Friday, June 5, 2009

Untitled – For Now

As I write this, I am 26 years old, with a 5-year-old daughter who will start Kindergarten in the fall. I have been divorced for 3 years and live with my parents while I wait for the housing market to stabilize (meaning 2+ bedroom houses get closer to $200,000). My ex-husband lives in another state, and I just recently started dating a wonderful man I met at church camp 18 years ago. I have been working for the same company for 3 ½ years, have changed departments once and am working on getting my insurance license so that I can continue to move up. I have two part-time direct-sales consultant jobs that help pay for the addiction to Disneyland that my daughter and I both share. I’ve attended the same church my whole life (aside from my 6-month stint in the state where my ex-husband lives), now lead the Christian Education committee and serve as an alternate for the diaconate. My daughter has more of a social life than I do between her dance lessons, swimming lessons, birthday parties and church activities. I am still struggling to figure out who I am and what I want to be when I grow up.

At least, that’s my life when looked at with a ten-second glance. That’s what’s seen on the surface. But if you peel away just one layer, you’ll see a 4-inch scar, between my rib cage and my hip on my left side. Still slightly pink around the edges, it is almost 2-years-old, but the event it came from is still very fresh in my mind. I could explain it like Copperfield, and start from the very beginning, but that would be both unnecessary and long, not to mention boring. So I’ll start about 4 years ago. That should suffice.

One final point before I start this; I do not write this to be self-promoting or to come off as holier-than-thou. I decided to put this in writing so that if someone ever asked me about it, or wanted to encourage or support someone close to them, this story would be readily available.

Shortly after I moved back to my home state of California in late 2005, I decided to try to make my direct sales business my full-time job, so that I could stay at home with my 1-year-old. I couldn’t imagine putting her in daycare all day, as I’d been her main caregiver for her whole life so far. So I made my phone calls and started building my business. The first people I called were friends of mine in my church, who’d watched me grow up and helped me with religious and “real-life” experiences. I held a few shows for my business, and from those shows I got more customers. One of those customers who agreed to host a show in her home was BJ. She was a member of my church and one of her stepsons had come to a few of the youth programs I was involved in when he was younger. BJ and I got to know each other a bit better, but nothing too deep, being that there is a generation between us.

Sometime in the summer of 2006, I read an e-mail from my church that listed all of the members of our congregation that were requesting prayers for illness or life struggles. One of the people on that list was another stepson of BJ who was in need of a kidney transplant, and a possible donor was no longer available. The e-mail requested that we pray that he find another O+ donor soon, as he was in his 6th year of dialysis. My first thought was, “I’m O+, I wonder if I’m a match.” Honest. I asked my mom how old this man was, and she told me Aaron was only 26! I couldn’t imagine being sick for that long, especially so young! In the amount of time he’d been sick, I’d gotten married, had a kid, moved out of state, gotten divorced and moved back home. And here is this young man who has been on dialysis for the most of his 20’s. It just wasn’t fair. So I called up BJ and asked her who I could contact to find out if I was a match. I called his health case-manager up in L.A. and scheduled an appointment to go up to the USC Hospital to get tested. I met my case-manager and we talked for a bit over the phone about what I would need to do if I was a match and decided I wanted to donate. Seven vials of blood, a urinalysis and a psych evaluation later (being young, USC wanted to make sure I understood the seriousness of the donation, and they were concerned that I’d never met Aaron, but met his mother through my church. At that time, news had just broken about a very small church who believed that the only way to get into Heaven was to donate an organ.) I found out I was a complete match! Not just a match, but later they discovered that Aaron and I were actually distantly related, more closely related about 4 generations ago!

