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
Showing posts with label liver. Show all posts
Showing posts with label liver. Show all posts
Tuesday, July 17, 2012
Thursday, July 12, 2012
Here we go...
Well here it is. My blog - Welcome and bear with me as I get better at this. Hopefully it will turn into something worth reading sooner than later.
So.
As many of you already know, I'm currently in the process of being evaluated for a double-lung transplant and possible liver transplant. I'm being evaluated at the Mayo Clinic in Jacksonville, FL and so far I'm glad with my choice. The staff at Mayo have been excellent so far. They have put me through the ringer test wise, but they honestly have some of the most capable, and genuinely helpful people on staff I have ever met. Being able to finally leave a hospital after two weeks of tests and procedures withOUT looking like a junkie with track marks after all the need sticks and subsequent blown veins has been a nice change of pace. Don't get me wrong, I love most of my staffers over at Winter Park Memorial Hospital where I am normally admitted, but they can't hold a flame to Mayo. Sorry, but its true.
My CF specialist Dr. Daniel Layish here in Orlando was the one who recommended me to Mayo. I can't thank him enough for that. I haven't even finished the complete eval yet, but I am confident with where I am. Dr. Layish has been one of the best doctors I have ever had. He's kept me goin the last four years and I trust him completely. If he had told me to go to the backwoods of Tennessee and have a transplant done by an old hillbilly with a rusty knife and a bottle of moonshine, I'd have been on the first plane outta here. Well...maybe not. But seriously, his opinion means the world to me and I am so thankful he's been my doctor since I moved to Florida.
The initial evaluation process was two weeks long. Most of you followed me and my mother via Facebook during that time so you have a pretty good idea of what went on. Lots of tests, CTs, MRIs, ultrasounds, biopsies, blood work and procedures. NOT my idea of a good time, but necessary for the lung transplant team to, in their words, "find out everything that's wrong" with me. When I was first told that, I - ever the one to make inappropriate or off the wall comments no matter the occasion - asked the doctor if he was sure he wanted to do that. That he could be opening a Pandora's box of complete madness. What was his response? Nothing. Absolutely nothing but a look that said he wasn't sure if I was stupid or crazy and that maybe the psych eval should be the first thing on the list of procedures to complete. Regardless of what he was thinking, I passed the psych eval. How? I'm still asking myself that.
I've had to return twice since that two week stint, and still have (hopefully) just one more visit to do one final test. This process has drug on longer than I had originally hoped when I opted to come in and get all my tests done at once rather than space them out over weeks and months, doing one or two at a time. My thoughts were I'd come in, do my tests and by the next week I'd know one way or the other if I was ready to be listed for lungs or not. I've never misjudged something so bad in my life. I was hit with multiple setbacks almost immediately. Gallstones, calicifications in my right breast which would need to be biopsied to check for cancer, diagnosed with polycystic ovary syndrome and the biggest setback - a possible need for a liver transplant as well. The gallstones are currently being managed by prescription pain medication because they don't want to risk any more possible damage to my lungs by putting me under the type of sedation required to remove the gallbladder. We did the biopsy while I was there those initial two weeks and the results (thankfully) came back benign. The polycystic ovary syndrome isn't really something that would affect me transplant wise, but since the normal treatment for it is oral birth control, and oral bc can cause blood clots in the lungs (def something I DON'T want) I am being referred to an endocrinologist to determine the best course of treatment. The only real hold up now is this liver business.
As it stands right now, I have officially been accepted as a potential lung transplant reciepient. Got my official letter from Mayo a few days ago. However, my being listed for lungs is being held off until we complete liver testing to determine if I would need a liver as well. Monday is a majorly unpleasant procedure day to determine the blood pressure across the liver. Once that is done, they will be making a decision about how I am to be listed.
There are benefits and drawbacks to being listed as a double lung + liver transplant recipient. One of the positives is there are generally few people on that list, so the wait time can potentially be shorter. As in Mayo's case, I would be the only person on the list so I would be number one. Which means if that happens my call for transplant could be very soon. Also, a liver is commonly referred to as "a poor man's bone marrow" and contains many of the antibodies and lots of other stuff from the donor which would help jump start my immune system and help fight off rejection. Many who recieve both have less instance of organ rejection and that's the most important thing after transplant - rejection and infection. Either can be easily, and quickly, deadly.
But remember what I said - drawbacks. Always drawbacks. While it could be a case of getting the transplant sooner, it could just as easily be the other way around. Once your listed that way, you have to get both organs, which means they both must be viable. If one or the other isnt viable, you're skipped over. Which means I might miss my chance at life-saving lungs because someone just couldn't put down the booze (or various other reasons). Also, the surgery itself is much more complicated and invasive. But I'll get more into the liver aspect of all this as it becomes necessary. No sense posting a bunch of information that won't be relevant.
