My journey started back in 1998 when I came down with a bout of pancreatitis. Nothing too huge - a brief hospital stay followed by a visit to a surgeon for gallbladder surgery (lap chole) presumed to be the cause of that pancreatitis.
December 2002 - I get another bout of pancreatitis which was strange because I am not a big drinker nor do I have a gallbladder any more (both of which cause 95 percent of the pancreatitis cases). Docs were content to call it idiopathic, but since I have pancreatic cancer in the family and because pancreatitis is pretty rare in someone with my background (healthy very fit 39 female), I followed up with a GI doc.
Started with an MRCP. A second reading of this by a second radiologist friend started a long arduous journey - she saw a neoplasm (abnormal growth) on my panc. head and ulcinate. This led to a 350 mile journey to another doc in another town for an EUS. Confirmed this neoplasm/tumor situation and also a precancerous growth in my duodenum, which lead to another 350 mile journey to yet another town, another doc, to get an ERCP. This confirmed my DX of intraductal papillary mucinous neoplasm (IPMN).
May 27 - drove another 350 miles (everything is far away in TX!) and met with my surgeon. He gave me the run-down the day before my whipple and answered all my questions. Went to stay with some family in Dallas, had a Last Supper of pizza (!) and went to bed. Rose early the next day with supportive family alongside me and had the old Whipple (4.5 hours long operation).
Woke in ICU with unbelievable pain. I didn't know you could be alive and have that much pain (but you can). Quickly doused with morphine and things were pretty smooth. Nurses were very nice, gave me a much needed sponge bath and let me recover. Transferred to normal med/surg ward in a wheelchair the next day and then began the serious process of getting better.
Two days after my whipple, there was a concern because my O2 saturation was only 80 percent (low) so they bought in pulmonary specialists etc who emphasized how important it is to use that little breathing device they give you and to concentrate on taking deep breaths and coughing. I had been doing all that, but apparently, it was not enough. Things calmed down after that a bit.
Five tubes in me and I looked like a scientific experiment. Wow. Difficult to get around since the tubes catch on everything and are bottom-heavy so they pull on some tender new skin. But you manage, dragging my IV pole around and all the tubes and the walker -- complicated arrangement, but with a little help, it worked out.
They started me on food about 5 days later - just clear liquid diet (jello, apple juice etc) but I couldn't keep it down. Kept having enormous pains as well and huge waves of nausea, but no one seemed to know why. After 2 weeks of not being able to eat and docs being uncertain as to the cause of vomiting and terrible nausea, they finally decided to reduce the size of the inflatable bulb in my stomach that was keeping my g-tube locked inside me. That did the trick. it must have been blocking my pylorus valve or something, because after they reduced that, things freed up a bit and i could eat. Hooray.
21 days in the hospital and I was finally discharged, a lot thinner and very happy. (I lost 25 lbs in three weeks.) Was told that I could eat anything I wanted and could tolerate so off I go to Taco Bell on the way home from the hospital. Yum.
Things were mostly fine for the next four days, but then, on the fifth day post-discharge, I started having huge wracking pain and nausea. Finally got to the stage where it was unbearable with lots of vomiting as well so went back to the ER, this time in my home town. Admitted to hospital for another 5 days to get things calmed down a bit and then, once I could eat again, discharged after that. Cause unknown.
Went back to work after a week at home (part-time) and then went full-time two weeks after that, three weeks post-hospital discharge the second time. Energy levels were completely depleted for several months. I would get extremely tired very easily but this gradually got better and now, one year later, I am back to my normal self.
In the past year since I have had my whipple, I have had several CT scans just to make sure all is ok, one every few months or so. I have follow-ups with my surgeon every 3-4 months and now just one every 6 months along with the CT scans. Little problems related to the Whipple pop up every now and then. Chronic nausea (blah) is a problem, but nothing that a little phenergan can't fix. Docs are perplexed by its root cause (apart from being Whipple-related, obviously), but I think it might be sugar-related. Still working on that theory because it has a few holes in it... Have intermittent small bowel obstructions which come and go, and every now and then push me to the ER. (Caused by adhesions.) Have an incisional hernia (very attractive).
So minor little irritations in life really. Big picture - all is good, all is fine. I have my life back for the most part, with quality of life as good as before. I can do nearly everything I want -- have to be careful mountain biking on trails as I would hate to bash my tummy into the handlebars, but training for triathlons, working full-time etc. Still skinny as a rake, but that's ok. I haven't put on any weight since I got out of hospital a year ago, but that's ok. I have all new clothes now! :-)
Success, of course, should be proffered to my surgeon and to my family for being so supportive throughout all this. Also to my nurses and nurse techs at Presbyterian who were all wonderful. To my mum who flew out from England to be by my side every single day all day when I was in hospital. And to my husband who helped keep the fort down while I was away. I cannot thank these folks enough for their kindness in helping me.
So those who are facing the journey - I would counsel you to find out as much as you can about this surgery. Learn what is normal, what is not, and be your own advocate (or have someone close by who can fit that role for you). At the same time, remember that everyone who undertakes this adventure has their own journey...