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bopanic
Posted: Wed Oct 28, 2009 10:42 pm Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
got a couple more emails from barry... sounds much better!!!

Friends,

After waiting for two weeks for the mass spectral analysis of of tissue biopsy samples to confirm the type of amyloid, and after having ALL other indicators point to ATTR (caused by the liver, "familial" amyloidosis), the test result came back from the Mayo Clinic lab in Rochester, MN. It has now shown positively that I have AL (NOT ATTR). AL stands for "Amyloidosis Light Chain" and is produced by the bone marrow. Whereas, ATTR requires a liver transplant (which is where we were heading in all this), AL can be treated with different forms of chemotherapy and/or bone marrow replacement via stem cell transplant.

I have a long road to hoe, and the doctors have to figure out the treatment plan, but, based on the report received today, the direction has shifted. Although still a very tough treatment, it means we can start the treatment fairly quickly after my appointment on Nov 9, and I am not in a position of having to wait for a liver transplant and all during such waiting time letting the amyloid further attack my organs.

Thanks for all your prayers.

I'll let you know what's occurring.

Sincerely,
--
* * * * * * * * * * * * * * * * * *
Barry E. Breen
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bopanic
Posted: Wed Oct 28, 2009 10:45 pm Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
so good to hear the prayers are working! hang in there big guy and we WILL see you on NYE!!!

Bo,

All those prayers must be having an effect, and I really appreciate them. Today was the first good news I have had since my amyloidosis diagnosis. After all the tests which have been pointing towards the ATTR version of the disease, and a potential liver transplant, a final test for definitive typing was completed today. It was confirmed I have AL (light chain) amyloid and not ATTR. This means chemo therapy can treat it (and probably a bone marrow/stem cell transplant). But, to me, this is GREAT news. This is because I would have had to wait probably a year for a liver (on the average) and during that time the illness (amyloid substance) would be further attacking my organs and weakening the body functions. Now, I should be able to obtain treatment relatively soon. My next appointment at the Mayo Clinic is Nov 9, and I should have a firm plan shortly thereafter. I am still hoping to see you all on New Years!

Thanks again for your prayers. I really appreciate them.
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pittsyltucky
Posted: Thu Oct 29, 2009 4:04 am Reply with quote
*Johnny* Joined: 15 Sep 2006 Posts: 4268 Location: Pigg River District, Pittsylvania County, Virginia
Oh, thank God!!!! Great news!!!!

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kg
Posted: Thu Oct 29, 2009 7:02 am Reply with quote
*Data Miner* Joined: 30 Jun 2007 Posts: 3427
Excellent!

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Chigger
Posted: Thu Oct 29, 2009 3:45 pm Reply with quote
*Lucky No. 7* Joined: 30 Jul 2008 Posts: 1358 Location: McMinnville, Tennessee
Awesome! Though it's not a miracle cure, it seems much better than he initially thought!

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lbrod
Posted: Thu Oct 29, 2009 5:21 pm Reply with quote
*Bloodshot Hot Rod* Joined: 02 Jul 2008 Posts: 1358 Location: Beneath Pacheco Pass
Thanks for the updates, Bo. Sounds like Barry is a fighter just catching his second wind. We'll all keep a happy thought out for him.
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bopanic
Posted: Thu Nov 12, 2009 12:04 am Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
good news...

Dear Bo,

Well, I wanted to wait until I had something definitive regarding my health situation. It seems even one of the most advanced medical facilities in the world has its issues. But, nevertheless it is a place where miracles do happen, and as you read on you'll see that medical science remains rather hazy in some areas.

I had advised you that my tissue biopsy came back typed as the "AL" version of amyloidosis (although all other signs pointed to ATTR). Well, I had a DNA test to check for any mutation of the TTR (Transthyretin) gene (which is classic ATTR), AND they re-tested by tissue biopsy using mass spectrometry (electron microscopy). The TTR gene does have the mutation (for those who want the scientific explanation it is the Thr-60-ala variant or T60a for short); additionally, the re-tested tissue came back as ATTR. So, there is no doubt any longer. By the way, the false test was due to them mixing up the results from two different patients........sounds like a plot for a good movie).

