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Still in the hospital. Was supposed to go home today but my white cells weren't cooperating. Apparently, they aren't going down to the level my doctor wants them to.
The good news is that I'm not on oxygen anymore. I can't go running, but at least I can brush my teeth without getting short of breath. And my nose is happy about this change in events. It was really starting to hurt. Now I'm just irrigating a bunch of blood out.
For the most part today has been pretty uneventful. My boyfriend and I are having our last date night before he returns home. I have to say, he's definitely set some new standards for boyfriends.
Monday, July 9, 2012
Saturday, July 7, 2012
Date Night
Well, I have some good news. I should be able to go home on Monday. I could have gone home today, but one of the meds won't be available till Monday. So I have to finish out the weekend here. I am looking forward to going home. Sleeping through the night will be so nice. Here getting two hours of uninterrupted quiet time is a miracle.
I do have to say that this has been one of my better stays. I am going to have to give my boyfriend credit for that. Last night he decided that we would still have our date night even though I am in the hospital. So he dressed up and made me a peanut butter shake. Then we did dinner and a movie. It was really sweet. instead of letting the hospital ruin our plans, he found a way to make our plans go through.
I can honestly say that this stay has been very amusing.
I do have to say that this has been one of my better stays. I am going to have to give my boyfriend credit for that. Last night he decided that we would still have our date night even though I am in the hospital. So he dressed up and made me a peanut butter shake. Then we did dinner and a movie. It was really sweet. instead of letting the hospital ruin our plans, he found a way to make our plans go through.
I can honestly say that this stay has been very amusing.
Thursday, July 5, 2012
Lock Up Update
Thought I'd try updating everyone on what's been going on. I was transferred to UC Davis on Sunday afternoon. I figured the earliest I would have been transferred was on Monday, but when two hospitals work together instead of arguing, things get done pretty quickly.
So I had my first ambulance ride that I was conscience for. My boyfriend rode with me. He rode up front while I was in the back. I wish I could say the ride was exciting, but it really wasn't. Between Chico and Sacramento is mostly farmland so I dozed the bulk of the way.
Since getting to Davis, I've been pumped full of fluids. My bladder is not enjoying this. They've taken plenty of blood. Done X-Rays. Still no real conclusion as to what happened, just a theory.
My boyfriend has been staying with me. He's been really helpful through this. Since I wasn't able to move around, he basically carried me where I wanted to go. He's good at distracting me during lab draws. One time, a nurse came in for blood and my boyfriend started talking about food with me. We were describing different dishes, finally the nurse said, "stop, your making me so hungry I can't concentrate." I got a good laugh from it, and it was one of my easiest lab draws.
I think him being here is probably the only silver lining to being in the hospital. We usually don't get much time together. And right now it's in abundance. I don't think the sleeper chair he's been using is all that comfy, but he isn't complaining. I do think the lack of good sleep is probably draining on him.
The hospital food is still a mystery to me. Yesterday, they sent something that they called Chile Verde, but what it looked like was a dog vomited up a bunch of canned food. Looked pretty nasty. Now I love Chile Verde and this stuff definitely wasn't Chile Verde. This time around, I've been craving chicken alfredo. Can't wait to get home and have some.
As for when I get to go home, there's no say on that. I think the doctors are waiting for me to be able to do normal things without oxygen before they will consider letting me go. So that's what I am working on. It's a challenge since everytime I unhook the oxygen I feel like a fish gasping for air. My doctor did order a bike be brought in so I get to start on that.
Not much else here. Mostly trying to catch up on lost sleep. Sleep in a hospital, what a novel idea.
So I had my first ambulance ride that I was conscience for. My boyfriend rode with me. He rode up front while I was in the back. I wish I could say the ride was exciting, but it really wasn't. Between Chico and Sacramento is mostly farmland so I dozed the bulk of the way.
Since getting to Davis, I've been pumped full of fluids. My bladder is not enjoying this. They've taken plenty of blood. Done X-Rays. Still no real conclusion as to what happened, just a theory.
My boyfriend has been staying with me. He's been really helpful through this. Since I wasn't able to move around, he basically carried me where I wanted to go. He's good at distracting me during lab draws. One time, a nurse came in for blood and my boyfriend started talking about food with me. We were describing different dishes, finally the nurse said, "stop, your making me so hungry I can't concentrate." I got a good laugh from it, and it was one of my easiest lab draws.
I think him being here is probably the only silver lining to being in the hospital. We usually don't get much time together. And right now it's in abundance. I don't think the sleeper chair he's been using is all that comfy, but he isn't complaining. I do think the lack of good sleep is probably draining on him.
