For many months now, my Mom and Dad would head to Rochester for various tests and appointments for my Dad. Often they would be over there for 2-3 days at a time, staying in Rochester instead of driving back and forth. They would tell us about all the different appointments on different floors or different buildings - like the one blood test that couldn't be done in the same place as the other blood test he just finished - the spots they would find to sit in between appointments and listen to someone play piano, or send us pictures of the different restaurants they would eat at.
It always sounded like a lot and a bit of a nuisance. But I truly had no idea until I was in the exact same situation myself. But I'm getting ahead of myself... let's back up.
The first step to becoming a living donor is to fill out the living donor form. Simple enough. Answer some questions about myself, my health, medical history. There are very specific requirements to even be considered as a donor. You must be between the ages of 18 and 60, your BMI must be under 30, you must be in good health, you must have good/stable mental health. In addition to that, there are other things to consider such as do you have the capability to take a month or longer off from work? Would you need financial assistance for lost wages? Do you have someone to be available as a caretaker after the surgery and during your recovery?
Once I passed that step, I had a phone call interview with a Nurse Coordinator from Mayo. They explained more about what a living donation looks like as a potential donor and asked some more questions. I learned a few more things like that this surgery would take 3-4 hours, I would spend one night in the ICU then a few more days in the hospital before getting discharged. Then I would need to stay in Rochester for a couple more days for a few more follow up appointments. Those follow up appointments would continue over the next two years to make sure my liver was still functioning properly. I wouldn't be able to drive for a while and I would have a lifting restriction for up to 8 weeks. When none of this scared me away, I was told I qualified for the next step which would be to come in for a variety of tests and appointments.
At this point, I waited to give my sister and brother a chance to get through the application and phone interview process as well. We had decided that even if we all qualify for the actual tests, only one of us would go through that process at a time to see if we were a match. So if I went through the process and wasn't a match, then Meg would do the tests.
We got the appointments and tests scheduled and I was told I'll be in Rochester for three days. Over those three days I would have a lot of different tests to make sure I was healthy, had no underlying conditions and see if I could be a match. Being a match meant more than just having the same blood type and being healthy. A donor often needs to be of similar size of the recipient so that the liver volume will be close to the same. This looks at not only the overall liver size, but also the size of the vessels and such. This is often why people aren't able to match - the livers aren't close enough in size and volume.
Here's an interesting fact. A person can donate up to 69.9% of their liver to someone. During a liver donation, they will either take the right lobe or the left lobe. So if one lobe makes up 73% of the total liver mass, then that person can't donate because it's above that 69%.
Soon my Mayo patient portal was filled with messages and appointments. I also received my appointment package in the mail - which was *several* pages long. It detailed each of my appointments - where, when and with who - and also told me what I needed to do to prepare for each test or appointment. I'm not going to lie... it was a bit overwhelming! I definitely set reminders in my phone like "no more food" or "stop drinking anything".
Meg and I had talked and decided that she would come with me to most of the appointments. If I was a match, Meg would most likely be my caretaker, while my Mom would take care of my Dad. My Mom also mentioned how nice it was to have someone else at the appointments because they throw a lot of information at you and it's good to have a second set of ears. And this was 100% true. Meg was my note-taker and I was grateful to have those notes to go back and review after leaving Rochester.
So, what did I do while in Rochester? Well, let me tell you. I had appointments to meet with a Nurse Coordinator, a living donor advocate and a social worker. I had an appointment with a doctor for a general check in, along with the surgeon. I had to do a urine and blood test. The blood test included a total of 26 vials of blood. I learned that this did not beat my dad's overall record of number of vials drawn at once. :) One of the blood tests had to be done by a different technician and in in a different room. So I had one blood draw for 25 vials and then I had to walk across the room to another station and get poked again for one more vial. Super fun. I had an x-ray and an MRI. The MRI took over an hour; I was told it was one of their longest imaging sessions. Also super fun. I also had a CT scan, an ECHO test and an ECG test.
Now I had a better understanding of what my Dad has to do every time he visits Rochester. It is a lot.
One thing about Mayo is that they're really great about putting your test results into your patient portal. This can be both good and bad. But it was definitely interesting to see the results of everything. I also learned a few things!
1. I still have the antibodies in my body from when I had mono as a junior in high school.
2. I have gallstones. Which apparently a lot of people do and they might never cause me any problems or they might cause some really intense pain down the road. However, if I end up donating my right lobe, they would remove my gallbladder as well, thus saving me from potential pain and suffering.
3. I also learned I have a trifurcation of my main portal vein going into my liver. Most people's vein will split into two - one for each lobe. However, my vein splits into three going into the liver. This doesn't mean anything is wrong or would cause me from not donating, just a unique aspect of my liver.
I also had one last visit with the Doctor before leaving town who told me that as a potential liver donor, I'm "as good as they get". I was healthy with no underlying conditions. The only thing they were still waiting on was the volume and mass of my liver to see how it compared to my dad's. So I left Rochester knowing that I was a potential match and once those last tests came back, if they were good, I would be recommended to the committee to be a donor.
The following week, I got the official phone call that I was a match for my dad.
Then it was time for making an actual decision. Up until this point, I had been very deliberate about not getting ahead of myself and not thinking about what being a donor would actually look like and mean until I knew I was a match.
What goes into make that type of decision? A lot. But we'll talk about that in the next post.
