to Debs

[Guest guest]

Hey Debs,

Well, here we are two and a half years later still doing the same old thing,

trying to cope

with this diease and not let it control our lives, but it does, girl, it does!!

I don't know how

you can work those long hours and not have it totally wipe you out.

The China trip sounds like it was a blast and I'm so glad that you could go and

not have

any problems while you were there. We got off to Belize again and without my

having an

attack like last time, so were able to enjoy the Mayan Ruins, sun and Monkey

River. It was

too short, only 3 days there, but fun.

I hope you can get the meds you need to get relief. I am doing about the same,

but

disappointed that there's no reduction of my pseudocysts, I just wish they would

go away.

Take care of yourself now when you have to, and rest up before you start working

those

long hours again.

Think good thoughts,

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 for

professional medical consultation.

[Guest guest]

Debs,

The lymphomas are internal " bumps " , or collections underneath my skin. One

is underneath my left shoulderblade and the other is in my upper left arm,

between the elbow and shoulder. My chiro found the one in my back, and I

noticed the one in my arm last year. Both have grown in size since they were

first discovered, and the one in my shoulderblade causes me pain and gets

very tender at times. It may be that they're nothing, but the doctor wants to

make sure. They don't have anything to do with my pancreatitis or diabetes.

As for the pseudocysts, I explained that whole deal last fall, but I guess you

didn't see the post on the MB. My pancreas is anatomically located in a

strange position in my body, it isn't placed in the " normal " position where it

goes from near the gallbladder on the right side of the body and then

transversely across the upper addomen with the tail on the left under the

spleen. Mine has the head at the center of my abdomen, just to the upper

right of my navel, and then it goes down my body in a twisted " S " position, with

the tail ending up down below and to the left of my navel. The surgeon said

that because of the way my pancreas is positioned and because of where the

pseudocysts are located, one below the head and the other in the tail, that

drainage wasn't possible because the drains that they have now wouldn't

reach. And as far as surgery goes, he said that was a definite " no " as far as

he was concerned, he said that he wouldn't chance doing it, that it would be

too risky for him to contemplate.

My GI and the surgeon both said that they would be completely supportive of

my getting a second opinion, if I wished to, but they both felt that another

doctor would see where it was and say the same thing. I've just not taken it

any further than that right now, and won't even consider it until the wedding is

over in the fall.

I've felt really well for quite a few months, and with all this wedding planning

and stuff going on, I've just not wanted to look elsewhere. I'm pretty sure

that

wherever else I went (MUSC would be the first place I'd consider) the

doctor(s) wherever I went would want all their own new CT-scans,

ultrasounds, tests, etc., and after having 16 CT-scans, 2 MRCP's, an MRI and

10 ultrasounds in the last 3 years, I just don't feel like undergoing that whole

battery of tests AGAIN right now. Especially when it probably wouldn't be

done all at once, but would involve me driving back and forth to ton

numerous times. It's a 2 hour trip one way, but by the time you put in for

waiting rooms, appointments, traffic, eating and the return trip, it ends up

being an all day deal, and for me, very exhausting!

So that's what that's all about!

Think good thoughts,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI

Note: All comments or advice are based on my personal opinion or

experiences only, and should not be substituted for a professional medical

consultation.

Debs wrote:

> What are these lymphomas? are they lymphonas that can be treated?

> Why are they reluctnat to remove the cysts.