Hereditary pancreatitis

Pancreatitis
#1

After reading the message regarding the show ER, I am so angry. I have been suffering with this awful disease since 2001. Have come close to dying in ICU several times and on my stay at my last hospital, I had to check myself out of ICU AMA (against medical advice). Nobody believed me when I told them I need a PIC line, nobody came to my aid when I was suffering and needed pain medicine, the nurses treated me like I was an alcoholic and was totally shunned. Well I’m not. I found out last year while in the hospital that 4 members of my family on my mother;'s side have this disease. I now have a stent in my lungs because I developed blood clots from my femoral I.V. and have to take warfarin for the rest of my life, besides the fact that I have to get blood work done every 2 weeks. Has anybody ever had a port put in them? I talked with a nurse last night and she suggested that I get one to enable the doctors to have access for an I.V. for the next time I am admitted.

My attacks are coming for frequent & it is hard to keep a job. Is this a good idea or will it ruin what’s left of my veins. I am only 44 and am worried about my life and if I will live long enough to see my son grow up. The necrosis has started per my last dr. - who, by the way has fired me as a patient - I didn’t know they could do that but it’s all for the better because I blame him for my blood clots and hate his attitude towards me. Please, I would like to hear from anybody that has a port in them to find out about any complications.

Hugs to all.

#2

My daughter has a port (for other reasons). The first one lasted 13+ years and has now been replaced successfully. She gives herself weekly infusions of her medication. She is 44 years old.

#3

My husband developed pancreatitis and from what we have been told he inherited a problem where his body lacks teh enzyme that breaks down his triglycerides so his number is usually is way above 1000
they say he was born without this factor and as a child nobody checked his sugar levels and it went undetected for so many years and by the time we figured out what was wrong his pancreas was already shot so they took 90% of his pancreas out last year so far he has been doing ok it is just really crappy as you all know oh and by the way nobody else in he is family has this probably just his mom has high cholesterol so go figure love everyones post i dont post often cause i feel u are all going through this first hand i am only watching so i know the other side.

thanks for all you answers it has been really helpful to understanding what he is going through

#4

Hi,

I got my port almost 3yrs ago and I don’t have any problems with it. I’m a Chronic Pancreatitis Patient suffering for 13yrs. My veins were very thin and overused for continuously for 9yrs. I was scared in the beginning and thought I already have J-tube and my daughter who was born in 2000, since she was a baby got used to hug me carefully, as she was scared to hurt me. But when I had a bad attack and they tried more than 20 times for few hrs easily to get a vein connection. Then I said, I’m ready for the port and they paged to the surgeon and he came and the procedure is done within 20 minutes I think. Whenever I go to ER now it is to get the blood samples and also give pain medication immediately. I’m glad I didn’t get any problems with it until now and going on smoothly. I heard that most of the patients who get the port really do well but some people get some reactions and they get blood clots and they have to remove it and put a new one. This happened to my friend who has breast cancer. Within 3 days they had to remove it and put a new one.

As far as I am concerned I definitely suggest if the attacks are severe and cannot avoid hospitalizations then the port is a miracle. My visiting nurse every month flushes it. I got 8 months gap of hospitalizations then we just kept flushing every month. It’s easy to manage and take care. Hope this helps for you.

Good luck if you decide to have the port!
Durga.