Ahem...that would be "The Bold and the Beautiful," of course. So I e-mailed Dr. New Hepatologist about the whole MELD thing. In fact, here is what I wrote:
There is something I don't quite understand about my MELD score of 22. When I met with you and your colleagues, I was told that I would likely be listed with a MELD of 25. At USU, my base MELD was 7 and my transplant surgeon requested exception points which brought me up to 22. I believe that you receive 3 additional points for every 3 months you spend on the list. I am guessing that you were thinking of listing me at 25 for these reasons.
My base MELD is now 13 or 14, which shows that my condition has worsened, yet you only asked for exception points to get me up to 22...not even 25. Every day I look in the mirror and I can literally see more and more jaundice and more obvious signs of the wasting that is taking place in my body, especially in the past 3 months. The fact that my base MELD is now 13 or 14 shows that I'm heading toward End Stage Liver Disease, and I'm not just at risk for rupturing an adenoma or developing malignant tumors as before.
My concern is not, "What MELD score is good enough to get me a liver sooner rather than later?", it's "What is my MELD score based on my actual circumstances?" I feel that having a MELD score that is exactly the same as my MELD in April does not reflect my current physical condition since my condition has worsened considerably since then.
Please let me know your thoughts.
So yesterday, I received the following response:
Mrs. Gras, you are the top AB on the liver list so it does not matter if you have 22 or 25 or more points. You are at the top of the list. You may list at other centers to increase your chance of receiving an offer for a liver as you would increase the pool of donors.
Wow! So who skipped her bedside manner class? And I thought it was cold OUTSIDE. Ha!
So something dawned on me earlier today. When I went to a transplant conference in June (for current and future patients, donors, families, etc.) I met a man named Brad. His appearance really shocked me. He was quite gaunt and he was rather yellow. It's just an awful thing to "see" how sick someone is. He was the person who inspired me to "come out" to everyone on FB about my medical woes and to call attention to organ and blood donation. I thought it was just awful that he was on the wait list for a whole year and had to go around looking and feeling that awful. Well how ironic that I have followed in his footsteps. At the time, I never thought my health would "tank" the way it has; I always had the risks of rupturing adenomas or having one become malignant, of course, but at that point in time, I NEVER thought I would resemble Brad in any way. Shows you what I knew, right?
Thursday, December 9, 2010
Tuesday, December 7, 2010
December 7, 2010 - Marinol's Dope
Hi all,
Okay, so that was a play on Ryan's Hope, if you couldn't figure it out.
So this will be my first posting directly into the blog and not by e-mail. I called XYZ to remind them that I would be away for Thanksgiving from the Sunday before to the Friday after. We agreed to deactivate me. At the time, I thought this was more or less a switch that they turned off and on. I was mistaken.
The Phenargen stopped working on my nausea prior to leaving for Florida. I contacted XYZ to see if I could go back on the Marinol, and they told me I could. I continued taking the Phenargen because it helped me with the itching. That turned out to be a bad call. I went on the transplant list on November 18, 2010. I flew to Florida and was feeling rather awful and was having some problems with words - my typing, sentence formation, confusion, mood swings, memory, etc. were starting to slip...just a little. See: http://health.yahoo.net/channel/encephalopathy_symptoms. This is a problem that concerned them, as they were worried about encephalopathy. Dr. New Hepatologist told me to stop the Phenargen and called in a prescription for Xifaxan, a heavy duty antibiotic used to treat, among other things, encephalopathy. So they called it in and, of course, no pharmacy in the area had it in stock and they couldn't get it in before Friday. I was leaving on Friday, so I just had them transfer the prescription to a pharmacy back home. Cost for this drug - 550mg 2x/day for 30 days? $1,100.00!!! Thank goodness my cost was only $25!
Okay, so I flew back home, got the mail, and there I find a letter from XYZ saying that I had been deactivated from the transplant list and in order to get back on, I had to have some bloodwork done again! AGAIN!!! Marla, the transplant coordinator, didn't mention to me that I needed to do bloodwork (AGAIN!) to get reactivated. Needless to say, I was a bit....cranky. So I did my bloodwork on Monday and was relisted on Friday, December 3. So I lost 2 weeks instead of 1 week.
