How I Spent My Summer Vacation: Sweet Home Chicago

For some reason, blogger isn't recognizing my paragraph breaks. Don't know what the deal is. Sorry about that. We got back to Chicago September 5, and I have never been so happy to see home in all my life. I moved to Chicago from Arkansas more than eight years ago (y'all know how much I love Arkansas!), and I've always considered "home" to mean Arkansas, not Chicago. But as we got to our car at the airport, I felt like I was finally at HOME! We got home after eating our dinner at Culver's. It was around 8:00 pm, I believe. We put the kids to bed -- they were so happy to be in their own rooms! Todd and I watched some TV and he played on his iPad while I was reading my email. Around 10:00 I was super exhausted and ready for bed. Sleeping in my own bed with my own pillow was like heaven. That night I slept better than I had in weeks. I am not sure I even moved until morning. Emiko had had some trouble sleeping after I got out of the hospital -- she was still pretty upset about everything, even after I was discharged. But she slept well that night, as did Hideo. I think they even slept until around 7:30 or so the next morning, which is extremely exciting! I was scheduled to start dialysis at Davita Dialysis Montclair on Tuesday, September 7. Which was also the first day of school for CPS. But as I was on medical leave, that was not a concern. It was very weird to not go to work on the first day of school, however. Anyway, I had dialysis scheduled for that afternoon -- I think I was scheduled for the 2:00 pm to 6:00 pm shift like I was in Norco. Which was going to be an issue, because on days Todd was out of town, I was not sure how I was going to be able to pick up my kids in time. So I was nervous about this before I even got to the dialysis center. Kyle had told me that I was not allowed to drive to dialysis. Todd agreed with him. At first I thought, sure, I'll just take the bus. That'll be ok. But as I prepared to go to dialysis, I decided that I really wanted to drive. I did some internet research, and nowhere did it say not to drive. Just to take it easy. They always take your blood pressure, both sitting and standing, right after you finish dialysis, to make sure you don't pass out of anything. Sometimes you can crash because they are taking your blood out of your body, cleaning it, and replacing it. Sometimes they get carried away. There was one session in Norco when I crashed -- it was during dialysis, though. Suddenly I broke out in a cold sweat and got super light headed and thought I was going to throw up. There was no nurse around me right at that moment. I tried to get myself together and started waving my arms to get a nurse's attention. So I knew what to look for as far as not being able to drive myself home. I made an executive decision. Todd was not very happy about that. I was nervous, but I got there fine and I got home fine, too. I had already had to drive the kids to Alma's house, so I figured if I could drive my children around, I could take myself to dialysis. I was terrified taking them to Alma's that morning. I hadn't driven since before I got sick, so I was scared I had forgotten how. Luckily it's like riding a bike. Once I got to dialysis, I met with my social worker. They always give you a social worker, since kidney failure is awful and I guess they worry about your mental health. I had two social workers at that first session -- one named Vicky and it was her last day, so she was training the other one, whose name I've forgotten. I don't know if I ever knew her name, to be honest. I remember Vicky, though, because I thought she was a bitch. She was looking through my paperwork from Norco Dialysis and asking me all these questions. Then she said something about needing to perhaps get on the transplant list. I said that I was suffering from acute kidney failure, not chronic kidney failure, so the transplant list wasn't something I was concerned about. She looked at me very condescendingly and said, "Well, at your point in your therapy, you are probably chronic. I don't think your kidneys are coming back." I felt like I had been punched in the stomach. I said, "I have a team of doctors who have all indicated to me that my kidneys should make a full recovery. No one has said a word to me about chronic kidney failure." She looked at me again with that condescending smirk on her face. She said, "Well, maybe they will come back, but I've been doing this a long time, and I just don't think they are going to. Your numbers are still really high." I told her that I had a kidney if necessary -- that my sister had already told me she would donate her kidney to me if necessary, but I truly believed that my kidneys would recover. She tisked at me again, and I said, "Look, you have to stop talking about this or you are going to make me cry." She's like -- oh, we don't want you to cry your first day here... I hated that woman. Then I filled out a bunch of forms and Vicky the Bitch explained to me that they were going to submit my paperwork to Medicare to see if Medicare would pay for some of my expenses. Once you get kidney failure and have dialysis, you automatically qualify for Medicare. She said that whatever my insurance didn't cover, Medicare would cover instead. I have not heard another word about Medicare, so I should probably look into that. I know my insurance company would like Medicare to pick up part of the tab. Finally I got to go into the dialysis room and was led to my recliner. There was a man sitting next to me who was probably in his late 50s who I could tell thought he was really hilarious. He kept trying to flirt with the nurse. I decided my best bet was to avoid eye contact. Again I was the youngest person there by a good twenty years. One of the dialysis nurses was a man with lots of tattoos -- I have forgotten his name. And the other nurse I met was named Evelyn -- she was very sweet. I also met Kris, who is the dietician. She was also nice and helpful and gave me more details about the "kidney diet," which no one in Norco had really explained to me. The kidney diet doesn't make much sense compared to what I consider healthy eating. You can't eat wheat bread -- you have to have white bread. Crazy, huh? But when you are on dialysis, phosphorus is a huge deal. Normally your kidneys remove excess phosphorus from your body, but since my kidneys were still mad at me, that wasn't happening. Too much phosphorus can cause hardening in your bones and heart and can leach calcium from your bones. Phosphorus is in everything! So dark colored soda was out, as was chocolate. I love