I had a long talk with my parents about the donation. They were proud, but scared. We did all the research we could on living donations and the recovery process and the statistics on survival. I had to prepare an advanced directive, thinking of every possible scary scenario and what I would want. Being divorced, if anything should happen to me, my ex-husband would get custody of our daughter, meaning she would have to move out of state and away from my family. My parents would be very sad to see my daughter leave, but my perspective on this was that if God should decide that I was not to stay here, and that this young man was, then who was I to argue? I felt that Aaron hadn’t really lived yet, and I’d lived a whole lifetime in 3 years. It was his turn, and if that meant I had to pass to let him live, I was okay with that. That scared my folks even more, but in the end it was truly my decision.

I tried to keep my decision quiet from anyone who wasn’t directly involved, only because I didn’t want the attention and I didn’t want it to be weird if it didn’t happen. And it was a good thing I did, because Aaron became too ill for the surgery shortly after we found out I was a match. Long story short, we had to wait about 5 months before he was healthy and off blood-thinners to even think about scheduling the surgery. In the mean-time, I’ve taken on a new position with a different department with my company, and I’m not sure what to tell my new manager, if anything. “Hi, I’m new and I’m going to be going on medical leave for 6 weeks, but I don’t know when yet. I’ll let you know if I’ll be leaving you in a lurch during our department’s busy season.” Yeah, not so much. When Aaron was finally well enough to have the surgery, I had to get a bunch of tests done to make sure I was healthy enough. That required a lot of trips to L.A. for test that could, in theory, be done locally. I spoke to my case manager and he agreed that if I talked to my primary doctor, USC would accept my getting the lab tests done here. That caused another problem; my health insurance company wasn’t a part of any of this. Aaron’s insurance (which, ironically, was the same segment my department dealt with) would pick up the tab on all of my procedures up until I left the hospital after the surgery. So I spoke to my doctor, told his what was going on, and we decided that “it was time for your physical anyway.”

After all my tests were done, it was time to schedule the surgery. And now it was time to start telling people. First I told my manager. It was a bit unsettling that he was so calm and accepting of it. My recovery was going to finish just a few weeks before our busy season hit, but he was alright with it, especially when I showed him the manual (I called it my Bible) on how to do my job, so that whoever replaced me while I was out could get by and not completely make a mess. After I told my boss, we lifted it up as a celebration in church. I’m surprised my cheeks are not permanently red from the embarrassment I felt. It just didn’t feel like that big of a deal to me, but other people started to cry when they heard what I was doing. Even now, if other people bring it up, I try to downplay it. I wasn’t in it for the praise, I was doing this to help save Aaron. 6 years, 7 after the illness that postponed the surgery, of dialysis was too long.

Surgery was scheduled for late September. I had one last appointment at USC to have a final check up and be given instructions for the day before. The surgery would happen early in the morning, so I needed to have my last meal as lunch the day before. With my lunch I was to take a laxative so that I would empty my system before surgery. If I didn’t “empty myself” by 10:00 PM the night, I would need to take another. Unfortunately, I hadn’t been emptied by then, so I did take another, then went to bed, since I would have to get up around 3:30 to make the drive to the hospital. Suffice it to say, I did not get much sleep. The laxatives finally kicked in and I was back and forth to the bathroom a LOT. When it came time to leave for the hospital, I “went” one last time and prayed that we could make the 35 minute drive without having to pull over. We barely made it. My folks checked me in at the desk while I ran straight for the ladies room. Whew!

After I was put into my room, they told me to undress and “fill this cup, please.” Um, excuse me. I’ve got nothing left! They said it was just to confirm that I was not pregnant. Yeah, I think we’re okay there. I’ve been divorced/separated for almost 2 years and haven’t been on a date since. If I’m pregnant, we need to re-read the Bible. Still, they wanted me to put as much into the cup as possible. I did my best, and they seemed satisfied. My parents and my minister were now in the room while I was poked with a needle for my IV. (My daughter was staying with my sister so she didn’t have to see all this, though she was well aware of what was going on). After a few tries on my left hand, the nurse gave up and put the IV into my right hand. We waited for a little bit, and that’s pretty much all I remember. The anesthesia they gave me for the surgery wiped out the memory of saying goodbye to my folks and taking a ride on the bed to the surgical room. It also wiped out a few select memories after the surgery, like meeting Aaron’s grandmother, whom I later “re-met” months down the road.

