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
