READ THIS FIRST - Why didn't I do this sooner?

A very good question, with no good answer, I'm afraid. I tend to get interested in making changes when I have a birthday. I joined FB on my 40th birthday and I am creating this blog the day after my 42nd birthday. I'm doing this primarily for two reasons: first and foremost, to keep my dear friends and family updated on my condition, and second, to perhaps help other women in this situation. I searched and searched for women and data on my condition, and found it to be severely lacking. I was told about support groups, but at the time, I kept thinking that my situation was different from, say, a person who developed cirrhosis from drinking and I thought that I'd have a hard time relating to someone with that history.

I put this fake future date on this entry so that it would appear first when you find this site. That way, you can get the history on my story and then catch up to current day happenings.

Okay, moving right along...I have no idea who will be following this blog, but in case there are women out there who feel like they're the only ones, you are definitely not alone. Sadly, I think our numbers are growing. I have changed the names of pertinent people and locations to protect the innocent and guilty. If you are someone who is in a similar situation and you want to communicate further, please feel free to contact me through this blog and I would be happy to IM, e-mail, Skype or even use that ancient telephone technology to connect with you.

Here is my story:

In January of 2005, I decided to have a physical for the first time in a very long time. I went to visit my PCP, and was seen by a Dr. Nice Guy. Most of my tests came back fine, but one that was concerning was a liver function study test. We retested and came back with a similar result. He then asked me to have an ultrasound done, where it was determined that my liver was enlarged. This led to a CT scan and an MRI and finally, a biopsy. Dr. Nice Guy referred me to Dr. Liver Surgeon at the University of America (UA) in Springfield for continued care. Dr. Liver Surgeon reviewed my tests and concluded that I had a grapefruit-sized tumor on my liver. From the radiology reports and the biopsy, it was determined that the tumor was likely an adenoma, which is not cancerous but serious in that it had to be surgically removed. Dr. Liver Surgeon told me that due to the size and location of my adenoma, he would need to remove my gall bladder and approximately 30-40% of my liver. I told him that I wanted to get a second opinion. He provided me with the name of a doctor at US University (USU) . He agreed with Dr. Liver Surgeon's assessment. On May 18, 2005, I underwent surgery. During the surgery, Dr. Liver Surgeon noted the presence of several (as in 9 or 10) 1-3 mm sized adenomata during the surgery. He biopsied one of them and the results were consistent with hepatic adenomas. We asked Dr. Liver Surgeon about trying to have another child. He said that we should wait at least one year and that if I became pregnant again, we would have to watch me closely. As it turned out, this was bad, bad advice. He should have said, "Do not under any circumstances get pregnant."

In December 2006, I met with Dr. Liver Surgeon for my 6 month post-op visit. I told him that I had become pregnant in June 2006, but miscarried in August 2006. I also told him that I was pregnant again at the time of my 6 month post-op visit, although I later miscarried on December 10, 2006, after I met with him. He asked whether I had had a baseline ultrasound of my liver and I told him that I had not realized that I was supposed to have it done prior to my appointment. I had the ultrasound of my liver later that month, on December 27, 2006.