chocolate, so this was sad. Although I had already had to remove it from my diet thanks to the urea, so I was at least used to it being gone. Sort of. Potassium is the other big thing you worry about with kidney failure. Usually kidney patients have too much potassium, which can lead to high blood pressure. My potassium was low, however, so I was actually taking a potassium supplement. And my phosphorus levels were always good, so that was something. At the end of that session, Kris brought me a jug and a funnel thingy so I could do a 24 hour urine collection. Starting the following morning, after my first pee of the day, I had to pee in the funnel thingy and put the pee in the jug so they could see what my urine was up to. I guess many kidney patients lose their ability to pee altogether -- my peeing was a good sign. I had already noticed that my pee looked more normal than it did before. When I got out of the hospital, my pee was very clear and didn't really look like normal pee -- just looked like pale yellow water. Barely yellow. But I had noticed once we were back in Chicago that my pee looked more substantial and pee-like. This coupled with my taste buds seeming to work better (remember those hashbrowns at the LA airport Burger King?) made me feel like maybe things were happening. I did not see the nephrologist that day, so I didn't get to ask him about my recovery or anything like that. When I got home, after the kids were in bed, I was telling Todd about my session. I told him about the Vicky bitch being mean to me and saying that my kidneys weren't coming back. Then I burst into tears. I said, "What if they don't come back????" I couldn't stop crying. Todd gave me that look that he has that says I'm a crazy person. He said that she wasn't a doctor -- just a social worker -- and that I had actual doctors, including two of my best friends and his brother and sister-in-law, all saying my kidneys would return. I knew he was right, but seriously -- I had every reason to worry. I do not think I can explain just how awful this whole experience was, and dialysis was so not fun. There were a number of times during this ordeal when I really wanted to drink -- this was one of those times. I collected my pee the next day and Thursday I went back to dialysis with my jug of pee. I was very glad I did not have to take a jug of pee on the bus -- that would have been so embarrassing. I sat down and the nurse hooked up the dialysis machine to my catheter. I had a male nurse this time, named Omar, and I remember thinking that it was weird that he didn't clean my catheter site. Usually they clean my catheter site and then hook me up to the machine. I thought maybe he didn't feel comfortable, like maybe my catheter site was too close to my boobs or something? Which seemed weird since he was a nurse. Anyway, I forgot all about it once dialysis started. Two hours into that session, Dr. Kuznetsky, the medial director of the center and nephrologist, came to see me. I was on the phone talking to my dad at the time -- my dad called me every day during my medical ordeal. I said, "My nephrologist is here, gotta go. Love you!" Dr. Kuznetsky said, "You love me? You just met me!" I replied that I was sure it would be love, ha ha. Then he told me that my numbers looked great and he thought that, "Your kidney failure is resolving itself." I was so excited. I said, "See, I knew I loved you!" He really wasn't that nice or friendly, so these were awkward exchanges, but I was so happy that I didn't care. He told me that they were going to stop dialysis today, and that I did not need to come to dialysis on Saturday like I was scheduled. He said I was to get my blood drawn on Monday, and come see him Tuesday and my blood work would determine if I required any more dialysis. I was floating on air I was so excited. Evelyn the nice nurse came over and she was super excited. I told her what Vicky the bitch had said to me; she couldn't believe it. I told her if she saw her to make sure to tell her she was wrong wrong wrong. Kris came over and congratulated me, too, and gave me a Rice Crispy treat for having a low phosphorus level. It was the best Rice Crispy treat I've ever eaten. I got to my car and was shaking I was so excited. I called Dad back, then called my sister Heather. I called Todd and said we were ordering dinner to celebrate! We ordered Friendship Chinese -- that's the fancy Chinese restaurant that delivers to us. Definite celebration cuisine! I had assumed that this dialysis center was the one my insurance used, since I had given the dialysis people in Norco my insurance information when they were making my arrangements for dialysis in Chicago. So when I went to the hospital Dr. K sent me to on Monday for my blood draw, I was a bit concerned, as it was not the hospital in my insurance network. I guess I thought they would bill the dialysis center or something. Anyway, they wouldn't do my blood work since my insurance wouldn't cover it. I went back to the dialysis center and asked what to do. Finally they sent me to my hospital and told me to have the lab fax over the results to them. Tuesday I went to the dialysis center and just sat there, waiting for Dr. K. So glad I have a Kindle. He finally gets there about 45 minutes later. He asks if I went to the lab at his hospital. I explained the situation and he acts like I'm an idiot. The manager comes out -- she wasn't very nice, either, and asks where I got my blood drawn. I said I went where you told me to go yesterday. She says she'll call the hospital. So I waited another 15 minutes or so and the fax comes through. My blood work is great! My creatinine levels are almost normal! Dr. K says I'm done with dialysis! I'm floating on cloud nine again, but then I remember my stupid catheter, which you may recall has not been cleaned since Thursday of the past week. I asked Dr. K what I should do to take care of it. He said, "You don't do anything with it. You get rid of it in the next two days before it turns septic. Just go to your hospital -- I'm sure they'll take it out for you." Then he hands me a prescription that says on it "remove permacatheter" with his signature. I'm thinking - dude, I have an HMO. I can't just go to the hospital without a referral or something. But whatever -- I figure it out. I get home and make more celebratory phone calls, and then I call my primary care physician's office. It occurs to me that they have no idea what the hell is going on. I leave a detailed message for the referral nurse, requesting a referral to get my catheter removed. And I'll stop there for now, because I'm tired and need a break!

