Just an update

[Guest guest]

Hi all,

This week has been a pretty good one for me, especially the last

three days, I haven't need any of my BT meds at all!! I met with

my doctor this week to review my most recent ultrasound of the

pseudocysts and was disappointed to see so little resolution.

The pseudocyst in the mid section near the head is still

unchanged, now about 5.8 x 3.5 cm, and the one in the tail

showed only slight reduction. My GI again offered to send me to

Mayo in Minn. or Florida for a clinical review with a pancreatic

surgeon to see if they would consider surgery, since the surgeon

I saw in Savannah refused to do it, saying it was too risky. He

doesn't want me to go to a teaching university, saying that he

feels they are too focused on using the patient as an example,

sometimes more willing to take extra risks in the name of

research and teaching, instead of the clinical environment where

the purpose is to discover what the patient's problem is and then

heal it. I had asked him about this, because whenever we talk

about surgery he's always leaned toward a clinical hospital other

than a medical university. Although he feels very strongly about

this, he's always said that he would stand behind any choices I

made. I really like him for his honesty, he realizes that there's

only so much that he can do, and then the rest needs to be done

by the pancreatic surgical specialists. Every time I see him he

reminds me that he'll support whatever other avenues I'd want to

consider in regards to seeing an end to these pseudocysts. He

seems to feel that they are the only thing now standing between

my being completely pain-free.

Unfortunately, my stupid insurance company won't cover either of

these hospitals, so my GI suggested I contact them and see

which hospitals they will cover. That's my project for the next few

days. I still don't know how I feel about this and whether I'm

willing to take the chance of a risky surgery, instead of holding

out for complete resolution. Since they can't do anything

laproscopically, I just don't know about the surgery.

He also set me up with an appointment with the surgeon here to

look at a lyphoma (s.p.?) I have in my back underneath my left

shoulderblade. My chiropractor noticed last week that it had

increased in size and he felt I needed to have it biopsied and

removed, so I'll be getting an opinion on this with the surgeon

sometime within the next couple weeks.

I've also finally gotten approval on my prescription for Protonix.

This is what my doctor had prescribed for me over a month ago,

to take with the Viokase. The insurance company refused to

cover it, wanting a substitution of Zantac or Tagamet, causing all

sorts of beauracratic mess. My GI wanted me on a proton pump

inhibitor, and the insurance company just couldn't seem to

understand this, and wanted a cheaper substitution that wasn't

even close to being what he wanted.

It really irritates me that the insurance companies are now trying

to tell the doctor's what to prescribe for their patients! It's as bad

as the FDA trying to tell the doctor's what pain meds, and how

many, they can or can't prescribe for their chronically ill patients.

It's getting really ridiculous. Now that I'm a consumer, I'm

beginning to see what all the outrage by legitimate patients is all

about.

I have my second appointment with my pain management doctor

on Monday. So far, the increased duragesic seems to be

working well. I'm not happy with how the coverage that my BT

meds works...or I should say, doesn't work. When I need to take

the morphine for breakthrough I'm supposed to take 15 mgs., or

30 mgs. as a last resort. I'm finding that 15 mgs. just doesn't do

anything to reduce the pain, and 30 mgs. still barely dulls it. My

PM wanted me to " try " to use only 15, so I think we're going to

need to make some adjustments there 'cuz it just isn't doing

anything. I'm hoping, of course, that he will be cooperative in

recommending something else.

So that's my update for now. I've really been feeling good this

week....FINALLY! And 's arriving tonight for our

appointment at the bridal shop tomorrow morning.....mother and

daughter are going to try to find THE WEDDING DRESS

tomorrow, and I'm so excited! This time I'm not going to let her

concerns about the price tag stand in our way. I'm taking my

checkbook, the credit cards and my camera, with every intent of

using them this time.

Here's hoping that you all have a peaceful and pain-free

weekend. The sun's bright here today and all the trees are

bursting with new leaves budding. All we need is for the yucky

green pollen to stop covering every surface in sight.....and then it

will be truly lovely.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI

Note: All comments or advice are personal opinion only, and

should not be substituted with professional medical

consultation.