Makalem and total pancreatectomy

[Guest guest]

Hello everyone,

It has been awhile since I posted but I have been trying to keep

up with everyone's progress. Makalem had the total pancreatectomy

with islet autotransplantation on June 6. We have been home from

Minnesota for about a week now. They were able to leave her spleen

and did not have to take any of her stomach.....took the pancreas,

gallbladder, appendix and part of her small intestine. They did not

get nearly as many islet cells as they had hoped for but time will

tell. Makalem is requiring a moderate amount of insulin at this time

but it is still early. We have follow up with her primary team in

St. Louis next week and hope to start weaning her off the pain meds.

There were some bumps in the road during hospitalization and still

having a few, but overall we are very hopeful that this was indeed

the right decision. I would like to hear from others who have had

this surgery, especially the teenagers, and what to expect as far as

recovery. Has anyone had complications, and if so, what kind? There

was no mention of follow up in Minnesota, has anyone else done so or

needed to? Makalem is still having some difficulty eating....nausea,

some vomiting. Any input would be appreciated....Thanks to all and

hope for a pain free day to all.

Peace and Happiness,

and Makalem ez

[Guest guest]

In a message dated 6/29/2003 10:11:28 AM Eastern Daylight Time,

ldmartinez64@... writes:

> Makalem is still having some difficulty eating....nausea,

> some vomiting. Any input would be appreciated....Thanks to all and

> hope for a pain free day to all.

>

> Peace and Happiness,

> and Makalem ez

>

Hi and Makalem, I am so happy for you. The surgery is over and now you

will slowly be new again. It takes time to recover from the TP/ICT but I

would like to suggest that Makalem eat every hour to two hours and only eat very

small amounts of food. When I first came home from the hospital I ate

one-fourth of a grilled cheese sandwich every one to two hours. By eating

slowly my

digestive system had time to heal and get used to digesting food a new way. By

eating very small amounts of food I didn't have any nausea or vomiting. I

tried eating more at first but it not only made me have digestive problems but I

felt terrible through out my entire body. By eating small amounts of food

and taking naps my recovery went fast and soon I was eating one-half of a meal

and before you know it I was eating a full meal and feeling really well. Just

be patient and eat small amounts until your digestive system catches up. If I

can help with anything else let me know. Shirley

[Guest guest]

Hi and Makalem,

First of all, Makalem has everyright to be proud and know in her heart

that she is an incredibly strong, brave, and tough warrior. That

surgery is NOT easy. It isn't a gallbladder surgery, or an

appendectomy; it isn't " routine " surgery and it IS painful. Spending

some time in the SICU tubed and fighting the macine, or the first time

you sit up in the SICU is akin to reaching the summit of Everest. I

prayed to be tough, to fight the good the fight, and to face each

obstacle with honor. I literally prepared myself for battle before I

went into surgery. That might sound way dramatic, and sure it is, but

that was my mind set. It worked well for me and I am convicince that

each person who undergoes this surgery is a warrior.

I am guessing that Makalem is not an adult. In adults they usually

don't even worry about the risk of saving the spleen. It is great

Makalem has a spleen. I guess in youngsters the spleen makes a lot of

blood products. In adults it mostly makes white cells and helps us

when we are fighting some kind of infection. My spleen was removed so

I had to some vaccines prior to surgery: an H-Flu, and a pneumovax. I

believe I had to get the pneuomax every 6-8 years now for life.

Everyone is different recovering from this surgery. I never threw up

and only had mild queasiness. I was told though that main complain

most recovering patients have is nausea. I was told they felt it was

much easier to treat pain than nausea. But it does get better over

time. What nausea I did have seemed to be related to the G-tube.

Venting the G-tube helped. And when I finally got that tube out things

really improved.

I had my total panc. on May 15. For what it is worth, I am still on

pain meds; low doses. But I will fully admit that I had 8 attacks of

acute panc back to back before my surgery and during that time I never

went without pain meds, and my doses were steadily increased over that

time. My doctors don't want to force a recovering patient to also go

through withdrawl so my move towards being pain-drug free will take

sometime, and I suppose is already underway. I think probably in 6

weeks I will without pain meds and I can't wait. But I also have had

those times when a doc wasn't available for a refill and the pain

didn't warrant an ER visit. Withdrawl sucks.

The only complications I have had is that when my staples were removed

a section of my suture line gapped open. The sterie strips didn't

support it either. So I had a hole in my belly and it got infected.

That has been a big nuissance. I am still working on this wound. My

wife has to pack the wound with saline soaked gauze twice a day and

dress it. Its healing, but very slowly.

As far as sugars go, that is of course the great mystery. I am

currently still on insulin. I am on a sliding scale + twice daily NPH.

I take 11 units of NPH twice a day and I check my blood 4 times a day.

If my level is 100 or above I have to take a shot of regular. I

usually take 2 - 3 shots of regular a day, 3 units a shot. My blood

sugar is very stable so that makes me feel good about the surgery. It

ranges from 80-120 unless I do something silly like go out to dinner

and gorge myself on Don Pablo's which I did last night because it was

my first night with friends, for a movie and dinner, and I have

finally gotten to the point of being able to eat more than a couple of

bites. So, yeah, I splurged. =P That made my blood sugar go to 148.

That is still only a 3 unit shot, so I didn't feel too guilty. Hehehe...

It takes time to know what those pesky islet cells are going do. And

even when they are working great, you can never let your guard down

totally. Makalem will need to monitor her blood sugars some for life.

How is Makalem doing with enzyme therapy? Initially I was not getting

enough enzymes and it had to be tweaked. The signs of malabsorption

including floating stools, diahrea, and a greasy quality to the stool

or diahrea. Making sure Makalem is getting enough enzymes is important

to her recovery so that she gets the nutrition she needs to heal fast.

So how does Makalem feel about the surgery? Has the pancreatitic pain

ended for her? Does she feel it was worth it? I know it will take

time, but I hope for her that she gets passed the recovery hurdles and

can say " I took that big risk, and it had a big pay off! "

Best of luck,

Bert