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.
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