Pancreatitis

A

Ashland

New member
Sheila was admitted to the hospital last night with severe pain from cf pancreatitis. This is also a very rough time for all of us because her Grandmother just passed away and the funeral is Friday. Looks like Sheila won't be going anywhere very soon.'
 
A

Ashland

New member
This is the first confirmed pancreatitis attack however I think there have been one or two in the past and we didn't know what it was. She is 14 and was dx'ed at age 7. Thank you all for your prayers.
 
A

Ashland

New member
Are there any things that can be done to prevent pancreatitis attacks? Does missing enzymes bring it on and will thtey help prevent an attack? Or is it more related to what foods are eaten?
 
P

Printer

Active member
I went through 10 years of pancreatitis attacks and hospitalizations. CF pancreatitis is caused by mucus coating the organs and in this case causing an inflamation. By the time I was dx my pancrease was "fried". It had "burned itself out". It still prodced insulin but no enzymes. I was dx 10 years after my last attack.

Bill
 
P

Printer

Active member
Improperly digested food in the stomach, continues through the digestive system and causes irritation and inflamation. Pancreatitis is inflamation of the pancreatitis. She will catch on soon and not skip enzymes.

Bill
 
L

LittleLab4CF

Super Moderator
This may be a new issue that will require going essentially going on palliative levels of narcotics to manage pain. Acute pancreatitis which actually can become chronically acute could deliver pain beyond kidney stone quality for a very long time. Don't be concerned over too much pain medication and that could be as strong as fentanyl. Just control her pain and when she is able to go with less or none at all tapering off narcotics gradually will be straight forward. All other medical management is imperitive and if she is pain free or not horrid, this is far better of course just don't fear pain management and don't tolerate fighting a house fire with an eye dropper. Best of luck,

LL
 
A

Ashland

New member
After she was released from the hospital, she had another flair up. Her Lipase was around 200 and she was having pain so we went back to the ER. The gave her some pain meds and an IV of Sodium Chloride. They knew we wanted to get out of there because it was very late so the put a bag that pumps up on the IV. When the IV ran out, no nurses or doctors were there and the IV started pumping air in her veins. We heard a crackle in her neck and then her chest started to hurt really bad. Her skin turned bright red. The doctor said she never had seen this before and didn't know what to do. They did a chest x-ray and then admitted her to pediatrics. By the next day she was back to normal. I disputed the hospital charges and the hospital agreed. Very scary experience. Embolsim?
 
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Printer

Active member
Are you bringing her to the ER at the hospital where her CF Clinic is located or are you going to your local hospital?

Bill
 
A

Ashland

New member
Unfortunatly, we are bringing her to the local ER because the clinic is 4.5 hrs. away. There are times when the CF Clinic will bring a team down to this hospital to help us out so we don't have to drive so far and so often.
 
P

Printer

Active member
The cause of her pancreatitis is CF. If I were you, when she has the next attack, I would drive the 4.5 hours to the clinic. Local Doctors are not trained to deal with CF or CF issues.

Bill
 
A

Ashland

New member
Bill - I agree with your last post. I don't think they understand cf here and it shows. Thank you for your feedback on this subject.
 
P

Printer

Active member
Ashland, I appreciate your kind words. If she is admitted at the CF Clinic, they may be able to properly evaluate her and put together a plan of action that could be followed by the local hospital. Perhaps only one 4.5 hour trip will be necessary.

I wish that I could promise a clear future but it is apt to get worse before it gets better.

Bill
 
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