[My] Life in Wisconsin

Showing posts with label chronicpancreatitis. Show all posts
Showing posts with label chronicpancreatitis. Show all posts

One Woman's story of pancreatitis (From ABC News)

http://www.abcnews4.com/story/14711942/putting-up-with-the-pain-one-womans-story-of-pancreatitis
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

PA. man dies during storm when 911 calls unheeded


http://news.yahoo.com/s/ap/20100228/ap_on_re_us/us_snow911_death

How sad, how scary, is this?



Not only because of our close connection with pancreatitis- perhaps because of it, I found this story to rip out my heart...

COMPLETELY UNACCEPTABLE!

_________________________________________


PITTSBURGH – With her boyfriend in severe abdominal pain, Sharon Edge called 911 for an ambulance in the early morning hours of Feb. 6. Heavy snow was falling — so heavy it would all but bring the city to a standstill — and Curtis Mitchell needed to go to a hospital.

"Help is on the way," the operator said.

It never arrived.

Nearly 30 hours later — and 10 calls from the couple to 911, four 911 calls to them and at least a dozen calls between 911 and paramedics — Curtis Mitchell died at his home. His electricity knocked out, his heat long off, the 50-year-old former steelworker waited, huddled beneath blankets on his sofa.

"I'm very angry, because I feel they didn't do their job like they supposed to," said Edge, 51. "My man would still be living if they'da did they job like they was supposed to ... They took somebody that I love away."

Mitchell, on disability for depression, had a history of pancreatitis, an inflammation of the pancreas, Edge said, and had spent nine days in a hospital in late January. He had been home about a week when he was overcome with pain. Autopsy results are pending, awaiting toxicology test results, authorities said.

Now Pittsburgh officials have ordered an investigation and reforms of the city's emergency services system as Mitchell's case highlighted key shortcomings:

• Details of Mitchell's calls weren't passed on from one 911 operator to another as shifts changed, so each call was treated as a new incident.

• Twice, ambulances were as close as a quarter-mile from Mitchell's home but drivers said deep snow prevented the vehicles from crossing a small bridge over railroad tracks to reach him. Mitchell was told each time he'd have to walk through the snow to the ambulances; in neither case did paramedics walk to get him.

• Once, an ambulance made it across the bridge and was at the opposite end of the block on the narrow street where the couple lived — a little more than a football field's length. Again, paramedics didn't try to walk.

"We failed this person," said Michael Huss, the city's public safety director.

To be sure, Mitchell's ordeal unfolded as the storm dumped nearly two feet of snow on Pittsburgh; the 911 system was swamped with more than twice as many calls as usual and overall emergency response was hampered.

Regardless of how deep the snow was, Huss said it was unacceptable that paramedics didn't walk to help Mitchell. If they had, Huss believes Mitchell may have survived.

"... You get out of that damn truck and you walk to the residence," Huss said. "That's what needed to happen. We could have carried him out."

The six paramedics on the three ambulances could be disciplined, Huss said. He declined to say what that might be.

Paramedics or firefighters will now be required to go to a caller's door.

"Everyone needs to get a response," Huss said Thursday.

That Mitchell died waiting to get to the hospital is a cruel coincidence.

Edge and Mitchell met eight years ago in an emergency room. Both were getting their medications under control for their mental illnesses, she said. He was being treated for depression; she has bipolar disorder.

"We've been stuck together ever since, like glue," Edge said.

Several years ago, they moved into a small red brick rowhouse in Hazelwood, the riverside neighborhood that was home to Pittsburgh's last working steel mill, which shut down a dozen years ago.

Sitting on the tan and blue fabric sofa where Mitchell died, Edge described him.

He enjoyed watching TV, particularly westerns. They hoped to get married by a justice of the peace in April, then celebrate with a little party.

"He did for his friends," she said. "He looked out for other people when they needed stuff. He was there to help."

They didn't have a car. During the storm, a neighbor offered to drive them to a hospital but he couldn't get his car shoveled out.

Edge is a little sketchy on details of Mitchell's worsening condition and death. Then again, she didn't think she'd need to relive them. She thought they first called 911 on the night of Feb. 5, but records indicate the first call was made about 2 a.m. on Feb 6. Sometime Friday night, the storm knocked out their power and the couple sought warmth under blankets as the house got colder.

Edge said Mitchell had begun to feel stomach pains during the week, but he tried to deal with it. By Friday morning, he woke up in pain. Still, he tried to manage with medication, she said.

A review of the 911 calls by the Associated Press shows no anger in Mitchell's or Edge's voices. There was no screaming. Conversations with operators were cordial and the couple seemed to understand the difficulties the snow posed.

Still, Mitchell and Edge let them know he was in pain.

"My stomach man, it's real messed up. It's killing me," he tells a 911 operator about 11:15 a.m. on Feb. 6.

About 8 p.m. that night — in the eighth call to 911 — Edge tells an operator: "My boyfriend called for an ambulance. He's in a lot of pain and we've been waiting for a couple hours now."

At one point, Mitchell can be heard exclaiming "Oh man, what?" when Edge relayed to him that they would have to walk to the ambulance because of the snow. It was not clear when that conversation took place.

In all, three ambulances were dispatched at separate times. In each case, Mitchell was told he'd have to walk to them — and he canceled the calls.

