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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.
Saturday, January 2, 2010
Wednesday, December 23, 2009
Doctor Appointment
On Monday I had an appointment with my doctor. Overall the appointment went quite well. I'm at 94 lbs (my bikini weight!). My lung function went down from 35% to 31% due to an infection caused by a cold. So I'm being given more Levaquin for that. I'm just glad my lung function isn't in the 20s.
I have two ulcers in my nose due to the prednisone. I already do nasal irrigation to keep germs out but to protect the open sores I have to put KY Jelly on them. I had to laugh when the doctor was trying to tell me what to get. He wouldn't just come out and say "KY Jelly". I was just telling me not to use any petroleum based products and that I needed a water based one. Then he said that I could find what I needed in the Women's Hygiene section of the store. I finally smiled and said, "You mean KY Jelly." The guy is new to the CF team (cute but new) and isn't used to how blunt I can be, or the fact that he doesn't need to beat around the bush with me.
I'm also being referred to a Gynecologist since he believes the prednisone has screwed up my cycles (twice a month is brutal) but wants to rule out any potential issues. And he's lowering my dose of prednisone since my mind racing problem is becoming more frequent. Basically, my brain chemistry is very sensitive to hormonal changes and steroids are hormones. If I can't get the mind racing under control through natural means (diet, exercise, routine, getting rid of unnecessary stress) then I'll need a mild sedative to slow my mind down at night so I can sleep.
Still waiting on the referral to the transplant center. These things take awhile to go through. So I'm waiting to start the waiting game.
Finally, the doctor gave me something for the thrush in my mouth. It's an annoying consequence of having to take so many antibiotics. I have to take the antibiotics to fight off the infections caused by having CF. But these antibiotics kill all the good bacteria in my body, resulting in thrush or yeast infections (which are worse than thrush). Usually, I can get rid of the thrush using the potent form of Listerine (28% alcohol and tastes horrible) but this time it didn't work. So the doctor gave me Nystatin. The bottle says "cherry-mint flavor" but it's just gross. I can't taste any cherry or mint. But hey, if this stuff gets my tongue to go from white to pink than taking it will be worth it.
So that was my appointment. I guess most people wouldn't think it had gone very well. In my history of doctor appointments, this was a good one. I'm not sick enough to go to the hospital, and don't need IVs. My doctor listened to my list of complaints (I really did bring in a list). He treated each one as a valid issue and provided answers to the best of his knowledge. Doctors like this are rare and the fact that I have three such doctors on my CF team makes me feel confident in the quality of care I am receiving. I am a very satisfied patient.
I have two ulcers in my nose due to the prednisone. I already do nasal irrigation to keep germs out but to protect the open sores I have to put KY Jelly on them. I had to laugh when the doctor was trying to tell me what to get. He wouldn't just come out and say "KY Jelly". I was just telling me not to use any petroleum based products and that I needed a water based one. Then he said that I could find what I needed in the Women's Hygiene section of the store. I finally smiled and said, "You mean KY Jelly." The guy is new to the CF team (cute but new) and isn't used to how blunt I can be, or the fact that he doesn't need to beat around the bush with me.
I'm also being referred to a Gynecologist since he believes the prednisone has screwed up my cycles (twice a month is brutal) but wants to rule out any potential issues. And he's lowering my dose of prednisone since my mind racing problem is becoming more frequent. Basically, my brain chemistry is very sensitive to hormonal changes and steroids are hormones. If I can't get the mind racing under control through natural means (diet, exercise, routine, getting rid of unnecessary stress) then I'll need a mild sedative to slow my mind down at night so I can sleep.
Still waiting on the referral to the transplant center. These things take awhile to go through. So I'm waiting to start the waiting game.
Finally, the doctor gave me something for the thrush in my mouth. It's an annoying consequence of having to take so many antibiotics. I have to take the antibiotics to fight off the infections caused by having CF. But these antibiotics kill all the good bacteria in my body, resulting in thrush or yeast infections (which are worse than thrush). Usually, I can get rid of the thrush using the potent form of Listerine (28% alcohol and tastes horrible) but this time it didn't work. So the doctor gave me Nystatin. The bottle says "cherry-mint flavor" but it's just gross. I can't taste any cherry or mint. But hey, if this stuff gets my tongue to go from white to pink than taking it will be worth it.
