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When I was moved to a normal ward, all I wanted to do was sleep. Which was what I did for a couple of hours before my next treatment.
On the ward, I faced a new set of problems. Getting a good nurse was a shot in the dark. Some nurses were great and very responsive. Others, treated me like I was wasting their time. Call light response time was much longer. And sometimes my nurse wasn't even told that I needed her.
Finally got the nose bleeding to calm down. It hadn't stopped, but it wasn't tissues full of blood several times a day. They hooked a humidifier to my oxygen so it wouldn't irritate my nose so much.
I was no longer connected to a bunch of monitors. And I could use the bathroom on my own.
Once I reached the point where I could sit up and talk normally, I decided to try trendelenburg. I ended up coughing so hard that I started gasping. The RT had to up my oxygen. The coughing itself isn't the problem. When I cough up such a large amount, some of it blocks my throat. No air can pass through, so my brain starts to panic. Once all the mucous is out, I can breathe again. By then, I usually have a headache and have seen the flashing lights. It took a few days before I could do trendelenburg without having a problem.
Once I was okay with trendelenburg, my doctor decided to add something new to my therapy. He put in orders for me to ride a stationary bike while inhaling my hypertonic saline. Now if this had been the first time he had brought up the idea, I probably would have looked at him like he was nuts. My doctor had brought the idea up to me a couple of years ago. He had wanted to do an experiment to see if doing a breathing treatment while exercising would increase how deep into the lungs the medication would go. After some discussion, I come to the conclusion that it was a good idea to test. Nothing seemed to come of it though
This wasn't an experiment though. My doctor was just trying to get my crud out of my lungs and get them to strengthen up a bit. My first round on the bike was like my trying trendelenburg. I didn't last five minutes. I was coughing stuff up, gasping for air. The RT had to turn up my oxygen for me. I was so shaky, it took me awhile to be able to continue with my treatment. Like with trendelenburg, it took me a few days to go up to the ten minutes my doctor requested. I actually began to like that part of my treatment.
This was the longest hospital stay I've had in a while. I stayed for two weeks. By the time I got out, I had missed the first week and a half of school. Had one week to prepare for midterms. The best part was my mom brought Mick with her to take me home. He was so happy to see me. He kept licking my face and wouldn't budge from my lap.
Now that I've been home for a while, gotten caught up with schoolwork, in the middle of moving, and have had a follow up appointment with my doctor, I've decided that I like the bike idea and am now searching for a stationary bike for use during my treatments at home. Who knows, maybe enough CFers will give it a try, the CF Foundation will fund a research project to see if it really works. And it's something I don't have to wait for FDA approval to start.
Friday, February 19, 2010
Part 2: The ICU
Once I got to ICU, the staff didn't waste any time. They switched out my monitors (heart rate, O2, blood pressure, temperature...) for their own. Because I'm allergic to adhesives they had to manually take my temperature every couple of hours. They also had to take my blood pressure manually. My blood pressure naturally runs on the low side. When the machine tried taking it, the alarms would go off.
I can't say I got much sleep in ICU. I had a "private," glass room. It reminded me of the gorilla enclosures at the zoo (everyone walking by feels the need to stare). The reason for no sleep was that my doctor ordered my treatments to occur every two hours. One treatment takes an hour and a half, so sleep wasn't likely. I was awake for 36 hours before my treatments were changed to every four hours.
The way those glass rooms are designed is kind of odd. I could hear all the noise going on in the ICU (not a quiet place to be), but never smelled anything. At one point during my stay, there was an announcement for a Code Red on the floor. Since it didn't state where on the floor, and I didn't see or smell anything, I figured that the fire wasn't in ICU. Turns out someone burnt some popcorn (complete with flames) in the microwave. My Respiratory Therapist was freaking out because he was working so hard to get me breathing comfortably, the last thing he needed was for me to have an asthma attack on top of my breathing problems. From what I was told, the burnt smell permeated through ICU. I never smelled any of it in my little glass room.
A problem that developed while I was in the ICU involved nosebleeds. I had been having nosebleeds at home, but they were light and slightly irritating. My first day in the ICU, I had to keep blowing my nose and the tissues would be full of blood. The RT was nice and acted like it was normal. I was completely freaked out. Only time I've gotten that much blood is in the morning, when it has built up all night. This was several times in one day. The only thing they could suspect was my being on prednisone and then being on oxygen. Was never checked for any CF related sinus issues.