How I Spent My Summer Vacation, Chapter Two

When I first got moved to the progressive care unit, I was in a shared room, and my bed was next to the window. The bed on the other side of the room was next to an actual bathroom. I coveted that side of the room. I had to use a potty chair, which is an improvement over a bedpan, but still pretty gross. So when one of my many roommates got moved out, and I started feeling better, I requested to be moved to the other side of the room. I had asked for my own room, repeatedly, but told there were no private rooms and they were too full for me to have my own room.

But they did move me to the other side of the room. Getting to use a real bathroom was amazing. It was also hard, because by now I weighed more than sixty pounds more than normal. They had pumped me so full of fluids that I was ginormous. I had to work hard to get out of bed and then walk the two or three steps to the bathroom. There was no way I was going to complain, though, for I didn't want to give them any reason to think I needed more time in the hospital.

When I went to the bathroom, I had to hold on to the hand rail by the toilet paper dispenser and pull myself up with all my might. I considered that my daily exercise! Todd, being the scientist that he is, figured that sixty pounds is the equivalent to five gallons of fluid. Imagine having five gallons of milk attached to your midsection. Very hard to maneuver with that much extra bulk.

It was determined that before I was discharged, I had to prove that I could walk around. They sent me a physical therapist who was to ascertain that I was capable of walking without assistance. So she and I walked around the hospital floor a bit. I got to put on two gowns -- one backwards over my main gown so that I would not flash the other hospital occupants. That first walk about kicked my ass. Again, I didn't say a word about it. I'm like, "That was great! When Todd gets here, we'll walk some more!" Which we did -- he's very fussy about following directions! More ass kicking, but I knew I had to do it.

