Please only do these antics if you are aware of your situation while in the can. Make sure your CF doctor even knows you’re there by calling the clinic number and getting whomever is on call. They NEED to know you are there!
I don’t get put in the can much at all – and usually only for blockages. Beautiful has only seen me in the hospital for my lungs once since she’s known me, and it was even before we were dating. Geez, I think it was something like February of 2001 when I was in for 3 days! Even overnight stays can be miserable if you don’t take things into your own hands.
I don’t try to be this way to be obstinate, though I am a very stubborn person, as is Beautiful, but it’s the fact that I’m in the hospital for observation, not control. My life is to be lived just as it were at home on home IVs, only they want me close to do more blood tests and to monitor my O2 levels.
Here are Fatboy’s “recommended” rules to break when in the can.
- Bring your street clothes to put on ASAP in your room. Grab baggy PJ bottoms and white undershirts to wear. No one wants to see your butt or more any more than you want to show them. If the nurses protest, insist that they complain to your CF doctor. You can guess what their response will be about such a ridiculous complaint from a floor nurse.
- Bring your own medicine. Don’t waste your time with individually-wrapped enzymes and all of the little crap they bring you that you take on your own every other day of your life. Get an itemized bill from the hospital after discharge and dispute anything from the pharmacy that you didn’t use to save on your lifetime maximum policy on your insurance.
- Refuse ridiculous tests. An example would be a gall bladder ultrasound when you have a blockage. Same goes for a contrast CT scan. You know what works and refuse stupid suggestions until your CF doctor gets his/her butt down to your floor to set them straight.
- Insist on fluids. Nothing will make you feel worse sitting in the hospital for 36 hours with less effort than simply being dehydrated. Start a saline IV or keep the Sprite coming.
- With nurse rotations on floors and the relative rareness of CF in comparison to other pulmonary symptoms, take every opportunity to educate the staff on what CF is about – in your own way. I may be a bit brash, but as long as we bring the Xanax from home, too, I’m tolerable. I can’t wait to see myself as a grumpy old coot. Beautiful is already embarrassed enough at times, provoking a rebuking when the nurse leaves the room.
- Walk around. You’re a free man/woman. There is no need to sit in your bed all day. This is a bit gross, but gas builds up anyway. Might as well share it with the hall, right?
- Hit the nurse button the second the IV pump starts beeping. If you don’t, it could be anywhere from 5 minutes to an hour before they flush you with heparin. I’m going to find me a nurse with an iPhone 4 next time and do FaceTime with her to get her butt down there to flush me.
- Last, but far, far, far from least: have someone bring you food court food. Unless you’re NPO, you are NOT going to get enough food on their menu and the hospital is surely to put you on low sodium anyway. Make Sbarro and Subway your new best friend. Bring in a box of cereal from home if you’re in for a couple of days.
- EDIT/APPEND: Reject any and all offers from male nurses to give you a sponge bath on discharge day… especially if you’ve only been there for 30 hours and your wife is sitting right there! Pervert!
This is the most important thing I can say on this subject: they are there working for you.
What rules do you try to break to make your life easier?
I have posted something on my postereous in answer to your question. It will show how our hospital experience varies from yours. Hope you are keeping well and pushing towards 100 days IV free. Looking forward to seeing the new 125lb photo up on the site.
Sean
Thanks – I'll go check it out. I stepped on to the scale at 122 last night,
so I'm hanging right in there at my new photo mark.
I have treatment every 3 months, if I am well enough I do it at home, other times I have to go into hospital.
I used to go to a specialist CF ward and could use kitchen facilities, and laundry room etc.
Now I have moved away with my man and have hospital stays on the chest clinic, CF Specialists on sight (most other patients are over 70yrs old!)
Obviously in my own room with toilet, tv and fridge, But again some of the staff who are not regular to the ward don't know much about Cystic Fibrosis, and don't help with your needs as to them I'm young and look like I can cope on my own!. Also they don't get the panicking need to get your line flushed straight away and think your making a fuss!
On top of what you have mentioned, To make things more comfortable I take my own pillow and duvet (make sure to use bright patterns as have had plain covers taken away to be cleaned & never seen again!)
I also take my own tea bags, as nhs ones suck & my own mug (I attach a wrist band with my name onto the handle) All makes things more homely.
I take in all my arts & crafts that will keep my mind busy.
You don't have to let the nurse prick your finger for Blood sugar level testing, I tell them I can do it myself! (less upsetting)
I have brought in my computer and bought a wireless internet connection, helps time fly by.
In regards to food, the catering contractor they have at the moment is the worst I've ever experienced (bring back on sight catering- please!) So I can get food from canteen, and bug the man to bring me in stuff. His mum has just made me a curry for tonight so will have to convince food staff to heat it up for me (will let you know how that one goes down!)
Make sure you challenge nursing staff if they aren't flushing aseptic or clamping off under pressure. And talk through all concerns with specialist team.
