Howdy folks,
For those of you new to the list, my life is like a soap opera. SO, my friends and I have taken it upon ourselves to play around with soap opera titles and mix them with my present situation for a little humor in the subject line.
So we are in interesting times...today, I have some really good news, some bad news, some not unexpected bad news and some unexpected bad news. This is long...I apologize.
1. The really good news is that I met with my new hepatologist today. His name is Dr. Awesome Hepatologist. I like him a lot, and he's much more personable than my former hepatologist, Dr. Smart Guy. The other bonus is that I likely won't have to deal with Nurse Ratched again, a truly horrible person. Dr. Awesome Hepatologist was recommended to me by two friends (you know who you are) and I thank you deeply for that. Unlike other docs, he's not attributing my sweating outbreaks to my liver problems, so he's going to try to get to the bottom of that.
2. On to the bad news...the reason I went to visit Dr. Awesome Hepatologist is because I have had constant nausea and some pain since last Thursday. Nurse Ratched had prescribed some anti-nausea meds for me, but they did nothing. After doing a little internet research, John and I suspected that I might have a bile duct blockage since I had something like 5 out of 10 symptoms. I had some blood work done and a type of MRI called an MRCP. I'm still waiting for the official word from the radiologist, but Dr. Awesome Hepatologist said that it does indeed look like a blockage when taking into account my symptoms. So the bad news is that I will likely need to have an outpatient procedure called an ERCP (feel free to read about it here, if you can stomach it - lol http://en.wikipedia.org/wiki/ERCP) and they will put a stent in to open up the clogged duct. This in turn will give me relief from the nausea. This will be scheduled to happen within a couple of weeks. In the interim, Dr. Awesome Hepatologist said my Vitamin D levels are too low, so he is putting me on a regiment of that, and he has also given me a drug called Marinol. This drug contains THC, as in, the active ingredient in marijuana. I asked him if I would feel loopy and he said that it was likely, and that he would give me the lowest dose possible. I told him I would take it at night only. That being said, I was feeling so awful today that I took one this afternoon when I got home (luckily John was home) and let's just say, the control freak in me is not liking this one bit. On the bright side of things, the nausea seems to be gone for the moment, so I'm grateful for the relief. Ugh...
I also found out that a test called an AFP Serum Tumor Marker came back out of range (0-8.3 is normal and I had 11.0). I don't know what that means, but I suspect that once I hear from the doc and/or get the radiologist's report, I'll find out. Last second update...I just heard from Dr. Awesome Hepatologist...the radiologist @ ABC Radiology completely botched his review of my films and he won't be able to get the USU liver scan doc to review my films until Tuesday or Wednesday of next week due to the holiday.
3. The unexpected bad news is that long story short, the transplant is not going to happen any day now, as we were lead to believe. You may recall that I mentioned that USU had a somewhat unsettling survival rate for transplant patients. I also explained why that was. Well apparently, Medicare thinks that this is a real problem, and they've been put on notice to get their acts together over the next year, or else. So, from now until next August, they are only going to do transplants for people with few risk factors. Someone like me, with a rather large liver and a prior resection, is not a good candidate when taking these new "standards" into account. They have suggested that I get in touch with XYZ University (XYZ); Dr. Awesome Hepatologist thinks they have a great program. I am conflicted because I have every confidence in Dr. Awesome Transplant Surgeon and I would like to proceed @ USU, but if I have to wait a whole year, then I really should explore other options. Dr. Awesome Hepatologist is going to contact XYZ about me. As before, I can always reject an offer of a liver for any reason from either facility. It's very difficult to go from a mindset of "any day now" to "up in the air," but there's not much I can do about it.
Sorry about the rather verbose update, but...well...it's kinda complicated and I wasn't sure how to cut it down.
Don't feel obligated to write back...I'm just keeping you posted. I hope all of you have a wonderful and happy and safe holiday weekend. And remember, take care of yourselves or a part of you could become a part of me! :)
Love,
Foie Gras
For those of you new to the list, my life is like a soap opera. SO, my friends and I have taken it upon ourselves to play around with soap opera titles and mix them with my present situation for a little humor in the subject line.
