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
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