The beds in ICU are pretty cool. The nurse can push a button and the bed will take your weight, without you having to get up. To prevent bedsores, there's something like a massager that slowly moves throughout the bed. And the bed turns into a chair. The nurse will push a button and the bed starts folding, sitting you upright. I was sorry to give up the bed when I was moved to a normal ward.
The staff in ICU was great. Longest I had to wait on a call light was five minutes. They wouldn't allow a call to go through to my room if I was sleeping or doing a treatment. Visitors had to get permission from my nurse to see me (sometimes there are people you just don't want to see when you're sick). They figured out the intervals in which I asked for water or to use the bathroom and came in to help me before I even pressed to call button. When I first arrived, the nurses made sure to remove anything in the room that I was allergic to. They didn't want to risk my having a reaction on top of everything else. And to top it off, they were friendly. The nurses didn't treat me like I was wasting their time. They made a stressful situation a little easier to deal with.
The attending for ICU did not make things less stressful for me. First off, she never introduced herself. She just kept sending in the residents to relay her orders. I don't care how good a doctor a person thinks he/she is, I am not going to follow order from someone who can't even come in for an introduction. I'm not saying that it has to be some long conversation. Just come in and say, "Hi, I'm Dr.________. I'll be handling your care while you are here. If you have any questions or problems, just have the nurse page me." It's short and doesn't even take five minutes. This was the first time in my adult life that an attending did not bother with an introduction.
While the attending did not have time to bother with an introduction, she did have time to talk about me to her residents outside my room (remember I could hear everything through that glass). That's where most of my issues with her came from.
While in ICU, I didn't eat much. I was coughing up some nasty crap, and was blowing tons of blood from my nose. I was sleep deprived, and dietary wasn't sending foods I could eat anyways. These things alone are reason enough to not be hungry. I also have a habit of not eating before a treatment. It's hard to hold food down when you're coughing up a lung. Since my treatments were every two hours, and an hour and a half each, it didn't leave much of a chance for eating. My own doctor didn't make an issue of it. He's been dealing with CFers for so long, he understands this habit. I was being pumped full of fluids through IV, and was drinking plenty.
Apparently, the attending didn't agree with my non-eating status. Instead of talking to me and my explaining why I wasn't eating, she had a chat with her residents outside my room. She told them to tell me that if I would start eating, that they'd have to put in a G-tube. She also told them to tell me that I had no choice in the matter. If I had had the strength, I would have yelled at that doctor. This resulted in me telling my doctor (he checks on his patients each day), who happened to be there with the RT from the CF clinic. I was fairly angry and asked if the attending was aware of a little thing called the "Patient's Bill Of Rights." The RT laughed and said that CFers are the wrong people to make threats like that to.
Another day the attending stood outside my room and told the residents to see if they could get me to eat peanut butter. She completely lost any shred of respect I might have had for her then. I love peanut butter, I miss eating it. However, eating peanut butter is not an option. If the attending had read my chart, she would have seen "peanut butter" in the allergy section.
The attending also told my RT to make me go in trendelenburg. Now I was having trouble breathing sitting up, there was not way I was going in trendelenburg. Since my RT refused to force me, the attending sent a resident to come and try to convince me. I flat out refused.
I decided to pay attention to every order the attending made regarding my health care. It's a good thing because she ordered heparin shots (I bleed easily and was suffering from a bloody nose, heparin would have made it worse) which I had to refuse.
The attending was basically a woman on a power trip. And I'm sure she wasn't used to people beneath her (especially a measly patient) saying "no." Even in my worst state, I wasn't going to let her have the upper hand. I wonder what her patient survival rate it. I have no doubt the attending was happy to have me leave "her" ICU.
I honestly think that doctors should be required to pass a course in bedside manner before renewing their licenses. They would have to be graded by real patients (ones who are constantly in the hospital) to pass.
I left the ICU just in time to ring in 2010.
I can't say I got much sleep in ICU. I had a "private," glass room. It reminded me of the gorilla enclosures at the zoo (everyone walking by feels the need to stare). The reason for no sleep was that my doctor ordered my treatments to occur every two hours. One treatment takes an hour and a half, so sleep wasn't likely. I was awake for 36 hours before my treatments were changed to every four hours.