So here's what really burns my ass. The way a MELD score is calculated is based on 3 particular blood tests. On top of the MELD score, your doctor can write a letter on your behalf asking for additional "exception" points to give you a higher MELD score. When I was first listed at USU, my MELD score was a 7 (pretty much what any of you out there would score) and my doctors applied for exception points to bring me up to 22. It is my understanding that you get an additional 3 points for every 3 months you are on the list. So the plan for XYZ was to list me at 25. So imagine my surprise when my MELD score with bloodwork came in at 14 (showing that my actual physical health was deteriorating) and XYZ asked for exception points to bring me up to....22. I personally think this is a load of crap, and even though I'm the only person with AB blood type on the list in my locale, if my MELD were higher, it would help me get a liver sooner. I'm going to be talking with Dr. Awesome Hepatologist to see if he can advocate for me to get a higher MELD score. He truly thinks I need to have this transplant done by the end of the year, and XYZ clearly does not share his sense of urgency, so it would seem.
A lot of people are asking me how I feel. That understandable. I feel crappy every day; it just depends how crappy on a scale of 1-10. Today, at this moment, I'd say I'm a 6. To date, I have lost a total of 65 lbs since the birth of my second daughter in August 2008. Some of that was baby weight (10 lbs). Some of that was weight that I seem to be blessed to lose after giving birth (another 15 lbs), so I estimate that I've lost around 40 lbs in the last 12 months that are related to my condition. I've had to up my intake of Marinol. Since changing to Phenergan and then back again, the same dose isn't working as well. That could just be the bile duct blockage increasing as time goes on. I just took another dose a few minutes ago, and I still have A LOT of nausea. I have some sort of sinus infection so I have that post-nasal drip cough all night thing going on. I look like crap. I've lost a lot of fat and a lot of muscle. My skin is wrinkling all over because I don't have the fat and muscle to push it out. I have gone from a size 16 to somewhere between and 8 and 10. My face is aging before my eyes. I now know what I will look like when I'm older, and I'm not liking what I see AT ALL. My belly is rather distended (I look around 6-7 months pregnant). I have veins popping out all over, including varicose veins. My eyes are yellow. My skin has a yellow tint. I don't even recognize myself in the mirror anymore. People who haven't seen me in a month or more are rather taken aback by my appearance, and I totally understand why.
Anyway, that's all the news that's fit to print. This is the time of year when blood and blood product donations hit critical lows. If you are able to donate, please do. You'll never know how many lives you can save, and I guarantee you'll feel good about it. Also, be sure to discuss organ transplantation with your loved ones so they know your wishes and you know theirs. Deciding whether to donate organs at an extremely emotional time is not something that anyone should have to face, and with proper planning and discussion, you won't have to.
As always, be careful out there, or a part of you may become a part of me!
Love,
Foie Gras
Okay, so that was a play on Ryan's Hope, if you couldn't figure it out.
So this will be my first posting directly into the blog and not by e-mail. I called XYZ to remind them that I would be away for Thanksgiving from the Sunday before to the Friday after. We agreed to deactivate me. At the time, I thought this was more or less a switch that they turned off and on. I was mistaken.
The Phenargen stopped working on my nausea prior to leaving for Florida. I contacted XYZ to see if I could go back on the Marinol, and they told me I could. I continued taking the Phenargen because it helped me with the itching. That turned out to be a bad call. I went on the transplant list on November 18, 2010. I flew to Florida and was feeling rather awful and was having some problems with words - my typing, sentence formation, confusion, mood swings, memory, etc. were starting to slip...just a little. See: http://health.yahoo.net/channel/encephalopathy_symptoms. This is a problem that concerned them, as they were worried about encephalopathy. Dr. New Hepatologist told me to stop the Phenargen and called in a prescription for Xifaxan, a heavy duty antibiotic used to treat, among other things, encephalopathy. So they called it in and, of course, no pharmacy in the area had it in stock and they couldn't get it in before Friday. I was leaving on Friday, so I just had them transfer the prescription to a pharmacy back home. Cost for this drug - 550mg 2x/day for 30 days? $1,100.00!!! Thank goodness my cost was only $25!