I became pregnant again in April 2007, and had a D&C in June 2007 when it was determined that the pregnancy was not viable. I became pregnant again on December 31, 2007 (yep - okay, well I suppose it could have been January 1, 2008) and contacted Dr. Liver Surgeon in March 2008, when we were reasonably certain that I had a viable pregnancy. Dr. Liver Surgeon ordered an ultrasound of my liver which was performed on March 31, 2008. The report noted that the adenomas had indeed grown. I then had an open MRI performed on April 11, 2008. On June 10, 2008, I was admitted to UA with abdominal pain. It was determined after an MRI that I had internal bleeding which was likely due to a rupture in one of the adenomas. I was in the hospital for 5 days. At this time, I was 25 weeks pregnant. I was put under the care of Dr. Big Dude, Chief of Obstetrics at UA. Dr. Liver Surgeon's opinion was that I should deliver the baby at the time of viability. Dr. Big Dude reviewed the various stages of viability with us and explained that the goal would ideally be 35 weeks. My sister-in-law, Sheila, found an article that discussed hepatic adenomas and pregnancy. I forwarded the article to Dr. Liver Surgeon, and noted my fears. Dr. Liver Surgeon said that "He would rather not have had me in this spot," (meaning pregnant). I responded, "After my last surgery, it was not made clear to us that we would be taking a severe risk by getting pregnant again. If you had said, "Do not get pregnant again," one of us would have been sterilized. What you had said to us was "You should wait at least a year before trying to get pregnant again. If you do become pregnant again, we will need to closely monitor you." That was what we went on. Believe me, I would have shut down the baby factory if you had advised us to do so." He did not respond to this e-mail. Dr. Big Dude explained that after delivering the baby, my estrogen levels would drop off over a 12 week period and that I should have another MRI at that time to see whether and how much the adenomas had shrunk. Dr. Liver Surgeon asked one of his residents to come visit me on my day of discharge and she explained that he wanted me to have an MRI 6 weeks post-partum. I explained what Dr. Big Dude had told me and that with all due respect, I thought it made more sense to wait for the 12 weeks to pass. After having the baby at 33 1/2 weeks, I had terrible edema in my feet/ankles/legs, very high blood pressure, and migraine headaches. All of these problems eventually disappeared, although I still have a bit of edema in my left foot/ankle. I had the MRI on October 3, 2008, 8 weeks post-partum. I was supposed to meet with Dr. Liver Surgeon that day to discuss the results and determine a plan for the future. He was way behind on his appointments that day, and I ended up seeing one of his residents for about 5 minutes and she told me that he would call me with the results.

Moving right along...I had an MRI done on my liver in December 2009. It was unexpected, but those pesky adenomas had shrunk after the birth of my child and then, they decided to grow again. This was most unexpected since they started to shrink after Child 2 was born, so there is some question as to what was feeding them since my estrogen levels had dropped since the birth. A panel of doctors decided that I needed a liver transplant and I was scheduled to meet with the transplant team in December. I said, "Hold on....wait a minute...this is pretty drastic." I booked an appointment to meet with a Dr. Smart Guy, a hepatologist, at USU. I met with Dr. Smart Guy in February 2010.

Dr. Smart Guy wanted a CD with my last 2 MRIs and new bloodwork. He said that on Wednesdays, a multidisciplinary team gets together to discuss nothing but liver tumors. I thought that was pretty amazing. He also said that they have a radiologist on staff who does nothing but livers, and in the 10 years he has worked with him, the radiologist has never been wrong about his interpretations and impressions, so that was encouraging. I was amazed by this, as well. Imagine looking at nothing but livers all day.

So I was told that if we continued to do nothing more than monitor these things, there was a 10-20% chance that one or more of these masses could become malignant. Moreover, there was a risk that an adenoma could rupture, or compromise healthy liver tissue, or negatively impact my liver functions. If they went forward with resecting (surgically removing) the 5 larger adenomas, then my chances for a successful liver transplant down the road would drop due to the build up of scar tissue. If I had a liver transplant, I'd have a 30% chance of dying witinh 5 years, because 70% is the typical survival rate for liver transplant recipients after that long. Nothing is ever easy, is it?

My only real "problem" at that time was fatigue. Little did I know how much more fun was to come.

Please proceed now to my entry dated March 30, 2010 so you stay in the proper time order.  The updates will basically be cut and paste jobs from my e-mail to my family and friends that were sent prior to creating this blog. From December 2010, I will of course, blog.

May 20, 2012 Has it Really Been Over a Year Since I Last Blogged???

And what's wrong with you people??  You should have come after me saying, "What the heck???  Are you EVER going to give us another update???"  I apologize.  I suppose I did such things on Facebook, but in case there are others out there who have the same medical problems, I really should keep this up.  Rather than give you the ups and downs since last April, I'll give you the current stuff.  I am now down to taking just Tacrolimus, an anti-rejection drug....two pills, two times a day.  I take a few others, but none are truly necessary.  No sign of any cancer in my body. I have put weight back on...some much needed, and quite a bit NOT appreciated, so I'm trying to work out a game plan for that.  I'm very nearly employed in a real full-time job, just waiting for the offer that is supposed to come in mid-June.  I'm still seeing Dr. Awesome Hepatologist.  (He now has the nickname of Dr. Wonderful and everyone knows it, including him.)  And, I can't really think of anything else to say at this point, except living without my medical drama has been absolutely fantastic!  Cheers!