As the hours went by, Mitchell's pain intensified and he began to have shortness of breath. Because he complained of abdominal pain, which is generally not considered life-threatening, he was initially ranked as a medium priority. About 11:20 a.m. Saturday, his priority level was upgraded, but not as an emergency.

Mitchell tried to sleep. He took his prescriptions — oxycodone for pain and sleeping pills for his insomnia. Edge gave him the medication and closely followed the dosage, she said.

"All that time, he was dying and I didn't even know it," Edge said.

Shortly before 8 a.m. on Feb. 7, Edge made her last 911 call.

"I think my husband's dead. Oh God, oh God," she sobbed.

The 911 operator told Edge to calm down and asked for the address and phone number.

"I've been trying to get an ambulance here for three days. He's been having stomach pains," Edge said.

The operator talked Edge through a check to see if Mitchell was breathing. Try to get him onto the floor on his back, the operator said.

But Mitchell's body was cold. Edge couldn't wake him.

"Oh God, he can't leave me ... Curtis? Curtis?" Edge said, struggling to move him.

The operator assured Edge that paramedics were on the way.

"He's dead," Edge said.

"No, no, no. You're going to stay with me," the operator said, continuing the checks on Mitchell.

Finally, someone came to the door.

"Who is it?" asked Edge. "Is it the medics?"

"Yes."

"All right," said the operator. "You did a good job. I'm going to hang up now. Let them in. Good bye."

The snow had long since stopped falling. It took firefighters two minutes from being dispatched to reach the couple's home.

They checked for a pulse, but it was too late.

"They said he was gone," Edge said.

It would be five more hours before workers from the medical examiner's office came for Mitchell's body.

A police officer waited with her. Edge sat on the sofa with the body.

"I kissed and hugged him," she said of Mitchell. "But it was all I could do."

_________________________________________

I shared this story with Casey as soon as I'd read it on our group.
We were both in tears as we related to each of these people.
My own thoughts are that possibly this man had been ill longer than what anyone has thought- and perhaps like Casey, his other organs had begun to shut down.
Add the new pancreatitis attack and he had a perfect recipe for disaster.
His heart? His lungs? His liver? (All surmised of course).

I hope to God he wasn't one of the people whose amylase and lipase levels remain consistent... He was just IN the hospital!
Given his age, and disease it is an awful thought to even consider. Like I have reiterated many times, your amylase and lipase levels do not always show a true or late stage pancreatitis attack.

I feel for this lady- who had to watch her man die.
For those of us who are the watchers, we have all felt that we are watching too- rendered helpless, seeing the pain our own loved ones are in.

May God bless and keep us all.

XOXO
Me


To All Addicts (Part 2).


"I'm right there in the room, and no one even acknowledges me"

Kind of long, but very important...

Good Morning.
How much further away from what I actually wrote do/can these people go?

Rude. Ignorant.
I was called those names...
Not to mention that yesterdays post (CLICK) even brought out one recovering alcoholic and drug abuser,
on the pancreas site, who took offense. (Was I horning in on his territory with my own assessment of the drug situation at hand)?
He claimed there is a difference between addict and dependent (upon).

There is.
But his definition was all bass~ackwards. (What the heck do they teach these people in AA/NA groups)?
Or do they even teach them (that)?  Not sure...


I do not mean to be flippant. That was neither my point, nor my opinion.
My point was only to (try to) make others aware that denying their children some pain relief from their intractable pain is a terrible thing to do. (And darn close to abuse in my book).

I chose my wording carefully.
The word "addict", referring even to Casey, was/is more than appropriate.

Would your own opinions of my post have changed if you would have known the difference? 
What if your own child had chronic pain?
Or would you be a parent who denies pain relief to your child on the basis of "what if", or "what will the neighbors think?" ?

Dependence:
Function: noun
1 : the quality or state of being dependent upon or unduly subject to the influence of another
2 a : drug addiction    b : HABITUATION 2b
Merriam-Webster's Medical Dictionary, © 2002 Merriam-Webster, Inc.

ADDICTION:
compulsive physiological need for and use of a habit-forming substance characterized by tolerance and by well-defined  physiological symptoms upon withdrawal;
broadly : persistent compulsive use of a substance known by the user to be physically, psychologically, or socially harmful

HABITUATION:

1 : the act or process of making habitual or accustomed
2 a : tolerance to the effects of a drug acquired through continued use,  b : psychological dependence on a drug after a period of use—compare ADDICTION
3 : a form of nonassociative learning characterized by a decrease in responsiveness upon repeated exposure to a stimulus —compare SENSITIZATION 3

____

As you can see, the research within the medical guidelines can/will extend past the words above.

Also of vital importance is this: From http://thesaurus.reference.com
Notes:
"ADDICTION IS MAINLY PHYSICAL WHILE DEPENDENCY IS MOSTLY PSYCHOLOGICAL"

The man in question has since put his tail between his legs (in my opinion) and has stated that he needs to leave the group.
Maybe he does.
(though I would never write that either).Perhaps his needs would better be served on an AODA site, which I am sure are plentiful.
I did say those comments did belong on an AODA site though.


