Tuesday, October 04, 2011

How I Spent My Summer Vacation

Disclaimer: This post contains some gross medical information, so if you are squeamish, you may just want to skim through it. I'm writing this mostly to have my own record of what happened.

August 11, 2011, Todd and the kids and I make our way to Los Angeles, CA, to visit Todd's family. It is to be a five day vacation, our last one of the summer, so the kids could spend some time with their grandparents. We flew from Chicago to LA on Virgin Airlines, which was really nice. I felt rather fancy and Hideo and Emiko loved having their own tv sets.

We landed and had lunch at Del Taco, only because it was convenient and we were hungry. I had two bean and cheese burritos. Then we made our way to the Inglewood Cemetery, because Todd wanted to put flowers on the gravestones of his grandparents. We did that and explained a bit of what we were doing to the kids, and then made our way back to the white minivan we had rented for the trip.

Just as we were trying to leave the cemetery, a graveside service was starting. Suddenly the cemetery was packed full of people parking all over the place and a billion people walking in the middle of the barely two lane street that leads out of the cemetery. I thought we were going to get stuck, and one woman called Todd a stupid white motherfucker for attempting to leave the cemetery -- as we were waiting for her to get out of the middle of the street so we could pass by. We got lots of looks. I was offended on Todd's behalf, since he is obviously a Japanese motherfucker, but he is definitely not stupid. We were almost out, when a guy in a huge SUV parked badly and blocked our way. Luckily, we were able to ask him to please move, so he did and no one got stabbed. That was our first exciting experience of this trip. If only we knew what was to come!

That evening we hung out with Todd's parents -- they have a nice new house in a subdivision in Corona, in Riverside County. There are a ton of dairy farms in Corona. The air is not so fragrant. I'm not sure what smells worse -- cows or chickens (the smell of chickens fills the air in Northwest Arkansas). I know -- hogs smell the worst.

Anyway, Todd's dad made dinner -- he had steak and grilled salmon. I ate some salmon, as I don't eat beef, pork, or poultry anymore. It tasted fine, I felt fine. We went to bed and everyone was happy.

The next morning, I was really tired. Todd's parents took the kids to the park, so I went back to sleep, and it just felt like I couldn't stop being tired. Then at lunch, we ate at Wahoo's Fish Tacos, I felt a little achy, but nothing major. It got worse, and I was worried I was coming down with the flu, which would suck for my vacation! I had a tofu bowl with rice for lunch -- nothing tasted funny or anything, but I wasn't that hungry, so I didn't eat all of it.

By dinner time, I was feeling pretty lousy. We went out to a restaurant that had a smoker and features lots of smoked meats -- not just barbecue -- but steaks and whatnot. I forget the name. I should not have gone, since by then I could tell I was coming down with something, but I thought maybe I'd rally and be ok. I ordered a Coke and after about fifteen minutes or so decided to go sit in the minivan for the remainder of the meal. I was fading fast at this point and just wanted to lay down. I was irritated to get sick on my vacation, but thought if I got some rest maybe I could beat it.

My best friend Kyle is an anesthesiologist and he lives with his boyfriend Fernando in Northern California, but they were coming in that night to Corona to spend the weekend with us. So I texted him at the airport to tell him I thought I was getting sick. He said it was probably the flu and to get some zinc. So when Todd and everyone finished dinner and got in the car, Todd went to Walgreen's for me and got some zinc and some Tylenol Cold and Flu.

That night the vomiting started, after we got back to the in-laws house. I spent all that night going back and forth to the bathroom. I hate throwing up, so this was not fun. The next day, Saturday, the diarrhea started, and I felt really awful. I was extra mad about this, because Todd and I were supposed to go running in Huntington Beach that morning. I was training for the Chicago Marathon and was excited to get to do a long run on the beach. Then that afternoon we were planning on going to the Bahooka -- my absolute favorite tiki restaurant in the world. I was so sick I knew neither of those things was going to happen. Todd went running without me, which made me mad. I was obviously really sick at this point, and felt he should be home taking care of me!

Kyle and Fernando came over and played with the kids, and checked in on me. At this point, everyone just thinks it's the flu. Todd's mom would come check on me, and she made sure I had plenty of Gatorade and water. Todd's brother Scott is a doctor, so my mother-in-law was on the phone with him a lot, and he was giving her signs of dehydration to look for. So far, I still looked ok. We weren't really worried, because with the flu, you can vomit and have diarrhea for several days before getting dehydrated. I was spending an awful lot of time in the bathroom and feeling increasingly miserable. By that afternoon I was having a lot of trouble sleeping.

