One Year Post- Whipple

Today marks my one year since having the whipple done on my pancreas.

Last night I re-read all my previous blog posts prior to surgery.  I re-read how scared I was of not bouncing back.  How worried I was that it was cancer.  How necessary the surgery was if I were to ever have a transplant. I re-lived all those emotions last night.  It was quite the roller coaster even on this side of the ending.

Not much has changed in a year, besides my weight and the long scar I now have on my torso.  I am at my ideal weight (Mine not anyone else's) at 116 lbs.  But I had put on quite a few pounds before surgery to be sure I wouldn't fall too low.  I was 132 lbs going into the operating room.  Way more than I ever wanted to be or want to be again.

My health is doing great.  I still do not require insulin although my OGTT I had done recently still put me in the abnormal range.  So I am monitoring sugars for my appointment in October.  But I am not diabetic like we thought might happen.

I did not have any serious complications after surgery which to me is a miracle in itself! The stats for complications were ridiculous!  Besides some lingering nausea into the new year, I was complication and side effect free.  I have my appetite back and I can eat large meals again, which only took about 9 months to sort out.  My bowels have returned to normal too.

It is almost like surgery didn't happen.

Here are some photos to prove that it in fact did happen:

Getting changed into my gowns.  

Putting the IV in.  I can't look when it is inserted or I pass out!  

after the epidural.  Those things are awful but man do they take the pain away after!

post surgery when I was still out cold.  You can see my collection tubes on the left with liquid in them.  They were more annoying than anything.  I had to carry them every time I got up after I was mobile.  And they were sore.  And pulling them so I could go home was HORRIBLE.  I almost broke my mom's hand when they pulled them.  Fuckers were like 4 feet long (I have no idea how long they actually were but let me tell you they felt like they were a mile long)!  

1 week after surgery.  Scar looks pretty good here!  I was still bloated from everything.  You can see the vampire bite on the side of my abdomen.  That is where the two tubes were.  

You can really see the difference in my face with the weight I lost.  This was 11 days post surgery.  I had a really good day and felt great this day!  I remember it well.  It was a rare feeling those first few weeks.

This is my 6 weeks comparison photo I posted on Facebook.  

And this is me today.  My scar looks awesome. I am not embarrassed by it at all.  In fact I love showing it off.  Its something to be proud of.  I can say I survived the whipple.  Not that I wear skimpy clothes but I have a bikini I bought that I love to wear!!!  

Some previous Whipple posts:

10 weeks post

In training for my Life

Surgery is a MUST

Finished Processing

Tobi Podhaler

Home from the Hospital

10 Weeks Post Whipple

It's about time that I update this thing.  I have been really busy and that is great!

Things are pretty much back to normal here.  There is still some pain in my lower ab area but only when I cough.  I think my muscles are recovering and the trauma of coughing every few minutes is not helping.  It will go away in time I am sure.  The skin around my incision is now peeling.  I started using Mederma on it to make it less red and that's when I started peeling.  Related?  Maybe.  Not too worried though.

As far as what I was expecting post things are different.  I do not need insulin thankfully and I do still need enzymes of course.  My body does not seem to have changed much missing a piece of my pancreas.  One thing that changed is my need for Miralax daily.  I no longer need it every day.  I am still working on when to take it though and it could be a few months till I am back to knowing and on a schedule.

The results of the surgery showed that the cyst was entirely related to CF.  There were no signs of cancer at all.  Great news!!!  It does mean this surgery was technically not needed but I am glad to have had it done.  Now any other cysts that grow large like this one and read the way this one did we can chalk up to CF and not Lynch.  Transplant was pleased with the results of course and are happy to have me as a candidate again.

Here is a picture of my torso.  Its a little outdated now but nothing has changed on the recent picture.  Except maybe a few more pounds added to me ;)

Overall I feel pretty good.  My lung function was down a good amount at my clinic visit 2 weeks ago so we started oral cipro to see if it gives me a boost.  I didn't feel as low as I was but it makes sense I am down.  For the first few weeks after surgery I could not cough like I usually do.  So things have been sitting and brewing in there.  The past 7 or so weeks I have been able to cough better and to get stuff up.  My FEV1 was at .89L (29%) down from 1.15L (38%) in July before surgery.  So yeah a significant drop.

My dilemma is this though.  Why is my FEV1 so low, yet I feel like I am functioning at a much higher one?  I know I know, everyone is different, it just seems so strange to me to have an FEV1 of 29% and yet still be able to carry boxes up and down steps (slowly and immediately after my nebulized treatments and only a couple with breaks and coughing fits - but I do it!).  Why is it that I can jog on the treadmill (even if only for less than 60 seconds at a time) if my numbers are such shit?  It is this aspect of CF I just never understand.  I see 29% and I think that I should be home bound and on O2, yet I am not.  I use it to sleep and I need it if I plan on taking my running any farther.  Quality of life ey? LOL

So that is it for me for now.  I am sure that the Cipro will do nothing for me and I will end up in patient the beginning of November.  But at least I will be feeling great for the upcoming holidays!!!