My Dads Whipple Story....

 Ok, I will fill in some blanks about my dad since the 1st go around I was pretty vauge.  My dad  went into the VA only to have an out patient Gallbladder surgery.  Minutes before the operation the surgen came out and asked my mom if while he was "in there" she or my dad would mind if he "looked around" a bit.  He had never met my dad before that day and after looking over his chart the night before thought there had to be more going on with him than his gallbladder.  Lack of appitite, tired, weight loss, irritability...etc.  I didn't even go to the hospital with them initally since he would be in and out of surgery and back home in a few hours.  After about 3 hours of no word from my mom we began to worry. Moments later the phone rang and it was my mom. She said the surgen had just come out and told her to get thier kids there ASAP...he didn't have good news.  At this point I had no idea he had anything going on other than the GB surgery.  When we got to the VA the surgen came out to talk to us.  He said my dad had something horribly wrong with his pancreas and he needed to do a Whipple Surgery ASAP.  If we didn't do it right then he probably would not have a chance of making it off of the table alive.  He also said at this point that had he not came in that day he would have only lived a max. of 20 days.  We went into this whole Whipple thing totally unprepared.  We had no idea of the risks, outcome...nothing. His pancreas was discribed to us as a shriveled up piece of bacon.  He did not have a typical whipple (per the surgen) he removed the whole pancreas, alot of his intestine and of course re-routed everything.  He was in ICU for 8 days before moving to a regular room.  On day 9 they had to re-open him because his lower intestine was leaking.  He then spent the additional 38 days.  During this time he did not have a bowel movement, did not eat any food (liquids only) , he had no physical therapy.  He lost 100 pounds and I would say  ALOT of muscle mass.  He literally went in a vibrant man and came out an old man. 

He does take prescribed enzymes(plaretase 8000/pancrelipase USP tablets/lipase 8000 USP units/protease 30,000 units/ amylase 30,000 units: this is all on bottle on the enzyme pill.)...although after reading these posts I'm not sure he is taking enough.  He takes 4 pills 3 times a day 1/2 hour before eating.  He also now takes epoetine injection 10,000 units 2x weekly for anemia, metoprololtartrate 100 mg one tablet 2x a day for heart and blood pressure, terazosin/hcl 10mg 1x day for prostate, nifedipine 90 mg 1x a day for blood pressure, furosemide 40 mg at night and 80 mg tuesday, thursday, saturday and sunday. , levothyroxine .075 mg 1 table 3x a day before meals (thyroid), polysaccharide complex (iron) 150 mg. 2x a day (aniema), B12-1000 mg.shot 1x every 30 days for nutrition. Multi-vitamin senior formula tablet 1x daily.  He takes lantis(glargine) morning and night and novelog(aspart) at lunch for diabetes. 

With no pancreas he is known as a "brittle diabetic." He can go from blood sugar readings of 650 to 28 in a matter of hours.  WIth no pancreas controling his blood sugar is almost impossible.  He had seen several nutritonist and they basically throw their hands in the air after a few weeks. 

Within the 1st year of the whipple he had a heart attack and had stints put in, (3) I think.  And also had a hernia operation.

Due to his diabetes he has congestive heart failure and kidney disease now.  He is supposed to (per nutritionist) eat low carb, low fat, low protien and still consume approx. 3000 calories to gain weight.  FOr a person that can barely eat that is alot of food. 

Honestly at this point I just think it is more important to figure out what he CAN eat with out getting sick and perk him up then worry about tweeking it after he has gained some weight and is physically feeling better? I'm not sure but that is what my gutt says. 

He is 6'4" and 175-180 now.  He looks like a skeleton. He has shaking in his left hand/arm almost constantly.  He is freezing cold all of the time...he sleeps on the couch with a down comforter, a winter coat and a heating pad, year round almost all day. 

He does go to physical theapy m-w-th to ride a stationary bike for 1 hour.  That is pretty much all of his activity at this point. 