Todd had decided Friday night to sleep on an air mattress in the living room instead of in the sickroom with me, so he was sleeping there again Saturday night. When I needed something, I would text him -- like, please bring me some more Gatorade. Very handy -- 21st century bell. He was pretty good about responding quickly.

By Saturday night, I was seriously messed up. I couldn't sleep, and was extremely light-headed. At some point Kathleen -- Todd's mom -- suggested I turn on the tv to have some noise in the background -- she thought that might help me sleep. So I remember walking over to the tv at the end of the bed, and on the way there I sort of passed out mid-step. I came to next to the quilt rack, and I had no idea what I was doing. Then it came to me and I turned on the tv and got the remote.

Around midnight that night (technically Sunday morning) I was extremely miserable. I passed out trying to walk to the bathroom to throw up. I came to on the floor with my head against the wall and wedged next to the vacuum cleaner. I left a sizable divot in the drywall from my head. Todd took a picture. I'll post it. Anyway, after I woke up and realized what had happened, I decided to stop walking and start crawling. I called Todd on his cellphone to tell him I had passed out and hit my head. I was starting to realize that this was not normal flu behavior, and I think I just wanted permission to go to the hospital -- like I wasn't being silly or overly dramatic. He didn't seem concerned, so I tried to go back to sleep. At this point, I had been up for hours.

At two in the morning, I had had enough. I called Kyle, because I knew he would answer and tell me what I wanted to hear. I asked him if I could go to the hospital and if I was being silly. He said I was dehydrated and that the hospital would pump me full of fluids and I'd feel better and be home by noon, and that I wasn't being silly. Which was a relief. I had started throwing up in plastic bags in my room to avoid crawling to the bathroom. That is disgusting.

Todd's parents' house is big. So I grabbed my cellphone and crawled on hands and knees all the way from the guest room where I was staying down a long, tiled hallway, until I finally made it to the living room. I was so excited to see Todd. I woke him up. "Todd, I'm sorry to wake you, but I have to go to the hospital. I can't take this anymore. Wake up!" So he woke up, and went to get his mom. There was some discussion about where to take me. I said, "Take me to the closest hospital right now." So we piled into the minivan. I couldn't walk at this point, so I threw my arms around Todd and he had to pull/drag me into the minivan.

By 2:30am on Sunday we were at Corona Regional Medical Center, and I was losing it. I knew things were not going well. I was terrified that I would have to sit in the waiting room for a long time, but it wasn't a long wait at all. Kathleen found me a wheelchair. Apparently they don't usually have wheelchairs in the ER, so when she asked for one, she was told to look around and see if she could find one, and if so, it was hers. Luck was on our side -- I had to have a wheelchair. Even pulling/dragging wasn't going to work anymore.

I think I must have looked pretty bad, because they got me to triage quickly. Then they started taking all my vitals and freaking out. My blood pressure was down to 56 (that was the top number) by this time. The nurses were very excited about getting my blood pressure up and getting fluids in me. They started an IV and a nurse and her assistant came by to put in a foley catheter for collecting urine. That's when they found out that my kidneys had already failed. The nurse yelled, "There's no pee in here! When did you pee last?" I said, "I"m sorry, I have no idea when I peed last. I've had diarrhea for two straight days; I thought I was peeing, but I don't know." That was a bad sign.

The doctor came to see me -- Dr. Ranch -- and he told me how sick I was and asked me questions about what I had eaten, what I had done, if I knew how I got sick. He said I was very ill and wasn't going anywhere -- that this was not just the flu and their first priority was to get my blood pressure up. Soon after that I realized I needed to use the bathroom and a nurse gave me a bedpan, but I didn't do a very good job and made a big old mess, in front of my husband and brother-in-law. Well, I warned them to go away, but they were right nearby. Very embarrassing. There is no dignity in the Emergency Room.

