Since I last posted quite a few things have happened. At the end of September I had my MRI to check on the Hepatic Adenoma. The result of this test confirming an Adenoma would lead us into a surgery discussion. My doctor called me with my results the first week of October and told me the radiologist looked at the MRI and said the tumor or lesion was a Hemangioma which is an abnormal build-up of blood vessels in the skin or internal organs. We would do another MRI in a year to check on it. The good news with this diagnosis is that I wouldn't need surgery-Hemangiomas aren't dangerous unless they are very large and/or in an area where they could potentially rupture due to trauma to the body. My doctor said mine is in an area where the only possible way it could rupture is if I was in a major accident, and mostly likely I had have a whole series of other issues at that point. Thanks, I guess? So, here's the bad news...I didn't believe him. I called him to question this diagnosis. He had a little trouble understanding how I wasn't relieved to not need surgery-if this was truly a Hemangioma I was. My question/concern is that in the hospital last November the reviewing radiologist said it was a benign Adenoma. Then in May after my MRI the reviewing radiologist said it was possibly a malignant Adenoma. Then after the follow up CT-guided biopsy in June the reviewing radiologist said it was a benign Adenoma. So, now radiologist #4 comes up with something completely different. I didn't buy it. I wanted more information/more proof. To ease my fears my Doctor ordered a Red Blood Cell Nuclear Scan. I would be injected with a tracer and then have 2 sets of images taken. Red blood cells would be tagged, and would light up on the test confirming a Hemangioma. This test was scheduled for October 20th.
I started having some pain in my heart and saw my Primary care doctor who did an EKG and said it looked like I possibly had Pericarditis which is inflammation of the pericardium-the sac around the heart. I had to have a heart ultrasound and another EKG...They both came back normal so the doctor and cardiologist had me try Prilosec. I knew I didn't have heartburn, but I guess that thought maybe it was Gerd? Not sure, but I suck at taking that medicine! You have to take it 30 minutes before you eat and apparently I'm not good at remembering that!! At this point the pain has gone away so I'm just happy I can start working out again!
In the meantime I had a GI clinic appointment with Doctor M. My husband came with me because there was going to be a lot of questions I had, and I wanted him there. The best thing to come out of that appointment is that I got taken off Prednisone-HOORAY!!!!!! I almost kissed the doc, but I didn't think my hubby would approve! This medicine has been awful-I've gained a lot of weight, and I'm hungry all the time. My skin is worse than normal, I'm weepy, unhappy and just overall don't feel good on that medicine. I was put back on Entocort which is a different steroid, but with way less side effects. I'm still also on Azathioprine. What we discussed in the appointment is that I will be on Azathioprine for a long time, and probably for life-Over time we will hope to decrease the amount I take as much as possible since this is an immuno-suppressant. I'm back up to once a week blood tests since I had a medicine switch-One of the tests checks the therapeutic levels and the dangerous levels of the Azathioprine. Last week Doctor M. called and said there was room for improvement on the therapeutic levels so we increased the dosage. This is opposite of what we want, but I know it's temporary. The other great news is I can drink Non-Alcoholic beer and wine (blech) but the beer....Oh yummy!! I know it's not as good as the real stuff, but there are more options and some aren't bad. A beer flavored beverage after 11 months of nothing was very delicious to me!
I had the Nuclear scan on the 20th-it took a total of about 4 hours. I had an IV providing the tracer while I laid on table and a rotating camera took pics. When my Doctor called with the results I was not at all surprised to hear him say it wasn't a Hemangioma, and it is in fact an Adenoma. I LOVE being right, but wouldn't have minded being wrong in this case. So, the next step was for him to send a request to the surgeons to review my scans and figure out what we should do-The risks vs. benefits of surgery. In all the research I've done I've seen that because Adenomas are most likely estrogen driven that they should removed prior to pregnancy. I got a call from the surgery clinic in Walnut Creek and I was a little shocked to hear them say I could have an appointment with the surgeon for an evaluation/discussion next week!! I was expecting maybe December so I was a little surprised to hear it was so soon. This makes it all a little real, not that there is any guarantee I'll be having surgery soon due to the health of my liver, or what kind-Most likely it will involve a liver resection, but that will be discussed next week. My hubby will be taking the day off to come with me to Walnut Creek. It sucks that if I have surgery it will be there, but as long as they are the best I'm cool with that!!
So, until next week things are kind of up in the air again, but my liver function tests are going down to where they should be-Almost in normal range, and I'm happily off Prednisone now, and we finally went back to the gym today. Feeling better than I have in a while!!