Since the whipple, food tastes horrible most days.  It seemed like it was getting better and then a few weeks ago it is back, worse than ever.  He says most things taste to salty. 

Well, I think that is pretty much it.  I'm sure I forgot something...but I will update any info.

I am sending this back to you and I will post it again on the message board. Seems like Charlotte's husband is very similar to my dad. 

I am sorry this is so long but I guess it had to be.  Again, I (we) very much apperciate all of you responses and just the fact that you care enough to help.  Already you have offered more help then the medical feild has given us in 6 years!  Bless you.  Zana

Wow.  I am amazed at what you dad has gone through.  Where the
Whipple is concerned there is no substitute for having it done by
someone who does a lot of them, which is probably not the case with
your Dad's doctor.  Can you see if the VA will send him to a specialty
doctor or hospital?   ------------------------- I somewhat understand
brittle diabetes and know it is the worst kind and very difficult to
control.   I understand why he has to limit his fats and sugars, but
not why he has to limit his protein?  I can tell you that when I was
trying to stuff calories down my boyfriend and he had no appetite the
month after surgery, I used Unflavored Whey Protein a lot... you can
get it at the health food stores...it is designed for body building to
put on weight.  I put it in everything...waffles, pancakes (use sugar
free syrup or jam on them for the diabetes), omelettes (cook them with
I Can't Believe It's No Butter Spray..tastes great on veggies and eggs
but has no fat), fruit shakes, smoothies to add protein and calories to
his diet.  If things taste salty to him, can you see if he does better
eating things that are supposed to taste salty or perhaps things that
are stronger flavored but tart, like strawberries or blackberries.   My
boyfriend found he liked Chinese lo mein. which he hadn't really eaten
before.   I make it with frozen stir fry vegetables, chicken and
shrimp, and then throw in cooked top ramen noodles and cook it all with
olive oil and stir fry sauce.  Olive  oil,  Pam,  or  I Can't Believe
It's Not Butter Spray is better to cook with. You can get MCT oil from
the Pharmacy but they have to order it special usually.   My boyfriend
does really well with Spaghetti (I make it with very lean ground beef,
drained and patted with paper towels to get most of the fat off). Get
the leanest ground beef you can buy (I buy 90% lean/or 93% lean if I
can get it) and make him a big hamburger on a bun with mustard and
ketchup and tomatoes if he likes that kind of stuff, and give it to him
with Baked Potato Chips or you can bake the frozen fries for him
instead of frying them.   If he used to like cokes but cokes don't
taste good anymore, change him to something he didn't usually drink
(like Dr. Pepper or Rootbeer, so that his mind doesn't compare it to
what he thinks it should taste like.   Maybe try homemade fruit
milkshakes, like strawberry shakes, with protein powder added.  I know
he can't eat much sugar, but those coconut macaroons can be made with
Splenda instead and are just as good, and the measurments are the same
with Splenda as for sugar which makes it easy.  In fact most anything
can be made with Splenda. You can't cook with NutraSweet because the
chemical composition changes when heated, but Splenda works great and
you can buy it in a bag that is granulated just like sugar for
cooking.  The only thing I would caution you about since this is also
about putting some weight on him is try to get him to drink after the
meal, otherwise he won't be as hungry.  They used to tell us not to
have Adrian drink water with his meal because it would kill his
appetite.

If you can use Excel, I used an Excel Sheet and tracked
every calorie and protein gram and fat that went in him.  It was a
chore and he is a lousy patient, but I'm pretty persistent. Calorie
King is a great site to look up any foods, even fast food restaurants
to help you count calories and know where you are each day. You don't
have to join to use the search function, but they are very involved
with diabetes too, so should be lots of good info on there for you. ---
http://www.calorieking.com/  ---

Well,
you'll be sick of me by now and I'm going to bed.   Hoping for help for
you with the new doctor....but I'd go with your gut feeling.  If it
isn't working for him, then insist they try something else..or give you
another doctor.  ---

Donna Crane --

dmcrane@cox.net