A couple of hours after that, I realized how dehydrated I was. It was like the worst cotton mouth ever. I was dying for some water, but the nurse said I couldn't have anything until my blood pressure was up. It took them a long time to get my blood pressure up. They finally moved me out of ER to the Progressive Care Unit (PCU) to a real bed. When I got there, there were two nurses getting me settled. The one nurse said to the other nurse, "She should not be here; she is too sick for her. She should be in ICU." The other nurse said, "I know, but Dr. Nguyen said to bring her hear." I don't guess they knew I could hear them.

PCU was a nightmare, because they don't have private rooms. I was in a room for four people, separated by curtains. There was a woman across the room from me who was obviously very troubled. She would talk in Spanish really loud, then start laughing like a hyena, and then start screaming bloody murder. Over and over again. I didn't care what they did with me, but I thought, "I'm too close to dying to die like this; they have to get my out of here." Then Dr. Nguyen came in to see me and he saw that my veins were super shot and I couldn't take anymore IVs. So he said I had to move to ICU and that he was going to put in a Central Line in my chest, which is like an outlet for lots of IVs and whatnot. I was all for it, because they kept trying to get blood samples from me, and my veins are stingy on a good day, so on this day, my veins were very unhappy and I was hurting from all their attempts. I almost hit the last phlebotimist who tried to get blood from me.

Kyle and Fernando had come to see me in the PCU, so when I got moved to ICU they had to wait for that. I was so glad to see them. When they got to ICU (which was a lovely private room), they didn't have much time, since they were flying back to San Francisco that evening. So I didn't get to spend much time with them at all. Kyle, being the doctor and geek that he is, really wanted to watch Dr. Nguyen put in the central line. Fernando was ok until I made him give me a bucket and I threw up in front on him -- he then decided he'd wait outside. I didn't get to say goodbye to him properly.

Kyle said they just couldn't stay, they had to get to the airport. So I said goodbye to him and he told me not to worry, but to keep him updated on what was going on. I really hated to see him leave! It was nice having someone there who could explain to me what was going on. Kyle was the one who told me that this sort of illness was very hard to recover from -- that it would take a few months and that I wouldn't be able to run the Chicago Marathon in October, which broke my heart a little.

So they left and Dr. Nguyen put in the central line. There were two nursing students who were in the room watching, and they were very excited to witness this; they couldn't wait to tell their fellow students about it. I was glad to help.

In ICU, all the nurses kept telling me how unusual it was for someone so young and healthy to be in ICU. Most of their patients are really old. So all the nurses were extremely nice and happy to see me. I was happy to be in my own room away from the screaming woman.

Todd was with me a lot of the time. His parents are retired, so they were able to take care of our children, which was a relief. It was very hard to not be with my babies. I don't know what he told them -- I guess just that mommy was sick and had to stay in the hospital for a few days.

That night I still could not sleep. When I would close my eyes, I would see these weird images like from old B movies or something. I guess it was my brain's way of helping to protect me from the trauma. I couldn't sleep before, because with my blood pressure so low I would have died. My brain was trying really hard to keep me alive. Thank you, Brain. I appreciate it a lot. But by Sunday night I really wanted to sleep, but Brain wasn't having it. Plus every three hours someone takes a blood sample, and they had to keep checking on my IVs. I had two IV poles full of bags of fluids and antibiotics. I should have taken a picture.

The next morning I started having trouble breathing. Dr. Al-Bashiri came to see me at 5:45am. He said that I was extremely sick and I think he is the first doctor to say that I had severe sepsis, which means I had a severe infection in my blood. You really aren't supposed to get blood infections, and I don't recommend it. He told me that I looked much better than I should, considering how sick I was, and that I was going to have to stay in the ICU for a few days, and that I would probably not be able to go home on August 15th as originally scheduled.

I guess all the fluids they had pumped in me affected my breathing. By noon that day I could no longer breath through my nose. Normally your kidneys would deal with excess fluid like that, but my kidneys had failed, so no dice. In case you didn't know, breathing through your mouth for a long period of time SUCKS and it's really hard to talk when you have to mouth-breath. Plus a disgusting slime develops on your teeth, and it doesn't matter how hard you brush, the film doesn't go away until you can breath through your nose again. So by Monday afternoon I was seriously unhappy. I kept thinking at some point I was going to hit bottom and then I'd start to feel better. I was ready to hit bottom -- surely I had hit bottom by now?