Okay, so I flew back home, got the mail, and there I find a letter from XYZ saying that I had been deactivated from the transplant list and in order to get back on, I had to have some bloodwork done again! AGAIN!!! Marla, the transplant coordinator, didn't mention to me that I needed to do bloodwork (AGAIN!) to get reactivated. Needless to say, I was a bit....cranky. So I did my bloodwork on Monday and was relisted on Friday, December 3. So I lost 2 weeks instead of 1 week.
So here's what really burns my ass. The way a MELD score is calculated is based on 3 particular blood tests. On top of the MELD score, your doctor can write a letter on your behalf asking for additional "exception" points to give you a higher MELD score. When I was first listed at USU, my MELD score was a 7 (pretty much what any of you out there would score) and my doctors applied for exception points to bring me up to 22. It is my understanding that you get an additional 3 points for every 3 months you are on the list. So the plan for XYZ was to list me at 25. So imagine my surprise when my MELD score with bloodwork came in at 14 (showing that my actual physical health was deteriorating) and XYZ asked for exception points to bring me up to....22. I personally think this is a load of crap, and even though I'm the only person with AB blood type on the list in my locale, if my MELD were higher, it would help me get a liver sooner. I'm going to be talking with Dr. Awesome Hepatologist to see if he can advocate for me to get a higher MELD score. He truly thinks I need to have this transplant done by the end of the year, and XYZ clearly does not share his sense of urgency, so it would seem.
A lot of people are asking me how I feel. That understandable. I feel crappy every day; it just depends how crappy on a scale of 1-10. Today, at this moment, I'd say I'm a 6. To date, I have lost a total of 65 lbs since the birth of my second daughter in August 2008. Some of that was baby weight (10 lbs). Some of that was weight that I seem to be blessed to lose after giving birth (another 15 lbs), so I estimate that I've lost around 40 lbs in the last 12 months that are related to my condition. I've had to up my intake of Marinol. Since changing to Phenergan and then back again, the same dose isn't working as well. That could just be the bile duct blockage increasing as time goes on. I just took another dose a few minutes ago, and I still have A LOT of nausea. I have some sort of sinus infection so I have that post-nasal drip cough all night thing going on. I look like crap. I've lost a lot of fat and a lot of muscle. My skin is wrinkling all over because I don't have the fat and muscle to push it out. I have gone from a size 16 to somewhere between and 8 and 10. My face is aging before my eyes. I now know what I will look like when I'm older, and I'm not liking what I see AT ALL. My belly is rather distended (I look around 6-7 months pregnant). I have veins popping out all over, including varicose veins. My eyes are yellow. My skin has a yellow tint. I don't even recognize myself in the mirror anymore. People who haven't seen me in a month or more are rather taken aback by my appearance, and I totally understand why.
Anyway, that's all the news that's fit to print. This is the time of year when blood and blood product donations hit critical lows. If you are able to donate, please do. You'll never know how many lives you can save, and I guarantee you'll feel good about it. Also, be sure to discuss organ transplantation with your loved ones so they know your wishes and you know theirs. Deciding whether to donate organs at an extremely emotional time is not something that anyone should have to face, and with proper planning and discussion, you won't have to.
As always, be careful out there, or a part of you may become a part of me!
Love,
Foie Gras
Friday, November 5, 2010
November 5, 2010 - Lesions
Dear all,
For the newbies, welcome to the update list! Every time I have news to share, I take a soap opera title and mess with it to make an appropriate subject line. Past favorites include: As the Stomach Churns, Gliding Livers, All My Adenomas, etc. I'm not sure that it's on anymore, but today's title is a play on "Passions."
