Let's keep Jackie's heartbeating, keep sharing! Thank-you!

$21,557raised of $75,000 goal
28%

Organizer: Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston Beneficiary: Jacqueline Austin (Jackie)

FOR A MOST RECENT UPDATE READ THE ENTRY FROM OCTOBER 27,2014...also, each day brings new strength. It will take time to get back in the saddle but I am sure I will. I am walking the path of medical debt bankruptcy. Humilitaing and deeply depressing. I am hoping for a miracle that will change the journey. Thank-you for your help so far, you have kept me alive.
Thank-you for any help you may give, it will help me start over.
With gratitude, Jackie

THIS IS THE ORIGINAL STORY:

For those of you who may not know me, I am 53 and a proud Mom of adult children that I adore and deeply admire. I live in the beautiful mountains in Asheville, NC.  I am primarily a decorative painter/mural artist who ran two small businesses prior to this health decline. I would describe myself as someone who loves to laugh, finds pleasure in the simple things, and I consider my friends and family my greatest fortune. I enjoy competitive rowing, hiking, living in the mountains, making art, making new friends, puppy breath and anything that involves being in nature.  I’d like to tell you my story.

Four years ago, I was diagnosed with severe iron deficiency anemia and internal bleeding that is hiding somewhere in my gastrointestinal tract. During periods of intense bleeding, simple activities like going up a flight of stairs is a challenge and carrying out routine activities becomes completely overwhelming, physically and emotionally. Being up on ladders working as a decorative painter came to a halt, and I have since had to close my business. I have taken on part-time jobs that requires less physical effort and does not completely deplete my reduced energy.  My economic well being has crumbled since this strange health malady has come to pay me a visit.

The health adventure journey:
I have been repeatedly poked, pricked, prodded, put to sleep, x-rayed, cat-scanned, have swallowed cameras, drank nuclear medicine, have been in and out of the hospital for days at a time and have swallowed gallons of nasty surgical prep that tastes like slimy sea water over and over again.
I am grateful for all the medical efforts, but after thousands of dollars in testing, the Doctors have no answers as to where this elusive bleeding is hiding.  I am a patient of 8 different doctors and a renowned teaching hospital. 
I have tried mulitiple alternative measures; I have seen healers, had crowns replaced thinking maybe I had metal poisoning, I have rubbed creams, swallowed homeopathics, have even been given herbs that have stopped bleeding in race horses! I have drank food for months at time. They all came up empty.I have also been on my knees begging for healing.

Currently, the only way to keep my blood oxygenated and heart pumping, is by getting regular iron infusions. Each infusion takes about 5 hours.  My Oncologist told me frankly that without the infusions my heart will stop. The iron infusions do give me small reprieves. Unfortunately the bleeding never stops and it is just a matter of time before my blood numbers tank and I am forced to go back for iron. I like to think of myself as tenacious and strong. Most of the time no one knows what is going on behind my smile.I have days when the charade works but there are other days that can be dark and unyeilding. Only my closest friends and family know the extent of my tears and struggle. 

When the iron levels run out, I am often hidden away, awash in tears, sleeping a bunch and cave into feeling paralyzed by fear.I am blessed with an abundance of freinds and family who have cheered me on throughout this journey. I so desperately want to be healed.

So here I am, writing to you on this You Caring site feeling deeply humbled and hopeful at the same time.

I will need to be iron infused for the rest of my life to stay alive if they can't figure out where I am bleeding.  I am deeply grateful for the iron drips, I would also be most grateful to get my life back and not need a drip at all! 

Today 6/17/14, it occured to me I should update the game plan. Since we launched this site a year ago the journey has gone in many directions. I have a new Dr. in  Hendersonville ( Dr.Caserio) actually listened to my story and believed me when I told him I thought there was more than one malady at work inside my body. He ordered new tests and discovered I was carrying 2 lethal bacterias that would have ended my life had they not been discovered! I was hoping it was the cure. It was not, but hey, I am still here and the focus can now go back to the search to find the bleeding. I am no longer persueing Mayo Clinic. The new Doctor along with a fantastic Naturopathic Doctor are searching far and wide to help me. The focus for care remains here in Asheville but I am willing to go ANYWHERE I can get help.
Your donations will help on so many levels. They will help ease the crushing expenses I have incurred this far.They will allow me to continue to search even if it means finding a specialist in another country. Please share this site for me, email the url, tweet, flick, post, Pin it or send it out to what ever else is out there!

Thank you for taking the time to get to know me during this challenging time. If you have made it this far without totally glazing over....I would encourage you to watch the video Cera made for me. Just click on the picture of me and the great horned owl. Thank-you Cera for the beautiful work.
I look forward to pursuing healing hand-in-hand with you.  I will keep you posted! 
On a personal note...paypal sent me a 1099 last year for donations. My accountant did not know what to do as the donations are for medical expenses not work.  It turned into a big mess. My accountant encouraged checks when possible written directly to me to avoid the mess the 1099 caused last year. Either way....
With love and gratitude, Jackie
In addition to Pay Pal, donations can also me mailed by check to:
Jackie Austin
P.O Box 893
Asheville,NC 28801

 

Updates

Updates

10/27/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
THE WINDS OF CHANGE...
The cape in the picture is made of some of my medical bills. I made it to wear to a Fund Raising Event to raise money for Women Helping Women of the Pardee Foundation this weekend.
Last December Callie Walston Davis contacted Women Helping Women and told them about me. They instantly pulled me into their program and sent me to their diagnostic Physicians. I met Dr. Caserio.
During my first visit he determined what the problem may be and did one simple test. A test I have begged for throughout this entire health journey, a test I was told was unnecessary.
After 5 years of medical testing, hospital stays, general anesthesia over and over again,complete financial ruin and emotional torment, it was discovered with that simple test I had H-Pylori. A bacteria that Dr.Caserio said was in my system for a long, long time.Left in my system it was slowly killing me. Needless to say, Dr.Caserio is my hero. He treated me accordingly and we waited.
The health update: I have not had to get infused with iron for 10 months. By March my blood numbers started creeping back up on their own. Still sick, they determined my gallbladder had to come out. I am healing well from that but feeling less and less nauseous every day. I am working with a great Naturopathic Doctor Frank Trombetta to get my gut back in order.
The winds have changed...
I am facing bankruptcy. A journey I would like to forgo but one I can't avoid. The harrassing calls and threatening letters add great stress and surely do not help in the healing process. 
It is now time to pick up after the storm. 
I have no idea what is next, it is going to take time and we are all hoping this was the cure, that the bleeding will not return. I am counting on it!
Thank-you for standing with me. Thank-you Women Helping Women. I wanted to make sure you knew change is in the air.
With deep gratitude and love to you all
Jackie


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09/10/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
The gallbladder is out, Cera is by my side. Glad to have the surgery behind me and remain ever so grateful for all the love and support.
XXOO Jackie
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09/08/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Heading in tomorrow to get the old funky gallbladder taken out.
Just ready to have it over with. The idea of not feel nauseous all the time sounds quite nice!
Prayer warriors and partners in love, I ask that you go with me.
This may be part of a major piece of the puzzle.
I am counting on it.
Thank-you my darlings
Love,
Jackie
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08/28/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Thank-you my dears for your constant support and inquiries about my health journey.I promised you an update:
Since Dr.Caserio treated me for the lethal virus in December my numbers have been holding steady. Much to be grateful for in the blood dept.
I guess my gallbladder bit the dust during this journey and it will be taken out on Sept.9th. The surgery may end the constant nausea...that would be so very lovely.
The other challenges are out of my hands.My room flooded 2 days ago for the 3rd time in a year. Carpet is up et. Not fun but not a lethal disease.Filling for bankruptcy but no longer afraid of that either. I will rise again.Hugs and love to you all for keeping me alive!
Jackie
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08/28/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Thank-you my dears for your constant support and inquiries about my health journey.I promised you an update:
Since Dr.Caserio treated me for the lethal virus in December my numbers have been holding steady. Much to be grateful for in the blood dept.
I guess my gallbladder bit the dust during this journey and it will be taken out on Sept.9th. The surgery may end the constant nausea...that would be so very lovely.
The other challenges are out of my hands.My room flooded 2 days ago for the 3rd time in a year. Carpet is up et. Not fun but not a lethal disease.Filling for bankruptcy but no longer afraid of that either. I will rise again.Hugs and love to you all for keeping me alive!
Jackie
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07/01/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Newest adventure is a possible funky gallbladder to throw into the mix. Getting opinions from across the board. I will know more next week. Long term Iron Deficiency can hurt your gallbladder. Went through a test tied down to a table yesterday inside a tube. The drip made me sick.  Been as stoic as I can be through the years but something about the test yesterday broke open some deep exhaustion that busted out right there on the table. Blew up into tears that I could not stop. The poor radiologists did not know what to do with me. I kept reassuring him he did nothing, I was just exhausted from being sick, tired and financially wrecked for what feels like too long. He was so very patient and kind. Even walked me to my car. Angels have appeared througout this journey.
Any new fund raising ideas are more than welcome. Thank-you for your continued love and support. For those of you who I have exhausted with my tears...I do not know what I would do without you. Thanks for catching them when they fall and for your endless support. Love,Jackie



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06/17/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston

Thank-you again for asking...

