No, I’m not dead… yet. Just been very sick and busy and haven’t felt like writing.
After two weeks of IV Tobi and Aztreonam at home, the infectious disease doctor at UCLA, Dr. Gregson, decided to take me off Aztreonam and start me on Coli IV. I had to mix the Coli myself and the instructions weren’t very clear so I took too much for my first dose. This was the day before my birthday on Aug. 15th. Dr. Gregson warned me that it the dose was too much I would feel dizzy and drunk, so I might have to have the dose lowered. Well, since I took too much at first I expected to feel this way. So the whole day on my birthday I felt really crumby but I went out to dinner with family and a few friends anyway. The next day, Sunday, I felt better and went to The Harvest Crusades at the Anaheim Angels Stadium that night. Monday I felt okay as well. The trouble started Tuesday morning. I woke up and had a headache and felt a little off. I had pulmonary therapy that day at St. Jude so I went even though I didn’t feel good. As the morning progressed I felt worse so I skipped exercising that day and just went home after the class portion. I called Dr. Gregson to him I was having the symptoms he warned me about but I got his voicemail so I left a message. I stopped the Coli after my morning dose. The next day I felt worse; very dizzy, stumbling around, blurry vision. I called again and got him that time. He said to stop the med and I told him I hadn’t taken it since the previous morning. He said that was the right thing to do and to wait for the symptoms to go away. Thursday I had pulmonary therapy again and I felt even worse than the day before. My mom was debating my whether to take me straight to the ER or to the class. We went to the class and talked to the therapist who said I should just go to the ER across the street. So I went to St. Jude expecting them to say it is just a side effect of the meds. Nope! My blood test results came back and my creatinine level was about 8 when it should be .8… my kidneys were failing! I immediately called my transplant coordinator at UCLA and told him what happened and he made the arrangements to have me transported over there asap. I also called Dr. Gregson who felt really bad that he was the cause of this. I waited in the ER all day. I had Charles pack things and bring them to me while I waited. When the transport people got there and got me in the van I heard the driver ask which hospital and the guy in the back with me said UCLA Santa Monica. I told them that was not familiar to me and I think I am supposed to be going to UCLA Ronald Reagan. They said that is what the paper says but the whole time we were on the way there I told them they were wrong. We pulled up to an unfamiliar hospital at about 9:30pm and they got me out. They said I was to go to the 7th floor. We got in an elevator, guess what? NO 7th FLOOR!!! I told them once again that they were wrong and they still went looking for a nurse to ask how to get to the 7th floor. A nurse replied, “That the other hospital.” At this point I a fuming and so dizzy and sick to my stomach. They took me back to the van but had to sit there and wait for the okay from there superior before they could take off. We finally got the go ahead and I told them once again that I knew what I was talking about. We got to the right hospital about 10pm and they dropped me and my stuff off, had me sign a paper, and left… NOT EVEN AN APOLOGY! I was pissed but too sick to care enough. The next day they got a permacath in my chest to start dialysis. I only needed dialysis 4 times over the next 2 1/2 weeks. While I was there I started dry heaving all day and had stomach pains. I could hold anything in and didn’t eat anything for about 2 of the weeks I was there. They couldn’t figure out what was going on at first and tried different things like changing the formula, taking me off lasiks, and a few other things. We finally asked to be tested for SMA because I had that happen to me right after transplant. They finally got their specialist GI guy to come see me who immediately said I needed a J-tube, which is what my mom had been saying for days. We were very upset that no one had been listening to us for over a week, but we were relieved that they were going to do something about my stomach. They are guessing that the kidney failure caused my stomach to have extreme gastroparesis (slow emptying). The next day they replaced my g-tube with a j-tube. They kept me a couple more days to see how I was tolerating the feeds. I was finally let out on Sunday the 21st of Sept. When I got home I expected to bounce back at least a little. I had lost a lot of ground being stuck in bed for so many days. I could barely walk. I started going back to pulmonary therapy though. I had photopheresis scheduled for the next Wed and Thurs because I had missed my appt while I was in the hospital. During this time I didn’t get any better and became very discouraged and depressed. When I went to photopheresis I found out I was extremely anemic. She had to stop after just 3 out of 6 cycles. Dr. Slowik, my transplant doctor said she wanted to see me right away. I called to make an appt and the only day I could get was the next Thurs. Then they went on to tell me that I could no longer see Dr. Slowik and that she had been changed to seeing only new patients. I now had to see my old doctor, Dr. Liebler. I was so pissed that they did this without even telling me. So I waited around for the next week for my appt. I started feeling worse and worse and by Tues I was having trouble breathing just sitting still. I came to my appt expecting them to address my anemia and since I was seeing Dr. Liebler she had no idea what was going on. I asked to see Dr. Slowik and she came to see me as well. I told them my breathing had gotten much worse and I was so weak. I thought they would just give me iron and send me home. Instead they admitted me. I was a little disappointed but relieved at the same time because I felt like I was dying. They started me in IV iron once a day. I have been using my bipap all day and night the last few days to help me breathe. Yesterday they started me on the antibiotic Meropenum even though my spit culture hasn’t come back yet. I asked why and they said it’s because that’s the only one that won’t harm my kidneys. So far I have had a regular IV in my upper arm, the ones in my hands don’t work well. I asked if they could just access my photopheresis port instead of trying to find another vein. It just started hurting with this dose of iron I had right now so it’s time to change it. They said using my port was fine. They said I could go home after the IV iron therapy is done in 4 days. They are going to start me on epogen to start making new red blood cells with the iron.
I have yet to be reactivated on the transplant list even though my kidneys are perfectly normal now. They were supposed to have voted on me for the last 3 weeks but certain doctors kept missing the meeting… that’s the only reason! So my life hangs in the balance only because people can’t show up when they are supposed to. I am so pissed off by this! My doctor keeps pulling other random infectious disease doctors onto my case because he wants the full responsibility taken off of him. Everyone else agrees that having pseudomonas was no reason to have taken me off the list in the first place so how is it that hard to put me back on.
So that’s the medical news that’s been happening.
In other news, my kittens have gotten so big! I was so surprised at the difference when I came home from UCLA. They are about 2 1/2 months now. They missed me and so did Sammy. My wedding is in less than 2 weeks on the 17th. Mom has been working hard on my dress and almost has it done. I have been so stressed about the wedding and everything getting done while I’ve been too busy being sick. My fiance’s mom is making all the food and I’m so glad I don’t have to worry about that part. I finally got ahold of Pastor Gary Richmond, I had had his number wrong the first few times I tried to call him. He said he is having his second surgery to remove some skin cancer off his face on the 11th and might not be able to do the ceremony. After talking to him more he decided he would go ahead and do it but would probably need to sit during it and I said that’s fine with me because I’d probably be in my wheelchair too. I have to have my friend Evelyn practice doing my hair and makeup at least once before the wedding. We still have to get Charles a Tux or suit. I got tables and chairs really cheap through a friend from church. My uncle and brother are working on the music for the ceremony and reception. I just found out that my aunt from Florida is coming out too. I feel pressured to not cancel or reschedule because of this. I started going to a marriage class with mom called The Third Option on Tuesday nights. Unfortunately they just lost their federal funding. They are going to try to keep the class open and free of charge though. It’s only 14 weeks long anyway.