I already mentioned my post-hospital attire. I'm still embarrassed that I had to go out in public like that. And of course, I had to get prescriptions filled, and that takes forever. So I had to walk around the Albertson's grocery store looking like a giant crazy lady. My dialysis catheter was poking out of my shirt. At that point I didn't know I could tuck the tubes into my bra. Of course, I wasn't wearing a bra. Lovely. My huge fat pig feet could hardly fit into my Birkenstocks. And it was hard to walk. I was pushing the grocery cart, which was a good thing. It kind of acted like a walker. I didn't think I would actually fall down -- it kept me up.

I tried to think of what food I would even want to eat. I bought some Grape-nuts -- my favorite cereal normally. (Grape-nuts has been my favorite cereal since I was a child -- isn't that weird?) I bought some potatoes. I don't remember what else we got. Some bread, I think. I seemed to have the most success with carbs, so a carb-heavy diet seemed like my best bet.

I already talked about seeing my kids and crying crying crying in joy. Emiko will still mention my being sick and how much it scared her. When I mention going to the doctor, she'll ask, "Mommy, are you going back to the hospital?" I have to promise her that I'm just going to the doctor and will be back home soon.

I started dialysis at the dialysis center the Monday after I was discharged. I went from 2-6 on Monday, Wednesday, and Friday. I was going to the Davita dialysis center in Norco, CA, the "Horse Capital of the World." It probably is -- there were a billion horses. Norco even has horse trails in residential neighborhoods. It is kind of neat.

Dialysis sucks, which I have already mentioned. It's four hours. They keep the dialysis center really cold, so the first time I was there I froze for the whole four hours. I asked the nurse for a blanket, and she didn't have one, so she brought me a paper lab coat and I put that on, which helped. I would doze for the first hour or so, but then I'd be super bored.

I do have a Kindle, thank goodness, but I found that I didn't really feel like reading while doing dialysis. My brain felt very muddled through most of my illness. At the center, we sat in recliners and each recliner had it's own tv set, so I could watch tv. So I would watch some tv. I would check my email on my phone. I would stare around the room. There was no one I wanted to talk to. I was the youngest one there by a good thirty years.

The nurses were nice, and there was one nurse who was punk rock and Asian, so that was interesting. I forget his name, but he wore skate shoes and had a mohawk and his ears pierced. So he was my favorite nurse. He reminded me of a younger Todd. He was never my nurse, but he would come by and say hi, and he would talk to me about my Vibram Five Fingers shoes.

Todd would come pick me up and we would try to figure out what to feed me. One afternoon we went to a Middle Eastern place and I ordered falafel. I love falafel. One of my favorite things. With hummus. Then I walked over to Starbucks and got a venti Passion Fruit iced tea lemonade. I couldn't wait to get back to his parents' house to eat this meal.

I couldn't eat it. Stupid urea. I gave my kids the lemonade. I think I ate a baked potato. I ate a lot of baked potatoes.

The first couple of nights out of the hospital, I snored like a freight train. It was all that fluid! I did not sleep well. The first week of dialysis in Norco, they started to try to remove some of the extra fluid. So each time I would lose about ten pounds, which made me happy.

The second night I was home, I was in bed with Todd and I burst into tears. I said, "I hate this. I cannot take this. Todd, you have no idea how awful this is. I can't do this." He looked at me like I was crazy. He replied, "You almost died. You aren't dead." I tried to explain my feelings. I said that I'm so glad that I did not die -- but this also sucks. I will explain that more in my next post.

It was awful. Food tasted awful. I couldn't pick up my kids. Hideo wanted me to pick him up every time he saw me, and I could not pick up my little boy. I had no strength whatsoever. I hate feeling helpless, and this was all about my feeling helpless.

Todd's mom, who like I said was wonderful this whole time, kept reminding me how lucky I was to be alive and "Praise God." It was hard not to respond with a snarky remark. I was really crabby one day and had to keep biting my tongue. That was the Saturday after I got out of the hospital, I think.

