Hospital stay - Saturday 7/21

Well today has been a pretty quiet day compared to the last few days. It was originally thought that I could be heading home today with IV meds but that has been cancelled. Lookin like I won't be heading home until atleast Monday.

For those who may not know this, I have what's considered a "permanent IV" or better known as a Port. Right below my skin is a circular disk with a membrane that is connected into a vein. After years of IVs my veins are shot. This way they can access me for IV meds and can also take blood draws without making multiple sticks in my arms. The port I have is just a regular port, good only for IV meds and blood draws. However there is a different port called a Power Port that allows me to have IV contrast pushed through it when contrast is needed for CT scans and other procedures.

Recently I have been havin some difficulty accessing my port. Flushing is usually no problem, but they haven't been able to get a good blood return. I went for an angiogram yesterday and they determined that there is a blockage at the end of the catherter making it difficult to use the port. Quite a large one actually so the Drs determined I need to get a new port. So thats gonna be happening Monday morning.

Normally I'd be bummed and frustrated that I hafta undergo yet ANOTHER procedure, but I am actually very happy about this one. The placement of my current port has always bothered me, and the fact that I have a port, (which in normal cases makes gettin stuck all the time for IVs and stuff so much easier) but that if I need contrast I still hafta get stuck was really startin to irk my taters. So im actaully very happy that come Monday, Ill have a new power port that can save me a LOT of sticks which I know will be inevitable with the transplant officially a possibility.

So if you would, send up a quick prayer for me on Monday that everything goes well and its a very easy procedure. Wow...I can't believe how great I feel even with this coming up. The news I've received the last few days has done so much to elevate my mood (well that and a healthy dose of Xanax and Zoloft - LOL). And as always, thanks so much for all the love and support. Its truly carrying Chris, my family, and myself through this. We are so lucky to have such incredible people in our lives!

Much love...E

Today has been quite a day...

Last night around midnight I began coughin up a lot of blood. I do this from time to time, sometimes its next to nothing, other times its like something from a horror film. Well last night was somewhere in between, but since my lung function is down in the 20% range, we decided that it would be a good idea to head over to Winter Park Memorial Hospital where my CF specialist is and get on some IV meds and some pain meds. For those of you who have never coughed up blood, it is a terrible drowning feeling coupled with a terrible ripping pain in your chest everytime you cough...unpleasant doesn't even begin to describe it.

After close to NINE - yes you read that right - NINE HOURS in the ER I finally made it up to my room. Soon after the usual visits from my doctors to discuss the plan of action, my Aunt Patti shows up to check on me. After hanging out for about an hour, she gets up to leave. As she does my phone starts ringing. As I was saying goodbye, I decided that whoever it was could wait and I would call them right back. Once she left I checked my voicemail - a call from Mayo Clinic.

Assuming it had something to do with scheduling more appointments, I was in no hurry to listen to the voicemail. I decided to go a head and listen anyway just in case and was stunned by what I heard.

The voicemail was from my lung transplant coordinator, Kelly Norman. She was calling to inform me that they have recieved all my test results back from my recent liver evaluations. She went on to say that based on those results, they have determined that I am NOT A CANDIDATE FOR A LIVER TRANSPLANT!! Did you hear me?? NOT A CANDIDATE FOR LIVER TRANSPLANT!!! Finally, the first piece of good news in the last two weeks! :)

Kelly also mentioned that since I have completed the lung transplant eval and that I was determined to be a candidate for lung transplant, she will be completing the paperwork required today and that she will be giving me a call mid-morning tomorrow to let me know my allocation score and where I am on the list for my blood type.

Wow. I am in shock right now. The last few weeks have been so tiring and frustrating not knowing what is going on and when it will be happeneing. Now, all of the sudden I am less that 24 hours away from possibly being officially listed for new lungs. And who knows, I might be towards to top of the list! This could all happen in a matter of weeks! I means it could just as easily be two years, but the fact remains - I finally have a direction! Of course this means MORE waiting, but its a different kind of feeling with this waiting. This waiting feels like the kind of waiting that can save your life...not the kind of waiting you do to pass the time before you hear the next hideous procedure you hafta do before you can ever get any real answers.

I feel like such a weight has been lifted from my shoulders. Dont get me wrong. I was ready and willing to do whatever I needed to. But knowing that atleast ONE part of my body, even though it is scarred and not 100% on its game, is still doing what it needs to be well enough that I get to keep it! This also means a less invasive surgery, and much less impossing scar (not that im not used to THAT already)...but its just really nice to get some good news. Especially as I sit here alone in my hospital room hooked up to oxygen and IV meds, downing cup fulls of pills, and watchin bad tv reruns.


Thanks for all the thoughts, love, and prayers you all have sent up for me, my family, and for my little 'ol liver....we thank you! Keep it up - it works!! Thank you Lord!

Much much love...
Erin