The surgery went well. They surgeon only used Dermabond, no stitches anywhere! Just this thin layer of glue held me closed. Yikes! (I later used this method to close up a gash in my daughter’s chin. Nail glue worked like a charm.) Aaron’s surgery went well, too. A doctor I spoke to later said that they barely had connected my kidney to his body when it started producing urine. A lot! The staff in the surgical room hadn’t seen many live donations, and they were used to having kidneys from recently deceased people. Apparently, those kidneys take a few seconds to minutes to go back to full production.

The pain was intense, but not as intense as it could have been if I didn’t have the little morphine button I could push every 15 minutes. And I did push it every 15 minutes. At some points, I watched the clock on the machine so I could push the button as soon as it reset. Lying down on the bed was tolerable, but the nurses wanted me walking around as soon as possible. Walking wasn’t so bad, either. It was the getting up process that was very hard. When you’re perfectly healthy and going about your normal day-to-day business, you don’t think about which muscles you’re using. It takes a lot of abdominal work to sit up, especially when they’ve just been cut into. I had to raise the head of my bed as much as I could and then lower the foot of the bed as far as possible before I could even think about getting up. USC is a teaching hospital, which is great, except when the new-ish nurses have never taken care of a patient who had abdominal-area surgery. One nurse apparently didn’t read my chart before coming to help me up. I needed a hand to hold onto and someone to push ever-so-gently so I could get out of bed. Yeah, that didn’t happen. He pushed me up and might as well have squeezed out tears from my eyes, it hurt so much. Luckily, that was all I saw of him the rest of my stay. He was a nice man, just a bit oblivious. Each day, the pain lessened, but not by much. The second day I was able to walk over to Aarons room to say hello. He was faring much better than I was, but the doctors said that was normal; when you’ve been sick for a very long time and you have surgery to make you better, you tend to heal and feel better faster – when you’re perfectly healthy and have surgery that changes how your body functions a bit, it takes quite a bit longer to get back to normal.

I was in the hospital for about 6 days. After day 3, I was sooo ready to go home, but wasn’t allowed to until I had a bowel movement; that’s how the doctors know you’re body is ok. Day 3 they allowed me to have a little sponge on a stick that I could soak in water and just brush on my tongue if I felt thirsty. I wasn’t allowed to drink water until I passed gas. I’d never been so happy to fart in my life! I even texted my folks and some others who were keeping tabs on me when it happened at 2:00 AM on Day 4. Now I was allowed to drink water and have broth for my meals. Day 4 they took out my catheter and let me use the restroom like normal adult. But I had to pee in a bucket (think training toilet for 2-3 year olds) so they could analyze it. By this point, I was starving, not having had solid food in my stomach for 5 days. But I wasn’t allowed to have food until I had a bowel movement. My thought was, “How can I poop if I don’t have anything to poop out!?!” Morning of Day 5 I did it. Yay! Now I can have lunch! Getting out of bed is easier and I’m able to walk laps around my recovery wing. Luckily, I’d packed a robe to put on over my little napkin of a gown they wanted me to wear. On the morning of Day 6, I was getting really antsy about going home, especially since if I stayed much longer, my ride home and caregivers (my parents) were supposed to be going up north to my uncle’s wedding. One of my surgeons stopped by and examined me. She commented how my stomach looked still a bit bloated/swollen from the anesthesia. I remarked back that, nope, that was just me. She laughed and said, “Why didn’t you say something before the surgery? We could have taken care of that while you were under!” I’m hoping she was joking, because if she wasn’t, I would be very sad at the missed opportunity to get rid of my “mommy-tummy.” She approved me to be released that afternoon!