Well, what does all this mean? I am at the Mayo Clinic as I type this, and I have an appointment with the liver transplant department/doctor(s) tomorrow (11/12). Lots of my questions will be answered, and I am sure more will germinate. Recall that the liver is what produced the abnormal amyloid protein in ATTR patients. So, really the only treatment option, other than watching the situation progress slowly to heart failure is the transplant. I must weight the survival rates in patients exactly like me who have had transplants with those who have not and reach a decision. However, I am proceeding on course for a transplant so that I can get on the list in the national database as soon as possible. There is typically a reasonable wait, although the match with one's placement on the list can occur at any time.

That said, the good news is that it is most likely I'll be able to be at the OCMS on New Years Eve!!!!!!!!!!! .....and with my current liver which allows me margaritas......Of course, a match could come up quickly which messes up all my plans, but looking at it correctly, that is also good news. So really, I am in a win-win situation....(how did I write that?).

One last comment right now. So far there are three chapters in this book: 1. Something seriously wrong and changing with one's body functions followed by endless medical tests with no answers and GI doctors thinking your a hypochondriac (or nuts)--and this occurring over a 8 month period; 2. A smart young cardiologist suspecting and correctly diagnosing a rare illness--over a 2 month period; 3. Intense diagnostics at a leading medical clinic to get a specific detailed diagnosis, treatment options and prognosis--over a 1 month period (and even having the experts screw up the handling of some data, to boot); 4...........(engage treatment....) (yet to be written).

So, I may get to hear my favorite songs from my favorite group after all. Keep your fingers crossed for New Years (and I am bringing three friends).

Thanks for all your thoughts and prayers,
Sincerely,
Barry
aka: ruralvoice
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kg
Posted: Thu Nov 12, 2009 7:08 am Reply with quote
*Data Miner* Joined: 30 Jun 2007 Posts: 3427
Barry is so upbeat! Very encouraging! What an admirable guy!

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Even though you can't expect to defeat the absurdity of the world, you must make that attempt. That's morality, that's religion. That's art. That's life. --Phil Ochs
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Benmancrowfan
Posted: Thu Nov 12, 2009 8:16 am Reply with quote
Old Crow Joined: 17 Sep 2008 Posts: 570 Location: Jackson, Miss
Totally agree... It says alot with how positive he is, compared to someone sulking about there situation... gives us all someone to look at to see the true meaning of life.

KEEP FIGHTING BROTHER!!!!

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pittsyltucky
Posted: Thu Nov 12, 2009 10:15 am Reply with quote
*Johnny* Joined: 15 Sep 2006 Posts: 4268 Location: Pigg River District, Pittsylvania County, Virginia
Praise the Lord and pass the ammunition!

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DeanRogers
Posted: Thu Nov 12, 2009 10:30 pm Reply with quote
Charlie Joined: 06 Jul 2006 Posts: 896 Location: Ocean City, MD
I have met Barry at a couple shows, I am sorry to hear you have to go through this, I too have been message board absent and out of the loop for a spell. Looks as though things are looking up I wish you the best in the remainder of this journey my friend. I don't really do a whole bunch of praying until something like this happens, I don't think that makes my prayers less valuable than anyone elses , I will be praying for your recovery Barry and hope to see you out at a show real soon.

