So yesterday was my first long day of screening to be Ana’s living donor. Jim and I met with five people – Jennifer, the Financial Coordinator, Stella the RN transplant coordinator, Dr. S – the team Psychiatrist, Marcia, a social worker and Charlotte, the head nurse on the medical floor where I’d ultimately end up before discharge. I also had blood drawn (14 vials!) but that was the only medical procedure I had – all the other medical stuff, including meeting with the surgeon and hepatologist, will occur tomorrow.
We got so much information, I’m finding it impossible to organize and process it into a digestible blog post. The most striking thing about the entire day was how organized Columbia is compared to Westchester. They already had my insurance information in the computer and had linked my file to Ana’s file. Columbia has a centralized and entirely automated medical records system – they assign all patients a number and that number follows you throughout the system (24601!) Ha.
This is so crucial for something as complex as what we’re dealing with. I’m sure it makes the difference between good care, great care, and “oops we took out the wrong kidney” for some patients.
The financial coordinator explained that the hospital does not bill the insurance company for anything involving the screening process. If we do get a bill, I just need to submit it to her and she’ll take care of it. She went over things that the hospital did not cover and should be submitted to the recipient’s insurance company (which, in this case, is my insurance company) and it all seemed pretty straightforward. She told us not to pay anything related to the donor process until we showed it to her and she would make sure it was appropriately submitted to the insurance company (or not – if the hospital covered it). So that was kind of a relief.
The team coordinator, Stella, walked us (and another couple) through the basics of donor surgery and answered some questions (the other couple was a married couple and the man was donating to his wife’s sister – they were from Georgia!) The biggest take away from this conversation was that Dr. Samstein (MY surgeon) has begun using a less invasive procedure to remove the partial lobe of the liver from the donor – it’s done laparoscopically via four entry points as well as via an incision either at the bikini line (like a c-section) or via a vertical incision in the middle of the abdomen. It depends on which lobe they decide to take. The left lobe is smaller, thus the incision is smaller. Stella also told us that it is rare for mothers to donate since we are usually the primary caregivers. It’s almost always fathers. This was shocking to me. She gave us the questionable information that there is less rejection from livers being donated from a mother versus a father – and that some children are even able to go completely off of anti-rejection medication when they get the liver from their mother.
This is not something we have ever heard before and I feel like it would’ve come up if there was any real data behind it. I will definitely ask Dr. Samstein as well as the hepatologist about this. Stella said that only about 50% of people screened end up being qualified to be a living donor – they assess the health of the donor and the likelihood of complications based on this.
Stella also went over the top complications that donors experience and what percent of people get whatever complication – the highest was 18% for a surgical hernia which could require more surgery followed by bile leakage (8 to 10%) which would require a drain be placed to collect the bile and possible further surgery. Yikes.
So, after Stella we briefly met with someone who wanted us to participate in a living liver donor study being conducted at Columbia and funded by the NIH. There is very little data on living donors , so this is definitetly something I will participate in if I’m Ana’s donor.
Jim and I then went across the street and had lunch at a BBQ place near the hospital where he enjoyed this enormous cup of soda.
Our next meeting was with the team psychologist who gave us a lot of information, including a newsletter that Columbia puts out called Liver Connection which is filled with photos of liver transplant recipients and donors. This is when my brain started to short circuit, but not before she showed me photos of four beautiful, healthy young women – all of whom were transplant recipients. One of them was in a wedding dress. At this point I started to cry.
Honestly, the only thing besides that photo of the healthy girls that I recall from that meeting was the advice that the psychiatrist gave me to “keep breathing. take deep breaths.” I hadn’t realized I had stopped breathing during the meeting.
We then went onto our next appointment which was with the social worker. This was a one hour interview – much of it spent on recapping Ana’s sad tale from the beginning (Jim thankfully jumped in and filled her in). She also stressed donor advocacy here and told me that she was not allowed to even look at Ana’s chart so as not to be biased in favor of the recipient. In fact the donor’s team is not allowed to talk to the recipient’s team at all, which lead me to ask the question, “Well, how the hell do you coordinate surgery then?” That happens at the surgeon-level apparently.
The final appointment was with Charlotte, the head RN on the floor where I would be recovering before discharge. She had the most detailed information of all. I probably should’ve met with her FIRST. At this point it was about 4:30 and I was completely fried. Charlotte hammered home the severity of the procedure I’m volunteering for. She stressed that this is a MAJOR surgery – I will not be in any shape to help Ana even though I will want to. She told several stories of donor parents who forced themselves to go visit their child after the procedure, only to regret it afterwards due to the physical pain it caused them (we’ll be recovering in two completely different hospital buildings – though they are connected via a walkway). She reviewed stuff like catheter’s and food and pain medication. She described the bed I’d be in (a bed I know well from Ana’s stay in Westchester). For the first time, she made me realize that if I do this, I will be a patient recovering from major surgery.
She gave us a tour of the floor. I knew it didn’t matter because I’d be out of it and Jim would be with Ana. Which made me realize another thing. I’m not going to have Jim. I’m not going to have Ana. I’m going to be alone. Jim is going to be alone. Emily is going to be alone. We are all going to have to try to be strong APART from each other and this really has never happened before. It’s like we have to be smashed apart before we can rebuild our lives together. Ouch – that hurts.
I left there crying and trying to figure out how we could make this work. But Jim reminded me that I personally don’t need to be at Ana’s bedside holding her hand and bringing her water. My big contribution is my liver – and that gives me a free pass. He then reminded me to breathe.
When we were finally reunited with the girls in New Paltz at about 7:30, Ana presented me with a notebook she’d made at Fiber Flame in Woodstock. She said she thought I’d like to keep a journal while I was recovering. She decorated it with all kinds of things, including inspirational words and phrases. The one that stuck out most was…”keep breathing” which she’d typed out on an old fashioned manual typewriter.
I couldn’t believe it! I looked at Jim and said, “Do I tend to not visibly breathe? People keep telling me to breathe.” His response, “Um…you are often very tense…”
I’m keeping the kids home from school today. Emily has a cold which she didn’t even realize she had. She just sounded stuffy to me when I finally got back to her yesterday and I asked if she felt okay – she said she had a sore throat all day yesterday! This morning, she sounds like hell. Ana just needs a day to decompress after being away from home for a couple of days. Both of them have sleepovers again tonight and we won’t see them until tomorrow night.
What an insanely crazy week. All I can do is keep breathing.