Putting up with the pain.
Chronic pancreatitis: Daily pain, costly cure
By Jon Bruce
jbruce@abcnews4.com
CHARLESTON, S.C. (WCIV) –- Doctors describe the disease as someone jamming a knife into your stomach and twisting – pain which can last for days or weeks at a time.
The last seven years of Rita Graziano's life have been a struggle.
"It's like you are getting electrocuted," she said. "It's usually pain on a daily basis. It's a raw kind of burring pain."
Graziano was diagnosed with chronic pancreatitis in 2004.
The Medical University of South Carolina (MUSC) is one of only three hospitals in the country offering a radical procedure to ease the pain of chronic pancreatitis. But, that cure comes with a significant cost, one Granziano, who has been on disability because of the pain, simply cant afford.
She said her experience has been a nightmare, one that only got worse when doctors she went to for help in her native New York, wouldn't listen.
"With pancreatitis people often get stigmatized," she said. "Especially if you are young, often times it's like you are seeking pain medication."
After months of searching for a doctor who would help her, Graziano finally landed at MUSC - in the care of Dr. David Adams, a leader in gastrointestinal surgery for over 20 years.
"The procedures I do involve bypassing the pancreas or taking out the damaged tissue," Dr. Adams said.
After several examinations and treatments, Dr. Adams recommended a relatively new but proven procedure called islet isolation.
"We take the cells that make insulin and isolate them in a laboratory situation and then inject them back into the patient's own liver," Dr. Adams said.
Those cells then live inside the liver and produce insulin with out the need for a pancreas.
Sara Gibbins recently had the procedure and says the surgery stopped the pain and is allowing her to live a normal life.
"I feel so much better than I ever thought I would feel," Gibbins said during a taped interview with MUSC. "Coming out of the surgery was like wow."
The procedure has caused some patients, like Gibbins to develop manageable diabetes. But, Graziano says it's time to take back control of her life and worth the risk.
"Only about 25 percent of people with chronic pancreatitis will live another five years from when they are diagnosed," she said. "I just don't know how much longer I have as far as my quantity but my quality is not great and I just thought about it and did some research and came to Dr. Adams and something had to be done."
But with a price tag of $21,000 for the procedure, Graziano is praying on for the kindness of others. She is praying for a miracle.
"I am really hoping this can change my life and maybe help save my life as well," she said.
This is the same disease that Casey had.
Casey's TP/AIT (just the 1st surgery), was over a quarter of million dollars! Methinks the above $21,000 grand is missing at least one zero.
We would have lost Casey by now, given the fact that her pancreatic enzymes were digesting ALL of her insides...
Did anyone else happen to catch this on the news? It was on ABC...
XOXO
Me
From:
WCIV-TV | ABC News 4 - Chronic pancreatitis: Daily pain, costly cure
I missed it, but thanks for printing it. Barbara is still going through her attacks, about every other month.
ReplyDeleteperhaps the $21000 was her co pay?
ReplyDeletewhat makes a proceedure so expensive ? no i see it on the news . huggggs
ReplyDeleteI missed it too Sweet Pamela;
ReplyDeleteBut as I read it, I read so much of what Casey went through- It all still seems like yesterday; and I still find myself waiting for a call that tells me she must go to the hospital, and pronto. Guess I will ever get over that part of it all.
She is doing well. IMHO, there will be one or two more surgeries- then all will be back to normal for her. I don't think they still got all of that ulcer- ad if they don't get it soon she won't have a stomach left to even operate on for cryin' out loud. I also think she has one of those same kind of ulcers in her bowel. But she forestalls even looking into it all. (I don't blame her).
Does Miss Barbara have "Chronic" Pancreatitis? Has she joined that group yet? I will repost the address shortly. Shall have to go in search of it for her.
There is just so much info from around the world that it will make her head spin. It will also keep her from knowing what part to worry over, and what not to. There are just so many people out there with the same thing!
Hold on...
Pancreatitis Association International
http://health.groups.yahoo.com/group/pancreatitis/
When they ask why you want to join, just tell them XOXO, Anne from "Anna_Loves_Life"- OR Casey's mom sent you.
hehehe
XOXO,
Me
Sweet Pea;
ReplyDeleteYou are so smart! Seems like my brain, once much quicker, doesn't even think half the time anymore.