The way those glass rooms are designed is kind of odd. I could hear all the noise going on in the ICU (not a quiet place to be), but never smelled anything. At one point during my stay, there was an announcement for a Code Red on the floor. Since it didn't state where on the floor, and I didn't see or smell anything, I figured that the fire wasn't in ICU. Turns out someone burnt some popcorn (complete with flames) in the microwave. My Respiratory Therapist was freaking out because he was working so hard to get me breathing comfortably, the last thing he needed was for me to have an asthma attack on top of my breathing problems. From what I was told, the burnt smell permeated through ICU. I never smelled any of it in my little glass room.
A problem that developed while I was in the ICU involved nosebleeds. I had been having nosebleeds at home, but they were light and slightly irritating. My first day in the ICU, I had to keep blowing my nose and the tissues would be full of blood. The RT was nice and acted like it was normal. I was completely freaked out. Only time I've gotten that much blood is in the morning, when it has built up all night. This was several times in one day. The only thing they could suspect was my being on prednisone and then being on oxygen. Was never checked for any CF related sinus issues.
The beds in ICU are pretty cool. The nurse can push a button and the bed will take your weight, without you having to get up. To prevent bedsores, there's something like a massager that slowly moves throughout the bed. And the bed turns into a chair. The nurse will push a button and the bed starts folding, sitting you upright. I was sorry to give up the bed when I was moved to a normal ward.
The staff in ICU was great. Longest I had to wait on a call light was five minutes. They wouldn't allow a call to go through to my room if I was sleeping or doing a treatment. Visitors had to get permission from my nurse to see me (sometimes there are people you just don't want to see when you're sick). They figured out the intervals in which I asked for water or to use the bathroom and came in to help me before I even pressed to call button. When I first arrived, the nurses made sure to remove anything in the room that I was allergic to. They didn't want to risk my having a reaction on top of everything else. And to top it off, they were friendly. The nurses didn't treat me like I was wasting their time. They made a stressful situation a little easier to deal with.
The attending for ICU did not make things less stressful for me. First off, she never introduced herself. She just kept sending in the residents to relay her orders. I don't care how good a doctor a person thinks he/she is, I am not going to follow order from someone who can't even come in for an introduction. I'm not saying that it has to be some long conversation. Just come in and say, "Hi, I'm Dr.________. I'll be handling your care while you are here. If you have any questions or problems, just have the nurse page me." It's short and doesn't even take five minutes. This was the first time in my adult life that an attending did not bother with an introduction.
While the attending did not have time to bother with an introduction, she did have time to talk about me to her residents outside my room (remember I could hear everything through that glass). That's where most of my issues with her came from.
While in ICU, I didn't eat much. I was coughing up some nasty crap, and was blowing tons of blood from my nose. I was sleep deprived, and dietary wasn't sending foods I could eat anyways. These things alone are reason enough to not be hungry. I also have a habit of not eating before a treatment. It's hard to hold food down when you're coughing up a lung. Since my treatments were every two hours, and an hour and a half each, it didn't leave much of a chance for eating. My own doctor didn't make an issue of it. He's been dealing with CFers for so long, he understands this habit. I was being pumped full of fluids through IV, and was drinking plenty.
Apparently, the attending didn't agree with my non-eating status. Instead of talking to me and my explaining why I wasn't eating, she had a chat with her residents outside my room. She told them to tell me that if I would start eating, that they'd have to put in a G-tube. She also told them to tell me that I had no choice in the matter. If I had had the strength, I would have yelled at that doctor. This resulted in me telling my doctor (he checks on his patients each day), who happened to be there with the RT from the CF clinic. I was fairly angry and asked if the attending was aware of a little thing called the "Patient's Bill Of Rights." The RT laughed and said that CFers are the wrong people to make threats like that to.
Another day the attending stood outside my room and told the residents to see if they could get me to eat peanut butter. She completely lost any shred of respect I might have had for her then. I love peanut butter, I miss eating it. However, eating peanut butter is not an option. If the attending had read my chart, she would have seen "peanut butter" in the allergy section.
The attending also told my RT to make me go in trendelenburg. Now I was having trouble breathing sitting up, there was not way I was going in trendelenburg. Since my RT refused to force me, the attending sent a resident to come and try to convince me. I flat out refused.