The hospital food is still a mystery to me. Yesterday, they sent something that they called Chile Verde, but what it looked like was a dog vomited up a bunch of canned food. Looked pretty nasty. Now I love Chile Verde and this stuff definitely wasn't Chile Verde. This time around, I've been craving chicken alfredo. Can't wait to get home and have some.
As for when I get to go home, there's no say on that. I think the doctors are waiting for me to be able to do normal things without oxygen before they will consider letting me go. So that's what I am working on. It's a challenge since everytime I unhook the oxygen I feel like a fish gasping for air. My doctor did order a bike be brought in so I get to start on that.
Not much else here. Mostly trying to catch up on lost sleep. Sleep in a hospital, what a novel idea.
Sunday, July 1, 2012
The ER and Lock UP
So I did plan to do some blogging about the amazing busy time I've been having, but instead I found myself unable to breathe. I was having such a hard time that when I called UC Davis the Pulmonologist didn't think I could make it there, so I went to a local Emergency room instead. So I am in Enloe. The people so far have been nice which makes the nerve wracking part of being a new place a bit less so. It looks like I was dehydrated again. As soon as they pumped some fluids in me, I started having an easier time breathing (with the O2 on). I still can do a lot of moving around but there is some improvement. The doctor here spoke with my CF doctor and they both agreed that I would be better treated at UC Davis. So they're trying to get me stablized enough to transfer. Not sure when that will be.
The silver lining to all this is that Enloe is located close so that my mom can get some rest at the house and my boyfriend can relieve her. He met us up at the ER and stayed the night here with me. My mom had worked yesterday and needed to get some rest and care for my niece.
Another good thing about being here is that we have a couple of friends from our Bible study who work here. They've stop by to say hi. One of them came just in time. The hospital was getting ready to move me from the ER to a room. They sent a guy from the lift team to bring me up. I still had a bunch of EKG stuff connected to me and he was going to remove. I sitting there thinking, "I don't even let my boyfriend see this part of me and here a complete stranger about to lift my shirt." Luckily my friend told him no, shooed him to the other side of the room, shut the privacy curtain, and removed all the stuff. She did this during her lunch break. I was completely relieved.
So I've survived my first night here. My boyfriend is trying to catch up on some sleep. He's been up with all my coughing attacks, and my short of breath moments.
I think being a loved one of a CFer can more exhausting than being a CFer at times.
The silver lining to all this is that Enloe is located close so that my mom can get some rest at the house and my boyfriend can relieve her. He met us up at the ER and stayed the night here with me. My mom had worked yesterday and needed to get some rest and care for my niece.
Another good thing about being here is that we have a couple of friends from our Bible study who work here. They've stop by to say hi. One of them came just in time. The hospital was getting ready to move me from the ER to a room. They sent a guy from the lift team to bring me up. I still had a bunch of EKG stuff connected to me and he was going to remove. I sitting there thinking, "I don't even let my boyfriend see this part of me and here a complete stranger about to lift my shirt." Luckily my friend told him no, shooed him to the other side of the room, shut the privacy curtain, and removed all the stuff. She did this during her lunch break. I was completely relieved.
So I've survived my first night here. My boyfriend is trying to catch up on some sleep. He's been up with all my coughing attacks, and my short of breath moments.
I think being a loved one of a CFer can more exhausting than being a CFer at times.
Wednesday, June 20, 2012
Busy, Busy, Busy
Things have been busy since my last post. Busy is better than boring, but sometimes I need time to take a breather.
Friday, I got my hair cut. It's shorter than it has been in quite awhile. I do like it though. Less shampoo, more curls, and much lighter for this summer heat. I can make a pony tail and not have a bunch of hair touching my neck. A plus side is that my boyfriend likes it (or at least he says he likes it).
Friday was one of those hot days. It hit at least 103 outside. And that was the day I had to go to town. Luckily, I packed Gatorade on top of ice water.
Friday was also my Bible Study's Movie Night and potluck. We had plenty of food and lots of laughs. Most of which were at my boyfriend's expense. The movie we selected was Signs. It has plenty of points for discussion. Overall, I'd have to say that the night was a success.
Saturday was spent with my boyfriend. It was another hot day so we had to stay in. We did dinner and watched Secret of Nimh. Sometimes it's nice to relax and watch those childhood classics. I don't think we ever truly outgrow them.
Sunday was Father's Day. My mother and I had brunch with my grandfather. We brought Mick with us. It's funny seeing my grandfather with that little dog. They really adore each other. So Mick got spoiled as well as Grandpa. My mom and I headed home after brunch and I took a long nap. I think having days of stuff back to back really takes it out of me. I woke up in time to have a weekly call with my dad.
