my story

[Guest guest]

I realized I don't think I ever told my " story " . So here it is. It

won't be too long since I am a newbie to all this.

Last Nov I started feeling rundown, but it was unlike any sort of

rundown I had ever felt. I honestly could not get up off the couch,

if I forced myself to go to the grocery store I would get so tired I

would just sit down in the aisles. I felt depressed but it was

different from past depressions. I started having some abdominal

discomfort. It wasn't nearly as painful as what I have more recently

experienced, just very very uncomfortable and I had trouble walking.

I walked like an old person (I'm only 32). I thought it might be

appendicitis so on 12/3 I had my mom take me to the ER. They did a

cat scan and said my pancreas was inflammed. They admitted me and

over the course of Dec did and endoscopy, and mri, an ultrasound, and

some other test that was similar to xray. They found no blockages or

stones or anything that was surgically fixable. All they could do

was not let me eat or drink and keep me on dilaudid. I went through

9 ivs, 2 pick lines and 2 subclavians. They released me with my

first subclavian and I was supposed to give myself TPN and heparin

and such. Can you believe that? I wasn't allowed to eat and so they

send me home to administer all this to myself. Well I only lasted

about a day before I went back to the ER and asked to be readmitted.

Finally around the 10th of Jan they said I needed to either go home

or go to a nursing home. It reached the point that one of my

favorite nurses took me aside and said " you need to get out of here.

Go to UC or UCSF but you need to go " . So home I went. This

time I also had a subclavian that I had to flush daily with heparin

and saline. That one lasted the weekend. It was one of the worst

times of my life. I was detoxing from all the iv dilaudid. All I

could do was lay there and cry. I was so thin I swear I could feel

my bones rubbing, I had to relearn how to eat and drink, I just laid

there in cold sweats and shivered. But because my finances are

solely dependent on my attending school, I went back to start the

next semester on 1/19. It was really hard. So I never really

recuperated. After going back I would have a couple of " good " days

where I was productive followed by a few bad days. Then little by

little the ratio moved to 1 good day followed by 5 bad days then 1

good day and a week and a half of bad days. It wasn't until an ER

visit the Tues before last when a dr took xrays and found out my

bowels were plugged up pretty bad. This was alot of my pain that I

was experiencing. I spent a very painful Weds with some enemas and

finally am feeling alot better. Man, that was worse than

childbirth! I thought I was gonna die. I'm surprised my neighbors

didn't call the cops on me cuz I was screaming like someone was

killing me! I kinda figured ok, this is it. I need to accept that I

will never accomplish anything. I figured I would have to get rid of

everything I own and move in with my parents (who don't really have

the room for us). But now, I find out my dr has released me to go

back to school and work on March 21. I think I'm gonna give it

another shot if I can. The problem is, I've missed so much I don't

know if it is possible to catch up in my classes. I'm close to

transferring so my classes are pretty intensive at this point. You

miss just a few classes and you are sunk.

After spending this week just relaxing and contemplating I am in a

different spot emotionally and spiritually than I was before.

Something about just totally giving up everything I had previously

held so dear has freed me. I don't know the last time I felt so

peaceful as I have this last week. I no longer feel so stressed

out. I think if I can maintain the calm outlook, I could maybe make

it. I just don't know that I have a choice. It looks like I'm gonna

be required to work. If this is true, I would rather be in school

that working some min wage job that just stresses me out. That is

the main reason I quit working and went back to school. I was sick

of being stressed out over stupid jobs that were leading me nowhere.

I think it will be easier to keep up with my health at school where I

can go lay down in the nurses office, eat and drink whenever I need

to, get rides to my classes. Overall, there is more flexibility. I

just hope it all works out somehow.

Well, for those of you who sat through this, thanks. I'm really glad

I'm getting to know everyone and look forward to getting to know

y'all better.

[Guest guest]

Kara,

I am so sorry for all you are going through. It is so hard to be suffering

through this disease. Do you have children? How old are they? Are you a single

mom? That in and of itself is so hard without battling an illness.

I know from what I have gone through with my chronic pancreatitis how

debilitating and horrible it is. I wish I could rewind sometimes and go back to

where I was 3 years ago. Just know that you are not alone and that my prayers

are

with you.

I hope my earlier post about you not giving up didn't offend you. I don't

want to trivialize anything. I just can read the desperation in your email and

am trying to offer some hope. I hope we can all lift each other up and try to

remember to keep fighting! Hang in there girl!

Take care,

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

Kara,

Thank you for sharing your story with us. It sounds too familiar. I

was in the hospital for such a long time and they too sent me home on

home health with subclavians to feed myself and administer medicines.

I could not eat at all. My parents had the choice of me going home on

home health or being placed in a nursing home. I believe that you

were right in choosing home. The home health nurse came by one day to

draw labs and clean the dressing. When she did this she did not wear

gloves or do a sterile procedure. I am allergic to latex and she did

not have any latex free gloves. Needless to say I ended up in the

hospital having emergency surgery because I was septic and the

infection from the subclavian had spread to my heart. I can't even

count how many subclavians, portacaths, and picc lines I have had in

my life. I am so happy that I don't have to deal with any of that

anymore. I had a total pancreatectomy with auto islet cell transplant

two years ago. Since that time I have been more healthy than ever in

my whole life.

Crystal Galloway

ID Rep PAI