Among other, (nicer) things, I wrote the following:
"sadly, your reply only perpetuates all the fears of the people I was addressing. (It also tells me that you have missed the point of my entire posting).
I was most certainly NOT writing about ANYthing illegal or immoral. Those were 'your' choices 25+ years ago.
The parents, children (and adults) I was writing to/of did NOT have a choice to be part/parcel of a painful disease that needs to be treated."

Note that # 2 definition spells out "DRUG ADDICTION".
That's a fact, Sir.
You can choose to 'pretty it up' or try to make some off~the~wall comparison, but respect the fact that it won't fly with me.

So he opts to leave.  ...Um... er... bu-bye...

Then came woman offended, spouting 'rude' and 'ignorant'  (among various other names)- What I would call my "mother image of all things good" -who thought perhaps I did not laud the other guy enough for being clean/sober.
My own beliefs are that it is not up to me (or anyone) to pat him on the back. It is up to himself to remain clean/sober. (I did not write that either).
Through Roberta's own treatment, she has told me numerous times that I should not censor myself just because she is/always will be recovering. That #1., there is nothing anyone can say/do that will turn her away from clean and sober. That #2., it would be her choice to do so, no matter the circumstances. (That's what she was taught in recovery anyway)...

Anyway, 'XXX' also threw in the idea of Casey, and "pitty parties" (her misspelling, not mine).
She further stated "You do NOT know what it is like to suffer day in and day out".  (I had to giggle at that one). hehehe

She went on and on- Her prerogative. 
(I will only copy you on my own reply as I don't think I can copy hers. If you have any questions let me know).
But she did say she was sorry if her words hurt my feelings.

My reply, thus...

Dear XXX;
Do not worry, xxx, of course you didn't hurt my feelings.
I too am an "everyday" person with everyday values and struggles.
(We are ALL that, and much more).

You stated, "You do NOT know what it is like to suffer day in and day out" end quote...
XXX, I am disabled, and assure you that I can well understand what chronic pain is. But again, this/my story simply does NOT belong on a "pancreatitis" website, (wouldn't you agree)?

Furthermore, I never even broached the possibilities of where that man's disease came from! Quite honestly, that never even crossed my mind until I'd read your note.

Do not attempt to read between my lines. I am quite open and direct.

I believe I tried to make people understand that there are not always "negative" associations with the word 'addict'.
I can plainly see you did not interpret our story that way.

My heart goes out to those children (and adults) who will not receive their pain meds because 'someone else' thought they didn't need them, even as prescribed by their doctors!

As I spoke of my own daughter, now 22, (quoted from my original post), "Is she an addict? Yes she is. And in the most humbled definition of the word too." end quote

My words are neither misinformed, nor ignorant.

Nor was I opting for a "pitty party" approach to anything?
I know that my Casey would not have lasted through all of her own stuff had she been of a mind to entertain the "pity~pot" mentality. She is much much stronger and wiser than to even attempt to do so. It is her same strength and wisdom that have given me this insight to her own pain.

My apologies (to those who will have to do without), if my more direct approach didn't help you to understand that.
As I have just written to the previous poster, "grin and bear it" does not work! (Those words are only for those people who are NOT suffering; for we cannot ever even begin to know another's pain).

Please refer back to the Medical definition of 'dependence'. Note that the # 2 definition spells out "DRUG ADDICTION" in its entirety.
I assure you that I did not write that book.

Again, I have tried only to help those who cannot help themselves out of fear (or ignorance) of another.

I believe that through them all (my postings) I have tried to help another out. My apologies (again) if you did not see it that way.

I will close my note to you here exactly as I had closed my first posting [to those parents it applied to]:
"Worry less about the pills than you worry about the pain. When that pain is gone then, (and ONLY then), are you/your child to worry about getting away from the pain medicines.

Know that there are no two ways around it.
Know too that it doesn't happen overnight.
I can only promise that it WILL happen.

Admit that the elephant is in the sitting room. But leave him quietly alone.
He will leave in his own time.

Peace and health to everyone during this holy season, whatever your own beliefs are.

Believe in yourself.  More importantly, believe in your child."
end quote/note

___

One gal wrote that alot of people just don't like the word "ADDICT"
~To whit, (and touché), "a rose by any other name" would apply.

Maybe this will begin to sink in to peoples psyches, and maybe not.
I really did try to help these people out.

I have this image of my own 'what if' here...
It is the image of my own CaseyAnne, had I ever thought to 'ration' her pills out of fear of what the neighbors would say.

And how, exactly, would I have accomplished that?
Would I take her to the doctor, ask for a diagnosis, and then tell him, "Thanks Doc, I'll take it from here." ?

And now, I have images of many kids, much like my Casey, being rationed.
Know that it is very hard to get those images out of my mind.

Have a day.

XOXO
Anne


PS
If you haven't read Part One, please do so. CLICK


To All "Addicts"

"I'm right there in the room, and no one even acknowledges me"



Good Morning All...

I am going to cheat this morning as I have much to do before the dang snow flies.
I have written the following to our pancreatitis group. After reading a few messages that dealt with the parents problems. Their failure to give their own children, who are suffering, the doctors prescribed medications; simply because of the negative implications of 'addiction'.

I know there are many children and adults who will not be getting any relief from their pain due to the ignorance of others.