I am always touched by the random people I bump into who request an update on my journey. I figured these updates are boring.

The latest is:

They still don't know what is wrong. I will celebrate the 5 year mark of this mystery in November.

The You Caring account carried me through last year and I can't begin to imagine how I would have endured the ride without your help.

The account is now empty. The funds kept my heart beating, and kept my spirits lifted just knowing you were behind me. My gratitude overflows.

The tests continue along with all the supplements et.

Not sure how to it will all work out but not losing hope.

If any of you have ideas for medical fund raising outside the box, email and let me know.

Thank-you for your continued kindness and support. I love you all, Jackie

 


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06/03/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
For those of you who have been asking...and by the way, thank-you for that!

Last month my numbers went up all by themselves. Still bleeding but felt excited about the new turn.
Yesterday I found out they are going down again.
A little disheartening but still determined to press on and seek the cure.

Fund raising has tanked out for the most part. If there are any creative folks out there with new ideas, send them my way. It looks like the journey will be a bit longer and new energy is needed pumped into finding the resources to help pull out of this adventure.

Thank-you for asking, thank-you for caring, thank-you for holding my hand through this adventure.
Thank-you for sharing this site.
Jackie




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05/07/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Some light shining....

Just a quick update and as always a thank-you to those of you who recently donated and to all of you for continueing to hold me up during this journey.

For the moment the two deadly bacterias that snuck into this bleeding malady have been completely killed off! We do not know yet if they are related to the mystery bleed. As soon as my belly has a chance to heal from years of being over taken by those nasty buggers we might possibly have stumbled onto a very big break in the case.

A big thank-you to Frank Trombetta of WNC Functional Health for sending me home with herbs that tasted kitchen compost but worked like magic. His devotion to helping me get better has restored my faith in health care healers.

Thanks for hanging with me...getting closer every day.
The cost remains ridiculous, the reward pf being able to get help remains what keeps me smiling.
Love to you all
Jackie







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04/11/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston

Happy Spring to you all,

We are gearing up for a fund raiser here in Asheville on Tuesday, April 15th at 7pm. Our children grew up in Weaverville with the Miller family. When Jon-Michael was in the first grade he wrote a poem and stated that if anything ever happened to me it would be okay if Lori Miller became his Mom!

The Miller family is sponsoring the fund raiser at their new Cider Bar called the Urban Orchard. They contacted me and graciously offered to dedicate an evening to help. It should be great fun. We are auctioning off local celebrities, many of them are my housemates, along with beautiful art. Pierce Edens will be performing and the Cider is fabulous!

I will say it over and over again, I am humbled and awed by the kindness that has been extended to me.

Health report: Still bleeding, the numbers are dipping but at least the blood is leaving slowly which makes functioning much more tolerable. I will get iron when the numbers say so. The task of staying well has become routine at this point. The lethal bacteria that snuck in while no one was looking is being addressed and I will find out in a few weeks if we knocked it out. I still feel confident we are getting closer to figuring this malady out. Naps are wonderful, friends are even better.......Thank-You! XXOO


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03/25/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Got to spend time with my dear highschool friend Laurie Milne Devaney. While traveling to meet her I found out the results of my re-test for the deadly bacteria they discovered in Dec. The good news is that bacteria has been killed off. The hurdle is a new bacteria has taken up residency and is more lethal than the first. It is antibiotic resistant. 
We ended up laughing and reveling in how life sneaks up on us all. The difference is how we respond to the hurdles.
You all have made my hurdles easier to pass over by standing with me through this journey.
We will figure out a way around this new bump and I am still holding on the belief they will find the bleed as well along the way.
Love and more love to you all
Jackie


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03/14/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Hi my dears,

Just a quick update as some of you have asked.
Due to Callie Walston's support and determination, I am being cared for by a team of Doctors in Hendersonville that are seriously determined to find this bleed. They did find a deadly bacteria that was seperate from the bleed. I was treated and can eat without agony for the first time in years. That alone is worth celebrating.
Urban Orchard in Asheville is owned by dear friends of mine (Thom and Lori Miller)  are hosting a fund raiser for me on Tuesday, April 15th at 7pm. We are going to auction off local celebrities and Pierce Edens will be playing.Should be a fun night. Come on out if you can.
I continue to be awed and overcome by the love and support I am have been bathed in. 
We will continue the search for the bleed and in the mean time I am happy to be alive and surrounded by all of you.
Much love, Jackie


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02/25/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Taxes and spring bulbs....

Sat with my pile of medical receipts to get ready for taxes. By the time I added up the pile, I was covered in tears. These were not overdue bills, they were PAID bills. 
I am still ignoring most of them, but the ones I have to pay to stay alive were paid for with your help.
I sat blubbering and grateful. Walked outside to stumble on a clump of fresh spring bulbs. Hope springs eternal...Thank-you again for your support. I still believe this is going to be the year they find the leak and I will walk forward with all of you each step of the way.
XXOO over flowing....

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02/06/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
In good hands....


The change in Doctors and alternative practitioners has helped inject me with the hope of finding the bleed for the first time in a long, long time. They are on the most intense hunt I have experienced in 4 plus years.I will keep you posted.
My blood numbers are tanking and I will be back in the iron chair soon. This is just how this journey works.
I feel fortunate to have access to the iron and often find the time in the chair to be some of my most grateful moments.
Just wanted to say hi and repeat....Thank-you! I love you!
Jackie


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01/22/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Sweet Erin encouraged me at Yoga to update my page. I told her I think it gets boring. She disagreed and said she liked knowing what was going on. So here we go...

Still bleeding. The good news is I am all juiced up on iron so will run and play while I can. 

Dr.Caserio became a hero when he believed me when I told him I thought some of this mess was bacteria. He tested me specifically and found out I had 3 forms of H-Pyloria and I was told it would have killed me. I am still not sure what to do with that part of the story. I begged for years to be tested and was told it was unnecessary.
Been put to sleep alot since labor day.The bleeding remains a mystery. I have knew anesthesia rules. No talking on the phone or making decisions of any kind post anesthesia. Each time I get put to sleep it gets harder and harder to recover. I cry alot, feel knocked down, defeated and beaten up. 
So the update is:
I have to be watched carefully as the H-Pyloria has been there a long time. It was treated, now I will be on cancer watch and retested often.
The bleeding..new protocol is to pump my stomach immediately if I know I have sprung a leak (usually I know when the leak blows out heavy) and be put under as fast as possible to try to catch the leak in action.
Last time I blew heavy was Labor Day and Wake Forest turned me away. That will not happen again.
In the mean time I continue to get Cat Scans, Ultrasounds, blood draws and Doctor appointments.

