Monday, October 6, 2014

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  Its a little outdated now but nothing has changed on the recent picture.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!!!


  1. glad everything is healing...question...did you have did you know something was up with your pancrese?

    1. I had to have an abdominal ultra sound for my transplant workup and they found a cyst on my pancreas that was larger than they I had MRIs to monitor it and it kept growing so we had to have a biopsy done. It showed possible pre-cancerous cells so I had the surgery. But as for signs and symptoms I had nothing out of the ordinary for CF.

  2. I had a similar situation prior to my transplant (before going on supplemental oxygen) in terms of feeling better than my numbers indicated. It is amazing how our bodies can compensate for what our lungs are unable to do, and how we push ourselves beyond what a "normal" person could. Because it happens so gradually, we sometimes don't notice the changes in our lung function. Glad the procedure went well! :)