You know me. I call a spade a spade.
Read on.

XOXO
Anne

**************

There is an elephant in the room.
You know he is here.
Yet we all dance around our replies so very cautiously when we pretend he is not here.

This is my story- Mine, and my daughters.

Having seen CaseyAnne, 22, deal with this illness for 5+ years now, I have also seen her receive massive amounts of drugs to treat it, and the same massive quantities of drugs to keep the pain at bay. (And I learned a very long time ago already that some of the things she has taken would kill a small horse).

It frightened me horribly to see my 4.0 GPA honors student dependent on these dangerous drugs. After all, she is my youngest daughter. She is the one who took the ACT (college aptitude) test at only 11, and received an 18 on it!!!
Even Northwestern and Bryn Mawr wanted her after that. The letters, from all over, just kept coming in!

Then came the dx... "Chronic Pancreatitis"
I think it was there earlier on in her lifetime, just that we never caught it.
Her tummy aches were 'growing pains'.
Or maybe she had a bit of food poisoning.
Perhaps mittelschmerz.

Whatever, it was, it would pass.
Those bouts always did. (Given enough time anyway).

Those tests. The hospitalizations. The flare ups. ALL too numerous to recall offhand. The surgeries that followed, numbering already in the high teens.
All these things brought drugs, and more drugs.

Oh my god, my daughter was an addict!

With that thought process came a very profound sense of failure. How would I explain this?
Yet if you know me, you will respect that the feeling of failure I had didn't last long. There came a profound sense of  compassion, and some very literal understanding.

She NEEDED those drugs to get through an hour, or a day. (And damn what anyone else thought they knew)!
She needed those drugs just to live and breathe.
Always responsible, she did not take more, (always making an appointment, or a trip to the ER), when she felt it wasn't enough-
(Those times she is bent like a question mark, and pain radiates from her features, her sorrowful little body bent, -sad, and twisted).

Casey had her TP/AIT last December. We spent Christmas and January in Minneapolis, so far away from home. Naturally her overwhelming and unrelenting pain was gone.

She recovered from that, only to learn that she had megacolon. In April they removed 70+% of her colon.

She is now facing two more surgeries.

She is still on narcotics, (though she has removed herself from the Fentanyl patch).
She is also attending college, and is still receiving great grades.
All this, not only because she has a great attitude, she also has a wonderful pain doctor.

Is she an addict?
Yes she is. And in the most humbled definition of the word too.

Now about that elephant...

I know there are many parents who are reading this, and who cannot get past the negative images of what an 'addict' is.
Get over yourselves already.
That addict is your child.
That addiction is not negative; it is only the way your childs body has reacted to the only way s/he has to relieve the pain and the suffering.

Keep your priorities in order.
When people ask what your child is taking, remember only that it is nobodys business but your own.
Remember too that, (if negative in the least), your own gestures, sighs, attitudes, and words can/will offer the greater pain to your child. Your son/daughter has enough to worry about already.
Do not put more onto them.

That addict is your son/daughter.

Worry less about the pills than you worry about the pain. When that pain is gone then, (and ONLY then), are you/your child to worry about getting away from the pain medicines.

Know that there are no two ways around it.
Know too that it doesn't happen overnight.
I can only promise that it WILL happen.

Admit that the elephant is in the sitting room. But leave him quietly alone.
He will leave in his own time.

Peace and health to everyone during this holy season, whatever your own beliefs are.

Believe in yourself.
More importantly, believe in your child.

XOXO
Anne



** Comments are briefly closed. Please comment on following post...


Advocacy for Patients with Chronic Illness, Inc.


http://www.advocacyforpatients.org/
Just saving this link for anyone with Chronic Illnesses...

XOXO
Anne
_______________

WELCOME to Advocacy for Patients with Chronic Illness, Inc., where patients can get free information, advice and advocacy services in areas including but not limited to the following:

***** How to get your own medical records.
***** How to get and keep health insurance.
***** How to get health insurance coverage for particular treatments, drugs, and/or therapies.
***** How to get private disability insurance coverage.
***** How to get Social Security Disability Income.
***** How to assert your rights under the Americans with Disabilities Act.
***** How to assert your rights under the Family and Medical Leave Act.


You may request assistance by writing to attorney Jennifer C. Jaff, Esq. at patient_advocate@sbcglobal.net or by calling her at (860) 674-1370.
If she can't help you, she will try to direct you to an appropriate resource.

Advocacy for Patients with Chronic Illness, Inc. will provide advocacy services not including litigation. If your claim cannot be resolved without litigation, we will attempt to refer you to an attorney in your area to bring suit on your behalf.
(Thanks to Jamie Diaferia of www.InfinitePR for helping to spread the news).
_______________

You may know someone who might need this referral link?
Please send it on to them


The Sun Will Come Up Tomorrow


.
.

Warning! Do not read while eating...




Good Morning!
We are in Minnesota- Away from the maddening crowds of Flintville!

I took a few pics before we left.
Of the 5+ inches of rain we had...
.
5+ Inches of Rain  
.
.
Which is very good for the trees.  And all those apples still left.
.
.
Apples 
I imagine that Sue and Glenn will fill that pickup truck more than once yet! Hopefully will be stopping by even in my absence, and take a bunch of leftover squash for their deer too.
(Gritter, they are in the fields behind the old garage).
.
.
Now y'all know that I have a bit of a mowiss problem come Fall and its falling temps.
So I had to get the rodent killer out.
.
.
Mowiss Hunter
Ok, most people call it a mousetrap...