Cera has joined me for the full day health adventures and it has been a lot of fun to have her. I have also been blessed with lovely, kind visitors in the iron chair. Makes a big difference.
The bills keep piling in. I deal with what I can and  write letters to the rest asking for patience.
If you feel so lead to share this page again, I would be most grateful.
I remain humbled and thankful for all your love,
Jackie




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01/14/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
CAT SCANS and a New Year

Cera and I were toasting to 2014 with a sense of great hope and optimism. We both felt 2013 had not played fair on the playground and we both were ready for some fresh air.
I  feel a deep sense of hope that this is the year they are going to zero in on this health journey.
After growing a beard while being on hold for hours getting new insurance with the Affordable Helath Care Act, I sensed that maybe the new company will say yes where Coventry said no, maybe the bills won't be as high. We shall see.
Had a big CAT Scan. All looked okay except for some soft tissue spots here and there. Going back for more time in the tubes just to make sure. I am not woriied. It will be as it will be.In the mean time I remain grateful and send love to you all for your constant love and kindness. XXOO Jackie






 
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01/06/2014
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Body Scans and laughter...
So Cera came with me today for long day of laying and sitting in tubes for full body scans. I loved having her there. The time goes by quickly and we got to catch up. We watched a screen slowly create a skeleton of me right before our eyes. The tech stepped out and Cera grabbed her nose and started full belly snickering. With a bright red, joyful face
she giggles out....
" I love that I can see your bones and the outline of your butt all smashed out on the table!" That's my girl!

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12/31/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston

 

 

Writing to you from the iron infusion chair...

 

This hangs on the fridge at Hanger Hall:

 

Call it a clan, call it a network, call it a family, what ever you call it, who ever you are, you need one.”

 

To my family, clan, network, army of support angels, friends and strangers....THANK-YOU for keeping me alive!

Thank-you for holding me up when all I wanted to do was lay down and go to sleep forever. Thank-you strangers for stepping into my path and showing me kindness, support and love.

Thank-you for the outpouring of generosity, cards, letters, FB posts, words of encouragement, prayers and love.

Thank-you for stepping up with great courage to help me find help (Callie Walston), thank-you for giving me that same courage to keep on fighting this health mystery.

The journey continues, the bills keep flooding in...just knowing I am not alone in this battle means more to me than you will ever know.

I send this New Years Eve note out to all of you with great love from a heart that gets to keep on beating because of you! Blessings and wishes for love and peace to you all.

Jackie

 

 

 


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12/20/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
When paths cross...

Three years ago I met a man on the streets while dining with my dear friend Felicia.
We all had a good laugh together and off he went. Fast forward we meet again randomly at an all night long healing ceremony. I find out he is a Naturopathic Doc. He took great interest in my health journey. He implored me to come visit his office. 
Since that time he has sprung into action on my behalf.
I tested positive for 3 strains of H-Pylori. One of them is lethal and antibiotic resistant.I finish the antibiotics on Christmas Eve and will find out if they worked when I get home.I had no idea there was something else inside me that was on the fast track of trying to kill me along with the bleeding. Callie Walston (XXOO) was the magic behind this new road I am traveling on.The Western Doctros say the H-Pylori is unrelated to the bleeding ( still bleeding) but the Naturopathic Doc feels it is just a matter of patience and lots of testing to unravel the connection. He has called fellow Doctors across the country to consult and has checked in with me constantly.I feel cared for and not just pushed through the system. I get one more bag of iron on the 30th which will hold me for a spell. Love that I will be temporarily juiced up with good blood over the holidays. The weathervane of discovery has moved in a new direction this week. I feel sense hope for the first time in years. Christmas showed up at my house early....hope in a box! Thank-you my loves for your continued support and thank-you for continueing to share this site!
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12/20/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
When paths cross...

Three years ago I met a man on the streets while dining with my dear friend Felicia.
We all had a good laugh together and off he went. Fast forward we meet again randomly at an all night long healing ceremony. I find out he is a Naturopathic Doc. He took great interest in my health journey. He implored me to come visit his office. 
Since that time he has sprung into action on my behalf.
I tested positive for 3 strains of H-Pylori. One of them is lethal and antibiotic resistant.I finish the antibiotics on Christmas Eve and will find out if they worked when I get home.I had no idea there was something else inside me that was on the fast track of trying to kill me along with the bleeding. Callie Walston (XXOO) was the magic behind this new road I am traveling on.The Western Doctros say the H-Pylori is unrelated to the bleeding ( still bleeding) but the Naturopathic Doc feels it is just a matter of patience and lots of testing to unravel the connection. He has called fellow Doctors across the country to consult and has checked in with me constantly.I feel cared for and not just pushed through the system. I get one more bag of iron on the 30th which will hold me for a spell. Love that I will be temporarily juiced up with good blood over the holidays. The weathervane of discovery has moved in a new direction this week. I feel sense hope for the first time in years. Christmas showed up at my house early....hope in a box! Thank-you my loves for your continued support and thank-you for continueing to share this site!
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12/11/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Sitting in the iron chair today surrounded by all the true warriors. I never cease to be amazed by their courage.
Got some good news yesterday. 
A new Doctor took a new approach to investigate the pain in my belly and found out I have 3 different kinds of serious bacterias that have taken up residency in my belly. Left untreated they can morph into cancer. So grateful for his willingness to really listen to me. 
Being treated and may be able to eat normally without pain for the first time in years once the meds do their work.
I was told this finding will not stop the bleeding but it sure will help me feel better. 
Inch by inch, miracle by miracle...getting closer and your prayers the wings.
Thank-you...what gifts you all are to me.
Please keep sharing...we will get there,I am full of hope. Love,Jackie
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11/27/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
This Thanksgiving....

"Gratitude changes the pangs of memory into tranquil joy." 
Dietrich Bonhoeffer

Thank-you my dear, wonderful friends for the tranquil joy you have given me.
You are my heartbeat. Much love, Jackie
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11/20/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston

The Iron Chair and the Magnificent Molly...just wanted to share some good juju.

 

Getting infused with iron is no big deal. Other than a big time commitment, it is painless and as I have mentioned before I am in a room with people of all ages fighting for their lives getting chemo and other nasty colored poison pumped into their veins. Iron looks like lollipops in comparison.Getting to the point of needing iron can be a challenge but I remain grateful to be able to get what I need, when my body says it needs it.

Anyway...Molly is the visiting service dog. I have worked with service dogs and find them to be unusually noble animals.

Molly's owner told us her story. She was born to a puppy mill monster. There were so many puppies smashed into a cage she rolled over on one and it passed. The owner was going to end her life and the rest of the litter because of her mishap and fleas. The whole lot was rescued and Molly went on to be trained as a service dog. The story made visiting with her even sweeter.

So in the midst of this journey there are gifts and delightful surprises that remind me how very fortunate I am. Two more bags of iron to go over the next few weeks to put patch the leak, then it is time play hard and dance big! Thank-you for you love and continued support.  


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11/11/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Getting infused today. After being put to sleep repeatedly over the past 6 weeks, all the Docs involved in my case have for the most part given up on me. They are encouraging me to accept infusions as a way of life and not chase this bleed any further. To get to the point of needing iron my numbers have to tank,I feel like a dishrag and it is a dangerous way to exist affecting every organ in my body.  The You Caring Money has been hit heavily and to find a Doctor somewhere in this big world that is willing to go the distance and find this bleed is going to take a big donor or sponsors to get me there.
I am not giving up,my peeps are standing with me and I am eternally grateful to you all. Any ideas for big sponsors ,let me know.
Love,Love,Love to you all!
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10/31/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
When things are not really what they seem...where to turn? 
I recently wrote how stunned I was that my new GI Doctor would call on a Sunday and make a big time procedure happen at Duke over night after seeing something from the camera swallow I did last Friday. I gave him kudos and felt for the first time I had a team player in this health misadventure. He worked hard to get me to Duke on very short notice.The Doctors at Duke put me to sleep,explored and found nothing. Long procedure, lots of pain. The young surgeon basically told me to go home, accept the bleed can't be found and live on iron. I called my team player Doctor here in Hendersonville and asked what his new game plan was. I got a voicemail back from his nurse just before leaving work. I was shocked to listen and hear her tell me my new Doctor agrees with Duke, that there is nothing he can do to help me, that living on iron infusions when my numbers totally tank is my path. It was a horrific voicemail. It was tossed at me like a frisbee. To get to the point of needing iron, my heart is in danger of stopping and I am 1/4 of a person. It is not like advising me to get a manicure every two weeks. I am at loss. I am asking yet again for help as this is not living and I am wearing down to pulp. I do not know where to turn. Big Tears
 

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10/29/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Goodnight dear warriors...
Duke found nothing. Not a even a peep, a hint of the bleeding source. I left my phone wrapped in my blanket and it is now probably twirling in the giant washers in the laundry dept. I am going to borrow a phone. I do not have your contacts so call me! One because I love you, two because I need you numbers!
They used some kind of spiral tool (different from any test I have had) my throat hurts alot and I woke up doing a little exorcism routine but other than that the walk continues. The bills keep coming.
Keep sharing, keep believing with me. I need you.
Love,Jackie
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10/28/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Finger,toes,ankles,braids crossed..........PRAYERS

