My name is Jill, and I am an organ donor’s caregiver/spouse. I am honored and excited to be Ryan’s first guest blogger!
Given that some folks reading this blog have been inspired to consider live organ donation, Ryan and I felt that it was important to share the perspective and experience of a caregiver.
Firstly: thank you to our parents, friends, family members, coworkers, nurses, surgeons, social workers, charity coordinators, volunteer cooks, cleaning crews… to everyone who sent support, good vibes, prayers, cards, texts, emails, GrubHub gift cards, donations… to everyone who spent even a second thinking of Ryan and Anae. Thank you, thank you, thank you. You are loved and appreciated.
Now let's get into it.
Since I first met him in 2009, Ryan had always been a big proponent of blood and organ donation. His attitude was, “If I don’t need it, someone else can have it." In 2017, I even mentioned his giving nature as part of my wedding vows: “You're one of the kindest and most giving people I know. A few months ago, you casually mentioned that you are interested in becoming a live organ donor. When we were in a 3 year, long-distance relationship, you would drive up 8 hours to visit me in Syracuse multiple times a year, rain, snow, or shine (but usually snow). You once brought me my favorite milkshake in a cooler all the way from Z Burger here in DC. Your kindness knows no bounds, and today, I promise to be kind and giving to you.” (There was a lot more schmaltz before and after this, but you get the picture)
Obviously, giving a kidney to a stranger is a bigger deal than bringing your girlfriend a milkshake.
(Though it was a really good milkshake.)
This whole process began, as many of you know, back in May when I was casually scrolling through my Facebook news feed. My friend Sara shared a post from her friend Michelle about her daughter, Anae, who was in desperate need of a kidney. Since he had mentioned an interest in live organ donation in the past, I figured I would bring it up to Ryan. Given that Ryan and the girl were both adoptees, Ryan felt an immediate connection to her and felt compelled to see if he was a match.
The process of matching Ryan to Anae for donation was interesting and at times, quite stressful. Ryan underwent a litany of tests, and as a person who has a phobia of needles and blood, I could not imagine being poked and prodded so much for someone I did not even know (I can barely do this stuff for myself!). I admired Ryan’s bravery and selflessness. When I would talk to him about the situation, he would say, “What I am going through is nothing compared to what she’s dealt with for her entire life” and, “It will all be worth it in the end if I can help her”. The process lasted 7 months in total and during that time, we were rather busy. I was going through job interviews, my grandmother died, we attempted to go on vacation (thanks, Hurricane Dorian), and we packed up our lives once again and moved to our new home in Virginia for my new job. While dealing with all of that, we were considering the implications (both immediate and long-term) of the potential surgery.
On top of the physical medical tests Ryan underwent, he also spoke with psychologists and social workers. One of them called me to confirm that I was on board with everything and had no hesitations. I was 100% on board but I was genuinely surprised when the woman I spoke with told me how some marriages fall apart after a live organ donation. There are often feelings of resentment over how the donor can now no longer give their organ to their spouse, or feelings of jealously over how much attention the donor is getting. Some spouses just do not want to deal with the fact that their partner is undergoing a surgery and that they have to help care for them afterwards. These thoughts had not even occurred to me; I was honestly just excited and nervous about the whole thing, as well as proud of Ryan.
In December, we got the good news! Ryan was approved to donate his kidney to Anae. We reached out to the recipient’s parents and got to meet them, which was really lovely. I think it made it all more ‘real’ for both of us. You all know the rest of this story (surgery delayed, surgery, Transplant House, ER, appendix problems, etc.) but here is where I will veer off a bit from Ryan’s narrative. From January 15 to February 3, I was at Ryan’s side 24/7. We’ve been together for over a decade and we had spent almost two months total on road trips in 2018, so we knew how to deal with each other for long periods of time, but this time I had real responsibilities.
Ryan was basically my 6’2”, 29-year-old child. My list of responsibilities included: taking him for walks a few times a day (like a puppy!), helping him stand up, helping him get into/out of bed and chairs, making sure he used his incentive spirometer multiple times an hour, making sure he took the right pills at the right times, helping him dry off after showers, picking up anything he dropped, monitoring him between nurse visits, keeping an eye on his incisions, following up on his bowel movements, making sure he didn’t lift anything even remotely close to 10 pounds, holding his hair back when he puked, helping him get dressed, getting him outside for fresh air, and of course, acting as his social media/communications manager. Nothing too bad or too gross (I was really glad I didn’t have to insert that suppository…).