I set it up in the attached garage-
I'd hoped that the teeny tiny bit of cheese would prove lethal for a few of those varmints.

Little did I know that the trap would set itself off almost immediately!

Since my back sucks, I grabbed a can from the recycle bin instead of carrying out each one to the dumpster. I used that to hold my little dead guys.

If you're eating, & have ignored my previous warning, do not look at the pic below.
.
.
.
Mowiss~Deceasedum 
The first three dead bodies.
.
.
Before we left I unplug everything. I have a little fan atop the piano that I run constantly to circulate the air in my living room.
Given the fact that it is 29' long, the air does not always get moved in the NE corner. So I use that fan...

As I reached down to unplug it, I spied one of Sputnik's little catnip toys on the side of the piano.
I was going to grab it for him until the dang thing suddenly grew legs and disappeared behind the piano.
I jumped about 5 feet, and still had to unplug that fan. (Damn. I've got another one in the house)! And triple damn!
So I brought the trap inside to set by the piano.


.
.
.
Casey; Ready to leave 
Casey didn't seem to care that something could jump on her at any given point in time.
.
.
.
What would YOU do?  
We did what anyone with half a brain would do, and left home! 
hehehe

Of course our first stop was good old Ringle, WI for Punk to do whatever she needed to. And we get to stretch our legs too.
.
.
Ringle Woods 
Sure is pretty this time of year!

In order to get as far away from that mowiss as I could, we loaded ourselves back into the car and were off once more...

Seeing a trailer that carries "Caution Horses". 
(I have never heard of that breed?! hehehe
.
.
 .
Horse Trailer and Buggy  
The trailer with the buggy on the top!

We'd left late, so were treated to the sunset off I-94
.
.
.
Sunset  
.
.
.
.
Sunset 
Sorry for the blur...  Nearing Minneapolis.

Yesterday morning, the sun came right back up!

.
.
.
.
Minneapolis  
Heading to the campus for Casey's appointment with Dr. Sutherland
.
.
MN October 27, 09 109
Self explanatory where we were.
.
.
And one of the grounds...
.
.
Outdoors  
.
.
After a long appointment, Dr. Sutherland has ordered more than a few tests, beginning with the bloodwork from yesterday. 
Her liver tests are consistently high- And remembering that there is a cyst on her liver (which has been there ever since her very first CAT Scan), he has ordered now 3 more tests as an outpatient.  (Lord, she does NOT want to be hospitalized, ever again).

At ten this morning we are to be back for her HIDA Scan.
This stands for 
hepatobiliary iminodiacetic acid scan, (so I will use HIDA from now on)...

Hopefully this will be done by the time she has her EGD at noon.
The EGD is called an Esophagogastroduodenoscopy
, (I will use EGD from now on). An examination of the lining of the esophagus, stomach, and upper duodenum with a small camera (flexible endoscope) which is inserted down the throat... (Click for more)...

Tomorrow will bring its own round of tests, one being another CT, and an ultrasound.

After she had been poked for blood, (much), she was hungry. We stopped at Arbys- She got some kind of taco.

.

.
.
CHOWING DOWN
Punk wanted that taco too!
.
.
.
.
KC, with Punk in a Babushka 
Instead she was turned into a towel headed dog...
.
.
.
Casey is still asleep.
Since she cannot eat or drink anything this morning, or tomorrow for that matter, she gets to sleep as long as possible... I would want to too.

She did wake to take Punk out early this morning. My back was being very uncooperative to say the least, (and here, it is not a matter of sending the dog out the back door to take care of herself).

It is gloomy outside- Cloudy, and the last time I looked there was frost on every car. (I did find my ice and snow scraper and made sure it was in the car for our trip). It will clear itself by the time we have to leave though.

Hopefully Kelli is not having too much fun with the mouse s(h)ituation at home. Am thinking Randy might have been there too. I'd explained to him that Kelli doesn't mind live mice, but is bothered much by the dead ones. (Perhaps she was Minnie Mouse in a prior life)...

I'd better close for now. Time to get out of my baggy sweats, and look alive for the day.

Love to all.

XOXO
Me

PS
For those of you that are diabetic or know someone who is, there is a nationwide recall of all Accusure® Insulin Syringes.
CLICK here for that info. http://www.fda.gov/Safety/Recalls/ucm188137.htm


Pancreatitis Researchers Must Look Elsewhere for Causes.


http://insciences.org/article.php?article_id=5608
Link Between Pancreatitis and Alcohol Use Not as Strong as Expected, SLU Researcher Finds -

In an NIH-funded study published in the June 8 issue of Archives of Internal Medicine, a JAMA/Archives journal, researchers examined risk factors for pancreatitis, looking specifically at the connection to alcohol and tobacco use. Investigators, including a Saint Louis University professor of internal medicine, were surprised that the relationship between alcohol consumption and pancreatitis was far less than expected.

