Just returned from the Mayo Clinic

[Guest guest]

Hey y'all,

After being gone for only a week it feels like I'm several weeks behind....I was

able to get online a couple of times to quickly glance at the posts and say a

thing or two myself, but tonight's really the first chance I've had to catch up.

Welcome to all the new members, and old, that have just posted this past

week!! We're always happy to have new faces, despite the problems that

brought them here, because it gives us an opportunity to help each other and

offer our support at times when it's most needed.

I've just returned from a week in Florida. My husband took his annual " Heidi's

birthday week " vacation and took me down to the Florida Keys for a few days

of sunshine, boating, fishing and snorkeling before my appointment with the

Pancreatologist at the Mayo Clinic in ville. We had a marvelous time

in Marathon, totally relaxed and worry-free for four days. After running around

frantically the week before to all my hospitals and doctors picking up all of my

medical records and radiology films, the break to relax and do nothing was

well deserved. It was such a laid back and delightful trip for both of us that

we

really hated to leave. We spent a night in Coconut Grove and another in St.

Augustine on the way back up the coast to Jax.

My experiences at the Mayo Clinic left quite an impression. I've never seen

such an efficient, prompt and highly trained group of people all in one place

like that before. The grounds and facilities were immaculate!! I know that's

not as important as everything else, but it certainly leaves a favorable first

impression. I found the staff to be so cheerful, cooperative and anxious to

please that it was evident that they all liked doing what they did, and that

made me feel more confident about being there.

My registration went smoothly and within 15 minutes after entering the

building I was given my " schedule " and went to the 6th floor Gastroenterology

department. I waited 5 minutes longer and then was called back to the

doctor's examing room. After sitting in an office waiting room anywhere from

45 minutes to 2 hours, on a regular basis, to see my local doctors, just this

promptness alone had me reeling in disbelief! I found Dr. Lange to be very

kind, thorough and not at all condesending. My GI had already spoken with

him in person about my case, and had already sent in some medical records

earlier. I brought all the current records with me. After introductions, Dr.

Lange sat down with me and patiently reviewed my history, giving me all the

time I needed to speak and explain and asking many pertinent questions

along the way. He asked me what I hoped to achieve from the appointment

and his treatment, and explained his philosophy on particular treatments for

different pancreatic problems.

Then he gave me a brief physical examination, and invited my husband to

come back for the remainder of our session together. He explained to both of

us what he wanted to do, what he felt was necessary to do at this point, and

asked for our questions or comments. He did state that he felt that my original

diagnosis of alcoholic pancreatitis was incorrect and that he would change it

to idiopathic (oh, don't ya just love that term....lol!). He said that the

records

and history just didn't show that alcohol was the reason for my disease, and

that the original attack and subsequent diagnosis by an emergency clinic

doctor didn't substanciate that kind of diagnosis. What a switch of attitude

there is between an emergency clinic doctor and a specialized professional!!

He said that he could see that the term " idiopathic " didn't thrill me, but since

there's no SOD, no pancreas divisim, I have a healthy and thriving

gallbladder, no high triglycerides, was not on or had been on any

medications, hadn't received any blunt abdominal trauma and didn't have any

heritary pancreatitis in my background......that idiopathic would have to be his

call unless he was able to uncover something else as a cause.

When I told him that I didn't really care what the cause was, as much as I

cared about how my treatment was, he said that I should care, for the sake of

my children. That if they could determine that there was some genetic fault or

predisposition, it would be helpful to know that for my future generations of

offspring. So he, too, spoke of having me undergo genetic testing.

As for my pseudocysts, and my history of hospitalizations and current status,

he seems to lean toward a conservative approach for my treatment. Since I

have been so fortunate of only being in the hospital 3 times in 3 years, and do

have my CP problems under pretty stable control, (provided that I am on 24/7

medication), he's not anxious to do any surgery that would disrupt this pattern.

I asked him if it would be safe for me to stay on this much medication for the

rest of my life, and he said that it wouldn't hurt me if I had to do so. He

said

that naturally I would be, or have become, dependent upon the narcotics, to

which I told him that I'm sure I already was, because of the withdrawal

experiences I've had, but that this wouldn't hurt me. Because I've had burn out

already, he said he felt that it wouldn't be that much longer before I'd

probably

have even more of a cessation of my pain, and he was reluctant to interfere

with that.

The one thing that he did want to verify was that my pseudocysts are truly

pseudocysts, though, and not intraductal mucinous tumors. He said that quite

often these intraductal tumors can be diagnosed as pseudocysts by mistake,

apparently they look very similar. He said that it was a very, very SLIGHT

chance, but he wanted to be sure, since the treatment for those is surgery,

and he just wanted to be 100% sure that they were what's been diagnosed all

along. He also said that one possible explanation for the reason why my

pseudocysts keep reducing and then enlarging again, yet never fully

resolving, is that there could be some blockage in the ducts that hasn't been

seen in any of my CT-scans, MRI's, MRCP's or ultrasounds. And that if this

were the case, the only way it could be verified would be through an ERCP or

endoscopic ultrasound.

His first step was to order another total blood workup and another CT-scan to

be done at the Mayo, both of which I had done today. Dr. Lange was going to

be out of the office until late Wednesday. Since we hadn't planned on having

to stay there any longer than two days, he said that he would call me on

Wednesday night or Thursday after he'd reviewed my blood tests and film,

and tell me then what the next plan of action is. So now I'm home, waiting for

the phone to ring tomorrow night (opps.....tonight, lol), or Thursday.

I had the a spiral CT-scan today and couldn't wait to tell you what their

technique at the Mayo is for pancreas CT-scans is! No gook to drink...no

obnoxious EZ-san the night before, the morning before, or even no awful crud

half an hour before!! At the Mayo, they only use water beforehand for a

pancreas CT-scan.....isn't that fantastic? I couldn't believe it when they told

me I didn't have to drink anything ahead of time, I thought maybe they weren't

doing it right. Then the nurse came up to me in the prep room with a cup full

of cold water and asked me to drink it. Since I'd had to fast since midnight

the

night before for my fasting bloodwork in the morning, immediately followed by

a four hour fast for the CT-scan at 1:30, naturally I was feeling empty

stomached and dehydrated. So a tall cold cup of water was a treat! The

nurse told me that the radiologists had discovered that on the pancreas scans

they got the clearest readings and best results when the patient's just had

water right beforehand, instead of any of that other junk. They still did the

IV

contrast, but that was all. I was jump up and down thrilled, because that other

stuff always tastes so awful and makes me feel like #$@! afterward!

Of course, I don't recommend that y'all refuse to drink the other stuff or pitch

a

fit when they tell you that you have to at your local hospital or

clinic's.....it may

take a decade or two for the rest of the country to adopt this new course of

treatment, but it sure makes the process a whole lot more pleasant. Just tell

the radiology tech at your next CT-scan session that " at the Mayo Clinic all

they use for prep is 16 ounces of cold water " and maybe someone else will

give it a try!

Sorry for the long update, but those of you who know me know that I'm never

at a loss for words.....LOL!!! I'll cover whatever I forgot in my next post.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep, PAI

Note: All comments or advice are based on personal experience or opinion,

and should not be substituted for consultation with a medical professional.