Gallbladder is out!

Yesterday was surgery day for my gallbladder removal.  My gallbladder has been bothering me for a few months if not longer.  I had lots of gallstones per the ultrasound.  On the ultrasound, it was also constricted like it does when you are eating when it wasn’t supposed to be because I hadn’t eaten for at least 8 hours.  Then was the hyda scan which  is where they inject a nuclear substance through IV and wait for it to get into your system so they can see the things they need to see.  The hyda scan took longer than it should have because my gallbladder was playing hide and seek, it wasn’t showing up within the hour like it should have.  I had to go back for more scans/pictures an hour later and if it hadn’t shown up so slightly at that point I would have had to wait 3 more hours!  Thankfully my gallbladder showed up ever so slightly but good enough to show that it wasn’t cooperating.  When I saw the surgeon 2 days later there was no debate, it was coming out.   Continue reading

CF Clinic day

I managed to get myself up and out the door for 2 doctor appointments.  I had a very hard day yesterday, emotionally and physically.  I finished my Effexor taper the day before which brought on the emotional bad day of crying spells out of nowhere, rages, screaming/yelling out of frustration, brain zaps, can’t find the right words for things, wobbly, dizzy, etc.  Physical symptoms are non productive cough which sucks.  I can’t sleep for more than an hour at a time it seems.  I can’t get comfortable. My anxiety is through the roof. Yada yada yada yada. Continue reading

CF Clinic/Follow up from the hospital

Today’s clinic visit was a follow up from my last admission.  Ya know, the one where I kept coughing up blood, yeah that one.  The visit was short and “sweet” because I had so many other things I had to get done today so I put them on a deadline of when I needed to be out of there.  hahaha   Continue reading

Determination letter received

I received my letter of determination from my lung transplant evaluation….

  • “This letter is in regards to your recent lung transplant evaluation at Barnes-Jewish Hospital in St. Louis, MO.  Based on the results of you evaluation, we feel like you may be a suitable candidate for lung transplant in our program.  However, there are some program requirements that must be met before you can be listed with the United Network of Organ Sharing at our hospital.  Therefore, you have not been listed with the UNOS at this time.  Attached is a letter from your Nurse Coordinator outlining the requirements that must be successfully completed prior to listing for lung transplant.”

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Transplant Evaluation week is coming

We are heading out to St. Louis to Barnes Jewish Hospital for the week of transplant evaluation.  With that comes a lot of emotions as you can imagine.  I am excited, nervous, anxious and ready to breathe.  Not that they are going to fix me right up while we are there but I’m ready to get some answers and find out where I am on the transplant spectrum.   Continue reading

If I didn’t have CF

What if I didn’t have CF?  That is one open-ended question.  This topic for this post has been on my mind for a while now.  I just didn’t know how to go about writing it and then there was the whole coughing up blood thing that got in the way.

The “what if I didn’t have CF” question/statement goes way back to childhood.  I think I am just going to start to list things and elaborate when needed. Continue reading