Frank Burton, M.D.
Inflammation of the pancreas, known as pancreatitis, affects 80,000 to 100,000 Americans each year. The main symptoms of pancreatitis are pain in the upper abdomen, nausea, vomiting, fever and sweating. Over time, pancreatitis can lead to complications including digestive problems, diabetes and pancreatic cancer.

"These research findings dispute the notion that alcohol use accounts for around 80 percent of pancreatitis cases, as previously believed," said Frank Burton, M.D., professor of internal medicine at Saint Louis University School of Medicine and one of the study authors. "In fact, alcohol's contribution to pancreatitis appears to be much lower."

One thousand patients with pancreatitis were enrolled in the study along with 695 healthy patients, who served as a control group. Researchers found that only 38.4 percent of men and 11 percent of women with chronic pancreatitis were very heavy drinkers, a level much lower than anticipated.

Smoking, however, was found to be a significant risk factor for pancreatitis, as was very heavy drinking, defined as five or more drinks a day. The study also demonstrated that the combination of smoking and alcohol is a risk factor for the condition.

"Interestingly, this study suggested that other causes, such as environmental or genetic factors, contributed to developing chronic pancreatitis in the large group who did not have a history of heavy alcohol use," said Burton, who is a SLUCare gastroenterologist. "This offers a great deal of hope for the future that with continued studies we will be able to identify other potentially treatable causes of chronic pancreatitis."

Researchers will now turn to other factors, such as genetics, in their search to determine the causes of pancreatitis.

Established in 1836, Saint Louis University School of Medicine has the distinction of awarding the first medical degree west of the Mississippi River. The school educates physicians and biomedical scientists, conducts medical research, and provides health care on a local, national and international level. Research at the school seeks new cures and treatments in five key areas: cancer, liver disease, heart/lung disease, aging and brain disease, and infectious disease.

Contact: Carrie Bebermeyer, 314-977-8015, bebermcl@slu.edu
Source: Saint Louis University

**********************************

After seeing Casey suffer without relief for so many years, it's about time that maybe these damn doctors in the ER's (and elsewhere) will not be asking this as one of their first questions then.
It only adds insult to injury... And back again.
Even when answered truthfully the first thing they want is BAC because then they didn't believe her.

XOXO
Me

Fear

Good Evening All;
1st of all, please do not share  this with Casey. She has enough on her plate as it is.

This next month of waiting to go to Mpls is going to kill me.

I know that I make it seem almost like no big deal; this whole thing about Casey's transplant. In reality, I assure you that could not be further from the truth.

I cry. (Been having a real hard time today with that).
Not even sure if it is because of everything that could go wrong; or if I am so relieved that maybe something will go right.

I am so freakin' afraid for her.
This is not a magical transplant.
It can bring with it years more of surgeries to correct other things. Her spleen may have to be taken out down the road.
The AIT could fail, and she would then need an ICT transplant (which is using a cadaver islet cells).
And yes, she knows all of this; and wants to go through with it.

I quit that pancreas group already-
So (too) many stories of continued pain and everything else too.
But if I wouldn't have joined, I wouldn't have found Dr. Sutherland.

Therein, (selfishly) lies my greatest fear.

All of her other referrals and recommendations have come from herself, or her doctors, or the hospital. Her personal, and God Given, strength has brought it all together, no matter where these referrals come from.

Still. if anything goes wrong, I have no one to blame but myself.
What an godawful feeling that is. And I am not even sure if it is selfishness or fear. Maybe a little of both?

So bear with me. I still am having one hell of a time trying to concentrate on your own blogs.
What the heck is that all about anyway??? Must be old age.
Know that I try.

For now I am going to go put my feet up-
Too much playing with the dogs, and I am ever so tired-
So is Punk (tired)... She lays at my feet, bless her furry soul.

My love to all.
:-)
Well, as long as you don't tell me that God only gives you what you can handle. (I truly disagree with that sentiment).
Forgive me if that angers you.

Have a good weekend.

XOXO
Anne

Casey's TP/AIT (Transplant) Edited 01-05-09

Start:     Dec 18, '08 05:30a
End:     Jan 10, '09
Location:     University of Minnesota
Transplant Surgery all day.
These surgeries generally take approximately 10-13 hours.
Please keep her in your thoughts, your hearts, and your prayers, during this most Holy Season.

Sign Your Donor Card, License

Merry Christmas Casey!

XOXO
Anne

~
diit-head
(Above islet photo courtesy of T.C. Brelje and R.L. Sorenson)

For more info...
http://www.surg.umn.edu/diabinst/treatmentspancreatitis/pancreatectomy.html


XOXO
And Forevermorelonger...

***
Casey's surgery went well. (Both of them)...
Her first, taking over 13 hours.
The 2nd (to remove 2+ liters of blood and fluid from her abdomen) also went well. During this surgery the doctors also removed a blood clot (larger than a golf ball) from her duodenum.
As of 1/5/09, she is also possibly facing a diagnosis of C-DIFF.

As always, your prayers and comments are deeply appreciated.
From your hearts to God's Ears.

CaseyFace Update. And The Witches Hat.

  magnify
Casey, at the University of Minnesota.
11-04-08

.
.
Good Morning Everyone;
I have been trying to get around to blogs-
Most times I can, and at others my goofy dial~up quits on me and I have to reconnect.
Yadda. Yadda. Yadda.


