he doesn't have the required sobriety... would just like the cancer addressed... you know I don't think it was racism... just ignorance... I don't think these coordinators were being racist... just making assumptions... but it was so unbelievable... they just spoke with him..
I think ur right... problem is Mike is an unassuming person... not an in ur face person... his commitment to sobriety is real... as u read my earlier posts... I was adament that this choice be his I refuse to make those for someone... and this was out of the blue... one day... anyways... this is just all shock therapy... and trying to sort all the info out... he may have already signed his own death warrant by waiting so long... I told him a year ago.. but to no avail... I did not harp on him.. although I told him... he had been sober for 3 1/2 years prior... how dumb.. dumb ... dumb... dumb... but that doesn't mean we won't fight like hell... and I think he will... but he is not one to talk much.. oh, well.. he has his pitbull me in his corner... and I will be there all the way... I'm going to check into living donor also... thanks for all ur help... as we live life here on the edge... where the Lord and Angels watch over us

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 12/20/2009 9:57 PM (GMT -7)   
U of M requires 1 year... and it's most likely possible by that time that he will have attained it... anyways.. I just don't like the way we were being treated... and maybe they all are like that... trying to tough love someone... and maybe these guys need that... who knows...

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/21/2009 12:23 PM (GMT -7)   
" Never lay down in the face of overwhelming adversity ."
 
And, as they say in AA, "Don't quit before the miracle happens."
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 12/21/2009 5:57 PM (GMT -7)   
amen to all that... and I'm gonna read ur post again later tonight.. Rick... and hey he has to do what he has to do.. but that cancer needs to be addressed... but excellent news... Connie was right... Mayo would have taken him tomorrow... but anyways.. January 4th... so this advocate is happy... and yeah... he'll have to fight.. no one can do it for him... but hey this is a start and I do so appreciate you guys.. man... it was a tough weekend but right away today the Mayo Clinic was right on it... and the U of M wanted to ask why we weren't going there... and she was snotty again.. I told her because of bad service... she was just plain uppity and snotty... Mayo clinic.. whole different story and we have a wonderful nurse helping us too... God is good... and I'll have PTO time from work and now am working double shifts for the money to go... one day at a time... but we'll make it.. together... take care...

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/21/2009 8:17 PM (GMT -7)   

That is great news!!  I think you'll be very satisfied with Mayo.  They do act quickly.  Be sure to ask about the TheraSphere for Mike's cancer.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 12/21/2009 8:36 PM (GMT -7)   
yeah... see I got the packet from the U of M and the place that does their med referralls is in NY and it would take another week just to get it out there another how many weeks to get the med info...

I had already registered last night with Mayo Clinic online... I had... wanted to go to the Mayo... anyways that's where we're going... now to figure out where we're gonna stay cuz... we don't have money.. it'll happen though I'm sure somehow.. I've been working double shifts just to get the travel money up... I'm seeing double at this point... somehow God provides the strength then I go home and do caretaking also... oh, well... life is great... my guy is here and still kicking.. that's all I care about... and onward we go... thanks for ur input..

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/21/2009 9:28 PM (GMT -7)   

I can tell you that they will pack a lot into 2 days, so you will not need to stay there long.  It is very tiring and because I live in a Mayo city, I have them spread my appts. out, whenever possible.  However, for folks from out of town (or out of country), they try to get everything done quickly.  Also, if the hospital in Rochester is anything like the one in Jacksonville, they have pull-out sleeper sofas so that you can spend nights with Mike in his room and won't even need a hotel room.  Of course, for transplant down the road (if that happens), he would be in intensive care for awhile.

Try to get some rest.  Don't want you getting sick, too.  nono

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 12/21/2009 9:53 PM (GMT -7)   
oh, I'm an ole farm workhorse... last year during the flood and blizzards I workd 36 hours straight through ... snowed in with four women with mental illnesses now Rick you think u been through mental stuff.....
and this week one of the guys at the other house had an electical fire in the oven... oh, man.. nothing is easy... can't just pull a shift and go home... no have to clean the whole kitchen and sanitize after that stupid fire extinguisher went off...
yeah, we had to evacuate all the homes... we have four... and Mike and I had to evacuate... we didn't have heat last year... had to use space heaters and this year too until we got moved... so surprised I didn't start drinking myself but too busy to do any of that...
 
we're fortunate... and just darn lucky found all of u... it helps... immensely and Rick u help me share something from the man's perspective... and I get to tell the ultimate macho guy to suck it up... it's gonna get tough.. helps us to prepare... thanks.. thanks ... thanks..
Sandi

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 12/22/2009 10:29 PM (GMT -7)   
Oh rick goofball I used to teach Spanish.. Feliz Navidad... silly goose... and we are all set to go down to the Mayo January 4th through the 8th... and of all miracles.. his financial worker got the rooms all paid for... and the mileage also... so we're cool... and here I was frantically working double shifts... to get it all done... but it will still be a touch couple weeks until then... at least now I can sleep during the day... instead of being on the phone all day with social workers and secretaries... and we're going to hand carry his medical records... so it's all set... and tonight he attended AA recovery faith based meeting and he like it... I about fell over... so God does perform miracles... **** Rick!!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/22/2009 10:46 PM (GMT -7)   

What fantastic news!  Yes, miracles DO happen.  So good that you can relax a little bit now.  As for Mike going to a meeting--praise God!  And wonderful, too, that he liked it!

Big hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 12/23/2009 2:57 AM (GMT -7)   
Bowled me over that he got something out of the meeting... but then he's serious about never drinking again... because he made the choice... oh, I made my opinion clear... loudly... and let him know how ignorant... I thought his choice was... but I always came down on the side of he had to make his own choice... so off we go... Jan 3rd....

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/23/2009 10:31 AM (GMT -7)   

Rick, how about that thick, sweet cafe Cubano?  A cup or two of that and you'll be buzzin' around all day.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 12/23/2009 2:02 PM (GMT -7)   
Rick ur no fool.. and honestly think they're more than u realize out there in the trenches trudging along... and me I learned my "book" Spanish in western North Dakota and taught for a year just to get out of North Dakota... just to end back over here later... but on the "civilized side" where at least the economy is better... Mike won't let me speak Spanish... it's so bad... but I do understand better than I speak... and yes, my kids used to swear and I had no idea what they were saying.. and of course, I won't repeat it here...
See I don't think that anything I do is extra special.. it's really just the way people are supposed to be at least the way I read it in my "good" book... no more no less the way humans should be treated.. no matter what their past or walk in life... thanks for ur posts they help give a different perspective... Merry christmas all...
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