So that was my appointment. I guess most people wouldn't think it had gone very well. In my history of doctor appointments, this was a good one. I'm not sick enough to go to the hospital, and don't need IVs. My doctor listened to my list of complaints (I really did bring in a list). He treated each one as a valid issue and provided answers to the best of his knowledge. Doctors like this are rare and the fact that I have three such doctors on my CF team makes me feel confident in the quality of care I am receiving. I am a very satisfied patient.
A Friendly Visit
A lot has happened in the last week and a half.
My bio dad flew in from Colorado for a visit. I went and met his brothers and nieces (my uncles and cousins) for the first time (met my bio dad in April). The visit was nice. Apparently, I have pretty cool relatives. I'm still the odd ball though. I chose to attend UC Davis and they are all Sac State people. Guess I'll always be the weird one.
I guess I have a lot of qualities my paternal grandmother had. I find it weird because growing up I was always told that I look like my grandmother (my mother's mother) and act like my grandfather (my mother's father). I'm not upset by this comparison. I've actually always been proud of it. My grandmother was and still is a very beautiful woman. And my grandfather is a very strong will and self educated man. Being compared to these two meant that I possess the qualities that have made them so successful in life.
Now, I'm being told that I also have the qualities of a third person in me. And while I will never get to meet this person, I can tell by how everyone speaks of her that she was a creative person who was respected and loved.
My bio dad had to fly back to Colorado. I sent with him the Christmas gifts I had made for everyone. I hand painted a set of snowman ornaments. I chose the ornaments because I can do plenty of detailed work and they will still fit in a suitcase without too much trouble. I'm told that there was some negotiating over who was getting which snowman. I am hoping that it's a good thing.
My bio dad flew in from Colorado for a visit. I went and met his brothers and nieces (my uncles and cousins) for the first time (met my bio dad in April). The visit was nice. Apparently, I have pretty cool relatives. I'm still the odd ball though. I chose to attend UC Davis and they are all Sac State people. Guess I'll always be the weird one.
I guess I have a lot of qualities my paternal grandmother had. I find it weird because growing up I was always told that I look like my grandmother (my mother's mother) and act like my grandfather (my mother's father). I'm not upset by this comparison. I've actually always been proud of it. My grandmother was and still is a very beautiful woman. And my grandfather is a very strong will and self educated man. Being compared to these two meant that I possess the qualities that have made them so successful in life.
Now, I'm being told that I also have the qualities of a third person in me. And while I will never get to meet this person, I can tell by how everyone speaks of her that she was a creative person who was respected and loved.
My bio dad had to fly back to Colorado. I sent with him the Christmas gifts I had made for everyone. I hand painted a set of snowman ornaments. I chose the ornaments because I can do plenty of detailed work and they will still fit in a suitcase without too much trouble. I'm told that there was some negotiating over who was getting which snowman. I am hoping that it's a good thing.
Friday, December 11, 2009
CFer Christmas List
Christmas is around the corner and people are out getting gifts for everyone on their lists. Children have written and rewritten their letters to Santa asking for the latest toys or coolest clothes. The ladies are hoping for that pretty necklace that they see in the jewelry store window or a ring from that special someone. And the guys are hoping for some power tools or that large screen T.V. Everywhere you go, the sound of Christmas music is permeating through the air.
We CFers are no different when it comes to Christmas. We have our Christmas list. The only difference is the what and the why we are asking for it. And for the most part we will never tell you what is really on our list.
So what is on a CFer's Christmas list?
1. A New Set Of Lungs.
I guess that's pretty obvious. CF attacks the whole body in some way, but it seems to wage war on the lungs. The idea of participating in physical activities without "hacking up a lung" is pure fantasy for most of us.
2. More Time.
Time is something that no one is guaranteed. And as CFers, we are more painfully aware of that fact and of the fact that no matter how much time we do get, it will always be less than what "we could have had."
3. A Cure.
This is actually at the top of the list. Those of use who believe in a higher entity pray for it each night. And those of us who don't believe, still continue to hope. It is that hope that keeps us going day after day. Pushing against the odds, because we want to make it to that day when CF is no longer a threat. When the disease can no longer outsmart science. And that is a day we will be celebrating.