We got home Wednesday afternoon, late- and gosh I have been so tired! So I have just taken it easy for the most part. But I did get unpacked. (Always a bonus)!

A few of you have written, emailed, and commented about Casey.
I have waited to update you, thinking she might do it on her blog.
She has not felt up to it, so here goes...

They have 'tentatively' scheduled Casey's transplant for Dec. 18th.


Dr. Sutherland feels that the TP/AIT will definitely stop her attacks.
(I sure as heck hope so).

TP = "Total Pancreatotemy"
AIT = "Auto Islet Transplant"

They remove the pancreas, do the biopsies.
Then isolate and remove the Islet Cells from it. (The Islet cells are the ones that produce insulin).
They then transplant the Islet Cells into her liver.

The liver is a regenerative organ. These cells actually grow and work within the liver then, instead of the pancreas.
The hope here is that she will not need to be insulin-dependent after her pancreas comes out.

They need to do all the financial BS, and get that guarantee... AND they have to finish with all of her records. (She has Tupperware storage boxes full).
I know they took all the discs of her surgeries etc.
We have to get there 2 days in advance of everything for tests; and to get her body ready.
The surgery is SO long...
And I'll be a basket case. (Yes, worse than I am now).
I am happy that my kids are all grown; because in true Dr. Suess fashion, Christmas will be canceled this year if she does have it on the 18th.

She will probably be in intensive care until at least Christmas... Some people have gone home 3 weeks out, some have gone home after 2 months. I have a feeling it could be a long winter...
BUT, one kid went home after only 2 weeks!
He was 17, and had not been sick this long; so they didn't have a problem transplanting his islet cells to his liver.

That is all I know for now...
We wait to hear back from them.



As we waited to be called in, the doctor got called away for emergency surgery.
So we went for a stroll (and a roll)!
.
.
Cnv0776 by you.
.
.
One very nice man took a picture of the 2 of us too.
.
.
Cnv0780 by you.
.
.
.
I had asked another man if he would take our picture.
(What, all of 4 seconds)?
To which he looked at me with my camera, and Casey in her chair, and said,
"No. I have to eat lunch."

hehehe
TRUE!    (And I immediately felt like a leper)!

As he walked away I muttered to him that he didn't need it.
(See, I don't like being made to feel like a leper).

The guy that did take it heard the exchange and stepped right up..
.
.
After the Dr., we drove around for a while.
Off in the distance to see a remarkable water tower.
.
.
Cnv0787 by you.


.
.
.
.
Cnv0789 by you.
.
.
It is a park now.
At the bottom of the hill were 2 young men playing tennis.
(Punk was simply enthralled).
.
.

And so far up for Casey!
.
.
Cnv0801 by you.
.
.
Cnv0792 by you.
But she made it all the way!
Downtown Minneapolis in the background
The weird building on the far right is the hospital
at U of M
...
.
.
Another man  came up while we were taking pictures
He took another of us.

(Must have already had his lunch)...
.
.
Cnv0798 by you.
Punk seemed to want to know what the heck he was doing with my camera?
hehehe

.
.
A long trek back down, but it's always easier going downhill


.
.
Cnv0803 by you.
She uses that cane with such aplomb!

And hey, I haven't gotten thwacked with it!
...Yet!

.
.
I'd better close for now...
My dogs are getting restless and so am I.
A little fresh air will do us all a fair amount of good.

Love to all!

XOXO
Anne

Counters

Originally posted to my Y! 360, Friday November 7, 2008 - 10:13am (CST)

Please. Copy. Paste. Share. Email. Vote.

  magnify

Photo taken at St. Marys, in March.

LONG,
BUT A "MUST READ" ~IF YOU HAVE NOT DECIDED WHO TO VOTE FOR.

Many of you know that I am not a very political person. I stay 'current' best I can, but that is about it.

I do not mean to ever tell anyone who to vote for, but in the case of many "undecided votes" this is only an appeal to them.

Have you noticed where the McCain/Palin signs are?
Am wondering how many of those people really DO make in excess of 200/250K each year?

A while back I'd posted a blog that had cinched my own vote.

It is simply entitled: "An Open Letter to John McCain" http://flintville.multiply.com/journal/item/681
(Please CLICK HERE to read this if you are unfamiliar with it).

So that you know up front, I have voted for Barack Obama.

I have voted since 1976, (the year I turned 18). I have always been proud to cast my vote.

I am neither Republican nor Democrat.
As my own record will allow, I have voted for both through the years.

My youngest daughter is chronically ill.
She suffers from Chronic Pancreatitis.

It is a debilitating disease which, at her age, (21), has been treated mostly only to control the pain.

She has also had many many surgeries, exploratory and otherwise.
With each bout of pancreatitis, her pancreas is slowly digesting itself...

She has lost three out of her last 4 jobs because she has been hospitalized too often. (The 4th being a temporary tax position, for tax season).

Maintaining straight A+'s before she was ill and incapacitated, she has struggled to even be allowed to attend college.
(As many of you already know, that struggle did NOT pay off for her).

http://flintville.multiply.com/tag/%26quot%3Bcollege_problems%26quot%3B

*See "UWGB"- or "college problems" within my tags on my top page

UWGB (The University of Wisconsin at Green Bay), REQUIRED that she guarantee that she could attend an entire semester without being hospitalized, or they would pull her grant money and student loans. Forced then to withdraw by Mr. Herrity, she has been unable to guarantee that with each subsequent semester.