And maybe, just maybe, when I get that pain pump my brain function might come back a little even.
Ya think?
XOXO
Mama D.
Dr Freak!
ReplyDeleteThe procedure is expensive because it is so lengthy and involved. Once the pancreas is removed, it goes down to the department where they have to separate the digestive cells from the Islet Cells. (The islet cells then get put within the liver where, it is hoped that they take up residence and thrive. For most patients with an adequate islet count, this is exactly what happens too. For others, they come out of the surgery a bit diabetic.
At any rate, the TP/AIT removes their pain.
CaseyAnne's surgery was just shy of 13 hours.
If you go to my front page, you can follow her through her journey with Chronic Pancreatitis-
It is along the right side.
XOXO
Me
maybe... pain does make one brain no worky
ReplyDeleteXOXOOXOX
If this is what our Casey went through, it's no wonder she's so strong now. Something like this would either make you stronger or kill you.
ReplyDeleteI pray the pain pump helps Sis. It would be so nice to get "you" back a bit. Not that I don't love the person you are now, oh, frack, I'm not making much sense am I?
I love you and send you many, many hugs.
oxox,
foreveryoursnotballsister
Free Bowe Bergdahl
Comment from RitaJoan
ReplyDeleteThere is a fundraiser being held in my hometown in NY on Long Island. Please pass along this information.
NAPPER TANDY'S
229 Laurel Avenue
Northport, NY 11768
Sweet Snotball Sister of Mine;
ReplyDeleteMethod in my madness as I want me back also.
More than that, I want Casey back!
And yes, she went through all this, and more. She also has a tendency to have blebs on her lungs- (Has had 3 pneumothoraces since she was in 8th grade). <-- The one she had in 8th grade was only at 5% so it healed itself. The other 2 included surgeries; the first one was treated by pleurodesis, the second by a partial pleurodectomy.
Also, the 'extra' (additional) surgeries that got thrown in there as a side effect of living with her Chronic Pancreatitis for so very long.
I absolutely HATE that the only way to help CP sufferers are these awful surgeries, or to treat only their pain.
(There really is nothing further... yet).
OR (perhaps worst of all) is when the pancreas quits working and your blood and urine tests show NO more high numbers. These people are then erroneously denied any pain meds!
***** I especially HATE that there are SO VERY MANY UN-informed doctors who call themselves "GI specialists"
I *could* go on and on and on, with everything that CaseyFace has been through in her short years here.
(But I won't). hehehe
Love to you
XOXO
Me
Bleb Disease- http://www.associatedcontent.com/article/1900310/bleb_disease_what_is_it.html
Sweet Anne,
ReplyDeleteSome "dr's" don't deserve the title.
My Dad had a pneumothorax that required repair. He had 3 pinholes. Luckily, he didn't have anymore.
I pray you have a wonderfilled Sunday, Sweet Sister.
oxox,
foreveryoursnotballsister
Free Bowe Bergdahl
Sweet Snotball;
ReplyDeleteThose "pinholes" ARE the blebs; and the dr.'s probably did the pleurodesis on them.
Pleurodesis is "supposed to last" FOREVER. Sounds like his surgery worked for him. Casey's didn't...
(Of course when did we ever know Casey to be following the rules?! hehehe
XOXO
Me
PS You are quite right about 'some' of the doctors not deserving... There were more than a few of them that Casey and I could 'outsmart' in a NY minute-
And I don't mean that in a sassy way. I mean it quite literally.
> Too many nurses also fall into that category
Sweet Anne,
ReplyDeleteI had forgotten what the repair was called, Thank You. He had a time with it before the pleurodesis was done, I can tell you!! Bless his heart, Mom went to see him one morning and he said, "Jan, look at this." and pulled the sheet up. His chest-tube had malfunctioned somehow and his genitals were full of air!! Poor Dad, If it could go wrong, it did. He finally succumbed to Chronic Lymphocytic Leukemia. His last days were spent on a respirator in a drug induced coma. His white count was so high that when Mom got him to the hospital, his Oxygen was only 47. No wonder the poor dear was hallucinating.
I've known nurses that fall into that same ineducable, (thanks Pam for the necessity of googling a proper word), category. It's a crying shame when you are forced to have one for your "care".
I love you Sis.
oxox,
foreveryoursnotballsister
Free Bowe Bergdahl