Aprile 23, 2011 Chemo Kinda Sucks...

Well no big surprise there, right? I started the chemo on Sunday the 17th, so today is Day 12. The first 3 days were okay...no real problems...a little nausea, no big deal. Wednesday night, things started to go a bit downhill. I went to bed and my skin felt quite warm to the touch while I felt like I had chills (just like when you have a sunburn). Thursday was not a good day. I met with my PA and was doing okay. I spent the rest of the day on my feet and by the end of the day, my feet were on fire! I literally wanted to jam them in some ice. That was the hand/foot reaction they warned me about. I called the NexConnect support line (offered by the people who make the Nexavar poison, I mean chemo) and talked about the problems I was having. They told me to soak my feet in Epsom salts try this, try that and to be sure to call my doc to see about stopping for a few days until my symptoms eased. I did call the next day and they cut my dose in half. Since then, the symptoms have been manageable. I have tingling, pain and/or numbness in my extremities in varying degrees. If I stand for too long (still trying to figure out what too long is) my feet start to hurt, so I'm taking it easy for the most part. I noticed a couple of days ago that individual strands of my hair are falling out again. I'm told that I won't lose it all, but it will thin. Great. I wake up every morning with a stomach ache and nausea, but it usually disappears within a couple of hours. Despite all of this, my appetite has actually increased, although my digestive system isn't completely happy about that. Some fatigue kicked in on Day 8 or so, but not nearly as bad as I was pre-transplant. I have to tell you...it's really difficult to consciously put poison in your body every day, especially when you were feeling really great before you started taking it. I have to say, I'm a little disappointed that XYZ University hasn't followed up with me to see how I'm doing or to talk about trying to increase the dose again or anything like that for the last 7 days.

Oh, and I had an MRI a couple of weeks ago. Everything looked great, and my bloodwork looked great too. I'm thinking I'll be transferring back to Dr. Awesome Hepatologist by July when I'll need to do a lung scan and another MRI. So why do I think he's so awesome? Well many reasons, but here are a few: 1) He randomly sends me e-mails to see how I'm doing; 2) He quickly responds to my e-mails, especially when I have concerns, and he tells it like it is, which I appreciate very much; 3) His bedside manner is second to none; 4) One of my friends, a patient of his, says he routinely asks her how I'm doing. Now THAT'S a great doctor.

April 2, 2011 Current Status and Next Steps

On Thursday, I met with my PA and one of the surgeons. I also talked with my PA again on Friday. It turns out that I misunderstood the previous info about the cancer, due in part to my PA’s lack of knowledge in the area. There is something called the Milan Protocol that is used for transplantation guidance. From what I now (think I) understand, this guidance says that if you have more than two occurrences of cancer, you cannot be transplanted until you meet the guidelines. The guidelines are two occurrences of cancer or less and tumors that are 5 cm or less. In addition, the cancer must not have metastasized. The Protocol was developed to lessen the chances for recurrent cancer in the new organ or even other organs.

Three stains of “random” adenomas were sent to pathology. It was determined that all three stains had cancer. They sent an additional three samples to pathology, and these came back Friday morning. All three of these stains had cancer, as well. This confirms that I had multifocal hepatocellular carcinoma. Apparently, all of the adenomas had presented as adenomas in the MRIs, and there was not enough change in their appearance for a radiologist to have caught the changes. The largest adenoma was 10 cm (about 4.5 inches). So the sum and total of this information is that they absolutely would not have transplanted me because I was way outside the criteria of the Milan Protocol; they would have treated me for the cancer first and then transplanted me…IF and only if I was able to eventually meet the criteria. My PA would not come out and say it, but I was left with the impression that even with treatment, I would not have been able to meet the criteria of the Milan Protocol and I would not have been transplanted. I believe this means that I likely would have died.

This is why it is so important that I live and thrive. I need to show the transplant world that under certain circumstances, transplantation can indeed be a viable treatment option for others like me; others who have cancer that exceeds the Milan Protocol where the cancer is contained and encapsulated with no signs of vascular invasion.