The next day Kathleen decided we would go to a Chinese buffet for dinner. I was all for it -- I was sick of making myself baked potatoes while everyone else had nice meals for dinner. The buffet was pretty good, and the food tasted GOOD! That was when I realized that Chinese food tasted right -- unlike anything else I ate. So Todd kept finding us new Chinese places to try. Kyle had told me that I needed to just find something that I could eat and to eat it, whether or not it was healthy, so I could get well. Chinese diet it was! We found one dumpling house out there that was so good I still think about it!

At this point, eating Chinese was the high point of my existence. Well, that and being with my family. My kids would sit as close to me as they could -- I'd sit on the couch with my feet up, and I'd have Emiko on one side of me as close to me as possible, and Hideo on the other side smushed up next to me. Hideo still sits next to me that way.

I saw my nephrologist Dr. Chang my second day at Norco dialysis. He said that he still believed that my kidneys would come back -- maybe in six weeks or so. I had decided that I would have to take a leave of absence from work. At first I still thought I would be able to go back to work when we got back to Chicago. Todd had changed our tickets from a return date of August 16th to a return date of September 5th. I figured I would just go to work for the first day of school.

The first person who suggested that would not work was one of my dialysis nurses in the hospital. She's like -- you'll have to take a leave from work. I asked her why and she said that dialysis was four hours a day, three days a week, and I would probably not feel like working around that. I said I thought I would go to work and then go to dialysis. She snorted and said she didn't see how that would work.

Turns out she was right. After my first session in Norco, I was shattered. I was so tired and felt like I'd been wringed out. So I filled out my paperwork to take a medical leave of absence from work until October 17th. I picked that day randomly.

When I would do dialysis, the nurse would clean my catheter. She would always remind me that it couldn't get wet -- that that could lead to infection. So I was terrified of this stupid catheter. I was told that I couldn't take baths or showers, only sponge baths. But there was no way I wasn't going to bathe. So I would tape a plastic sandwich bag over the catheter. I only got it wet once, but it did result in a scolding by the nurse the next session. But I was constantly in fear of getting an infection from that stupid catheter.

The second week at Norco Dialysis was my last week in California. That week the nurses focused on getting rid of all the excess fluid. This made me very happy. They would take off eleven or twelve liters of fluid each time. So by the end of that week I was back to my normal weight and my feet and ankles were normal again. This made me happier than I can express.

One day that week my dear friend Tera came to visit me. She lives in South Pasadena and we've been friends since right after college, I guess. A fellow Arkansas gal, and she's an incredibly positive and uplifting person. It was wonderful to see her. She had been out of town and had found out about my medical adventures after the fact, so we spent some time with my filling her in. We talked about her job -- she's a youth organizer for the Unitarian Universalist church, and she was preparing for her ordination into the UU priesthood in September. We had a really nice visit. I wish I could see her more often.

We left Southern California September 5th, twenty five days after having arrived for what was supposed to be a short visit. I was scared of the trip home -- I was worried about getting through security and was hoping that Hideo would be ok. He was really good on the flight home. I was able to carry him through security without too much trouble, and all in all it was uneventful, thank God.

We got to our car, which was still there after twenty five days. Our parking fee was $425. When we got in the car, it made a really loud grinding noise and the initial ride was super bumpy. Todd stopped the car before we got out of the parking lot, in fear that we had a flat tire or something. The tires were fine -- I guess my car was just out of practice, having sat undriven for so long. I thought, "Please let us get home safely!" We hadn't eaten, so we stopped at Culver's for dinner in Rosemont. I had the fried fish sandwich, and it tasted good to me, so I ate the whole thing. I ate my fries, too, and they were good. Things were looking up. I even tried some of Todd's frozen custard, and it was good. This was a sign that maybe my kidneys were up to something good. I had noticed at the airport that morning that Todd's hashbrowns from Burger King tasted really good -- that was my first inkling that maybe things were improving. I was scared to get my hopes up, but I figured if I could eat more food than just Chinese, that was progress and I'd take it.

I will write the Chicago chapter of this saga this afternoon or tomorrow. Right now I need a break. Plus I forgot something to add to my addendum.

How I Spent My Summer Vacation, Addendum

There are a few details I forgot from my last post, so I want to fill some things in before I proceed with my tale. It's hard to keep up with everything, and I keep remembering stuff. Which is good -- I definitely want to record of my adventures.