So we are in interesting times...today, I have some really good news, some bad news, some not unexpected bad news and some unexpected bad news. This is long...I apologize.
1. The really good news is that I met with my new hepatologist today. His name is Dr. Awesome Hepatologist. I like him a lot, and he's much more personable than my former hepatologist, Dr. Smart Guy. The other bonus is that I likely won't have to deal with Nurse Ratched again, a truly horrible person. Dr. Awesome Hepatologist was recommended to me by two friends (you know who you are) and I thank you deeply for that. Unlike other docs, he's not attributing my sweating outbreaks to my liver problems, so he's going to try to get to the bottom of that.
2. On to the bad news...the reason I went to visit Dr. Awesome Hepatologist is because I have had constant nausea and some pain since last Thursday. Nurse Ratched had prescribed some anti-nausea meds for me, but they did nothing. After doing a little internet research, John and I suspected that I might have a bile duct blockage since I had something like 5 out of 10 symptoms. I had some blood work done and a type of MRI called an MRCP. I'm still waiting for the official word from the radiologist, but Dr. Awesome Hepatologist said that it does indeed look like a blockage when taking into account my symptoms. So the bad news is that I will likely need to have an outpatient procedure called an ERCP (feel free to read about it here, if you can stomach it - lol http://en.wikipedia.org/wiki/ERCP) and they will put a stent in to open up the clogged duct. This in turn will give me relief from the nausea. This will be scheduled to happen within a couple of weeks. In the interim, Dr. Awesome Hepatologist said my Vitamin D levels are too low, so he is putting me on a regiment of that, and he has also given me a drug called Marinol. This drug contains THC, as in, the active ingredient in marijuana. I asked him if I would feel loopy and he said that it was likely, and that he would give me the lowest dose possible. I told him I would take it at night only. That being said, I was feeling so awful today that I took one this afternoon when I got home (luckily John was home) and let's just say, the control freak in me is not liking this one bit. On the bright side of things, the nausea seems to be gone for the moment, so I'm grateful for the relief. Ugh...
I also found out that a test called an AFP Serum Tumor Marker came back out of range (0-8.3 is normal and I had 11.0). I don't know what that means, but I suspect that once I hear from the doc and/or get the radiologist's report, I'll find out. Last second update...I just heard from Dr. Awesome Hepatologist...the radiologist @ ABC Radiology completely botched his review of my films and he won't be able to get the USU liver scan doc to review my films until Tuesday or Wednesday of next week due to the holiday.
3. The unexpected bad news is that long story short, the transplant is not going to happen any day now, as we were lead to believe. You may recall that I mentioned that USU had a somewhat unsettling survival rate for transplant patients. I also explained why that was. Well apparently, Medicare thinks that this is a real problem, and they've been put on notice to get their acts together over the next year, or else. So, from now until next August, they are only going to do transplants for people with few risk factors. Someone like me, with a rather large liver and a prior resection, is not a good candidate when taking these new "standards" into account. They have suggested that I get in touch with XYZ University (XYZ); Dr. Awesome Hepatologist thinks they have a great program. I am conflicted because I have every confidence in Dr. Awesome Transplant Surgeon and I would like to proceed @ USU, but if I have to wait a whole year, then I really should explore other options. Dr. Awesome Hepatologist is going to contact XYZ about me. As before, I can always reject an offer of a liver for any reason from either facility. It's very difficult to go from a mindset of "any day now" to "up in the air," but there's not much I can do about it.
Sorry about the rather verbose update, but...well...it's kinda complicated and I wasn't sure how to cut it down.
Don't feel obligated to write back...I'm just keeping you posted. I hope all of you have a wonderful and happy and safe holiday weekend. And remember, take care of yourselves or a part of you could become a part of me! :)
Love,
Foie Gras