I was told by the surgeon that XYZ did a pilot study with a low-dose, chemotherapy drug called Nexavar used to treat certain types of cancer. After one year, only a handful of patients who took the Nexavar (a pill) for a year had a reoccurrence of cancer; whereas 75% of patients who didn’t take Nexavar had a reoccurrence of cancer somewhere in the body. XYZ and 12 other transplant centers are now doing a larger study. In the interim, I am of course going to be put on Nexavar for a year. I am told that the side effects are usually minimal, but some of the more common ones are fatigue (great), hair loss (fabulous) and hand and foot disease (peeling of the fingers and toes…no comment). It’s only for a year, so I’ll of course suck it up.

My PA and I still both feel very optimistic since the cancer was contained, and again, there was no evidence of vascular invasion (meaning that there is no evidence that the cancer had a chance to escape and spread). My USU hepatologist feels similarly. I have to go back to XYZ next week to go through a learning process with the Nexavar. The following Thursday, I have to have my quarterly abdominal MRI, followed by a lung scan in June.

My PA took me off of my blood pressure medication (Nefedipine) to see if that helps the edema I’ve been battling for the past month. I will stay off the meds if my pressure stays below 140; otherwise, I have to take Metropolol, a beta blocker. My 90 day mark happens on April 5, which means I get to drop several of the drugs I’m taking, which is great.

I don’t think I have to tell you all that I am SO OVER the drama. Hopefully I won’t have anything new to report other than how well I’m doing on the Nexavar. As always, thank you for all the love, support and prayers.

March 17, 2011 - Overdue Update Complete with New Drama!

First and foremost, I'm doing pretty well. I've gained about 8-9 lbs and look healthy. I'll get a pic up on one of the sites one of these days. I feel pretty well, too, although I'm having a hard time kicking a urinary tract infection. (They warned me that it would take me longer to kick things than a regular person. I guess that makes me irregular. ) :) Yeah, I know. Big news flash.

Now, on to the drama, which takes breaks but never seems to go away. I was grateful that John was with me today because we got some news that was good/bad/lucky/? at the same time. We received some pathology reports that showed there was cancer (stage 1) in three of the adenomas. This is the BAD news. I was told that their protocol is not to transplant someone who has more than 2 areas with cancer, so that makes me extremely LUCKY. That is not to say they wouldn't have moved forward with the transplant; rather, they would have tried to treat me for the cancer before transplanting me. The GOOD news is that the cancer has not metastasized (meaning, that it has not spread) to other organs. They are now going to have a doctor powwow consisting of radiologists, oncologists, and surgeons to determine whether I need to do some form of chemotherapy. This is the "?" part. They are looking into whether the cancerous samples came from the large (5cm>) adenomas or not. If so, they will likely put me on chemo; if one or more came from a small one, they might. My Xmas wish list might have to be a wig this year. I'm already losing hair from my anti-rejection drugs.

So the other outcome from this is that I'm now, once again, a medical guinea pig. Because they would not have normally transplanted me, they are now quite interested in watching my case. So the other GOOD news is that if all ultimately goes well (and there's no reason to think that it won't) I could actually be the case that paves the way for others who are similarly situated who wouldn't have been considered for transplant prior to cancer treatment. I'm really jazzed about that part. I would love to think that all of this could benefit others and that they could avoid unnecessary treatments.

The other BAD news (which isn't really all THAT bad) is that I will now have to have abdominal MRIs every 3 months and lung scans every 6 months. I HATE the MRIs because:

1. They take around 45 minutes.
2. Your arms are pinned to your sides in a "cage."
3. You are asked to lie still and hold your breath for anywhere from 10-30 seconds over and over again, so it's not like you can just lie there listening to the music trying to tune it all out.

Oh well...you gotta do what you've gotta do, right?

So anyway, that's what's going on. I didn't mean to make this so long, but I wanted to convey all the relevant info. I'll keep you posted, but for now, I'm not scheduled to go back 'til March 31.

January 5, 2011 One Liver to Live - The Transplant

My transplant happened on January 5, 2011. The details are posted here:  http://www.caringbridge.org/visit/kspitzer/journal/index/0/0/asc.  Go to journal entries, put them in reverse chronological orders, and then read.  Gory pictures can be found by clicking "Gallery."

December 9, 2010 - The Cold and The Bitchy

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?

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

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

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