I decided to pay attention to every order the attending made regarding my health care. It's a good thing because she ordered heparin shots (I bleed easily and was suffering from a bloody nose, heparin would have made it worse) which I had to refuse.
The attending was basically a woman on a power trip. And I'm sure she wasn't used to people beneath her (especially a measly patient) saying "no." Even in my worst state, I wasn't going to let her have the upper hand. I wonder what her patient survival rate it. I have no doubt the attending was happy to have me leave "her" ICU.
I honestly think that doctors should be required to pass a course in bedside manner before renewing their licenses. They would have to be graded by real patients (ones who are constantly in the hospital) to pass.
I left the ICU just in time to ring in 2010.
Trip to The ER
I know it's been awhile wince my last post. Makes my goal of posting once a week seem futile. My being MIA was not without good reason. The reason which will be detailed out in this serious of three posts.
After Christmas, I got sick. Caught some sort of cold and still haven't figured out from who. Instead of getting better, I just got worse. It got to the point where my mother had to drive me to the ER (I protested the whole way there, between gasps for air).
When we got to the ER a nurse checked my vitals. My pulse was at 132 and O2 sats were 88%. This was at rest. So basically, I didn't have to spend hours in the waiting room waiting for help. I was quickly taken into a room where they put an oxygen mask on me (set it to 4 liters) and gave me three albuterol treatments, back-to-back.
During this time they also did an EKG. Second one I've had in my life, and the second one in three months. The EKG showed that though my heart rate was extremely fast, my heart was still in good condition.
At some point my doctor came in (I had called when I was on the way to the ER). I'm guessing I looked pretty bad because he told the ER doctor to have me sent to ICU.
Once I was somewhat stable (on oxygen and port accessed), I was sent from a private room in the ER to one of those rooms where there are several patients separated by curtains. Then I had to play the waiting game.
At some point while waiting, I needed to use the restroom. I told the nurse. Since my heart rate was so high, the doctor left orders that I wasn't to get out of bed for anything. So I had to use a bedpan. I'm glad my mother was there to help me out because that was an extremely humiliating experience for me. My bladder can hold quite a bit of fluid (over a liter) before I need to go. The bedpan that was brought was apparently too small. So in the end, my sheets needed to be changed, I needed a bath and a clean hospital gown. Eventually, I was moved to a "private" room (it was a glass room in the same area of the ER). It had its own toilet. The nurse had decided it was less stressful to let me use the toilet than the bedpan.
I remained in the ER until about 3am (went in at 2pm). Then I was sent to the ICU.
After Christmas, I got sick. Caught some sort of cold and still haven't figured out from who. Instead of getting better, I just got worse. It got to the point where my mother had to drive me to the ER (I protested the whole way there, between gasps for air).
When we got to the ER a nurse checked my vitals. My pulse was at 132 and O2 sats were 88%. This was at rest. So basically, I didn't have to spend hours in the waiting room waiting for help. I was quickly taken into a room where they put an oxygen mask on me (set it to 4 liters) and gave me three albuterol treatments, back-to-back.
During this time they also did an EKG. Second one I've had in my life, and the second one in three months. The EKG showed that though my heart rate was extremely fast, my heart was still in good condition.
At some point my doctor came in (I had called when I was on the way to the ER). I'm guessing I looked pretty bad because he told the ER doctor to have me sent to ICU.
Once I was somewhat stable (on oxygen and port accessed), I was sent from a private room in the ER to one of those rooms where there are several patients separated by curtains. Then I had to play the waiting game.
At some point while waiting, I needed to use the restroom. I told the nurse. Since my heart rate was so high, the doctor left orders that I wasn't to get out of bed for anything. So I had to use a bedpan. I'm glad my mother was there to help me out because that was an extremely humiliating experience for me. My bladder can hold quite a bit of fluid (over a liter) before I need to go. The bedpan that was brought was apparently too small. So in the end, my sheets needed to be changed, I needed a bath and a clean hospital gown. Eventually, I was moved to a "private" room (it was a glass room in the same area of the ER). It had its own toilet. The nurse had decided it was less stressful to let me use the toilet than the bedpan.
I remained in the ER until about 3am (went in at 2pm). Then I was sent to the ICU.
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