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.
Friday, 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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