I also still had the horrible diarrhea. By Monday the diarrhea was worse than the vomiting -- the vomiting had largely been controlled. In ICU you aren't allowed to get out of bed, so I had to use the bedpan. I had gotten pretty good at it, and if I had to sit on a bedpan while a doctor was talking to me, so be it. There is no dignity in the ICU. But it was embarrassing and annoying to have to keep calling the nurse to come clean me up. At first it was every half hour or so, but by Tuesday afternoon it was every ten to fifteen minutes. One nurse had mentioned that they had these anal tubes that they could try with me, that would collect my waste in a bag. She said that she had only used them with comatose patients, so she didn't know how comfortable it would be. By Tuesday, after losing control of my bowels twice, I said, "Bring on the anal tubes!" It was awesome -- it wasn't that uncomfortable, and
I didn't feel quite so useless and could give my poor nurse a break.

I think I met with my nephrologist, Dr. Chang, sometime on Monday. He asked me lots of questions about my kidneys, and he said that he didn't want to start dialysis if he could help it. And he said that I would not be going home on Tuesday. I had figured that already.

Tuesday, I was still not able to breath well, and only through my mouth. I had trouble talking, and my voice sounded like an eighty year old smoker. I called my dad and he asked if I needed him to come out there to see me. I said, "Dad, I cannot ask you to come out here -- it's going to be a billion dollars and you can't do anything." He said, "Amy, do you need me to come out there?" I said, "Yes, Daddy, please come out here." There are times when you just need your daddy. So he said he and Jane (my stepmother) were going to make it happen.

That morning, Dr. Chang said that he thought we needed to start considering dialysis, which seemed terrifying to me. My kidneys had started making urine again on Monday, but they weren't doing anything else -- no filtering or anything. By noon on Tuesday when Dr. Chang came back to see me, I decided that that was when I had hit bottom. I was so sick and so unhappy and just wanted all this to end. So when he said we need to start dialysis, I was like, "Yes, yes, let's do it. And please hurry."

A really handsome vascular surgeon, Dr. Sanchez, came in to put in my quintin catheter (http://www.kendallhq.com/kendallhealthcare/pageBuilder.aspx?topicID=77048&breadcrumbs=0:121623,81037:0,70018:0). Basically I had two horns pointing out of the side of my neck from which to attach the dialysis machine. The procedure didn't take long, and he could do it right from my bed, so that was handy. Then that evening the dialysis nurse from Davita came to administer my first dialysis. It took three hours, and it was pretty late before she showed up, so I was kind of annoyed, but within fifteen minutes of that first session, I could breath through my nose again. I was so happy. Finally things were looking up!!!

I think I finally started to snooze some during that day -- Tuesday. I probably fell asleep during part of the dialysis. I would still see weird images when I closed my eyes, though. I kept thinking, well, let me at least conjure images of my mom, or of my kids -- nice images that would make me happy. But my brain wasn't having it. Maybe Brain thought those images would upset me since I couldn't see my mom or my kids. But at least I could get a little sleep.

At 4:00 am each morning, was the first blood draw of the day. Two mornings I had to have blood drawn from an artery instead of a vein. Those draws really hurt. So even if I did sleep, I was up at 4. But I would usually snooze until 6 or so after that. I think it wasn't until Wednesday or Thursday that I actually slept all night long.

I started having dialysis every other day. I was huge now, too. All that fluid had to go somewhere -- so I exploded like the Stay Puffed Marshmallow Man. My feet and ankles were humongous. I was too vain to let Todd take any pictures of me in that state!

Todd would come see me in the morning and stay until lunch time, then he'd usually come back in the evenings after the kids were in bed. It was great to see him -- seeing him was the highlight of my day. But I missed my kids an awful lot. I kept thinking I have to get better so I can go home to my kids. That helped keep me together.

Dad and Jane came on Wednesday, and my friend Barb -- a dear friend from Arkansas, came on Thursday. She is a neurologist. I love having so many doctor friends who can try to tell me what the hell is going on! I think I got moved into the Progressive Care Unit on Thursday, the 18th. Which was awesome, except that I had to share a room. My first roommate was a little old lady with blood in her stool. She talked about it a lot. Her daughter would visit and they'd just talk and talk. But they were sweet, and the daughter came to my side of the curtain to talk to me and she was so shocked by my situation and she called her friends and told them about me and they were all praying, which was very nice.