In the four years I have walked this path I have NEVER gotten a call from a Doctor on a Sunday. I rarely get calls from the actual Doctor period. Usually the nurses or PA on duty.
On Sunday I kept getting a call from a private caller. I ignored the calls as usual assuming it was a bill collections agency. After the 3rd time I decided to pick up. It was my new Doctor from Hendersonville, Dr.Rholl. He said the camera swallow found "something", they do not know what. His scope could not reach the area last Thursday. He asked if I could make a trip to Duke spontaneously to have a procedure only a handful of Doctors are qualified to perform due to the technicalities and danger if done incorrectly. I said YES..........pulled over the car and sobbed. I told him I could not believe he called me on a Sunday, I was stunned et. He was stoic and humble. He said he would work all day Monday to try to make happen what usually takes months to take place. He called today at noon and told me the Doctor at Duke was booked until the end of November BUT would see me if I could get to Duke by 8:15 Tuesday morning to perform the double balloon enteroscopy (big time GI search). Blown away again at Dr. Rholls tenacity and work on my behalf. My dear friend Susan called to remind me of our dinner date tonight. I told her what happened.
She responded....
" I am on my way, we are going to Duke." That is the kind of friends I have, that is the kind of love that has kept this heart beating. We just got arrived in Chapel Hill.
I go to sleep at 9am and the search begins. Come with me! I love you, Jackie


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10/25/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
The Belly Papparazi on the job! 


So the little blue light in the corner of the black bag is the camera flashing inside of me as it travels through my body. At 7am I swallowed a small space ship capsule and it is on the big journey. Hopefully it will act like tha pappazzi and catch the bleed sorce by surprise!
Picture of the bag in with my photos.
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10/24/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Warriors and Support Peeps...No luck with the procedure BUT how cool is this...Trisha (Austin's girlfriend who is divine) is in med school and they let her stay with me through the procedure! What a difference after all these years of tests and being put to sleep to look over and see a personal angel sitting in the room with me. In recovery we laughed alot at all the LOUD farting going on from all the other patients in recovery. I even taped some for Cera and Jon-Mike knowing how much joy farts bring to their lives.
Can't eat today and will swallow a camera tomorrow that will travel through my body all day.Have done this two times before and one time they saw blood. Maybe tomorrow they will find the lotto ticket I have been looking for.
To all of you...once again, thank-you, thank-you for all the love. I feel it and although penniless, rich as a Queen. Love, Jackie
 

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10/24/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Prayer warriors and support angels...being put to sleep this morning at 10am.
Spontaneous decision ordered by my Doctors last night after a 10 day run of bleeding. Maybe the amazing rainbow that caused me to gasp yesterday was a sign, maybe today is the day they will find this bleeding bugger. Come with in there and help show them the way!I love you and thank-you for your continued support!
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10/21/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
TO THE DOT

When Jon-Michael was 5 or so when I would ask him what he thought of fall days when the sky was perfect blue, the sun was perfectly warm and the air full of the scents of fall, he would say..."it is to the dot." I asked what that meant, he said it was like the period on the end of a sentence. How perfect is that?
Today is a to the dot day. Unfortunately I am back in the hospital at Park Ridge. Not sure what they are going to poke me with or what test will be run. I will let you know as I know.
Maybe this visit will be the health lotto winner...sending out request for prayers that this be true.
Thank-you again for you love and support, I need it and will repeat again, I am standing because of you.
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10/12/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Hello my dears,

Feel like Big Bird sitting on an egg...each day that I am not heavily bleeding is a good day. I try not to anticipate waking up in trouble....a mind game for sure. Had a blast at Susan and Brad's wedding last week. I was able to dance and dance we did. I want to dance more, I want this mess to end.
There have been some set backs. 
The short version is I was denied care again by my insurance, I engaged a bankruptcy lawyer and found out some horrifying facts about what will happen if I am forced down that path.
Back to you all...every penny that has come my way through your kindness has not gone unnoticed. If I could hug each of you I would. I need a miracle, a big donor to step in and give me the power to take charge of this situation. With the power of funding I could fly out of insurance denials and fly away from the walk of shame and paper work cluster that goes along with the walk down the path of bankruptcy.If you know of any big time donors that are looking for a cause,please share this site with them. I have turned over all the stones, I need to find the magical one that lifts me out of this mess. 
Love and more love to you...Jackie
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10/07/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
JUST WANTED TO SAY...AUSTIN GOT HIRED AND IS NOW AN ASHEVILLE FIREFIGHTER!
Proud heartbeating!
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10/05/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Insurance,government shut downs and what it all means...

Got my fourth DENIAL of benefits from Wellpath to try to find the bleeding source at Mayo in Jacksonville because my policy covers NC only. I called and asked if Wellpath was a carrier in Florida. The answer was yes.I asked what would happen if I moved to Jacksonville.?
I was told I would have to cancel my policy then it would be up to Wellpath to reinstate the policy. They could deny my application or jack it up so high it would be ridiculous to consider purchasing.. While all the application was being processed I would be uninsured completely.
Many people have said "but hey, there is Obama Care." I sure wish someone could explain the 18,000 page document and how it would affect a person who needs iron and intensive care to stay alive. I simply just don't understand it all.  Anyone out there know how it all works? Oh and then there is the Gov. shut down. What does it all mean?


Changes in the wind...after 23 years in these beautiful hills with amazing friends and memories I cherish, I am considering leaving in November to be closer to family in Jacksonville. Every time I think of it I weep. Then I feel like a two year old who is not getting her way. I hear myself saying "but I don't want this, I don't want that, it is so hot et." I am old enough and weathered enough to get that sometimes you have to do things you don't want to do. 
To keep me here I would need work with benefits, right now I am hourly with zero perks. I am peeking around corners hoping for a miracle and at the same time resigned to the idea that I have done all I can do. I am exhausted and the last flood in my room put a big dent in my resolve to continue fighting this thing without my family.Most of the time I feel so alone and at loss as to how to handle such a big mess.
Any input would be greatly appreciated.
On a lighter note...
Thanks to you: my mouth apparently has suffered from the depletion in my body and I was able to pay for 3 days worth of enamel repair...the bill would have been impossible for me to pay.
I paid for my last three bags of iron...heart beating strong because of you.
I had a deep and long search of my body under anesthesia and was able to show up with my out of pocket expense...A FIRST. 
It is hard for me to imagine where I would be without the help you have given me. I still have a way to go to pull out of this mess, kindly keep sharing, know that I see every name and kind word and most importantly know you are literally keeping me alive.
Love to you all
Jackie






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10/01/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Go to places...

Spent a day in the woods this week at my "go to secret" spot. It was a perfect day. I thought about all of you, I thought about how fortunate I am to be surrounded with friends who make me laugh and animals that show up each day at the clinic as if it was their Birthday every day. Tails wagging, tongues dangling, kisses and happy barks.
I thought about this strange bleed and how it has changed my entire way of being. Wept for a long, long time.The bleeding is a dual gift that has face planted me and built me up at the same time.
For the moment the bleeding is slow...I take advantage of that as much as I can. It can blow at any moment so each day that I am not in big trouble is a good day.
Still waiting for direction, still waiting for insurance approvals to get the help I need.
Still ever so grateful to all of you.
I will keep you posted.
Jackie

 



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09/26/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Back in my after the 2nd flood...and so glad to be able to find those little silly things that turn into big things when they are buried under furniture!
Still waiting for the most recent insurance appeal to be considered.
A new rash of bills are rolling in from my week in the hospital.
4 years ago whe the med bills started filling my P.O Box they terrified me...there is beauty in knowing what you can handle and what you can not. I let them go now, there is not much else I can do. Surrender. 
The sound of a friends voice over the phone, a smile, a touch...that is my heartbeat. The bills can wait.
The past month has kicked a bit of the fight out of me. I know it will pass, I will get back in the saddle. I can feel big changes in the midst, just don't know what they are yet.
Most importantly I feel the need to continuously say thank-you for your support and let you know I am lost without your kindness and love!
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09/19/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston

When the water rises, drink tea

 

Being 5'10” and growing up with 4 brothers , I like to think I come from the blood line Zena the Princess Warrior and can kick and shove my way out of most of life’s hurdles. This week Zena got her butt whipped and I was feeling total defeat. I wanted to float away. After a week in the hospital with no food, then doing prep for a double procedure on Monday left weak, bruised and

my resolve to fight was at an all time low. At night I woke up thinking about all the new bills that were going to show up, how I would pay, how I would be stalked by more bill collectors and lawyers.