I have watched her go downhill by leaps and bounds some days.

She has constant pain.

Some days it is minor, (# 5 pain), ~livable.

Others she is completely down for the count.

At its worst and ugliest, she is hospitalized for weeks at a time.

She now uses a cane because she cannot eat many things that are vital to her survival.
As her body leaches the protein from her muscles, she quickly grows too weak to walk without the assistance of that cane.

And on to my thoughts/quotes.

In a nutshell a few words from CNN really caught my attention this weekend.

On explaining the differences in the two candidates Health Care Reform. I believe that Austin Goolsbee explained it best.

If I had any reservations of casting my vote, suffice to say I have none now.

As close to the actual words as I could jot them down:

"McCains plan completely undoes the employer based coverage that is the cornerstone of coverage in our country.

20 million people are covered by employer based health insurance.
Under McCains plan, the costs to the employer will be astronomical.

So those 20 million people , (many of whom are already sick), will be thrown into the individual market where the costs are going to be extremely high, or where they just may be excluded because they have a preexisting condition."

That is not possible under Senator Obama's plan, but it is guaranteed under McCains.

Buying your own insurance, even with the 5K for families (paid for by taxing your health insurance monies), will still end up costing the insured.


Trying to buy health insurance?
For a family, 12K is average.
(Then add on your copays, and your deductibles, etc).

As it is now, health insurance companies compete by excluding those who are sick, (like my daughter).

Douglas Eakin then rebutted this with McCains ideas of rewarding prevention and rewarding wellness.

"Mr Eakin, my daughter has done nothing to have/deserve/obtain this disease.
She is neither a drinker, nor has she used illicit/illegal/street drugs to become an addict."

Eakin also said about deferring treatment away from the acute care facilities; the ER's, the hospitals and the like.
That seems to be all well and good. Especially in a perfect world.
*** But what happens when a chronically ill person needs to be treated/hospitalized on weekends?

Would your plan force those doctors to keep their individual doors open 24/7 ? Doubtful.
(Please remember that many of these Drs. make well in excess of 250K/ annually).

As was noted on another show, I also have seen no other Republicans touting McCains health care plan.
That in itself, is highly questionable.

For years, I was paying in excess of $460.00 per month for my own health insurance.
Did I have preexisting conditions at that point?
Yes. Migraine headaches and hypothyroidism. (Neither of which were covered by my insurance for that 1st year; nor were the meds).

One of my daughters surgeries/hospitalizations was in excess of $49,000. (This was after she had been dropped by the college, and then by her fathers health insurance because she was not attending college).

Talk about a vicious circle...
These monies came directly out of my pocketbook, as did many others.


The way I see it...


Think about yourself for a moment...

  • High blood pressure?
  • Thyroid problems?
  • Domestic abuse
  • Migraines?
  • Epilepsy?
  • Previous heart attack or stroke?
  • Ever treated for Lyme Disease?
  • Emotional problems?
  • Any mental diagnosis', including mild depression?
  • Diabetic?
  • Endometriosis?
  • Recurring back pain?

    CLUE: If you have gone to the doctor in the last 3-5 years, then you already have a preexisting condition.

Any of those and you are prevented from obtaining medical coverage, including Medicare backup policies, unless you are rich to begin with.

But wait, that just takes us back to the good old boys in Washington D.C.

A vicious circle of ... ?


Mr McCain, you lost my vote when you said the following in the last debate:
"America will receive more money under my plan because they will receive not only their present benefits, which may be taxed, which will be taxed, but then you add $5,000 onto it, except for those people who have the gold-plated Cadillac insurance policies that have to do with cosmetic surgery and transplants and all of those kinds of things."
end quote

I have heard no apologies nor clarifications from you or your 'people' regarding this. How can you possibly put cosmetic surgery and life saving transplants in the same group?
"Gold plated Cadillac?" You have GOT to be kidding!

~So, here's clarification from me.
Your health care proposal?
It is only more money if people do not spend it.
It is only "better" if they do not have to go further into debt to use it in accordance with your proposal.

I have always prided myself on not selecting my vote on one issue.
I haven't.
I also believe that Mr. Obama will get my Godson out of Iraq.
(But that's a whole nother can of worms).

_____

To my readers,
If you are reading this on Monday know that we will be on the road to visit yet another doctor... Please keep her in your thoughts and prayers.

Furthermore, should you feel this has any merit, please forward or pass it along some other way.

Please do leave my links etc. attached ~so people can be directed to Casey's illness or stories if they would like.

Thank You.
Anne, Anna~Anna, Mama D.
http://flintville.multiply.com/
Anna_Loves_Life@Yahoo.com


*  If there is even the slightest chance that CaseyAnne would be denied health insurance in the future under McCain's proposal, then it is high time to ensure that does NOT happen!

And, there are too many others like herself that struggle to even function on a daily level.

Turn my vote against help for them all?  Not a chance.

Please join me in voting for Mr. Barack Obama.



Originally posted to my Y! 360, Sunday November 2, 2008 - 11:38pm (CST)