Thanks Bo (by the way Bo, did you dump me on the facebook cause I am anti-obama? Smile )

Dean Rogers

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bopanic
Posted: Thu Nov 12, 2009 11:09 pm Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
hahaha... no i deleted it for a while and just brought it back cause its like crack... Laughing
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indeedinoditsistern
Posted: Fri Nov 13, 2009 11:25 am Reply with quote
*Garfunkled* Joined: 22 Jan 2008 Posts: 1523 Location: Hokes Bluff AL.
bopanic wrote:
hahaha... no i deleted it for a while and just brought it back cause its like crack... Laughing


Wongton Honkytong?

nice. FB does get kinda hairy some times. my alias helps me keep things under control. and causes mass confusion.
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Chigger
Posted: Fri Nov 13, 2009 8:51 pm Reply with quote
*Lucky No. 7* Joined: 30 Jul 2008 Posts: 1358 Location: McMinnville, Tennessee
That FB got way to busy for me- had to quit it cold turkey. Bo's right, it was like crack and I just didn't have the money! (or time, if ya wanna get right down to it... Very Happy )

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ruralvoice
Posted: Sat Nov 14, 2009 6:23 pm Reply with quote
Tearin' it Down Joined: 03 Jul 2006 Posts: 179 Location: Melbourne, FL
Hey, I know you have been keeping up with my health situation in this thread, and I thank Bo and all of you for that--thanks a miliion. I just wanted you to know that in case I don't have to be at the Mayo Clinic on Dec 3 I DO have a ticket for the Dave Rawlings show. Maybe we can hook for dinner before the show. Also, I now know I can arrange my schedule to attend the new year's show!!! If all were to go as planned, and I can get ln the liver transplant list, I will temporarily relocate to the Florida area on or about Jan 5, and then the waiting process starts. One has to be within a 4 hour drive of the facility at ALL times to be able to be placed on the list. it is a 3-6 week recovery after a transplant near the facility, barring complications (and immunosuppressent drug for life). Then, I can return home and be monitored locally in Nashville. My guess it would take 3-5 months wait prior to a transplant.

I know this sounds bizarre, and I can explain it in person, but due to the nature of this illness and the fact it takes six decades to affect someone, on average, they can actually use my liver to save someone's life simultaneously with any transplant I might receive. They would put mine into someone who was 40 years old or older because they would die of old age before the affects from my liver could occur. I started thinking to myself, maybe the good Lord has someone he wants to save because he/she is going to do something wonderful in the world, and he needs my liver. That would really be cool-if I could recover and someone else could live and do something great.

See y'all soon, Jan 31 and possible Dec 3........

I'll let Bo know what is happening as I haven't had much time to engage here for obvious reasons, but I wanted to write a personal note.

Barry
aka: Ruralvoice
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Chigger
Posted: Sun Nov 15, 2009 6:32 pm Reply with quote
*Lucky No. 7* Joined: 30 Jul 2008 Posts: 1358 Location: McMinnville, Tennessee
That is just great, Barry! We are all pulling for you 'round here, and l look forward to seeing you on New Years eve!

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pittsyltucky
Posted: Sun Nov 15, 2009 8:39 pm Reply with quote
*Johnny* Joined: 15 Sep 2006 Posts: 4268 Location: Pigg River District, Pittsylvania County, Virginia
ditto.

I'm totally amazed at how this is unfolding, Barry. It is so true sometimes that everything happens for a reason.

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bopanic
Posted: Tue Dec 22, 2009 11:45 am Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
another update

Bo,

I have completed the pre-transplant evaluation here at the Mayo Clinic (sure glad I picked Florida rather than Minnesota---at least I can be warmer.....). I met with the transplant doctor earlier today. He indicated that all tests indicate I am a healthy candidate for a transplant. He is recommending me to the transplant committee this wed (12/23) for addition to the transplant list. If I'm approved then I told them I would relocate to the Florida area on Jan 5 to begin the wait. I'll keep you posted on the outcome.

Barry
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bopanic
Posted: Thu Dec 24, 2009 10:41 am Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
another update from barry... GREAT NEWS!