Yesterday I pulled a card out of my P.O Box mixed in with all those nasty collection letters.

The words in the card infused warm mojo throughout this weary body. Out of the card came a gift to help. Parker...sharing her gift with me. Pulled over and sobbed on Haywood Rd.

I sat down to write her a thank-you later in the day. Tears streaming trying to somehow tell her as I wish I could tell each and every one of you how your support has kept me alive.

As I wrote I heard the sound of rushing water. I turned to see water shooting out of the bathroom doorway like a small river. I ran to the furnace room thinking the air conditioner blew again like it did just a few weeks ago forcing me out of my room for 3 weeks. This time it was the Jacuzzi. It was almost empty and my room was the collection sight. I tried in vain to turn it off. I ran upstairs to find Howard. In this big house full of wonderful people I could not find a soul. I ran back downstairs and went into the boys dungeon. I banged on Jeff's door, he arose from a full on nap. Dazed and frazzled he stumbled into the Jacuzzi room. He tried every button in sight. I got Howard on the phone and he walked him through shutting it off the Jacuzzi power source. My room is flooded again. I flipped the bed up against the wall, pulled all my stuff off the ground and waited.

Gratitude...

1.Normally I would not have been home at that time. Was still resting from all the medical invasion of the past week and did not go to work, had I not been there writing that thank-you note the entire Jacuzzi would have emptied into my room and continued to chug water to try to fill. I would have lost everything.

2.Howard sprung into action and within an hour 3 restoration trucks were in the drive doing what they do. Very nice guys who were totally on top of the situation. How odd, when we were first married Rick and I owned a water damage company. Howard tells me they had removed the jacuzzi filter earlier in the day to clean it and forgot to put it back. With tears streaming down my face I tell him this has been a rough week, maybe this house does not want me here. He hugged me and being as silly and as light hearted as he is, he tells me I am a water sign and I simply attract water. Then he starts singing the Age of Aquarius. I couldn't help but smile but told him the timing was way off. I told him I might laugh about this tomorrow but for right now this is no fun.

3.I grabbed my bag and went to Dobra tea house. I was served by Cera’s former roommate Jamie and he picked just the right tea for “flood people”. I enjoyed a yummy plate of hummus and ended up running into an old friend I had not seen in years. We had a great mini visit. He is all grown up with two sons, working a big man's job and is a happy family guy. I was oddly at peace.

4.My room is rigged with giant machines that are buzzing away to dry the water. There is a picture of some of the machinery included in the photos on this site. I got to sleep next door with the amazing Mr. Handsome the cat and will stay upstairs until the room is put back together.

 

The ramble is to once again show you all that you support no matter the size, your words, your encouragement and love is keeping my knees from buckling. Thank-you, I love you, this grateful heart.


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09/16/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
The Doctors in Hendersonville put me under for a long time today...they found nothing. All I can do is run to the ER as soon as I think the bleed has excellerated and hope they can catch it.
Feeling alot of things...probably just anesthsia playing mind games. I am tired, I don't want to beg or fight today.
A down day...I know this too shall pass.
I love you all
Thank-you for continueing to cheer me on and donate. I could not get care without out you.
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09/15/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Fingers, toes, tree branches, ropes et. all crossed and laced with prayers...going to be put under tomorrow morning for a big Jacues Cousteau style explore of my GI system. 
Sending a call for all the mojo I can get.
Love to you all
Jackie
Will keep you posted
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09/12/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Hello friends,
Going to be put under this coming up Monday. The Hendersonville Doctors will scope me out from top to bottom.
Other than the lovely prep, I remain hopeful. Maybe Monday will be the day this elusive bleeding bugger will be out and visible and end this madness.
Insurance still denying getting help from the top dogs at Mayo.
They are also makng Monday's proceedures difficult too.Are threatening not to apply to benefits et.
I fear for our children's future with insurance and health care in general. From my point of view, it  feels like health care no longer cares for people..bottom line is turning profits. 
I will still fight back and won't stop.
Any good mojo you want to send on Monday will go with me and I will be most grateful for your good wishes.
Love you all
Jackie
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09/10/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Glad to be home from the hospital.
Still no answers. They chased the bleed but it remains elusive. The hardest part of this walk is the mind game. I know I am loved ,protected, safe and yet I feel alone, afraid and filled with a sense of drowing in my own body at times. I am sure I just used the work and way too many times!
Thank-you all for the kind words and cheers of support  this last go round of pokes and prodding.

Made the 4th appeal to my insurance to try to get me to Mayo. Still sitting on the egg waiting to hear back.
Love, Jackie
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09/07/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
 

 

Good Friends, Roomies and a bit of Iron Please.....

Happy to be out of the hospital!
No answers, just more instructions on how to catch the bleed earlier. The Doctors at Park Ridge felt Wake missed a golden opportunity to find the active leak. Wake turned me away but I know from experience they won't let a day go by without stalking me for the gigantic bill they are going send my way. Dr. Boogie Dowser JR provided the lowest care I have received during this journey.

Side note...funniest moment in the hospital:

Cera needed bedding to sleep in her chair and went on a hunt in her dirty gardening clothes, she approached the nurses desk and asked a Doctor doing charts if he could get her some sheets! She came back in the room and said “um, does MD mean Doctor and is there a hierarchy in the hospital as to who to ask for things?” Only Cera...

 

The oh so boring details if you care to read them:

 

On Friday I woke up, dusted myself off and was ready to get back to business. Couldn't catch my breath, couldn't get up the steps, had jelly legs. All the old familiar symptoms when my iron tanks. Didn't make sense since regardless of the heavy bleeding my hemoglobin stayed stable in the hospital. I called every Doctor I have requesting a CBC knowing it would take hours to hear back from anyone. The first to respond was my hematologists so I jumped in the car and went to the office.They took my blood and ran a routine CBC. My hemoglobin came back stable. Then they put me in a chair and took my pulse lying down...heart beat 51, then they sat me up and it went to 79 then they stood me up and it went to 109. This indicates my heart is not getting enough blood and struggling to pump. They made me sit back and wrapped me up in blankets. They got my Doctor and we sat in a room while he searched through years of my lab work records.

He discovered discovered that 3 years ago one of my blood draws had a perfectly normal hemoglobin level and a dangerously low iron level (very rare) So he sent me down the hall to give more blood to run a iron study. Unfortunately the test has to be sent to Atlanta and will not be back until Monday. He has scheduled me for a 5 hour iron infusion next Wed. I am so thankful it was Dr. Jackson’s office that called first. The situation could have easily fallen through the cracks at any other office that did not have those records and I am oh so grateful for his care.

In the mean time I am having to lay low. Can't work until I know what is up. Come hang out if you can!

Your kindness and support remains my lifeline.

My roomies have been great. Offering help and concern. Howard insisted I get out of the room last night and took me out with friends for a delicious dinner. I am fortunate to have a nurse housemate who is in school studying for his PA and he told me I could wake him up at anytime of night if my heart starts to struggle. He will come take my vitals to make sure I am okay. He even gave me a demo of how to monitor my own pulse et.

 

So the journey continues...thank-you for riding along side with me!

Much love

Jackie

 


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09/05/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Day four and still no answers, or time line as to when I can get out of the hospital.Haven't had solid food since Sunday. The nurse just asked if there was anything I needed and I said yes " a bottle of ketchup to eat your arm wih." She laughed and said she was going to send me to floor 2....psychiatric, if I ate her arm because she really needs it.
Life in the hospital...you gotta make it fun or it will make you crazy!
Cera spent the night in the chair and is starting to go stir crazy too.
Thank-you for all the love...it matters, I read every message, you are keeping me held
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09/04/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston

Howdy from Park Ridge...
First big test last night could not detect the leak. I think the opportunity may have been lost being pushed and shoved around at Wake Forest. I do not know the plan for the day. Maybe I will get to go home.
One thing I know is that I feel your love and support!
Thank-you


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09/02/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
 

 

 

 

 

Tricky Business and Insurance nightmares....oh and the not so fun ER

 

The thing about GI bleeding is that there are a whole LOT of intestines that a leak can hide in. Mine has played cat and mouse for years.

