Re:Heidi to Henry

[Guest guest]

Dear Henry,

We are all glad to have you back. I joined the group right about the time you

weren't able to post anymore because you didn't have a computer, in July of

2001.

My initial story is at the link for the PAI home page included below, but that

story only covers my first year, and quite a few serious changes happened

after then. Karyn hasn't had the opportunity to add my updated story revision

yet. Essentially, I had an acute attack in April of 2001. A CT-scan revealed

multiple pseudocysts in my pancreas, the largest being a little over 6 cm.

They partially drained that pseudocyst down to about 5.8 cm. by performing a

fine needle aspiration and did a biopsy of the tissue to test for cancer. The

tests came back negative for cancer and my GI decided to see if the

pseudocysts would resolve on their own. My diagnosis was changed to

chronic pancreatitis within two weeks of that first attack.

For the first year after that the pseudocysts did resolve some, and I was

fortunate that year with only occasional pain episodes. CT-scans were done

every 4 months to monitor the pseudocysts' status. By the start of my second

year I began having more continual pain, with attacks lasting several days at

a time, several times a month. I had had severe weight loss (30 pounds) that

was initally successfully treated with enzyme supplements (UltraceMT-20's)

and most of the weight was regained by summer of 2002. As soon as the

pain became more continuous, my weight started dropping, too. I was

upgraded to Percocet 10's, but eventually even those didn't provide any relief

from the continual pain.

I was seeing a gastroenterologist from Hilton Head at the time, and this

doctor kept coming up with excuses as explanations for my increased

physical problems. In addition to another weight loss of 30 pounds over a

three month period, I was having problems with my vision, frequent urination

and excessive thirst. The GI did an EGD and a colonscopy, trying to see

what else might be going on to substanciate my complaints. Other than a

mild case of divirtulitis, he didn't find anything else, so he told me my

symptoms were side effects of some new medication he'd prescribed for me.

After giving the medication several weeks for adjustment, my health had

deteriorated even more and the symptoms had increased, so then the GI told

me that he thought I had " bacterial overgrowth " and started me on an

aggressive antibiotic schedule.

I scheduled an appointment with an Internist for further tests in March of 2003

because I wasn't satisfied with my GI's assessment of my condition. I was

really, really sick and he kept blowing me off. Before I was even able to get

in to see the Internist, I collapsed one morning and my husband took me to

the Hilton Head ER. I had gone into diabetic ketoacidosis and was running

BG's of over 1,000.....and had been, for at least three months. They put me

into intensive care in " guarded condition " , and a few days later I found out

that I'd had pancreas burnout and was now a type 1 brittle diabetic!

Additionally, my pseudocysts had become enlarged again, one was over 6

cm. again and the other was slightly less. I fired that GI and had to start all

over with a new one in Savannah. Between him and my new endocrinologist,

I've been under pretty strict supervision and treatment. My diabetes is

treated with Lantus for baseline insulin and Humalog for meals, and I've been

able to keep pretty tight control, except for those brittle days when my BG's

just have a mind of their own.

My new GI has seen me through another severe chronic pancreatitis attack

where I was hospitalized this past October. My pseudocysts enlarged again

to over 6 cm. They found out this time that because of the abnormal

positioning of my pancreas and where my pseudocysts are located, that

conventional drainage wouldn't be a safe procedure for me. After

consultation with a surgeon, I was told that the risks were too high to

consider. My pancreas doesn't lie transversely from right to left in my

abdomen like most people's, the head of it is just to the right of the base of

my sternum, and the tail is down just to the left of my navel.

I haven't been to MUSC, though my GI has talked to Dr. , and the

surgeon in Savannah, and they (the doctor's) seem to agree on the

assessment that right now there isn't anything they can do. My GI has also

offered to refer me to Mayo in Rochester, or anywhere else I'd want to go, to

see if some other pancreatic surgeon would have another solution. Thus far,

my insurance company won't approve some of the hospitals we've inquired

about. So, for the time being, we're just hoping that the pseudocysts start to

resolve again. I wear a 50 mg. duragesic patch and use 20 mgs. Percocet for

breakthrough. I've been coping as best as I can these last few months with

this.

You're so right about the PAI. Finding this group two and a half years ago

was such a blessing for me. I was such a novice then and knew nothing

whatsoever about pancreatitis, (like you once were), and there wasn't anyone

I knew that had ever had it or that even knew what it was. And as you know,

most doctor's don't have the time, or won't take the time, to tell a patient

what

they need to know that really helps them deal with the disease. It was

through this group that I learned how to cope and what to do. And the

conversations in the group and the questions people asked inspired me to

keep researching, and reading and learning more and more about it. I

wanted to know the answers to those questions and to be able to share them

with other people who were as shell shocked as I was with their diagnosis'.

Well, I didn't mean to ramble on so, but now maybe you know me a little

better and know where I'm coming from. I know I couldn't have done as well,

coped as well, or felt the warmth of support and understanding if it hadn't

been for this wonderful group of people. I'm so glad you're able to be a part

of it again.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments or advice are personal opinion only, and should not be

substituted for consultation with a medical professional.