The hardest part of this entire process was watching him get wheeled off to surgery. I was confident in the team at Penn (they are the best in the world at what they do, so there was no reason to doubt them!) but there is something about removing a major organ that is… unsettling. The last time I had watched him undergo surgery, it was an emergency gallbladder removal. He had been in intense pain, so I knew surgery was necessary and would make him feel much better. This surgery, however, was completely elective; he was in perfect health going into it and would suffer for a bit afterwards. I guess what I am trying to say is that this type of surgery felt very different and was much more nerve-wracking, especially given the length of time he would be under and the fact that he was losing something he did not ‘need’ to lose. I was also worried about whether or not Anae’s body would accept the kidney and if she would be okay, especially after all she had been through in her short life. We were really rooting for this kid and her family. Thankfully, all went well but it was certainly a stressful couple of hours.
Following this thread, I feel like I need to touch on the constipation. There’s the constipation Ryan experienced from his meds (good times), and then there’s the emotional ‘constipation’ I experienced. There is just no other way to put it; I had trouble feeling feelings. I have read that this is a normal reaction to a particularly stressful situation so I know it’s totally valid and real, but I had trouble feeling much of anything. I wanted to cry at times (in particular, seeing Ryan in the recovery room; when a hospital building manager came by Ryan’s hospital room to call him a hero; and when we found out Anae was eating chocolate ice cream for the first time ever) but nothing would happen. I just felt a sort of hollow pit in my stomach. It was as if my body would not let me feel anything too intensely, as if it was keeping me safe and in stasis until I could handle it and did not have to worry so much about another person. Major props to my nervous system for keeping an eye on me. The dam finally broke on February 2 when I watched Andy Reid, former Eagles head coach, win his first Super Bowl. Go figure.
It is difficult not to be in awe of my husband. I am truly amazed at how lucky I am to have married someone like him. He does not consider himself a special or unique person. He has never tooted his own horn or wanted to be the center of attention. Yet, he heard the call of a stranger on the internet and let doctors cut open his body to take away his kidney.
I did some research and there are currently 113,000 Americans on the national transplant waiting list. Of these, the vast majority need a kidney. Most of them wait an average of 4 years for their new kidney. 13 people die every day while waiting for a life-saving kidney transplant. Less than 1% of people listed as organ donors (upon their death) will die in a way that allows for organ donation, so this makes live organ donation all the more important. Apparently live donations also have a higher chance of success than deceased donations. 16,000 kidney transplants are performed in the U.S. each year year and of those, 5,000 come from live donors. With 330,000,000 people living in the U.S. as of 2019, that means that 0.0015% of the country donated a kidney while living. Ryan is truly a rare type of person.
On that note, I’d like to wrap up what is rapidly becoming a meandering blog post with some optimism.
I’m not a terribly optimistic person. Perhaps it’s the Philly sports fan in me. Either way, I have been particularly down about the state of the country and of the world over the past few years. Going through this whole process has honestly restored a lot of my faith in humanity and belief in the inherent goodness of people.
It was seeing the way complete strangers, even grown men, were reduced to tears when hearing Ryan and Anae’s story. It was seeing the messages come in from strangers about how Ryan’s blog has inspired them to consider becoming a living donor. It was living at the Transplant House and hearing the inspiring stories of organ recipients (lung, kidney, heart, and liver), of meeting a young double lung transplant who wants to run up the Rocky steps with his son as soon as he is well. It was seeing his mother dutifully caring for him for months and believing in his recovery, even when the doctors at their New York hospital told her he was ‘taking up a bed’ and needed to ‘just die already’ (Penn took a chance on him and saved his life). It was seeing the spouses of organ recipients laughing over coffee together in the Transplant House kitchen, swapping war stories of surgeries, medications, and grumpy husbands. It was seeing strangers come to the Transplant House to spend their time and money cooking us delicious and healthy meals. It was seeing how people from all over the world (most of whom we will never get to meet to thank in person) were following Ryan and Anae’s story; cheering for them, crying for them, praying for them. It was all of these things and so much more; so many things I will never forget and which I am still processing.
Whenever I'll get gloomy with the state of the world, I will remember the good I had the opportunity to be a part of. Hugh Grant was right: love actually IS all around.