Hospital Time… yay

It’s easier to copy and paste what I wrote on FB. So here goes:

2/9: I’ve been in the ER all day. I was supposed to go to a diabetes appt this morning but on my way to the freeway I was having such a hard time breathing without my bipap that I decided to just go to the ER instead. I have been needing to use my bipap again the last couple of days. All night last night I was even having trouble breathing with it on. They are going to transport me to USC Keck Hospital in about an hour. I don’t know what they can do for me but I feel safer being in a hospital than at home right now.

2/10: So I’ve been at USC Hospital since Monday night. They are treating my pseudomonas because that is the only thing they can do, even though I’m not having an active flare up. They also decided to raise my prednisone to 40 mg/day for a few days. Once I get tapered back down I will start feeling worse again though. At least they finally agreed to have my bipap settings turned up, since even that is starting to feel like it doesn’t help as much. I’m still on hold on the list with UCLA and I don’t really know what their plan is right now.

2/12: My docs here at USC finally got ahold of my docs at UCLA. The UCLA team finally has a set plan for treating my very resistant pseudomonas. They want me on 2 different IV antibiotics and inhaled Tobi, as well as Noxafil and an IV antifungal for the fungus in my lungs. I think this means UCLA will reactivate me on the list soon, at least I hope so. They also finally agreed to turn up my bipap settings, which I have been asking them to do for a few months now. So things are looking up and I should be going home soon. I think I am going home tomorrow actually. I got my port accessed today. I was able to walk 3 laps today and was able to come off the bipap the whole rest of the day. They are going to start tapering my prednisone tomorrow morning so I will probably begin feeling worse again.

2/14: I got home last night from the hospital. Charles bought me a nice orchid plant and had it waiting for me on my desk. Charles took mom and I out to lunch/dinner at the Black Bear Diner. I think I might have ulcers again because there was a lot of red and pink coming out of my tube and I didn’t eat anything that color. I want my stomach to be empty tomorrow morning so I can check for blood again. I really hope I don’t have ulcers and need another blood transfusion like I did a couple years ago. That might give me more antibodies and effect transplant. I still haven’t heard anything about what’s going on with UCLA and the list. I called Jay late on Friday so hopefully he will get back to me on Tuesday since Monday is a holiday.

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Update

I haven’t written in a while. Not much has happened. I had a transplant appointment with USC a couple weeks ago. At the time I was just getting over a cold. Then the next day I suddenly started feeling horrible. Not as if it was a cold or sickness, I just couldn’t breathe as well. This happens often for no apparent reason and lasts for weeks sometimes. So since then I have been feeling worse than normal. I have had to start using my bi-pap during the day when I’m just sitting at my computer. If I don’t use it I breathe very shallow and fast and can’t take a full breath. I have been getting more headaches doing very little activity like brushing my teeth or getting dressed.

I had another appointment on Tuesday. This one was for GI to replace my j-tube, that I’ve had put in in August, and put a g-tube button back in. That went well and I’m so glad to have a button again. The j-tube is so annoying and bulky. You have to be careful not to yank it on anything. Even though my stomach isn’t working that well still and has quite a bit of gastroperesis (slow emptying of the stomach), the doctor agreed to let me switch.

I was supposed to have an appointment with my UCLA transplant doctor last Friday but they had to reschedule me. Originally they were going to make the appointment for the 30th but I said I was feeling worse and didn’t want to wait that long so they changed it to today. I went this morning and my other transplanted friend, Brianne was also having her appointment that day. I hardly ever get to see Brianne so it was really nice to catch up with her and her mom. I have known her for several years and we have gone to all the same hospitals and had all the same doctors our whole lives. She had her transplant right before me at CHLA. She is doing great though and had very little complications over the last 6 years, while I have had the exact opposite.