I ignore it for the most part,get iron infused when I need it and try to go about my day enjoying things like fresh water, sunshine and the love of family and friends.

Two years ago my Doctor at Wake Forest told me the only chance at finding the leak is to catch it when it is active.

Well today the sneaky little leak ,showed up with a vengeance. Since I can't get my insurance to approve my care at Mayo, I got in the car and drove to Wake and did what I was told to do two years ago, admit myself to the ER and then my Doctor could chase the leak while it was erupting.

I am not going to bore you with details. It was a most unpleasant day in the ER with Doogie Howser and friends.

What I was told:

The GI office is closed for the holiday. I actually had to Google my Wake Forest GI Doctors face and show it to the ER Doctor because he said there was no Doctor by my Doctor's name in the system. I was literally holding the phone in front of him to show him my Doctor exist. I am actually laughing thinking of this hideous moment now that I am out of the ER.

I was told that without orders from him, they could do nothing. Then Dr. Doogie went on to say my insurance would not approve any testing without my GI Doctor's orders. He sadly admitted hospitals are businesses. None of this is new to me, all of this is sad to me. I told him I get it, please unhook me from all these machines and let me go. I booked a room next to the hospital and will be at the “unknown” GI Docs office at 9 am when they open. I am going to think positively and hope they will see this is a window of opportunity to catch this bugger. If they turn me away I will drive back up the hill, dust myself off and start all over again.

By the way...while stuck in Doogie Howser ER, I saw all of your faces, thought about all the love and support you have given me and it covered me like a warm blanket. Love, Love and thank-you for all the texts and well wishes that are buzzing like mad on my phone right now! Jackie


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08/27/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
 

Hello my friends....

 The YouCaring site recommends updating frequently to keep the news fresh. Sometimes I feel like I am boring you. I will keep this short!

Spent the week getting lots of dental work done in Jacksonville for a long time battle with tooth pain. So happy to be able to chew on my left side and not have the anxiety of how to handle getting the work done. Thank-you Dr.Salko and staff!
The dental time was mixed with family, fun times with old friends and a visit to Jon-Michael's job at Aura Salon. I was overcome yet again. All the stylist have my fund raising info on their stations throughout the room. I was greeted with kindness, warmth and support.

I will say it until I am blue...thank-you to all of you. I have a whole new pack of angels in my life and I am so grateful.

Back to work on the insurance appeal. Will keep you posted.

Iron is holding steady for the time being....always thankful for that!
Much love and gratitude
Jackie


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08/15/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
 

 

 

 

Hello friends,

 

A few hours after I wrote an update yesterday the NC Insurance Commissioner's advocate called me to tell me my request to be seen at Mayo has been denied for a third time. She went on to say it is a dismal outlook. I can appeal again. My current insurance will approve Duke in NC. I am not opposed to Duke. What I am opposed to is being treated with more nuclear medicine, radiation, being put to sleep over and over, missing work without pay and coming home with another big pile of thousands of dollars of bills and more than likely no answers . The Doctors at Mayo have a track record of success at finding elusive GI bleeds and look at the issue with different techniques. It makes no sense, it feels like such a waste of time and resources. The appeal is up against a system is powered by software and bureaucracy.

I will fight back. The battle starts today.

I feel the army of support behind me, thank-you again and I will keep you posted.

 


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08/14/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
 

 

 

 

 

We can only be said to be alive in those moments when our hearts are conscious of our treasures.”

T.Wilder

 

To my You Caring Treasures,

 

Franny and Jeff of Franny's Farm, opened up their event venue and big hearts to host a benefit concert for me featuring local and beloved musical artist Pierce Edens this past weekend. Cera and Callie Walston and a host of others worked tirelessly on my behalf. Fabulous gift items were donated by local artist and businesses to be auctioned. There were billboards, posters designed by the amazing Chelsey, local news and magazine interviews, surprise guest, (my nephew James ) and the magical gift of new friends.

The setting for the benefit was absolutely beautiful. The day was full of love, kindness and support. The visuals were plenty, a young farm boy chasing a rooster named Godfather, Dad's tossing dolled up daughters into the pond, heart felt tunes performed by Pierce and lots of warm smiles.

Check out a few of the Franny Farm photos.

 

The insurance appeal was sent, I got a letter informing me a decision will be made in 15 days. If they deny the appeal, I have decided to head straight to Washington. Thank-you Appalachian Voices friends for teaching me to lobby and have the courage to use my voice in big places! Franny from Franny's farm has offered to go with me, she has a story to be told as well.

 

Thank-you, Thank-you over and over again!

 


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08/03/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston

Small moments and large amounts of gratitude...

Instead of having to walk down the emotional hall of shame towards the billing dept. at the infusion Doc's office to request the $5.00 a month payment plan for the next 20 years for my last round of iron infusions.......I paid the bill! Could not have done this without you....
thank-you,thank-you my dear and kind supporters.


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07/29/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
 

 

 

 

Snakes, Insurance Battles and Good People

 

On the medical front: The NC Doctors have not sent the documentation needed to get my appeal sent off. We have been waiting for over 6 weeks. Today I told the NC Insurance advocate to send the appeal anyway. The waiting and procrastinating keeps me stuck and I am ready to move on and get better. Next up is storming the US Commissioner Office with my case.

 

Meanwhile...oh how I enjoy reading your messages. Iron brother and the young 21 year old fighting her own battle and still taking time to encourage me. You all lift me up each day and I will continue to thank-you over and over.

 

My room remains ravaged by the water damage and the walls have to come down et. More inconvenient then anything. Been house jumping and enjoying seeing more of my son.

 

Went tubing down the Davidson River yesterday with Cera. The water was high, clear, and running strong. Picture perfect. We had food and drinks all set up for a full day of fun. The first fallen tree we had to lay down to float under changed the course of the day and made us laugh all day long. Cera reached up to grab the tree for leverage and much to her surprise pulled down a snake that was sunning on top of the tree. The snake landed on her her chest. My tube was fast approaching because of the high water and the strong current. I saw her screaming, arms flapping and legs waggling in the air. She was screaming hysterically....”I had a *&^%$#%$# snake on me.” All I heard was snake and felt a thud in my tube when I passed under the tree. What I did not know was that it was my drink, not the snake. I flipped out of my tube losing all the sandwiches et. I searched the tube, no snake. I could hear Cera down river still screaming at the top of her lungs. When I came around the bend she was hanging on to a small branch screaming and laughing at the same time. I could see she was okay. That is when the laughter started. I could hardly get back in the tube. I have never seen her fall to pieces like this in all the years I have known her. Turns out it was a black snake but it did slither across her chest and she had to grab on to it and throw it into the river. We laughed the good laugh. Once settled we floated on to what ended up being a perfect day to be on the water twirling around in the rapids and just being happy to be alive. M&M's and cookies on the way home...


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07/24/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
 

More Red Tape, a splash of water and what really matters.....

 

Warm thoughts of love and gratitude to you all.
Wish I could tell you things were moving along.

My Doctors here in NC who need to send letters to my insurance advocate on my behalf have still not responded to certified letters with my request. This postpones the appeal and makes lunch hours on the phone long and a test of patience.

Other news, my room flooded due to a faulty air conditioner behind the wall. When I fled, the only thing I took with me were clothes to sleep in and the beautiful water color of my dog that my dear friend Becky Sanders painted for me a long time ago. As I drove away it occurred to me that other than being tired from hauling wet padding et. I was content to have just my clothes and the painting of the Kye the wonder dog who I am sure is one of my guardian angels.

Through this health adventure it has become clear to me that the love of my friends and family are what sustains me, simple as that.

The room will be fixed, the stuff is just stuff. You all are what makes home, home to me.

Thank-you again for being to me ,what really matters.

Love, Love and lots of hearts

Jackie


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07/22/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Jackie's Heartbeat Benefit Concert

I'm excited to make Jackie's Heartbeat Benefit Concert Official. 100% of ticket proceeds will go directly to getting Jackie Austin the care she needs at the Mayo Clinic in Jacksonville, FL. Pierce Edens will be headlining the event at Franny's Farm, just outside of Asheville, NC.  There will be games, local food, local beer donated by Highland Brewing Company and a silent auction with donations from local business' and artists alike. If any one is interested in volunteering for the event or donating to the silent auction please let us know.
 
