W - autoimmune disease

[Guest guest]

Hi ,

I'm so sorry to hear about your health problems and the resulting

financial difficulties. I can't imagine the stress you are under. I

was very interested in some of the health problems you mentioned

because my son, Joey, has some similarities. Joey developed

pancreatitis when he was 5 and after 7 horrendous years of battling

it, had an enormously successful TP/ICT. We just celebrate the 2

year anniversary of his surgery in June. Joey has had a long history

of immune system dysfunction. The doctors suspected auto-immune

pancreatitis before his surgery, but the were not able to confirm

it. While he was still in the hospital after his surgery, he started

to lose patches of his hair. By February, he had no hair whatsoever

on his whole body. He has alopecia universalis which is an

autoimmune disorder. I guess when his immune system didn't have the

pancreas to kick around any more, it went after his hair. But, Joey

is also having a problem with low IGG. Right now, the doctors have

just been monitoring it, but since his surgery his IGG keeps trending

downward. Since he lost his spleen during his surgery, they have him

on antibiotics every day. They have not mentioned what could

possibly be causing his low IGG, but have said that if he continues

to spiral downward, he will need IGG infusions. You also mentioned

autoimmune liver disease. Right now, this is my greatest fear for

Joey, because not only is his liver doing its regular job, it is also

home to his islets which are preventing him from becoming diabetic.

Could you please tell me a little more about this particular

disorder. We have had problems with elevated liver enzymes and he

has what they call " fatty liver " . Please feel free to email me

personally, since this is not specifically pancreatitis-related.

Suzanne

> By the way, keep in mind that in addition to chronic pancreatitis,

I have systemic lupus, antiphospholipid syndrome (an autoimmune

clotting disorder), type II diabetes, and autoimmune liver disease.

Lupus is on SS's list of potentially disabling diseases so having

lupus may have made it easier for me to get both my federal govt

disability retirement approved as well as the SSD. That really kind

of sucks cause I can tell you that it is the chronic panc that keeps

me from being able to work, requires me to be on daily pain meds,

sends me to the ER and lands me many admissions to the hospital.

Yes, the other issues complicate everything and make things harder,

but the cp is by far the one that is hardest to deal with at this

time. Oh, just to make life more fun, I found out around January

2004 that I also have a genetic IgG deficiency that makes me much

more susceptible to infections! I just get more interesting by the

day. My GI/hepatologist told me that I am his most unusual and

complicated patient! Not what you want to hear from a doctor that

specializes in pancreas and liver problems! Oh well, I just laugh

about it because crying only makes my contacts cloudy and my nose run!