I am aware that this list is out of reach. A fantasy that has yet to become truth. But that doesn't mean you can't get the CFer in your life something he'd appreciate.
So what do you get a CF for Christmas? After wracking my brain, and considering personal experience, I've compiled this list.
1. Hand held Gaming Console.
The Nintendo DSi or PSP are great gifts for a CFer. We spend a lot of time at doctor's appointments, and in the hospital. Games help the time pass by more quickly. And helps us keep our minds off of CF for the time being. An added bonus: Include a game or two to gets things started.
2. DVDs
The more the better. Again, being sick sucks. So anything that keeps our minds off of IVs, CPT is great. Even when not in the hospital, and we're have a down day (up all night coughing, or just feeling "ick") DVDs are a great way to pass the time. I have spent many sick days just doing a marathon of movies I've been collecting just for those moments. Comedies are a plus. They brighten the day up a bit and laughter helps get some of that gunk out.
3. Notebook/Laptop.
It's one large entertainment package. Your CFer can play video games, watch movies, browse the internet, and do homework (yeah right) all on one piece of equipment. Mine has been a lifesaver. Hospital TV is extremely boring, and having all my games and movies right there has made many hospital stays a little more bearable.
4. Kindle Wireless Reading Device (6" Display, Global Wireless, Latest Generation)
I personally think this little device is neat. Your CFer can store all his favorite books on here and read them. The device is portable so it's great for doctor appointments and hospital stays. I've been hinting to my mother about it since she keeps complaining about all the books I have her bring me when I'm in the hospital (they can get heavy). This little device, could be shoved into a purse or overnight bag and your CFer can have all the reading material he needs.
5. Apple iPod touch 32 GB (3rd Generation) NEWEST MODEL
This is also a handy device. Get one that you can play games on and watch movies as well as listen to music. It's great for hospital stays (easy to stash away), and appointments.
6. Books.
Reading allows for a great escape when your CFer is having one of those "ick" days. Activity books keep the mind busy as well. I'm 28 and I still enjoy a good coloring book.
7. Cool PJs.
There's not a nice way to say it. Hospital gowns are ugly. No one looks good in them. And they are drafty in areas where no draft should be. So get your CFer a comfortable and cool set of pjs. Makes him feel a little more human in a place that tends to forget.
8. Board Games.
Again these help fight against boredom. Find out what games he likes and get him a couple. Just make sure to stick around to play a couple of rounds with him.
9. Art Project/Model Set.
Great for those rainy days when your CFer is stuck inside. Or those boring hospital stays. Make sure to get all the necessary equipment for your CFer to finish that one project. It sucks, getting a start on something and really getting into it then having to quit because a particular tool was missing or you ran out of paint...
10. Workout Equipment.
Keeping our lungs healthy is important. Unfortunately, after having to spend funds on medications and other things not covered by insurance, spending money on a workout routine just doesn't make it on the priority list. Of course this means different things for different CFers:
If your CFer likes to ride his bike a lot, get him some warm biking gloves for those chilly days. A pair of bike shoes would be nice or warm jacket. A new helmet to make sure he comes home safely. Or a gift certificate for some much needed bike maintainence.
If your CFer likes to lift weights, get him some dumbbells or a home gym. Or get him a gym membership with lessons on proper lifting techniques.
If your CFer is a jogger, get him some new running shoes, a pedometer, or a new running outfit.
If your CFer is a swimmer, get him an absorbent towel. A gym membership to a gym with an indoor heated pool would be a plus (something I am totally hinting for). This would allow him to continue swimming even when the weather is less than appropriate.
I hope this list gives you an idea for what to give the CFer in your life this Christmas.
We CFers are no different when it comes to Christmas. We have our Christmas list. The only difference is the what and the why we are asking for it. And for the most part we will never tell you what is really on our list.
So what is on a CFer's Christmas list?
1. A New Set Of Lungs.
I guess that's pretty obvious. CF attacks the whole body in some way, but it seems to wage war on the lungs. The idea of participating in physical activities without "hacking up a lung" is pure fantasy for most of us.
