Tuesday, July 17, 2012

Mayo Visit - Monday June 16

Yesterday (Monday) was another Mayo visit. As I mentioned in my previous post, it was hopefully the final procedure I have to do in order for the liver transplant team to make a decision as to whether or not I am a candidate for a liver transplant along with my double lung transplant.

My day started around 10:30am for admissions and pre-procedure work up. This consisted of the usual changing into a hospital gown, going over medical history and the dreaded IV access. This procedure was one I have been dreading, mainly because I had had a similar procedure during my initial eval and to say it was terrible would be kind. Luckily, this procedure went WAY more smoothly than the last. The staff at Mayo is so awesome and they took great care of me. They had me so out of it I didn't even mind when they went in to access the jugular vein and were unable to access it because of my crappy veins and had to start over on the other side of my neck. This of course is a more difficult way to gain access but like I said - my nurse kept the juice flowing and I stayed happy.

The procedure itself was done up in intravenous radiology so that also helped. They weren't just shovin probes into my vein blind. This procedure is (usually) done by accessing the jugular vein in my neck and inserting a stent so they can access the vein with a probe. They inserted a probe into the vein and attempted to access the liver from there. When that was unsuccessful they started over on the other side of my neck. They were able to get into a good vein and send a probe down into the area of the liver and take blood pressure readings. After that they removed the probe and inserted a different one that takes small pieces of liver tissue. They took about 4 samples that are being sent to pathology. I should hopefully have the results of that later this week, although I won't get the final word on the liver decision for a few weeks. Right now I am back at home resting and nursing a VERY sore neck. I'm trying to take as few pain meds as possible so right now I'm holding an ice pack to it. I have a feeling I'll be caving in and takin a dilaudid very soon.

So. As it stands right now, I THINK things are looking good liver wise. A previous procedure done a few weeks ago resulted with a MELD score (model for end stade liver disease) of 7. A MELD score is a numerical scale that determines a patients need for a liver transplant. Less ill is less than 6, gravely ill is 40. However, do to the nature of cystic fibrosis, other things need to be considered for my case, thus the latest liver biopsy and blood pressure tests. The higher the pressure the more likely the need for a transplant. The doctor that performed the procedure said that my number was a 6. Normal range is between 0-5, so mine is just slightly abnormal, but on the low end of abnormal. So hopefully that will be a good result, not a bad one! Again, I won't know the results of the liver biopsy until later this week.

Based on MY understanding of the procedures I've had done and the results of each, I think I'm gonna be able to skip the liver transplant - for now. BUT, again those are just my thoughts, and is no way the official word on this. There could end up being things that I am not aware of that factor into this that may affect their decision. And just because I don't hafta get one now won't mean I won't need one later. Regardless, I still have liver disease and if it continues to get worse, chances are I WILL need a liver transplant at some point, even if its not now. So, we're still waiting for the final word. It will probably be a few weeks before we get a decision one way or the other. More waiting - as usual!

I wanna take this time to send out HUGE thank yous to all of you who have been keeping up with me, Chris and my family through this. The prayers and love that have been sent our way have meant so much to all of us and are truly carrying us through this process. Please keep us all in your prayers as we wait for the word on liver transplant. If they decide I need both liver and lungs, many more tough decisions will hafta be made.

For now though, its time for some pain meds and some TV. Much love to all...Erin


  1. You hang in there and know so many of us who don't comment much are keeping up with you and keeping you close to heart.

  2. Erin, thank you for your blog. I know it takes effort on your part to keep it going; it is so beautifully written. I continue to pray for you
    and your family. Your positive attitude will carry you far.