I met with a liver transplant surgeon from a very reputable hospital in Chicago earlier this week. A dear friend of mine (a nurse) was sweet enough to come with me for support and for help in asking questions. Anyhow, when we met with the surgeon, he explained that all of the transplant surgeons at this hospital work as a team, using a multidisciplinary approach. They had all reviewed my case prior to his meeting with me, so I felt confident in what he was telling me.
This surgeon confirmed the initial diagnosis of an extremely large hemangioma. I found some comfort in the fact that he said I did not need to have the surgery done immediately, but it should be done very soon. Although rupture is a risk, as long as I am careful (no contact sports, strenuous activity, etc.), I should be ok for a little while. He continued to explain that the hemangioma had completely taken over the entire right lobe of my liver (for those of you unfamiliar with the anatomy of the liver, the majority of it is on the right), and therefore, I would need an invasive surgery to remove the whole right lobe, and possibly part of the left. This would be 60-75% of my liver!…and this was when I started to panic. That’s a whole lot of liver to be taken out. Fortunately, the liver is magical and the only organ in the human body that can regenerate.
The surgeon discussed the risks of liver surgery- because it is a very vascular organ, there are always risks of hemorrhage, and if they are unable to stop the bleeding, it can be fatal. Of course, these docs are top-notch, and that would be an unlikely outcome. It’s still pretty scary to know that is a possibility.
According to this surgeon, they will have to cut the right side of my abdomen under my rib cage and up into my chest a little. Depending on how the surgery goes, they may need to cut the left side, too. So, after all is said and done, I will have a pretty wicked scar…and obviously look super hot in a bikini 😉 Due to the size of the hemangioma, there isn’t the option of a non-invasive surgery.
One of my main concerns is how the Lyme affects this whole liver issue, and how it may play a role in having a major surgery. I also fear the aftermath of the surgery and how my body will be able to heal from it as well as continue to fight the Lyme. The trauma from a major surgery would be putting a ton of additional stress on an already compromised immune system. Also, the last time I had surgery (which was only oral surgery), the Lyme kicked into high gear and sent me on a rapid downward spiral (I did not know I had Lyme then). I am currently looking into the matter of how Lyme might complicate this issue and trying to talk to as many experts as possible, but this is quite the challenge because most doctors don’t have a clue about Lyme…and the ones who do (or think they do) are very polarized on this extremely controversial and misunderstood disease.
I’m trying to keep my head up and get this surgery over with ASAP so I can have my life back (somewhat) and hopefully enjoy a bit of summer. I’m still waiting for a second opinion, which I will have next week. Obviously, I’m hoping for better news, but don’t want to get my hopes too high, either. I guess I’ll just have to wait and see.