Live Donor Update #2

Derek and I drove down to Lahey this morning, and for the first time, the appointments were for me! We arrived early because while I like to pretend that Derek is the weirdo when it comes to being on time (early) for things, I’m in full agreement when it comes to punctuality.

When we arrived, everyone recognized Derek and it was odd to be the one getting my height, weight, and blood pressure measured. We had a little talk with the transplant coordinator and Derek asked if it was ok if he joined me for my meetings. It’s unorthodox for the recipient to join the hopeful donor because the recipient and donor transplant teams are purposely kept separate. This is done for a variety of reasons, but essentially they want to make sure the donor isn’t being coerced into the process and they also want to make sure that the recipient doesn’t try to influence the donor’s decision. Derek stayed with me to watch an informational video and then also joined me when I asked the transplant coordinator all of my questions. Derek was pretty upset when he realized I had been lying about the sex of my liver. It is indeed a girl liver, and he glared at me for a while when he learned the truth. I stand behind my decision to bend the truth. Plus, I was a total tomboy as a kid so who knows, maybe my liver is a tomboy as well.

One question that I had been wondering was: What happens in the empty space where my liver lobe once was? Answer: The rest of my insides shift slightly and take up that extra space. As my liver regenerates, it grows where ever it wants to, (insert cartoon of my liver here with a speech bubble that says: “I do what I want!”) forever changing its shape. I will likely no longer have a triangular shaped liver; I will have a custom liver.

When I met with the surgeon, he kindly asked Derek to leave the office, which we both understood. The surgeon then described in great detail what the surgery would involve and the many potential risks. He took a look at my abdomen and drew a line with his finger to indicate where the incision would be made. What I find remarkable is that this surgery seems pretty crazy to me, but my chances for survival are 99.5%. That percentage varies slightly depending on whether they need to take the left lobe of my liver or my right lobe. Which lobe they end up taking will all be determined once more tests are done and they’ve done a scan of my liver. How much liver will be removed is dependent on Derek and how much liver he needs to be a healthy guy. We discussed the ethical dilemma of a doctor performing major abdominal surgery on a person like me, who doesn’t need the surgery; a physician’s oath after all is to first, do no harm. I was pleased to hear that they all struggle with the process, but that because of the current and frightening state of organ availability, this is a process that they must participate in, and that they do everything in their power to ensure the health and safety of the donor. We also had an amazing and intelligent conversation about religion, which had nothing to do with the transplant, but is anyone really surprised that I would end up having a philosophical conversation about religion with my potential surgeon?

Oh! I almost forgot, this is the really fascinating part. Once they do a full CT scan and an MRI, the images are sent to a facility in Germany where a 3-D rendering is made of my liver.  The doctors use this rendering to determine if it is safe for me to be the donor and to determine how they will dissect my liver. We asked if we could have a copy of the 3D rendering and they said yes! Not to ruin the surprise, but 3D printed (or CNC’d) LOGAN LIVERS FOR EVERYONE!

After meeting with the surgeon, we went to the Department of Psychiatry to meet with my independent social worker. His job is to be my advocate through out this whole process. It is also his job to try and talk me out of being a live donor. Today’s meeting was just to have him explain, again, all of the risks associated with being a living liver donor. Additionally, they have to inform me that during the course of the extensive testing they will perform, they could discover that I have an illness that I was not previously aware of. (That leads me to believe they will discover the misplacement of my knees, but I don’t think that will affect my ability to be the donor.) The social worker had me read the potential risks of the surgery out loud, just to make sure I truly understood what I was agreeing to. He also reiterated that at any time I could change my mind about being the donor. It is not unusual for people to change their mind at some point during the process, and it is important for me to realize that the option to do so is always available. He checked all the boxes on his list, signed off on my chart and said he would see me again soon.

After that meeting I went to the blood lab where a phlebotomist proceeded to take 23 vials worth of my blood for testing. I should be clear, I hate needles. I do not like having my blood drawn. The woman who took my blood was lovely and she worked quickly while telling me hilarious stories from her phlebotomy training. She has been a phlebotomist since she was a senior in High School, and I can vouch for the fact that she is very good at her job. She put me at ease and told me how proud she was of me when she was done. I think what stuck with me the most today was how kind and supportive everyone at Lahey was. I have no doubt that they will make sure, if I am the donor, that I am given the best care possible.

Before we left the hospital today we stopped by the cafeteria and I filled my water bottle with squishy ice. Derek grabbed a cup and filled it with ice and a little water. Derek knows how much I love that silly ice and there were smiles all around as I crunched away on a few of the cubes. It was a stressful morning for me and I was inundated with a lot of information but I feel even more ready to do this than I was before, and I am fully prepared for my CT and MRI bright and early tomorrow. Bring on the squishy ice!

2 Replies to “Live Donor Update #2”

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