Since women are kinda pre-programmed to forget intense pain (childbirth), I can’t really describe the pain I felt right after the surgery, but I do remember hating the pain. And being afraid of it. If you’ve ever felt the urge to sneeze while riding a bike down a busy street, you might come close to the fear I had. The doctors at the hospital told me to get a very firm pillow to hold against my incision for when I had to sneeze or cough. I think it was supposed to help me feel like I wasn’t going to open up and have my innards fall out. But it didn’t work. I came very close to hyperventilating every time I had to sneeze or cough, I was so scared. It hurt so much. Again, one of those things you don’t realize use your abdominal muscles. I would do everything I could to not cough, or to make the sneeze go through my nose. The pillow also didn’t help much on the ride home. That 5 freeway is in desperate need of repair; I felt every single pothole. I was so happy to go home. In our living room downstairs, we have recliners, so I knew I’d be okay camping out down there during the day. But sleeping in my bed was another story. Completely flat, and to make matters worse, I’m used to sleeping on my side. It didn’t matter which side I slept on, my incision site hurt. I would either lie on my left (where they took out my kidney) and be in intense pain, or sleep on my right and feel like my insides shifted and my now-healing incision was pulled down. And getting out of bed was fun. I would put my hands flat on the wall behind the head of my bed, carefully put my feet onto a stool on the floor, and then walk my hands up the wall until I was standing up straight. I did this acrobatic act every day for about 3 weeks.

I stayed on leave from work for 6 weeks. I was instructed to not do any heavy lifting for a couple weeks, and to take it very easy. I would tire very quickly and didn’t want to exhaust myself. I limited myself to one household task a day for the first week. Load the dishes in the dishwasher one day, go out and get the newspaper the next day. Luckily, I lived with my parents and didn’t have to function completely by myself, but I did have a few days where I was alone and had some friends drop by while my folks were away at my uncle’s place. For me, it was very hard to be “lazy.” While I can occasionally be a couch potato, I cannot do it full-time. I read a few books and caught up on movies and T.V. shows, all from the comfort of my recliner. But I was still very tired. When it was time to go back to work, I went back part-time, just working half a day. That tired me out even more because I tried to get a full day’s work done in 4 hours. But I finally managed to get back to work full-time 7 weeks after surgery.

A year-and-a-half later, I’m doing fine, and so is Aaron. So well, in fact, that he has moved out of state to be closer to his girlfriend. He will have to take anti-rejection medication for the rest of his life, even though we were such a good blood match. But that might change one day. I hear they are doing research on doing bone marrow donations before a live kidney transplant to make the recipient’s blood think it’s the donor’s blood and greatly reduce the chance of rejection. Maybe someday they’ll figure out if a post-kidney transplant bone marrow donation will do the same. I’m up for that, if Aaron is.

As for me, I’m good. I’m still numb below my scar; the numbness reaches about 4 inches down. The scar is a nice thin line and a very faded pink. My normal life has not changed at all, except for needing to use the restroom right when I wake up in the morning. I used to be able to go 8-10 hours w/o needing a stop in the ladies room, but now I feel the urge every 4-6 hours. I’m not sure it has anything to do with my surgery, but it doesn’t bother me. I have to make sure I drink enough water during the day to keep my only kidney working properly. I can have more kids if I so choose, but I have to stay away from contact sports that could hurt my other kidney. I can still donate blood, but I have to watch how much alcohol I consume. And I have to take acetaminophen instead of ibuprofen when I have a headache or any other pain. I have discovered that the internal scar tissue is still a bit tight; sit-ups are tough and I feel like I’m going to pull a muscle, but only on that side. So, I don’t have 6-pack abs. Oh well. I’m healthy and so is Aaron.

So that’s my story. I hope that it gives any potential living donors out in the world the encouragement they need to make the right decision for them. I will gladly talk to anyone who is considering being a living donor, to help answer any questions they might have. I don’t think I have all the answers, and obviously a doctor will have more information, but if anyone needs a donor’s perspective, I’m here. Actually, I’m not here…I’m heading for the ladies room.

My fearless child, friends and I on Tower of Terror at DCA

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