So anyway during my appointment I told my doctor that I got my j-tube switched back to a g-tube. He got mad at that saying that I shouldn’t have because after my next transplant, with all the morphine, my stomach will probably stop working again. I did consider this before I had it done, but I thought it wouldn’t be such a big deal and they could just switch it out in needed. I told him I was sorry and that he was probably right that I should have asked first. BUt what’s done is done and we’ll just have to cross that bridge when we come to it. I really don’t think it is that much of a hassle to change it back to a j-tube. Even though they have to use floroscopy, it’s not that hard to get one in. So I was a little upset that he was so mad at me because I have always felt that he doesn’t like me very much and I just want to me a good patient to all my doctors. I was able to redo the 6 minute walk test and the pulmonary function test. Hopefully the results will give me a higher score and bump me up on the list. I called on the way hope to remind my coordinator to call me about where I will be on the list now. Hopefully he will call me back tomorrow.

Not much else is happening in my life right now besides doctor’s appointment. Well there are a few things. My mom hasn’t been over here helping me as much because she has to help my sister move out of her apartment. My sister is getting kicked out because the manager is finally fed up with my sister ruining the apartment. My sister lives like a complete slob and is a hoarder. She has caused all four apartments there to become infested with roaches. To top of this soap opera, we all just recently found out she is pregnant again. She waited 6 months to finally confess to it. Most of us just thought she was fat because she has remained looking pregnant since her second kid was born. So this will be her 5th kid and it is finally a boy so she might stop now. My ex-friend once told me that my sister confided in her, saying that she will keep having kids until she has a boy because she really wanted a boy. Hopefully she will stop now. She is a welfare queen. She doesn’t do a damn thing all day and lives off SSDI because she is “bi-polar.” So basically she gets paid to sleep all day and pop out kids. As you can tell I am not fond of my sister. Okay, rant over.

It’s been a while.

I haven’t written in a couple months but that’s okay, not much has happened. I caught a slight cold on Thanksgiving from my cousin. It has made doing physical therapy almost impossible. I get too out of breath to do much of anything when I go but that hasn’t stopped me from trying my best. I actually feel quite stable right now even with this cold that’s dragging on. I took a higher dose of prednisone for a couple weeks right after the wedding to get a boost, then I tapered back down to my normal dose. I was afraid I’d start feeling worse again once I lowered it but I didn’t and I think that’s because I tapered it down.

Oh some big news is Charles and I decided that we are making it our “within 5 years” plan to move to Portland, Oregon. I have always wanted to move out of southern California, preferably up north. I have two friends that live in Oregon, one in Klamath Falls and one in Beaverton, totally opposite directions. We are most likely going to move once I’m kicked off my dad’s insurance because California government health insurance sucks. We are definitely waiting until after my next transplant. I will then go to Seattle for my transplant care and probably Portland for my CF care and everything else. There are a lot more job opportunities up there for young adults as well so hopefully Charles will find something he actually wants to do for the rest of his life. I’m so excited that we have decided this is a for sure future goal. I’m already comparing apartment prices in the outer Portland area.

I’m also excited for Christmas. It’s coming up so fast. I just got most of the gifts I’m giving people come in today. I hope the others come in time. Oddly I actually hope I don’t get my transplant until after Christmas because I want to be with my family. I’m going to make spiced nuts like I did for Thanksgiving. They were really delicious and I totally winged the recipe too. I wanted to try making cookies again this year but I know it will really be mom making them and she is too busy and stressed out all the time. Last year we burnt most of them. I also made the cranberry sauce again this year but I didn’t put in enough sugar this time and too much orange zest so it wasn’t very good. I’ll do better next year.

We finally sent to two girl cats to my mom’s house and only kept the boy which we decided to rename Moby. He’s so cute and lovable. I think he thinks he’s a dog because Sammy raised them. Mom says he’s much bigger than his sisters. We still haven’t paid the deposit for Moby but the manager hasn’t bugged us about it so I think he keeps forgetting. I don’t think a cat should cost $200 freaking dollars! Sammy was only $100.