Thank y'all so much for the on-going love and support!
To purchase tickets visit www.jackiesheart.brownpapertickets.com, and you can stay posted on Jackie's health & fundraisers at our new Facebook page Keep Jackie's Heart Beating.

The $25 ticket price includes admission to the concert, a beer bracelet for those 21+, and 5 raffle tickets for the silent auction. 100% of ticket proceeds go to helping Jackie Austin get the care and attention she needs at the Mayo Clinic in Jacksonville, FL, and will hopefully keep her wonderful heart beating for a long time.

Love,
Cera

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07/21/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Jackie's Heartbeat Benefit Concert

I'm excited to make Jackie's Heartbeat Benefit Concert Official. 100% of ticket proceeds will go directly to getting Jackie Austin the care she needs at the Mayo Clinic in Jacksonville, FL. Pierce Edens will be headlining the event at Franny's Farm, just outside of Asheville, NC.  There will be games, local food, local beer donated by Highland Brewing Company and a silent auction with donations from local business' and artists alike. If any one is interested in volunteering for the event or donating to the silent auction please let us know.
 
Thank y'all so much for the on-going love and support!
To purchase tickets visit www.jackiesheart.brownpapertickets.com, and you can stay posted on Jackie's health & fundraisers at our new Facebook page Keep Jackie's Heart Beating.

The $25 ticket price includes admission to the concert, a beer bracelet for those 21+, and 5 raffle tickets for the silent auction. 100% of ticket proceeds go to helping Jackie Austin get the care and attention she needs at the Mayo Clinic in Jacksonville, FL, and will hopefully keep her wonderful heart beating for a long time.

Love,
Cera

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07/21/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Jackie's Heartbeat Benefit Concert

I'm excited to make Jackie's Heartbeat Benefit Concert Official. 100% of ticket proceeds will go directly to getting Jackie Austin the care she needs at the Mayo Clinic in Jacksonville, FL. Pierce Edens will be headlining the event at Franny's Farm, just outside of Asheville, NC.  There will be games, local food, local beer donated by Highland Brewing Company and a silent auction with donations from local business' and artists alike. If any one is interested in volunteering for the event or donating to the silent auction please let us know.
 
Thank y'all so much for the on-going love and support!
To purchase tickets visit www.jackiesheart.brownpapertickets.com, and you can stay posted on Jackie's health & fundraisers at our new Facebook page Keep Jackie's Heart Beating.

The $25 ticket price includes admission to the concert, a beer bracelet for those 21+, and 5 raffle tickets for the silent auction. 100% of ticket proceeds go to helping Jackie Austin get the care and attention she needs at the Mayo Clinic in Jacksonville, FL, and will hopefully keep her wonderful heart beating for a long time.

Love,
Cera

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07/15/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston

Patience and the smell of buttered popcorn

 

Update:

I found out on Friday my insurance appeal has not been sent . The Doctors who were asked to send important documentation letters have not done so. The appeal stack is waiting for them. When the letters do arrive, it will be another 30 days for the insurance company to deny or approve my request. The waiting can be a bit of a mind game. It is frustrating to know the power of red tape and paper work is keeping me in health limbo.

I could get angry, does me no good, I could get upset, that robs my joy. I am lost in a system of madness but do not have to go mad while trying to get help.

I choose patience, got in the car, drove to Lake Santeetla and visited with one of my dearest friends from highschool, Laurie Milne Devaney. We kayaked, ate good food and,talked for hours and laughed about days gone by. Time spent with her and Dan gave me the same feeling you have when you get that first woof of hot buttered popcorn. Felt like home. The visit took the edge off the red tape medical madness and made me grateful yet again that this heart is still beating. Thank-you everyone, thank-you Dan and Laurie!


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07/08/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston

Diamonds and the placebo effect...

The thing about having an elusive health hurdle, is that when it first drops its luggage off unannounced inside your body, understanding what is happening can become all consuming. I have spent hours on the phone trying to get help, read more trashy magazines in Doctor's offices then I care to admit, have layed for days in hospitals, reclined in healers rooms and was obsessed with gathering information online. Good to be knowledgeable, not so good to get an overdose with too much information. A big loss of precious time. I told Callie Walston, when presented with sudden illness, understanding what is happening it is like trying to find a diamond in a haystack.

The bleeding remains elusive, yet I have found many diamonds on this health journey and they have nothing to do with stopping the blood loss. To name a few: how to say no, how to say yes, how to say I need help, how to take naps even when the sun is shining, how to let go of how I thought it should be and accept what is, how to allow my tears out of the closet, how to have a bad day and not feel bad about it, how to push when I want to lean back. Illness has a sneaky, slimy way of slowly trying to abduct your joy if you don't keep a careful watch and protect the knowledge of all the goodness in your life.

By far the most lovely diamond I have found has been all of you. Each donation, letter, card, call and note of encouragement might just heal up this elusive leak like the placebo effect. Wouldn't that be grand!

I will continue to thank-you over and over again. Know that I notice every name, word and thought. I wish I could hug and thank- you all personally. This grateful heart is beating strong...thank-you, thank-you.

 


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07/03/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston

The Boring Details:

Some of you have asked what the hurdle is with my insurance company.

Basically they denied approving Mayo as a In-Network provider which means the deductible would be hideous and the insurance could then deny all the procedure claims because the benefit codes do not match.

The Doctors I am trying to see have a proven track record of finding elusive bleeds. I naively asked my insurance advocate why would they deny me a chance to end this nightmare and in turn end all the claims that mount up each year? She told me I would be amazed by how crazy the system is. It does not makes sense, but sense does not seem to be a part of this process.

So for now, the paper work battle continues, the emails, the records, the phone calls.

I am counting on a miracle and you all have given me the hope it will happen and I thank-you again for the support!


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06/28/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
 

Fireflies and the Supermoon

 

 

One of my housemates blurbs out after dinner, “hey, anyone want to go sit in the field at Warren Wilson and watch the fireflies and the Supermoon rise?”

Yes, or course! We jumped in the car, climbed over a fence armed with warm beer and chocolate. We plunked down in shoulder high grass. The fireflies were rising up from the ground all around us and twinkling up and down in the trees. A low fog covered the valley. The moon slowly came up from behind the mountains. Overwhelmed by the magic that was in front of me, overwhelmed by the support you are giving me. Just wanted to say thank-you again.

Health Update: Making slow but steady progress with the red tape process of battling with the health care system and feel more confident with each day the doors will open soon.


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06/24/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
 

 

Medical update: I am still in a full on battle with my insurance to get the help I need. My NC insurance advocate named Jacqui of all things, is working hard on my behalf. Paperwork, letters, documentation, lab results, blah, blah, blah to be sent here there and everywhere. I will be sure to let you know when there is a break in the case.

For now......

A tribute to my parents:

They both came from hard working BIG Irish families and are the essence of the greatest generation.

Remember when you were a kid and your parents would try to teach you a life lesson and you would simultaneously glaze over thinking they just didn't get it?

I can recall countless lessons they gave that just did not sink in until I lived a little. I write with a grateful heart for their words and actions. Here are a few that go hand in hand with this website:

Mom

Y2K: Back in 1999 I was handed packets from folks instructing me on how to stock pile beans, rice and dry goods so they would not rot after the clock struck 12 and the world imploded on Y2K. I called my Mom.

Mom this stuff is freaking me out.”

Mom said “ Jackie we live in the most generous country in the world, if all hell breaks loose, we will show up for each other, always have always will. “

I threw the papers away. Since then I have repeatedly witnessed common citizens turned heroes in calamities one after the other through generous acts of kindness and good deeds. Mom was right. Today I am writing a message on a website where I am the recipient of this kind of generosity. Mom I am grateful to you for instilling in us the belief that people trump things...always.

 

Dad: the gift of laughter. If you knew him, you know what I am talking about. When he had his first heart attack (it was mild) my brothers wrapped his big toe with a white tag with his name on it while he was still laying in his hospital bed. Something he would have done if he wasn't the one in the bed. He laughed. We all laughed. We laughed when most people cried. I am getting notes from grown up children on this site who hung out at my house when they were kids. They are talking about being grateful for the laughter in our home, the fun, the good times and are now thanking me.