So thats where I'm at. Waiting. Waiting for them to finish up tests and give me the news as to which way I'm headed. I have a feeling there will be much, much more waiting to come though, so I guess now is as good a time as any to start getting used to it. Thanks for choosing to wait along with me.
Much love.. Erin
So.
As many of you already know, I'm currently in the process of being evaluated for a double-lung transplant and possible liver transplant. I'm being evaluated at the Mayo Clinic in Jacksonville, FL and so far I'm glad with my choice. The staff at Mayo have been excellent so far. They have put me through the ringer test wise, but they honestly have some of the most capable, and genuinely helpful people on staff I have ever met. Being able to finally leave a hospital after two weeks of tests and procedures withOUT looking like a junkie with track marks after all the need sticks and subsequent blown veins has been a nice change of pace. Don't get me wrong, I love most of my staffers over at Winter Park Memorial Hospital where I am normally admitted, but they can't hold a flame to Mayo. Sorry, but its true.
My CF specialist Dr. Daniel Layish here in Orlando was the one who recommended me to Mayo. I can't thank him enough for that. I haven't even finished the complete eval yet, but I am confident with where I am. Dr. Layish has been one of the best doctors I have ever had. He's kept me goin the last four years and I trust him completely. If he had told me to go to the backwoods of Tennessee and have a transplant done by an old hillbilly with a rusty knife and a bottle of moonshine, I'd have been on the first plane outta here. Well...maybe not. But seriously, his opinion means the world to me and I am so thankful he's been my doctor since I moved to Florida.
The initial evaluation process was two weeks long. Most of you followed me and my mother via Facebook during that time so you have a pretty good idea of what went on. Lots of tests, CTs, MRIs, ultrasounds, biopsies, blood work and procedures. NOT my idea of a good time, but necessary for the lung transplant team to, in their words, "find out everything that's wrong" with me. When I was first told that, I - ever the one to make inappropriate or off the wall comments no matter the occasion - asked the doctor if he was sure he wanted to do that. That he could be opening a Pandora's box of complete madness. What was his response? Nothing. Absolutely nothing but a look that said he wasn't sure if I was stupid or crazy and that maybe the psych eval should be the first thing on the list of procedures to complete. Regardless of what he was thinking, I passed the psych eval. How? I'm still asking myself that.
I've had to return twice since that two week stint, and still have (hopefully) just one more visit to do one final test. This process has drug on longer than I had originally hoped when I opted to come in and get all my tests done at once rather than space them out over weeks and months, doing one or two at a time. My thoughts were I'd come in, do my tests and by the next week I'd know one way or the other if I was ready to be listed for lungs or not. I've never misjudged something so bad in my life. I was hit with multiple setbacks almost immediately. Gallstones, calicifications in my right breast which would need to be biopsied to check for cancer, diagnosed with polycystic ovary syndrome and the biggest setback - a possible need for a liver transplant as well. The gallstones are currently being managed by prescription pain medication because they don't want to risk any more possible damage to my lungs by putting me under the type of sedation required to remove the gallbladder. We did the biopsy while I was there those initial two weeks and the results (thankfully) came back benign. The polycystic ovary syndrome isn't really something that would affect me transplant wise, but since the normal treatment for it is oral birth control, and oral bc can cause blood clots in the lungs (def something I DON'T want) I am being referred to an endocrinologist to determine the best course of treatment. The only real hold up now is this liver business.
As it stands right now, I have officially been accepted as a potential lung transplant reciepient. Got my official letter from Mayo a few days ago. However, my being listed for lungs is being held off until we complete liver testing to determine if I would need a liver as well. Monday is a majorly unpleasant procedure day to determine the blood pressure across the liver. Once that is done, they will be making a decision about how I am to be listed.
There are benefits and drawbacks to being listed as a double lung + liver transplant recipient. One of the positives is there are generally few people on that list, so the wait time can potentially be shorter. As in Mayo's case, I would be the only person on the list so I would be number one. Which means if that happens my call for transplant could be very soon. Also, a liver is commonly referred to as "a poor man's bone marrow" and contains many of the antibodies and lots of other stuff from the donor which would help jump start my immune system and help fight off rejection. Many who recieve both have less instance of organ rejection and that's the most important thing after transplant - rejection and infection. Either can be easily, and quickly, deadly.
But remember what I said - drawbacks. Always drawbacks. While it could be a case of getting the transplant sooner, it could just as easily be the other way around. Once your listed that way, you have to get both organs, which means they both must be viable. If one or the other isnt viable, you're skipped over. Which means I might miss my chance at life-saving lungs because someone just couldn't put down the booze (or various other reasons). Also, the surgery itself is much more complicated and invasive. But I'll get more into the liver aspect of all this as it becomes necessary. No sense posting a bunch of information that won't be relevant.
So thats where I'm at. Waiting. Waiting for them to finish up tests and give me the news as to which way I'm headed. I have a feeling there will be much, much more waiting to come though, so I guess now is as good a time as any to start getting used to it. Thanks for choosing to wait along with me.
Much love.. Erin
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