For background information please see my page about chronic illness HERE.
The summer of 2016 started out with my health a little off kilter, though that’s not exactly unusual as the heat and humidity often make the symptoms of my many illnesses more severe. This time it was mostly a ton of migraines. I had to stay home most of the time and restrict my activities but, again, it wasn’t like I hadn’t gone through similar rough patches before. The last week of July I decided to go to a dessert fair in Seoul with a friend. There are a few bakeries I like to support and the events are so fun I attend them often. I knew I would have to take things easy because of my health but I was desperate to get out of the house.
By the time I said goodbye to my friend I was feeling pretty sick. I got on the train home to Incheon but about halfway there I started to have terrible abdominal pain. I seriously considered getting off, finding a bathhouse and just waiting it out. I took a seat in the handicapped area and held my disability card in my hand so that no one would bother me. I somehow endured the pain through the rest of the train ride and the ten minute walk to my house from the station.
When I got home I took pain medication but it didn’t work so I took more and it still didn’t work. After my husband got off of work late in the evening we went to the emergency room of our local hospital. However, the emergency room was full and we were going to have to wait a long time just to get in. My husband argued with the staff saying I was a transplant patient and needed to be seen quickly but they were uncooperative. I suggested we go to the local Catholic university hospital because I had had good experiences with their Seoul and Daegu branches. It was a fifteen minute cab ride away but we were doing to have to wait longer than that to get into the emergency room where we already were. At the Catholic hospital I was seen promptly and taken care of. Some scans were taken and that is when it was discovered that I had blood clots in a main artery to my liver. This artery had previously had a stent placed in it at Mayo Clinic to keep it open but now blood had pooled and clotted around it.
It gets a little fuzzy for me around this part. I was hospitalized but when the severity of my situation was understood I was transferred to the hospital branch in Seoul, which was more specialized in liver transplant patients and could offer us more options.
Around this time a couple friends of mine were often with me because my husband had to be at work most of the time. And since I was transferred to Seoul, the trip to and from the hospital was a long one. One friend in particular was there with me almost constantly. She is fluent in Korean and could help me with communication where my barely intermediate level of Korean failed. I was in so much pain and so disoriented that I really didn’t have it in me to speak much Korean at all.
I had an excellent team of doctors at the Catholic hospital in Seoul and they tried everything that they could. Some procedures were attempted to open the artery back up, but they were unsuccessful. My condition was quickly worsening. I was unable to eat much of anything, was often in pain and had daily fevers. I developed infections and had to be quarantined. My liver was failing and it became apparent that transplant was the only option left to save me.
My previous transplants had all been at the Mayo Clinic in Minnesota (America) so I was in contact with Mayo and my parents and we were trying to work out what to do. I could not get a transplant in Korea since I needed a whole liver in order to replace the faulty “plumbing” and to get one meant receiving from a deceased (cadaver) donor.
In Korea the majority of liver transplants are from a living donor, usually a relative of the recipient. The liver is comprised of two lobes, so in a living donor situation, one lobe is removed from the donor and placed in the recipient. The liver is a regenerative organ so it will grow back to completeness in time. The donor can regrow the part of their liver they donated and the donated organ can grow to fit in a new body. In a cadaver donor situation, a deceased person’s viable organs are donated to people on a waiting list who are listed in order of how urgently they need the transplant. The donor would have previously agreed to be an organ donor or their relatives made the decision to donate after that person’s death. While there are cadaver donors and a waiting list in Korea there are very few who consent to be donors and therefore the list is long and then chances of receiving an organ in time are slim. There are probably many reasons why there are so few cadaver donors in Korea but much of it is probably due to Korea’s Confusionist background. That’s another subject that I will not go into here.
My best chance for a liver was to go to America where a whole liver would be more easily attainable. However, I was unsure as to whether I wanted to get another transplant, let alone if I was in good enough physical condition to endure surgery. My previous transplants took place after long and painful waiting times on the transplant list. My third liver transplant in particular took years of waiting to receive. I suffered a lot during that time and had always told myself I would not go through that again. My intent had always been to enter hospice and live out my life more comfortably should I find myself in need of another transplant. So, my other reason for going to America was to be near my family should I pass away or choose hospice. Needless to say, there was a lot of thought that went into how we should go about doing all this. The difference this time around was that the cause of liver failure was not directly related to the rare liver disease responsible for my other liver failures.
First, my parents began applying for me to get medical insurance in America since I had not maintained any there, having been receiving all my medical care satisfactorily in Korea. This was a complicated process and we hit a lot of snags. Second, we booked my flight to America. I was in such bad shape that we were nervous about me getting through the flight. We booked an expensive business class ticket because I was not going to survive sitting upright in economy. I needed to be able to be more comfortable, so a business class ticket was the only way I was going to get to America without having a medical emergency along the way. Lastly, after much deliberation, it was decided that my husband should wait until later to come to America. Because of mounting medical costs and the even higher ones we would be encountering in America, he would need to work as much as possible, which he could only do in Korea. Because of tight immigration laws and my disabled status, he would only be able to come to America on a 3 month tourist visa. To stay any longer would require months of preparation and a lot of complicated paperwork. We didn’t have time for any of that. Chanshig was to come in time for either my transplant or my death, depending on how things went.
Needless to say this was an extremely stressful and emotional time. We didn’t know how we were going to pay for any of this and we didn’t know if I was going to survive and either way I was going to have to be apart from loved ones. I grieved for all the things I was sure I would never get to do again. I had so much more reason to live now than I’d ever had before. I had a husband and we’d only been married a year, I had a wonderful life in a country I loved and I was able to freely pursue my passions such as learning Korean. I had amazing friends and the best family of in laws one could ever hope for. For the first time I actually had a life of my own that I had helped shape and I was grieving for it because I was sure it was all coming to an end.
We also had to rehome our many pets because with me in the hospital and my husband working, taking care of me and preparing to come to America at a moment’s notice, we were unable to care for our animals properly. Thanks to a Korean animal rescue Facebook group, many people came together to help us. Two of our cats ended up having to go to a no-kill shelter and, sadly, we will not be able to see them again as we cannot track their whereabouts. But our other two cats were cared for by a family member and my pet rats have been in wonderful homes and I will be getting them back upon my return to Korea. From the bottom of my heart, thank you to everyone who helped us with our animals! We are so thankful. What a relief it was not to have to worry about them!
One of my friends in America started a fundraiser for me and we were surprised when so many people donated money to help us. My friend Nichola of My Korean Husband made a video about my story and many people donated because of that. Without the money from the fundraiser I don’t know where we would have ended up but I know it wouldn’t have been good. The fundraiser is still active HERE.
I don’t know how to even start to say thank you to all the people who donated, spread the word about the fundraiser and sent good thoughts and prayers our way. Every little thing that everyone did helped. My family and I are eternally grateful. Thank you and 감사합니다. So much. You made all the difference, really.
In Part II of this story I will write about my going to America and what happened when I got there.