Monday was an appointment with my CF clinic. Apparently the flu really did take it out of me. I lost five pounds and my lung function is down again. So now I'm back to square one trying to get the weight back on. I'm back to square one on exercising. And because it's summer I have to work extra hard to stay hydrated. Maintenance is a full time job.
My boyfriend has offered to help me with the weight gain and exercise. I've decided to see what ideas he can come up with. He might think of a few things I never thought of. I do foresee some extra peanut butter shakes in my future :o) Right now, I am trying to eat every three hours. Sometimes it's just a small snack, but it's something. That's every three hours while I'm awake. I'm not setting alarms at night to eat. And because of the heat, I've been eating plenty of ice cream. The funny thing about trying to gain weight is that I'm craving apples. So I'm thinking of picking some up and eating them with peanut butter. I know it's not a ton of calories, but if I don't give in to my food cravings I can get moody.
Tuesday was Bible Study. It was fun, lots of food. My boyfriend had the night off so we had some one on one time afterwards. For us those times are a rarity. So we take them when we can.
Today, I relaxed. My body needed the rest. Besides, it was too hot outside to do anything. I should get a kiddie pool set up so I can just relax outside in cool water.
It's time to eat again.
Friday, I got my hair cut. It's shorter than it has been in quite awhile. I do like it though. Less shampoo, more curls, and much lighter for this summer heat. I can make a pony tail and not have a bunch of hair touching my neck. A plus side is that my boyfriend likes it (or at least he says he likes it).
Friday was one of those hot days. It hit at least 103 outside. And that was the day I had to go to town. Luckily, I packed Gatorade on top of ice water.
Friday was also my Bible Study's Movie Night and potluck. We had plenty of food and lots of laughs. Most of which were at my boyfriend's expense. The movie we selected was Signs. It has plenty of points for discussion. Overall, I'd have to say that the night was a success.
Saturday was spent with my boyfriend. It was another hot day so we had to stay in. We did dinner and watched Secret of Nimh. Sometimes it's nice to relax and watch those childhood classics. I don't think we ever truly outgrow them.
Sunday was Father's Day. My mother and I had brunch with my grandfather. We brought Mick with us. It's funny seeing my grandfather with that little dog. They really adore each other. So Mick got spoiled as well as Grandpa. My mom and I headed home after brunch and I took a long nap. I think having days of stuff back to back really takes it out of me. I woke up in time to have a weekly call with my dad.
Monday was an appointment with my CF clinic. Apparently the flu really did take it out of me. I lost five pounds and my lung function is down again. So now I'm back to square one trying to get the weight back on. I'm back to square one on exercising. And because it's summer I have to work extra hard to stay hydrated. Maintenance is a full time job.
My boyfriend has offered to help me with the weight gain and exercise. I've decided to see what ideas he can come up with. He might think of a few things I never thought of. I do foresee some extra peanut butter shakes in my future :o) Right now, I am trying to eat every three hours. Sometimes it's just a small snack, but it's something. That's every three hours while I'm awake. I'm not setting alarms at night to eat. And because of the heat, I've been eating plenty of ice cream. The funny thing about trying to gain weight is that I'm craving apples. So I'm thinking of picking some up and eating them with peanut butter. I know it's not a ton of calories, but if I don't give in to my food cravings I can get moody.
Tuesday was Bible Study. It was fun, lots of food. My boyfriend had the night off so we had some one on one time afterwards. For us those times are a rarity. So we take them when we can.
Today, I relaxed. My body needed the rest. Besides, it was too hot outside to do anything. I should get a kiddie pool set up so I can just relax outside in cool water.
It's time to eat again.
Wednesday, June 13, 2012
Hot Days of Summer Have Began
Talked to my doctor, since I'm back to coughing and being short of breath. That flu really took it out of me. I don't want to go back to the hospital this soon so he agreed to have me try some oral antibiotics for a few days. If that doesn't work than it's back to IVs. So I am currently on three meds that say to keep out of sunlight. So it looks like I'll have to hold off on getting some colour back on this skin.
Had to put the AC on before noon today. I hate hot days. I don't like the heat. I can't keep up on hydration, the air is hard to breath, and I become a walking salt lick. The other bad thing about the heat is that I don't get hungry. I'm hungry when it's cool, but when it's hot I want nothing to do with food. I just want to cool off. The not hungry part is hard since I don't have any weight to spare. Normally, when the weather heats up, I keep a supply of ice-cream on hand. It's cold, cools me off, and helps with the calories. Probably not the healthiest meal choice, but it's better than not eating. Once the suns goes down and things cool off a bit my appetite returns. This equals a lot of midnight and 3am snacking.
