Thursday, October 13, 2011

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!

1 comment:

tera @ elgin eco-house said...

amy - this is such great news!!! what a crazy, long trip this was. i am celebrating you and your improved health!!!! love love love, tera