Moving on...so next up for me is my umpteenth MRI, which is scheduled for Tuesday the 9th at 4:00PM (John - this got changed from 7:45PM as I was writing this, so that means you need to pick up the kids that day!) There are two reasons for the MRI. First, they were concerned about some of my bloodwork and they want to make sure that they're not missing anything other than the obvious. Second, and this is really funny, they couldn't open/read the CD that USU sent of my MRI from early September. Seriously? Seriously? Lame! Gee, I wonder why health care costs are out of control?!?!?!
Two days later, on Thursday the 11th, I am having an EGD at USU. (EGD stands for esophagogastroduodenoscopy...I'm thinking EGAD would have been a better shortening of a word THAT long.) Anyway, Dr New Hepatologist (the XYZ hepatologist) wants Dr. Awesome Hepatologist (my USU hepatologist) to do an EGD on me to screen for dilated veins in the food pipe. It's a simple 15 minute procedure but I am required to be sedated. The scope goes down my mouth and into my stomach. Wheeeeee!
XYZ wants me to quit my Marinol, so I am trying a new drug (new to me) for nausea called Phenergan. I took Zofran previously, but it did nothing for me. We'll see how this new one goes. I've only had one pill thusfar and thusfar, I am not impressed, but I'll give it 'til Monday.
So once I have the MRI, they will list me. I wish there were such a job as part-time or full-time patient, cuz I think I'd do very well. Can you guys seriously imagine what my employer would say about all this if I actually had a job? Crazy...
I might send around a really short update about the MRI and EGD next week, but otherwise, I don't think there will be much news to send until I get "THE CALL."
Love to all, and as always, be careful out there, or a part of you may become a part of me!
Foie Gras
For the newbies, welcome to the update list! Every time I have news to share, I take a soap opera title and mess with it to make an appropriate subject line. Past favorites include: As the Stomach Churns, Gliding Livers, All My Adenomas, etc. I'm not sure that it's on anymore, but today's title is a play on "Passions."
Moving on...so next up for me is my umpteenth MRI, which is scheduled for Tuesday the 9th at 4:00PM (John - this got changed from 7:45PM as I was writing this, so that means you need to pick up the kids that day!) There are two reasons for the MRI. First, they were concerned about some of my bloodwork and they want to make sure that they're not missing anything other than the obvious. Second, and this is really funny, they couldn't open/read the CD that USU sent of my MRI from early September. Seriously? Seriously? Lame! Gee, I wonder why health care costs are out of control?!?!?!
Two days later, on Thursday the 11th, I am having an EGD at USU. (EGD stands for esophagogastroduodenoscopy...I'm thinking EGAD would have been a better shortening of a word THAT long.) Anyway, Dr New Hepatologist (the XYZ hepatologist) wants Dr. Awesome Hepatologist (my USU hepatologist) to do an EGD on me to screen for dilated veins in the food pipe. It's a simple 15 minute procedure but I am required to be sedated. The scope goes down my mouth and into my stomach. Wheeeeee!
XYZ wants me to quit my Marinol, so I am trying a new drug (new to me) for nausea called Phenergan. I took Zofran previously, but it did nothing for me. We'll see how this new one goes. I've only had one pill thusfar and thusfar, I am not impressed, but I'll give it 'til Monday.
So once I have the MRI, they will list me. I wish there were such a job as part-time or full-time patient, cuz I think I'd do very well. Can you guys seriously imagine what my employer would say about all this if I actually had a job? Crazy...
I might send around a really short update about the MRI and EGD next week, but otherwise, I don't think there will be much news to send until I get "THE CALL."
Love to all, and as always, be careful out there, or a part of you may become a part of me!
Foie Gras
Tuesday, October 26, 2010
October 26, 2010 - General Hospital
Yesterday, John, Auntie Em and I had nothing better to do, so we spent the day at XYZ. We met with the Transplant Coordinator, Hepatologist, Surgeon, Financial Coordinator, Nutritionist and Social Worker. At USU, we had to run all over the place to meet with these people. At XYZ, we just stayed in the same (tiny) room and they came to us. That was nice, except for the small, hot room. The process was much like the process at USU...meeting with people, asking questions, etc. They wanted me to update some of my tests from USU so they did chest CT scan and...a new personal best - 20 VIALS OF BLOOD! The good news is that I drain quickly, so it didn't take too long.