On Aug 20, Todd's parents brought the kids to see me. They weren't really allowed to, but the nurses let the kids see me for about fifteen minutes. I was in PCU at this point. I was so happy to see my babies. Oh my God it was amazing to see them. Hideo crawled right on top on my bed and snuggled up next to me. Emiko gave me a big smile and hug and brought me a beautiful Minnie Mouse hat with tiara from Disneyland to make me feel better. It was incredible. Then the nurses made them leave, but it was wonderful while it lasted.

Having Dad and Jane and Barb there was awesome, too. Just nice seeing familiar faces when you are so far from home. I stopped eating meat a couple of years ago, but Dad made me eat chicken while in the hospital. So once they let me off the liquid only diet, I did try some chicken and turkey. I wouldn't eat beef or pork, though. But all of the food was terrible, so I didn't eat much of anything.

When you have kidney failure, you get this disgusting taste in your mouth from the urea that is built up in your system. Which is just gross. So things taste different due to this. It's kind of a bitter taste and it's always there. Todd would try to bring me stuff that I normally love -- Starbucks vanilla latte, frozen yogurt, french fries. But all of it tasted terrible. It was heartbreaking! So I knew that I needed to eat, but there was nothing good to eat in that hospital. I did my best -- but it all just tasted awful.

Dad and Jane and Barb all left on Sunday the 21st. I was very sad to see them go, but it's not like they could stay forever. I still can't really believe they came at all. I can't even imagine how much they spent on airfare. It was great seeing them.

On Aug 22nd, my dear friend Darwin, who I went to school with in Gillett, AR, and hadn't seen since I was in 7th grade, came to visit me! He lives in LA now, and through the magic of Facebook we had reconnected. Prior to my getting sick I'd asked him how far he was from Corona. So I'm in my room bored and huge and probably crabby, and in walks Darwin! He is so sweet and such a good sport -- he didn't even mind sitting with me during dialysis. He said, "This is such a nice spa -- they even clean your blood!"

On the 24th of August they took out my foley catheter, which was fantastic, and they started making plans to discharge me. I was so ready to get out of that hospital. I had had a steady stream of specialists visiting me on a regular basis. In addition to the ICU doctor and the nephrologist, I had an infectious disease doctor, a cardiologist, a hematologist. I can't remember them all. It was a lot. They were all trying to figure out what the hell was wrong with me. All that was found in my blood was Group A Strep -- so Kyle thinks I had toxic shock-like syndrome, which is toxic shock syndrome, but with Strep instead of Staph, but no one gave me a diagnosis other than severe sepsis.

Since I was going to be discharged, they had to give me a different catheter. So they took out the one in my neck, and put one in my chest, attached to my jugular vein. Cute Dr. Sanchez did the surgery, and this time I had to be moved to surgery to do it. I enjoyed the anesthesia quite a lot, and was happy to have it, since before that procedure, I had to have a biopsy on my kidneys, which hurt quite a lot. That was a busy day.

I was discharged on August 25th, twelve days after being hospitalized! I have never been so happy to leave a place in my life. Todd brought me some clothes -- I told him to bring me my stretchiest clothes, as I was so huge now. I crammed myself into some pajama capris and t-shirt and hoped for the best. We had to go to the drugstore to get my prescriptions filled, and I was so glad that we were far away where no one knew me, as I looked like a crazy giant woman with no bra on. Walking was so hard -- being that heavy from all that fluid made movement a challenge. I was pushing the cart, which helped keep me upright.

We got back to Todd's parents' house, and I walked into the bedroom where Emiko and Hideo were staying. They were both napping, but I woke them up with my crying. I couldn't help it -- when I saw them I burst into tears. I have never been so happy to see them in all my life. The doctors and nurses kept telling me how close I was to death and how lucky I was to be alive. I was very strong in the hospital and didn't cry once, but seeing my kids and realizing how close they were to losing me was too much. I just cried and cried I was so happy. Emiko said, "Mommy, why are you sad?" I sobbed, "I'm not sad, I so happy. Sometimes people cry when they are happy. I'm just so happy to see my babies!" I couldn't stop crying. Hideo woke up and gave me the biggest hug.

I'm going to stop here for now, because I need a break. My next post will be about the rest of our stay in California post-hospital.


Heather E. said...

Reading this makes me want to cry. I love you so much and I'm glad you lived to tell the tale.

Samantha West said...

The strongest person I know! Love you Mrs. Fuji