It's taken me a while, but I now realise that I don't have to let the doctors do what they want to me (ie can say no to repeated attempts of line insertions) I was born in Africa & they would tie me to a chair to do procedures & take bloods (not something that leaves you, I fear the loss of control when it comes to procedures)
It also didn't help at a young age, to have my mother telling me that I would never be able to have a transplant when older, if I didn't let hospital staff do what they wanted. I'm finally getting more assertive and it really helps with my confidence and not getting panicky.
Awesome response, thanks! I agree with bringing as much from home as you
can, for sure. iPhone and laptop are a must, even for quick ER visits… and
don't forget power cords for everything. ๐
That food situation must really suck – worse than we have it at my hospital,
but I've thankfully only been tortured by 15 or so of their meals in my
life. Most of my hospital time was as a kid in Ohio. We have a cafe, food
court, Starbucks, and McDonald's at this hospital, so food is available, but
it should darn well be free.
I have posted something on my postereous in answer to your question. It will show how our hospital experience varies from yours. Hope you are keeping well and pushing towards 100 days IV free. Looking forward to seeing the new 125lb photo up on the site.
Sean
Thanks – I'll go check it out. I stepped on to the scale at 122 last night,
so I'm hanging right in there at my new photo mark.
I have treatment every 3 months, if I am well enough I do it at home, other times I have to go into hospital.
I used to go to a specialist CF ward and could use kitchen facilities, and laundry room etc.
Now I have moved away with my man and have hospital stays on the chest clinic, CF Specialists on sight (most other patients are over 70yrs old!)
Obviously in my own room with toilet, tv and fridge, But again some of the staff who are not regular to the ward don't know much about Cystic Fibrosis, and don't help with your needs as to them I'm young and look like I can cope on my own!. Also they don't get the panicking need to get your line flushed straight away and think your making a fuss!
On top of what you have mentioned, To make things more comfortable I take my own pillow and duvet (make sure to use bright patterns as have had plain covers taken away to be cleaned & never seen again!)
I also take my own tea bags, as nhs ones suck & my own mug (I attach a wrist band with my name onto the handle) All makes things more homely.
I take in all my arts & crafts that will keep my mind busy.
You don't have to let the nurse prick your finger for Blood sugar level testing, I tell them I can do it myself! (less upsetting)
I have brought in my computer and bought a wireless internet connection, helps time fly by.
In regards to food, the catering contractor they have at the moment is the worst I've ever experienced (bring back on sight catering- please!) So I can get food from canteen, and bug the man to bring me in stuff. His mum has just made me a curry for tonight so will have to convince food staff to heat it up for me (will let you know how that one goes down!)
Make sure you challenge nursing staff if they aren't flushing aseptic or clamping off under pressure. And talk through all concerns with specialist team.
It's taken me a while, but I now realise that I don't have to let the doctors do what they want to me (ie can say no to repeated attempts of line insertions) I was born in Africa & they would tie me to a chair to do procedures & take bloods (not something that leaves you, I fear the loss of control when it comes to procedures)
It also didn't help at a young age, to have my mother telling me that I would never be able to have a transplant when older, if I didn't let hospital staff do what they wanted. I'm finally getting more assertive and it really helps with my confidence and not getting panicky.
Awesome response, thanks! I agree with bringing as much from home as you
can, for sure. iPhone and laptop are a must, even for quick ER visits… and
don't forget power cords for everything. ๐
That food situation must really suck – worse than we have it at my hospital,
but I've thankfully only been tortured by 15 or so of their meals in my
life. Most of my hospital time was as a kid in Ohio. We have a cafe, food
court, Starbucks, and McDonald's at this hospital, so food is available, but
it should darn well be free.
We are blessed (so to speak) to have a dedicated CF unit at one of our hospitals. Some of the nurses are really great, while others need to step back and try to remember what made them want to be a nurse in the first place. In the handful of times John has been in, its not been too terrible. Personal pillows are a must! Just like going on vacation, you gotta have them. Food was not an issue for him. They have the usual food tray, but he could get a double order of anything. He could also order from the kitchen later at night. They kept snacks on the floor along with Sprite and other “clear” liquids. PJ's are a must! From the sounds of it, I don't know what we would do if we went to a hosptial without a CF floor. I'm so used to the specialized treatment and care. They not only made John comfortable as possible, but made sure I was hanging in there too.
That's cool. I think the only spot at my hospital (a major lung transplant
center, though) that is truly used to CFers is the transplant step-down
areas. Everywhere else I've been in there is a crap-shoot for nursing. Best
to just come prepared, I say.
Ok, love this article! Our team has learned that unless Phoenix is VERY ill he gets treated like he is at home. We get up in the morning, get him dressed in street clothes, and go about a normal day! The nurses love having play dough all over! Figure if we can do it at home we can do it at the hospital! Didn’t know we can bring our own meds, that is a good one! Sometimes we are waiting for hours to get a med.
If you do bring your own meds, make sure you get an itemized hospital bill so your insurance doesn’t get charged for things that were not consumed. I’m not going to pry the pills out of an ammo belt of enzymes that they give me when I have to take 8-10 pills. I’d pass out from hunger before I got my meds down. “Here, nurse, make yourself useful and pop all of these pills out of the casing since you let my IV beep for 30 minutes in the middle of the night and are so slow to flush me.”