XYZ has the highest one-year survival rate in the country for liver transplants, so clearly everyone is smart and competent, which is comforting. I prefer the personalities of my docs at USU, but ultimately, that's not what matters...it's the quality of the care, and that's where XYZ shines.
A panel consisting of the folks listed above will convene on Wednesday next week to decide whether to list me (which is almost certain) and to figure out my MELD score, which determines my placement on the list. Based on what is likely, and based on current projections, I may just have the surgery by the end of the year, and perhaps even sooner. I'm personally hoping for early December so by the time I am released from the hospital, I can be home over the Xmas break. As before, we'll see what happens.
Healthwise, I have good days and bad. Most days, I'm pretty fatigued. I'm itchy all over from the elevated bilirubin. My eyes are tinged with yellow and there is a slight yellow cast to my skin. I'm trying to adapt my wardrobe and makeup, accordingly. :)
I'll likely get an update next Thursday after the panel meets, so I'll send around another e-mail to ya'all at that time. Until then, be careful out there or a part of you may become a part of me!
Love,
Foie Gras
XYZ has the highest one-year survival rate in the country for liver transplants, so clearly everyone is smart and competent, which is comforting. I prefer the personalities of my docs at USU, but ultimately, that's not what matters...it's the quality of the care, and that's where XYZ shines.
A panel consisting of the folks listed above will convene on Wednesday next week to decide whether to list me (which is almost certain) and to figure out my MELD score, which determines my placement on the list. Based on what is likely, and based on current projections, I may just have the surgery by the end of the year, and perhaps even sooner. I'm personally hoping for early December so by the time I am released from the hospital, I can be home over the Xmas break. As before, we'll see what happens.
Healthwise, I have good days and bad. Most days, I'm pretty fatigued. I'm itchy all over from the elevated bilirubin. My eyes are tinged with yellow and there is a slight yellow cast to my skin. I'm trying to adapt my wardrobe and makeup, accordingly. :)
I'll likely get an update next Thursday after the panel meets, so I'll send around another e-mail to ya'all at that time. Until then, be careful out there or a part of you may become a part of me!
Love,
Foie Gras
Friday, September 3, 2010
September 3, 2010 - Gliding Livers
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
Tuesday, July 20, 2010
July 20, 2010 - All My Adenomas
I spent a weekend at USU in June when I had some pain similar to the pain I had when I had a bleeding adenoma when I was pregnant. They ran some tests, including another MRI and didn't see anything. I did meet someone who is now a great friend, Leah. She was in the ER right next to me and we had THE BEST TIME. Seriously....we got along really well and we cracked each other up and we spent as much of the weekend together as we could. In July, I went back to USU with a similar problem. This time, though, I refused to be admitted, but I told my docs I would take any tests they wanted me to take, so long as I could stay on the "outpatient" side of things. I ran into Leah again, when she had an appointment the same day, so we had lunch together.
So I called Dr. Awesome Transplant Surgeon today and he told me that I was at the top of the "AB" list for Springfield and Smithville. He also said that I was likely the top candidate for 5 states and that they had had "offers" for livers, but none that are suitable for me. He wants to wait for the "perfect" organ since I have time to wait. He estimated another 1-2 months for the transplant to take place.
So I called Dr. Awesome Transplant Surgeon today and he told me that I was at the top of the "AB" list for Springfield and Smithville. He also said that I was likely the top candidate for 5 states and that they had had "offers" for livers, but none that are suitable for me. He wants to wait for the "perfect" organ since I have time to wait. He estimated another 1-2 months for the transplant to take place.
Be careful out there or a part of you may become a part of me! LOL! That's all for now!