First I thought I'd catalog what I ate before getting sick. Fascinating, huh?

Things I Ate

On Thursday morning (8/11), before leaving for the airport, I ate a peanut butter and banana sandwich. It was peanut butter from Whole Foods -- the kind where you grind your peanuts yourself. With fig preserves. And I had a cup of coffee with soymilk and sugar free vanilla syrup. At the airport, I'm pretty sure I had a grande sugar free vanilla soy latte from Starbucks.

Once we got to LA, I ate the two bean and cheese burritos from Del Taco that I mentioned in the last post. I ate a few of Emiko and Hideo's french fries.

After escaping the ghetto funeral, we made it to the Farmer's Market in Hollywood where I had the Pinkberry frozen yogurt and we picked up the pie. At Todd's parents' house, I ate grilled salmon. I ate some steamed broccoli and maybe a salad, too. I forgot to mention that I did eat some of the Dupar's chocolate meringue pie. I can't remember if I talked about my egg issue -- that eggs make me sick since I was pregnant with Hideo? So when I felt nauseated that evening, I just blamed it on the meringue.

Friday morning I had cereal with a banana for breakfast. We had Wahoo's Fish Tacos for lunch -- I had the tofu teriyaki bowl. That was the last thing I ate prior to going to the ER a day and a half later.

The Ants

At first I thought the ant infestation was a hallucination, but it actually happened. At some point on Saturday, I noticed ants crawling all over my bedroom. I hate ants, so this completely freaked me out, and I felt really crappy already, so this was not helpful. Todd was still on his run (remember I was mad at him?); he missed out on this part of the festivities. Kathleen kept coming in my room to vacuum up the ants and to wipe down the bedside table. I remember ants crawling all over that table. Ants were crawling on my iPhone. There was a stream of ants crawling down from the ceiling next to the door, and another stream of ants crawling down from the window on the other side of the room. Ants were crawling into my suitcase. It was awful. Ted was outside trying to spray them.

I joked to Ted that this was probably karma, because earlier that morning a guy had come by to try to get Ted to sign up for his extermination service. Ted told him he already had a service. Is a rather strange coincidence, huh? The ants were in the guest bathroom, too, so as I would go in there to throw up some more, there were the ants. Gross.

The ants is why the vacuum cleaner was in the hallway next to the wall. When I passed out and left the hole in the wall, I landed with my head wedged between the baseboard and the vacuum cleaner. Todd took a picture of the hole. I keep bugging him to send me the pic so I can post it. I'm working on it. I have to walk the fine line between reminding him gently and nagging him. He thinks I cross that line immediately. That's another post...

Ice Bath from Hell (or the Arctic)

After the ants incident, Todd made it home from his run in Huntington Beach. I scolded him for abandoning his super sick wife. He took my temperature, and it was like 105 degrees or something ridiculous. He called Scott, and Scott said we had to get my temperature down, so I needed to take a cold bath. I was fine with that -- but Todd decided that I needed an ice bath. He actually went to the store to buy a bag of ice. I got in the tub in the meantime, and felt that the cool water was sufficient. But not according to Todd. So he barged into the bathroom while I was in the tub and dumped the ice into the tub with me. It was so fucking cold! I screamed and fussed and hollered about it, to no avail. He kept saying that as I was a runner, I shouldn't mind ice baths. I told him that I don't believe in ice baths, even for runners and to stop putting ice in this tub! It was so cold. I was freezing and my teeth were chattering. He put at least half a bag of ice in that stupid tub.

I decided that while I was in this tub, I may as well do some cleaning, so I did bathe and wash my hair, cursing him and shivering the whole time. He left at some point, and I got out immediately. So there.

It did bring my fever down a couple of degrees, but it was still over 102 degrees. In the ER, I was freezing and I kept requesting blankets. They had these blankets that were right out of the dryer, so they were so warm and it felt marvelous. But the a nurse took my temperature and it was up to 104 again and she freaked out and took my blankets. I don't know why I was so cold when obviously my body was super hot. I was freezing that whole day and into the next.