I thank-you for that..it is my parents who truly deserve the praise. My house was a house where a kid could be a kid. There was always a stray dog or lost soul sleeping somewhere in the house and my friends were greeted as if they were my parents own children. We certainly were not the Waltons but somewhere in that mob of freckles and blue eyes lessons were learned.

 

Thank-you Dad where ever you are (I miss you like mad) , thank-you Mom for being so steadfast in your beliefs, never wavering, thank-you supporters for allowing me to witness first hand the power of the human kindness my parents already knew would come my way if I ever needed it.

 

 

 

 


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06/18/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
 

Heart flutters of a Proud MoM

I have no medical updates to give you as of yet as I am still in a battle with my insurance company to get the help I need. In the mean time I am being treated here in Asheville. I go about my days as usual and take naps when I can.

It was an exciting week outside of the boring topic of my health woes.

My youngest son Jon-Michael was voted one of the top 30 most influential people under 30 in Jacksonville, Florida and on Sat. my oldest son was honored with a big award during graduation from the Fire Fighters' Academy here in Asheville. I will tell you what it was in a minute. I want to first tell you how good it was to feel my heart beat.

I was sitting at the graduation reading the program. I noticed an award for the most Outstanding Fire Academy Cadet. I stepped out of my seat and went to the back of the room to start taping with my cell phone. The Captain talked about what the attributes were required for receiving the award. I suddenly knew the award would go to Austin and my heart was pounding out of control. I then heard the Captain say “and the award goes to...Austin Hall.” We exploded with pride

Both of the boys have worked hard to get climb up and it is a thrill to witness the rewards.

These are the moments I live for, these are the moments you all are allowing me to continue to have by helping me find away to get better . A proud and grateful Mom thanks you over and over again.


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06/15/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
 

Bibs and Organs:

 

I waited on tables for years. At one place in particular they catered to senior citizen bus tours that would come in before the dinner rush. Like dominoes the senior ladies would simultaneously whip out adults bibs to cover their bedazzled blouses. Some bibs were metallic gold and silver. As we served the group I noticed the conversations tended to be about who was having what organ removed or what meds they were on. I made a note to myself: # 1. Never wear a bib when I hit the bedazzle shirt age #2. When sitting with friends in front of a lovely meal, don't talk about organs, upcoming surgeries or meds!

All to say, life is a lovely meal and I will update you on the progress of trying to get the help I need soon. For now I simply want to enjoy the reprieve from a recent go round with iron and bask in the amazing outpouring of love I am surrounded with. Thank-you.


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06/12/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston

Cards, Words and Support…

The picture with the cards is just a small visual of the outpouring that continues to come my way.

I see more than ever I am not alone on this journey, I never was. Breathtaking.

Thank-you, more than you could ever know.

Callie Walston…you made my day


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06/11/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
Strangers, community and kindness...
Went to Bikram and was looking forward to stretching in the heat. I can't push the way I use to but still love being in the hot room listening to the mental challenge of the teacher's dialogue.  I walked in the door and saw a small box on the counter...'Keep Jackies heart beating". You can see a picture of the box on this page. I was greeted by Adi who tells me a fellow unknown student wants to donate portions of his family's earnings from a skin product to me. He walked away not wanting any attention. I tearfully approached him and was gently told they just wanted to help. I was embraced by his wife and encouraged to press on. I sat down and wailed. This is one of many encounters I am having.I can't say thank-you enough to ALL of you who are reaching out. Deeply grateful.
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06/07/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston

Noman Bate's mother and long sleepless nights:

 

To my supporters:

Back tracking just a bit.....

When this blood loss adventure decided to pay me a visit all those years ago, it perplexed the Doctors and created deep anxiety mixed with intense fear in me. I suffered intense insomnia. We all know the bizarre thoughts that go along with being up in the middle of the night. It can be just plain creepy.There were nights when I would lay awake and could hear my heart struggling to pump. I was flat out petrified. I started leaving little notes around the house just in case my heart stopped so the kids would know where to find papers et. Then late one night when I was up sleepless in creepy land, I had this creepy thought that I might kick the bucket and no one would find me for days. I would just lay there like Norman Bates' mother until I scared the hell out of someone who came to find me!

All to say...I know now, more than ever before, I am not alone. I never have been. I will not end up like Norman Bates' mother, I have been shown tremendous love and support beyond my wildest imagination. I am humbled and have to space my tears to keep enough energy to get through the day. Thank-you, Thank-you and Thank-you again.

Side note:

I do not want to forget to mention the friends and family who for years have kept their cell phones on through the night during this time for me. There was one who drove across town and crawled deep under my car on the gravel thinking I might have a hide a key for the house under the car when I did not answer the phone and she was scared something had happened. We have laughed a bunch over that little adventure.


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06/05/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
 
"At times our own light goes out and is rekindled by a spark from another person.Each of us has cause to think with deep gratitude of those who have lighted the flame within us." Albert Schweitzer....Thank-you to all of you for your continued spark and support! I am most grateful.....Love,Love,Love to you all
 

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06/03/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
 

So the thing about getting the infusions:

I receive them at the Cancer Center here in Asheville. I sit within close proximity to patient warriors raging full on battles with all different levels of cancer. On my dark days they impress and inspire me with their courage. Their bags of chemo make my bag of iron look like liquid lollipops being dripped into my arm. As I sit for hours with them, I can hear their reports of blood counts and progress. I see celebrations when the numbers are up and I see the faces of despair when numbers go down. There is a particular Doctor who cruises through to visit his patients. He greets them like old friends. They laugh and smile when he speaks. As fate would have it I ended up sitting next to him at a dinner. I asked “how do you handle having to give people such bad news, how do you offer hope when you know they might pass?”

He said “ I offer my patients hope because there is hope in every moment.”

I quietly blubbered.

Thank-you for your continued support, thank-you for giving me hope in every moment my friends!

Love,Jackie


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06/02/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
I continue to be totally overcome by your kindness and support. Thank-you, Thank-you,Thank-you.
I got my official "denied" letter from Wellpath insurance stating they will not cover the Mayo as one of my providers. Went round and round and round again on the phone all week. Sounds like a road block...not so. Been down this path before many years ago with my son Jon-Michael and we fought until we got the care he needed. I have been assigned an insurance advocate by the insurance commissioner in Raleigh. Her name JACKIE (she spells it Jacqui) and as fate would have it she lives is based out of Asheville. She spoke with a lovely Britsih accent and told me we will work hand in hand to get me the help I need.It will involve alot of paper work, documentaion and a willingness to be the fly that just won't go away. 
I am patient to wait and feel strong in my resolve...especially with all the kind words and support that surrounds me at this time. You are like an invisible blanket...thank-you for warming my heart and covering me up with your love and kindness.Jackie
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05/30/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston
I am overwhelmed with gratitude and feel a great sense of hope for the first time in a long, long time.
Please know I have read every kind word you all have written and feel the love and support you are sending my way.
I am a blubbering mess but a happy one.
With love and gratitude to you all,
Jackie
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05/29/2013
by Cera McGinn, Austin Hall, Jon-Michael Hall and much love and support from Callie Walston

 

So I pressed send today and launched the YouCaring.com site. I felt nauseous and overwhelmed as I felt the button go down. Within MINUTES, I was getting texts and messages of love and financial support, many from people I do not know.I kept having to run to the bathroom ...to weep with an overwhelming sense of gratitude and awe. The out pouring exhausted me on top of being exhausted but in a delicous way. I came home, turned off my phone and headed for the bluff across the street to ponder and pray a prayer of thanks. I was joined by a bright eyed young man named named Travis who came to harvest nettles growing on the bluff. He shared all kinds of cool ways to eat them and how to get the stingers off. I told him about the bluff and how a local shows up at times with his goats to let them feed on the hill. Within minutes the truck load of goats showed up. It was a perfect 80 degrees, breezes blowing, sun setting and magic all around. A wonderful way to end an overwhelming day filled with gratitude. I will end by this incredibly moving day by saying THANK-YOU to all of you who have bathed me in such love.I posted a photo of Travis and the goats.Love, love and more love, JackieSee More

— in Asheville


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