Foie GrasFriday, April 30, 2010
April 30, 2010 - Days of Our Livers
Hi all,
I have a quick update for you all, or "all ya'all" as they apparently say way down south. First, I am now officially on the transplant list as of April 21. My MELD score going in (on?) was only 7, which is a score that almost any one of you would get based on the 3 blood tests that get you onto the UNOS transplant list. Because of the other factors, e.g., risk of adenoma rupture, risk of malignancy, etc., my surgeon lobbied UNOS to elevate my score so I wouldn't be at the bottom of the list, so to speak. I found out today (yesterday) that he was successful, and my MELD score is now 22. If you're really curious and/or bored, you can read more about all of this on http://www.unos.org/.
I have to give credit to my Auntie Em for the second thing. She wondered if this embolization procedure that I was scheduled to do tomorrow (later today, actually) was truly needed. After playing phone tag with Dr. Awesome Transplant Surgeon, he said that it was up to me, but he agreed with Auntie Em that it was not necessary to have the procedure done. He feels confident that a liver will become available within the next 2 months based on their past patients. He said that if I didn't accept the first liver offered to me, I would likely receive another offer about 2 months later. I have to say, that if I have to go through this (which I basically do, since the other options lead to a much more undesirable demise) it's nice to have the flexibility and be able to more or less choose the most convenient time for all those affected. Thank you again, Auntie Em!
So far, the humor and denial have continued to work well for me, but I admit that when I hung up with the doc, I had an "omg" moment of reality when I realized that this was truly going to happen sooner rather than later.
Lastly, in case you're wondering, I'm not normally awake at this hour, but I woke up around 3:00AM and couldn't get back to sleep so I figured I'd update ya'all until I felt sleepy again. Unfortunately, I'm still rather awake.
Love to all, and to all a good night (morning),
Foie Gras
I have a quick update for you all, or "all ya'all" as they apparently say way down south. First, I am now officially on the transplant list as of April 21. My MELD score going in (on?) was only 7, which is a score that almost any one of you would get based on the 3 blood tests that get you onto the UNOS transplant list. Because of the other factors, e.g., risk of adenoma rupture, risk of malignancy, etc., my surgeon lobbied UNOS to elevate my score so I wouldn't be at the bottom of the list, so to speak. I found out today (yesterday) that he was successful, and my MELD score is now 22. If you're really curious and/or bored, you can read more about all of this on http://www.unos.org/.
I have to give credit to my Auntie Em for the second thing. She wondered if this embolization procedure that I was scheduled to do tomorrow (later today, actually) was truly needed. After playing phone tag with Dr. Awesome Transplant Surgeon, he said that it was up to me, but he agreed with Auntie Em that it was not necessary to have the procedure done. He feels confident that a liver will become available within the next 2 months based on their past patients. He said that if I didn't accept the first liver offered to me, I would likely receive another offer about 2 months later. I have to say, that if I have to go through this (which I basically do, since the other options lead to a much more undesirable demise) it's nice to have the flexibility and be able to more or less choose the most convenient time for all those affected. Thank you again, Auntie Em!
So far, the humor and denial have continued to work well for me, but I admit that when I hung up with the doc, I had an "omg" moment of reality when I realized that this was truly going to happen sooner rather than later.
Lastly, in case you're wondering, I'm not normally awake at this hour, but I woke up around 3:00AM and couldn't get back to sleep so I figured I'd update ya'all until I felt sleepy again. Unfortunately, I'm still rather awake.
Love to all, and to all a good night (morning),
Foie Gras
Wednesday, April 14, 2010
April 14, 2010 - As the Stomach Churns
Hi all,
As you know, we left you with a cliffhanger on the last episode of "As the Stomach Churns." Would Dr. Emboloziation Doc be able to help Foie Gras? Would the insurance company cover what might be a radical procedure? Would the drama ever end? Would Foie Gras lose her insane sense of humor? Well read on, my patient and devoted readers, and get those well-deserved answers.
I had my MRI yesterday and met with Dr. Embolization Doc. The MRI showed that not much has changed since my MRI in December, meaning that the adenomas have not grown or shrunk. This is not a big surprise.