More Details From the Hospital

My dad came to visit while I was in the hospital, and I was so glad to see him and Jane, my stepmother. When they first arrived, I was still on a liquid diet, which was not fun at all, but I didn't want to eat anyway. For breakfast I would get oatmeal or cream of wheat -- I'd eat those. Whole milk, and I don't really drink milk anymore, much less whole milk, so that was not my favorite thing. I kept requesting apple juice. At this point the urea wasn't that strong in my mouth, so things tasted ok, I think. For lunch they would give me either potato soup or broth of some kind. I would not eat the broth. They didn't have Sprite in the hospital, but the nurses would bring me Shasta, which is not the same. I drank lots of water.

On the second day I started peeing again, and at first I was super excited, but I quickly realized that the peeing didn't really mean anything.

The afternoon after Dad arrived, my nurse said I could have whatever I wanted to eat -- that I didn't have to just have liquids. So she brought me the lunch entree, which was a breaded chicken breast with gravy. I think it came with rice pilaf and some steamed veggies. I stopped eating meat other than fish and seafood a couple of years ago, but my dad said I had to eat that chicken. I was going to argue with him, and then I thought, "Well, I guess I can have a severe sepsis and kidney failure exemption." I ate that chicken and I don't know if it was just not having eaten in several days or that I hadn't eaten chicken in a couple of years, but I ate the whole portion and thought it tasted good. I was afraid it might make me sick (sicker?!) but it didn't. After that I ate the meat in the entrees, but only the poultry. I didn't want to eat any beef or pork. Soon after, the urea started affecting my taste buds and the poultry tasted gross, too.

When my taste buds went all haywire, things got kinda miserable in a different way. The dialysis was helping so I could breathe, which made me happy. But not being able to eat anything when I wanted to really sucked. Todd was so sweet and tried to bring me treats each day. One day he brought me my beloved Starbucks sugar free vanilla soy latte. It tasted awful. A couple of times he brought me frozen yogurt. It was gross. One day I wanted a muffin. Still gross. Heartbreaking!

Everyday different specialists would come to see me and ask me the same questions. What did I eat before I got sick? Did I have a urinary tract infection before this trip? Have I ever had kidney problems before? Have I had surgery before? I would tell them what I ate. I told them that I had no UTIs. That one always made them skeptical. I would respond, "UTIs are super painful. Had I had one, I'd know it." They never seemed satisfied by my answers, but I wasn't all that satisfied by their answers, so I figured we were even.

And my sweet dear sister was trying her best to help. Heather called me everyday, and she is one of the few people I can be completely honest with, so I could tell her how scared I was or how much all of this sucked. She asked me one day if my doctors knew that I had an IUD. She had seen an episode of House where the IUD was the culprit. We thought this might be the break we were waiting for! I was excited to mention this to my infectious disease doctor. He said, "Hmmm. You are a mystery." It was an underwhelming response. I guess most women would consider being mysterious a compliment, but I got really sick of hearing that.

I also got tired of hearing about how close I had been to dying. That is going to be a future post. Such a realization brings up a host of complicated emotions that I feel I need to explore further.

My hematologist was Dr. Young. He was Chinese and very intense. He had a rather distinct accent, so it was kind of hard to understand him. He would come each day and ask me the same questions as I listed above. The last time he came to see me, he was all excited. He said, "I want to test you for HIV!" He looked almost gleeful saying that, as if this was the best idea ever. I'm like, "Go for it." I'm thinking, I've been with my husband for more than eight years. We've both been tested before we got together. But if it makes you happy, Dr. Young... He never came to see me again, so I guess the results were to my advantage.

When I was finally discharged, Todd and I went to the nurses station in ICU to give those nurses a box of chocolates to thank them for their great care of me. I did have excellent nurses. I saw one of my nurses there and she gave me a big hug. I also gave chocolates to the PCU nurses -- they were good, too. Todd's brother was concerned about my going to Corona Regional versus a bigger hospital -- he's a resident at UC Irvine's hospital. But as he mentioned to my mother-in-law, it actually worked out better for me. UC Irvine is a teaching hospital, so I would have been seen primarily by residents. At Corona I had all specialists all the time. That hospital doesn't have a very good reputation apparently, but they did right by me. I'm alive to tell this tale, so I take that as a good well done on their part.

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.