2. More Time.
Time is something that no one is guaranteed. And as CFers, we are more painfully aware of that fact and of the fact that no matter how much time we do get, it will always be less than what "we could have had."
3. A Cure.
This is actually at the top of the list. Those of use who believe in a higher entity pray for it each night. And those of us who don't believe, still continue to hope. It is that hope that keeps us going day after day. Pushing against the odds, because we want to make it to that day when CF is no longer a threat. When the disease can no longer outsmart science. And that is a day we will be celebrating.
I am aware that this list is out of reach. A fantasy that has yet to become truth. But that doesn't mean you can't get the CFer in your life something he'd appreciate.
So what do you get a CF for Christmas? After wracking my brain, and considering personal experience, I've compiled this list.
1. Hand held Gaming Console.
The Nintendo DSi or PSP are great gifts for a CFer. We spend a lot of time at doctor's appointments, and in the hospital. Games help the time pass by more quickly. And helps us keep our minds off of CF for the time being. An added bonus: Include a game or two to gets things started.
2. DVDs
The more the better. Again, being sick sucks. So anything that keeps our minds off of IVs, CPT is great. Even when not in the hospital, and we're have a down day (up all night coughing, or just feeling "ick") DVDs are a great way to pass the time. I have spent many sick days just doing a marathon of movies I've been collecting just for those moments. Comedies are a plus. They brighten the day up a bit and laughter helps get some of that gunk out.
3. Notebook/Laptop.
It's one large entertainment package. Your CFer can play video games, watch movies, browse the internet, and do homework (yeah right) all on one piece of equipment. Mine has been a lifesaver. Hospital TV is extremely boring, and having all my games and movies right there has made many hospital stays a little more bearable.
4. Kindle Wireless Reading Device (6" Display, Global Wireless, Latest Generation)
I personally think this little device is neat. Your CFer can store all his favorite books on here and read them. The device is portable so it's great for doctor appointments and hospital stays. I've been hinting to my mother about it since she keeps complaining about all the books I have her bring me when I'm in the hospital (they can get heavy). This little device, could be shoved into a purse or overnight bag and your CFer can have all the reading material he needs.
5. Apple iPod touch 32 GB (3rd Generation) NEWEST MODEL
This is also a handy device. Get one that you can play games on and watch movies as well as listen to music. It's great for hospital stays (easy to stash away), and appointments.
6. Books.
Reading allows for a great escape when your CFer is having one of those "ick" days. Activity books keep the mind busy as well. I'm 28 and I still enjoy a good coloring book.
7. Cool PJs.
There's not a nice way to say it. Hospital gowns are ugly. No one looks good in them. And they are drafty in areas where no draft should be. So get your CFer a comfortable and cool set of pjs. Makes him feel a little more human in a place that tends to forget.
8. Board Games.
Again these help fight against boredom. Find out what games he likes and get him a couple. Just make sure to stick around to play a couple of rounds with him.
9. Art Project/Model Set.
Great for those rainy days when your CFer is stuck inside. Or those boring hospital stays. Make sure to get all the necessary equipment for your CFer to finish that one project. It sucks, getting a start on something and really getting into it then having to quit because a particular tool was missing or you ran out of paint...
10. Workout Equipment.
Keeping our lungs healthy is important. Unfortunately, after having to spend funds on medications and other things not covered by insurance, spending money on a workout routine just doesn't make it on the priority list. Of course this means different things for different CFers:
If your CFer likes to ride his bike a lot, get him some warm biking gloves for those chilly days. A pair of bike shoes would be nice or warm jacket. A new helmet to make sure he comes home safely. Or a gift certificate for some much needed bike maintainence.
If your CFer likes to lift weights, get him some dumbbells or a home gym. Or get him a gym membership with lessons on proper lifting techniques.
If your CFer is a jogger, get him some new running shoes, a pedometer, or a new running outfit.
If your CFer is a swimmer, get him an absorbent towel. A gym membership to a gym with an indoor heated pool would be a plus (something I am totally hinting for). This would allow him to continue swimming even when the weather is less than appropriate.
I hope this list gives you an idea for what to give the CFer in your life this Christmas.
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