Dr. Embolization Doc told me that he has used the embolization technique on adenomas in the past with success. See more on the process here: http://en.wikipedia.org/wiki/Embolization (It's not a very good article/description, but it provides enough info to get the gist of it). It's done in about an hour under a twilight sedation. I'll be kept overnight just for observation and pain management, although he doesn't expect me to have much pain from this procedure. This will be used on my 3 big (larger than 5cm) adenomas. If the treatment is successful, meaning the adenomas "die," then my chances for developing any cancerous tumors will decrease, since the ones that are larger than 5cm are the ones that have a bigger chance of heading that direction. This is by no means a replacement for the liver transplant. That will still happen, perhaps some time this summer subject to availability. It's just something to do in the interim to lessen my chances for malignancy. Dr. Embolization Doc said that we can repeat the procedure if we find that we have had some success, but not total success. He said that if for some reason I found the procedure to be so painful that I wouldn't want to do it again, that would be fine too - no harm, no foul. Something tells me that I've already experienced more pain in my lifetime at one time or another, so I don't think this procedure will be that bad.
I am scheduled to do this on April 30th around noon. I asked him about whether insurance would cover it and he said that occasionally his P.A. or he himself has had to argue with the insurance companies, but they have always gotten them to agree to pay.
That's all for now. Oh, and I still have my sick/insane sense of humor. I don't think any surgical procedure could take that away from me. :)
Love,
Foie Gras
As you know, we left you with a cliffhanger on the last episode of "As the Stomach Churns." Would Dr. Emboloziation Doc be able to help Foie Gras? Would the insurance company cover what might be a radical procedure? Would the drama ever end? Would Foie Gras lose her insane sense of humor? Well read on, my patient and devoted readers, and get those well-deserved answers.
I had my MRI yesterday and met with Dr. Embolization Doc. The MRI showed that not much has changed since my MRI in December, meaning that the adenomas have not grown or shrunk. This is not a big surprise.
Dr. Embolization Doc told me that he has used the embolization technique on adenomas in the past with success. See more on the process here: http://en.wikipedia.org/wiki/Embolization (It's not a very good article/description, but it provides enough info to get the gist of it). It's done in about an hour under a twilight sedation. I'll be kept overnight just for observation and pain management, although he doesn't expect me to have much pain from this procedure. This will be used on my 3 big (larger than 5cm) adenomas. If the treatment is successful, meaning the adenomas "die," then my chances for developing any cancerous tumors will decrease, since the ones that are larger than 5cm are the ones that have a bigger chance of heading that direction. This is by no means a replacement for the liver transplant. That will still happen, perhaps some time this summer subject to availability. It's just something to do in the interim to lessen my chances for malignancy. Dr. Embolization Doc said that we can repeat the procedure if we find that we have had some success, but not total success. He said that if for some reason I found the procedure to be so painful that I wouldn't want to do it again, that would be fine too - no harm, no foul. Something tells me that I've already experienced more pain in my lifetime at one time or another, so I don't think this procedure will be that bad.
I am scheduled to do this on April 30th around noon. I asked him about whether insurance would cover it and he said that occasionally his P.A. or he himself has had to argue with the insurance companies, but they have always gotten them to agree to pay.
That's all for now. Oh, and I still have my sick/insane sense of humor. I don't think any surgical procedure could take that away from me. :)
Love,
Foie Gras
Tuesday, March 30, 2010
March 30, 2010 - Update on...ME!