And then there's hydration. During the summer I tend to lose more water than I put in. It's not for lack of trying. On really hot days I need about 20 glasses of water/Gatorade just to ward off dehydration. I'm not kidding, my doctors and I actually measured it. That is a hard goal to reach each day. No wonder I don't get hungry. I'm too full of liquids to eat.
I still haven't figured out this whole eating in the summer thing. Maybe I should get a pool and eat all my meals in nice cool water. Seriously, though I do wonder how other CFers beat the challenges of a hot day.
It seems that the warm weather is here to stay. That means packing away all the winter blankets and just sleeping under sheets. That also means camping weather and trips to the coast. I'll take any excuse to visit the ocean.
As for today, I think I'm going to sit under a fan and read a book with a bowl of ice cream.
For updates on my transplant journey click here.
Had to put the AC on before noon today. I hate hot days. I don't like the heat. I can't keep up on hydration, the air is hard to breath, and I become a walking salt lick. The other bad thing about the heat is that I don't get hungry. I'm hungry when it's cool, but when it's hot I want nothing to do with food. I just want to cool off. The not hungry part is hard since I don't have any weight to spare. Normally, when the weather heats up, I keep a supply of ice-cream on hand. It's cold, cools me off, and helps with the calories. Probably not the healthiest meal choice, but it's better than not eating. Once the suns goes down and things cool off a bit my appetite returns. This equals a lot of midnight and 3am snacking.
And then there's hydration. During the summer I tend to lose more water than I put in. It's not for lack of trying. On really hot days I need about 20 glasses of water/Gatorade just to ward off dehydration. I'm not kidding, my doctors and I actually measured it. That is a hard goal to reach each day. No wonder I don't get hungry. I'm too full of liquids to eat.
I still haven't figured out this whole eating in the summer thing. Maybe I should get a pool and eat all my meals in nice cool water. Seriously, though I do wonder how other CFers beat the challenges of a hot day.
It seems that the warm weather is here to stay. That means packing away all the winter blankets and just sleeping under sheets. That also means camping weather and trips to the coast. I'll take any excuse to visit the ocean.
As for today, I think I'm going to sit under a fan and read a book with a bowl of ice cream.
For updates on my transplant journey click here.
Monday, June 11, 2012
Wicked and Jewelry
Back from my trip to Roseville. Saw Wicked on Friday. It was my 30th birthday present. A year's wait and was totally worth it. I wish I could tell all about it, but I don't want to ruin the show for anyone who is planning on seeing it. I will say, my sister got us awesome seats. We had box seats. The view was great. And the costumes were so cool. The music was great. It was definitely an amazing night. It had been over 10 years since I had last seen a show.
Before we went to the show, we stop for food. We ended up going to this Asian place in downtown Sacramento. It was a short walk from the theatre. The food was good and the prices were reasonable. My sister got my brother-in-law to eat a chili which rendered him unable to taste for a while. I got a rice bowl. It was bigger than my head.
After we ate, my sister hung out at Capital Park for a while. It was across from the theatre. We had close to an hour to kill before the show. The park is a beautiful place to hang out.
Saturday evening my family and I went to a jewelry fundraiser for COTA. The jewelry was pretty nice. My sister bought a few pieces.
Sunday was the first time I got to see my boyfriend in two weeks. I had gone to Stanford and then got sick, so we hadn't had any one on one time. A lot of phone calls but nothing face to face. We met up at church and had lunch together. I'm lucky, my boyfriend likes Mexican food so when I'm craving tacos he's all for going out and getting some. As long as he gets to have a burrito, he's a happy guy.
Today, I've just been relaxing and snacking. Too hot for a big meal, but small meals seem fine. Plus I get to eat lots of ice cream.
Before we went to the show, we stop for food. We ended up going to this Asian place in downtown Sacramento. It was a short walk from the theatre. The food was good and the prices were reasonable. My sister got my brother-in-law to eat a chili which rendered him unable to taste for a while. I got a rice bowl. It was bigger than my head.
After we ate, my sister hung out at Capital Park for a while. It was across from the theatre. We had close to an hour to kill before the show. The park is a beautiful place to hang out.
Saturday evening my family and I went to a jewelry fundraiser for COTA. The jewelry was pretty nice. My sister bought a few pieces.
Sunday was the first time I got to see my boyfriend in two weeks. I had gone to Stanford and then got sick, so we hadn't had any one on one time. A lot of phone calls but nothing face to face. We met up at church and had lunch together. I'm lucky, my boyfriend likes Mexican food so when I'm craving tacos he's all for going out and getting some. As long as he gets to have a burrito, he's a happy guy.
Today, I've just been relaxing and snacking. Too hot for a big meal, but small meals seem fine. Plus I get to eat lots of ice cream.
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