I haven’t had an update about my place on the list since they reactivated my in Sept. Back then I had 8 people ahead of me for my height range and blood type. I called Jay and left a message about it today. Hopefully he will call me back tomorrow with good news that I’ve moved up. I am sure I have. They do almost 1 transplant ever week. I hope I get it soon because I’m afraid I’m going to fall into a funk and stop being motivated and positive and upbeat like I have been the last few months. I get like that every once in a while, I fall into a depression and I just don’t care or feel like doing anything for a while. That’s what I felt like when my kidneys failed this summer.

Wedding

I got married last Friday! It was a nice small wedding. I felt like crud the whole day though. I had my dad wheel me down the aisle the whole way and I had to sit down a few minutes into the ceremony. I was shaking the whole time because I was having such a hard time breathing. I barely ate dinner because I felt so terrible. We didn’t have a first dance or throw my garter and bouquet. Oh well, it’s okay. Charles’s mom, Cathy made all the food and set up the decorations on the tables. My brother John and my brother James and some of his friends, who were in town for another wedding happening Sunday, set up the lights and tables and chairs. My cousin Jimmy and my Uncle Dennis were my photographers. I’m glad I had so much help so I didn’t have to pay for a lot of things. After the wedding a few of our friends came over and drank until about 2:30 in the morning. I’m very surprised I stayed up that whole time. I was so tired and and felt like dying. The next day we just relaxed most of the day.

Yesterday evening we had a BBQ with the neighbor and some friends from his work and a couple of my friends. It was nice to socialize. Today we did absolutely nothing for his last day off.

Transplant List

I’m finally reactivated on the lung transplant list with UCLA. They had their meeting today and voted on my case. It’s about time! I’m so glad I’m back on because I have been feeling very short of breath since my kidney failure last month.

Right now I am at USC Keck being treated for anemia. I should be going home tomorrow though. I hope they can get all my meds ordered and ready at the pharmacy on time. They should have been working on this since day one because it takes forever for some important meds to be approved by the insurance. I also hope that the sputum cultures come back and show that I don’t need the antibiotic IV they have me on because I don’t want to go home on IVs.

I’m so relieved that I’m going home because my wedding is next Friday.

It’s Been Hectic!

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.

IVs yay…

I started Home IVs last Friday. I’m so glad I wasn’t put in the hospital. It would have been really bad timing because I just became the mother of three kittens. Their mom was one of the Siamese strays at my mom’s house. She must have had some kind of internal injury because she was having a hard time breathing all day leading up to her death. Mom picked her up off the lawn and put her in a box with her kittens in the bathroom and she kept trying to get out knowing she was dying. She passed away in the bathtub last Wednesday night. Since then I have had to bottle feed the kittens because they are only about three weeks old now. I am going to introduce them to wet cat food on Thursday. The last couple of days their teeth have started to grow in and they are biting more and more on the bottle nipples. They are so cute. One is an all white Siamese. I named him Cottonball. The other two have points but one’s points are darker than the other, those two are both girls and I haven’t named them yet.

I’m also really glad I didn’t get put in the hospital because I had my photopheresis treatment scheduled today and tomorrow. We had also made plans to go to the OC Fair on Wednesday a few weeks ago and this is the last week of it. I hope my friend, Evelyn, or my Grandma can watch the kittens while we go to the Fair.

I’m debating on whether I want to go to the Transplant Support Group Meeting tomorrow night at USC or to the city meeting about my parent’s street being rezoned to be an industrial zone. The city is trying to change the whole block from residential to industrial and to make it illegal to make any changes or add-ons to the properties there. It will really suck if it passes because that mean my parents wont be able to sell it to a developer who would build apts there. Because the house is in such disrepair it is not worth anything as is, and this law would prevent them from being able to sell it for a good enough price. It would bring the property values down of many of the houses on that block.

The meeting tomorrow will be about ways to prevent rejection so I really want to go to that too… I’m so torn.