Hi all,
So it's been a while and it's high time I sent around an update about stuff. I'm sure many of you are perhaps wondering what's up with the whole liver thing. First, let me apologize if I have not previously let you in on what's going on with me. Okay...moving on...I had two full days at USU doing countless tests and meeting with a Psychologist, memory tester, surgeon, nurse, social worker, etc., etc. etc. They took 13...yes...13 vials of blood from me! I'm thinking they should have just asked for a whole pint at that point. I still have an MRI to complete. Anyway, I'm not going to bore you with details, but rather, I'll just sum everything up and try to anticipate any questions you may have. The surgeon, the young Dr. Awesome Transplant Surgeon (he's 40) was very nice, very honest, and very direct. He basically told me that I have 3 options. The first is to try something called TASE or TACE or something like that. Anyway, they use one of your arteries to deliver chemo embolization to a tumor. This method is traditionally used for liver cancer patients to more or less "collapse" the tumor. I am going to meet with the USU doc(s) who specialize in this sort of thing to see if this could work on my big adenomas and then we would just monitor the little ones. I don't have much hope for this method since it isn't really used for adenomas in the first place and in the second place, that means insurance likely wouldn't cover something like that.
So it's been a while and it's high time I sent around an update about stuff. I'm sure many of you are perhaps wondering what's up with the whole liver thing. First, let me apologize if I have not previously let you in on what's going on with me. Okay...moving on...I had two full days at USU doing countless tests and meeting with a Psychologist, memory tester, surgeon, nurse, social worker, etc., etc. etc. They took 13...yes...13 vials of blood from me! I'm thinking they should have just asked for a whole pint at that point. I still have an MRI to complete. Anyway, I'm not going to bore you with details, but rather, I'll just sum everything up and try to anticipate any questions you may have. The surgeon, the young Dr. Awesome Transplant Surgeon (he's 40) was very nice, very honest, and very direct. He basically told me that I have 3 options. The first is to try something called TASE or TACE or something like that. Anyway, they use one of your arteries to deliver chemo embolization to a tumor. This method is traditionally used for liver cancer patients to more or less "collapse" the tumor. I am going to meet with the USU doc(s) who specialize in this sort of thing to see if this could work on my big adenomas and then we would just monitor the little ones. I don't have much hope for this method since it isn't really used for adenomas in the first place and in the second place, that means insurance likely wouldn't cover something like that.
The second option is to do nothing and monitor me via MRIs, which is pretty much what we've been doing for the past few years. The down side there is that these things could continue to grow (which leads to further risk of cancer and of course, rupture). The doctor also feels that this option is delaying the inevitable, as he feels that sooner or later, a malignancy will occur, and if the cancer were to spread beyond my liver, a transplant would not help me.
The third option is of course, transplant. This is what Dr. Awesome Transplant Surgeon has recommended, and he feels that I should view it as a preemptive operation, in much the same way as a woman has a single or double mastectomy after having cancer or because she is afraid of getting breast cancer due to family history or genetic markers, etc. We asked the doc about timing (I had been thinking that perhaps next summer would be the target) but much to our surprise, he has recommended that I do this in the coming months. Obviously, I can't pick and choose exactly when this happens, as an organ must become available, but as suspected, I have a great blood type to work with....I'll be on the AB list, as well as the A list and B list. He said that even though I likely wouldn't be placed all that high on the transplant list, I would likely get offered the first AB organ to come around since it's a rare type and there aren't many takers. Sadly, he said that many of these organs are thrown away, so I'm a very lucky girl, indeed.
I have been more or less able to keep this whole situation at arm's length. As previously mentioned, humor and denial have been excellent coping mechanisms. BUT, the notion that this could happen sooner rather than later is certainly putting a few cracks in my carefullly constructed wall. It's especially difficult to swallow because other than a few annoying problems, my overall health is pretty good.
On the other side of the operation is: about 2 weeks in the hospital; about 6-8 weeks of recovery time (during which time I cannot drive or lift more than 10 lbs); having my immune system suppressed so as not to reject my new liver (and trying to avoid getting sick due to vectors 1 and 2, aka Child 1 and Child 2); a lifetime of drugs (which will decrease over time) but which will cost my insurance company approx. $25K the first 1-4 years; and, if all goes well, a new and improved me with more energy and a new lease on life.
Okay, so this was at least twice as long as I intended, so I'd better stop here. If I have any other news to share, don't worry, I will, and I promise to keep it more towards the short and sweet side of things.
Love to all,
Foie Gras
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