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.