I just received news from the Mayo Clinic that I have been accepted and will become active on the list for a liver transplant upon insurance approval (expected within a couple days) and my relocation. So, everything is proceeding--I am planning on relocation to await a transplant on Jan 5. It was wonderful news to receive the phone call from the transplant coordinator at 5:17pm ET today, 12/23.
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Chigger
Posted: Thu Dec 24, 2009 3:34 pm Reply with quote
*Lucky No. 7* Joined: 30 Jul 2008 Posts: 1358 Location: McMinnville, Tennessee
That IS great news! A wonderful Christmas present to Rural!

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Jumpin' Bean
Posted: Thu Dec 24, 2009 4:37 pm Reply with quote
Thousandaire Joined: 25 Sep 2008 Posts: 1018 Location: Madison, WI
YEAH! Now we all have a little more reason to celebrate!

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lbrod
Posted: Thu Dec 24, 2009 6:15 pm Reply with quote
*Bloodshot Hot Rod* Joined: 02 Jul 2008 Posts: 1358 Location: Beneath Pacheco Pass
Sweet! This will make the new year happier for us all.
Let's send off the old liver in style!
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bopanic
Posted: Fri Dec 25, 2009 1:23 pm Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
everyone can wish him a lil luck on NYE @ the ryman!

no beers for barry that night... Laughing
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trtle8819
Posted: Sat Dec 26, 2009 2:15 pm Reply with quote
Old Crow Joined: 01 Apr 2007 Posts: 332 Location: Chattanooga, Tennessee
Great news! Thanks, Bo.
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bopanic
Posted: Wed Dec 30, 2009 12:13 pm Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
latest news...

Friends,

Today I received a New Year's gift--approval from my health insurer for the transplant. I am relocating to Florida commencing Jan 6. My mail will be forwarded to me during this period. I'll have a friend send everyone notification upon my surgery, whenever a matching donor should reach me on the transplant list. The average wait time for my particular condition and status is 3 months but this could be less or more.

Barry
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Chigger
Posted: Wed Dec 30, 2009 1:39 pm Reply with quote
*Lucky No. 7* Joined: 30 Jul 2008 Posts: 1358 Location: McMinnville, Tennessee
Sweet! Let's pray for a short wait for Barry.

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lbrod
Posted: Wed Dec 30, 2009 4:46 pm Reply with quote
*Bloodshot Hot Rod* Joined: 02 Jul 2008 Posts: 1358 Location: Beneath Pacheco Pass
Now that is damn good news about the insurer.
This new years keeps getting better.
Let's keep smiling until tomorrow!
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newfan
Posted: Fri Jan 01, 2010 12:38 am Reply with quote
Raisin' a Ruckus Joined: 02 May 2007 Posts: 112
Guessing that dedication in the encore was for you tonight! You have all our blessing, hopes and good thoughts!

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indeedinoditsistern
Posted: Fri Jan 01, 2010 12:56 am Reply with quote
*Garfunkled* Joined: 22 Jan 2008 Posts: 1523 Location: Hokes Bluff AL.
yeah i've only heard them do one song "for" anybody that i can remember and that was porter wagoner. so when they said "this ones for your whoever" i was surprised. then i thought..barry...they said barry!
nice.
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ruralvoice
Posted: Fri Jan 01, 2010 3:15 pm Reply with quote
Tearin' it Down Joined: 03 Jul 2006 Posts: 179 Location: Melbourne, FL
All the Old Crow gang,

You have know idea how surprised I was when Willie turned and pointed to me and said "Barry, this one's for you". I had wanted them to do "Fall on My Knees" and I know that Pittsy had sent a note (thanks Steve!), but I never dreamed they would actually dedicate it. I was absolutely astonished and most appreciative. I wanted to thank Willy personally, but I didn't get a chance to at the end. I really want to do that.

I must say, and tell you all, that really made my year. And, as I look forward to what lay ahead, I will always treasure NYE at the Ryman.

Thanks for all your support. I'll let Bo know my status so he can post it, or I will have a friend who knows send him a note.

HAPPY NEW YEAR!!

Barry (aka: ruralvoice)
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