I'm currently in the hospital and the hospital I go to has a unit they like to admit all the cfers to (it happens to be the overfunded and under utilized pallitive care unit but thats a different story) so I will see other cfers walking up and down the halls. Of course they stick out in a pallitive care unit, they are the ones that aren't 80 years old and are out of bed. Also they're all wearing a mask, have either a port or picc, usually have a "mad at the world" face, and the dead give away is clubbing on their fingers. I haven't ever tried to socialize, to be honest most don't look very sociable, but today I was down for PT and while I was on the treadmill a guy from the other end of the room that I had already assumed had cf struck up a conversation. I was a little suprised but we talked for a few minutes, there wasn't any other patients down at the time we would bother and we were a good 15 feet away from each other. I was shocked that not only did the staff not site HIPAA and tell us to can it but they got involved in the conversation like it was a no big deal thing. More than that they seemed rehearsed in what they can and can't say to violate HIPAA. The other cfer would ask something like "how are your pfts" or something else specific to me and the physical therapist would get quiet and not say anything. Anything the staffwould interject would be generic "cfers usually..." I thought it was kinda nice to actually talk to another cfer. What is everyone else's experience with this sort of thing. Do you follow standard hospital etiquette and ignore the existance of any other patient or are you more social? I like the idea of conversing with the other patients as long ascontactrules are followed to avoidcontaminationbut I'm not going to be the one that starts the conversation.
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Other cfers in the hospital
- Thread starter robert321
- Start date
I'm currently in the hospital and the hospital I go to has a unit they like to admit all the cfers to (it happens to be the overfunded and under utilized pallitive care unit but thats a different story) so I will see other cfers walking up and down the halls. Of course they stick out in a pallitive care unit, they are the ones that aren't 80 years old and are out of bed. Also they're all wearing a mask, have either a port or picc, usually have a "mad at the world" face, and the dead give away is clubbing on their fingers. I haven't ever tried to socialize, to be honest most don't look very sociable, but today I was down for PT and while I was on the treadmill a guy from the other end of the room that I had already assumed had cf struck up a conversation. I was a little suprised but we talked for a few minutes, there wasn't any other patients down at the time we would bother and we were a good 15 feet away from each other. I was shocked that not only did the staff not site HIPAA and tell us to can it but they got involved in the conversation like it was a no big deal thing. More than that they seemed rehearsed in what they can and can't say to violate HIPAA. The other cfer would ask something like "how are your pfts" or something else specific to me and the physical therapist would get quiet and not say anything. Anything the staffwould interject would be generic "cfers usually..." I thought it was kinda nice to actually talk to another cfer. What is everyone else's experience with this sort of thing. Do you follow standard hospital etiquette and ignore the existance of any other patient or are you more social? I like the idea of conversing with the other patients as long ascontactrules are followed to avoidcontaminationbut I'm not going to be the one that starts the conversation.
I've never had any interaction with another CFer in the hospital. Shadyside has private rooms and I almost never do PFTs as an inpatient. The only time I am out of my room is to go grab a snack at night or in radiology. Having said that, if I'm in the hospital I'm really sick. I don't go in for tune ups or anything. So, I don't know that I would feel like socializing even given the chance.
I've never had any interaction with another CFer in the hospital. Shadyside has private rooms and I almost never do PFTs as an inpatient. The only time I am out of my room is to go grab a snack at night or in radiology. Having said that, if I'm in the hospital I'm really sick. I don't go in for tune ups or anything. So, I don't know that I would feel like socializing even given the chance.
Incomudrox
New member
Absolutely 0% in-patient. Too much risk. I recently learned they still have camps but you have to have a sputum sample that passes to go to it? Still even then I think it's a moderately bad idea with the number of people going... I'll pass. I sometimes chat it up with people at clinic but I keep a good distance. I'm not a germaphobe, i'm just not stupid if you want to call it that. A side from being skinny I'm a hard tell that I have CF. I don't have bloating or much clubbing only very slightly and I certainly don't have barrel chest either. Yay me.
Incomudrox
New member
Absolutely 0% in-patient. Too much risk. I recently learned they still have camps but you have to have a sputum sample that passes to go to it? Still even then I think it's a moderately bad idea with the number of people going... I'll pass. I sometimes chat it up with people at clinic but I keep a good distance. I'm not a germaphobe, i'm just not stupid if you want to call it that. A side from being skinny I'm a hard tell that I have CF. I don't have bloating or much clubbing only very slightly and I certainly don't have barrel chest either. Yay me.
Its all private rooms here too but there is a kitchen room that is mutual that would compare to a breakroom in a workplace. It has a refrigerator for patient use, microwave, tv, several tables, etc. It also has a mutual "waiting room" for lack of a better thing to call it. A large room with a bigger tv, those polyester things that pretend to be couches, a large saltwater aquarium, small library on one wall, game systems, etc. It was built with pallitive care and end-of-life in mind so the rooms don't quite feel like a hospital room (more like a nursing home room tbh) and was built to accomidate families. Its a 30 room floor and even with the current 8 or 9 cfers I would guess there is still 8 or 9 empty rooms. All that to say, it isn't uncommon to see other patients out of their rooms sitting around reading a book or going to the fridge for something.
The floor has someone's name on it so I assume it was built because of a large specific donation to the hospital instead of out of necessity and when the cf clinic started admitting at this hospital with the adult program this is where we got put, its kind of nice but a shocker and hard to explain to anyone coming to visit why I'm on the pallitve care floor. But its quiet with good nurses that aren't overrun busy
The floor has someone's name on it so I assume it was built because of a large specific donation to the hospital instead of out of necessity and when the cf clinic started admitting at this hospital with the adult program this is where we got put, its kind of nice but a shocker and hard to explain to anyone coming to visit why I'm on the pallitve care floor. But its quiet with good nurses that aren't overrun busy
Its all private rooms here too but there is a kitchen room that is mutual that would compare to a breakroom in a workplace. It has a refrigerator for patient use, microwave, tv, several tables, etc. It also has a mutual "waiting room" for lack of a better thing to call it. A large room with a bigger tv, those polyester things that pretend to be couches, a large saltwater aquarium, small library on one wall, game systems, etc. It was built with pallitive care and end-of-life in mind so the rooms don't quite feel like a hospital room (more like a nursing home room tbh) and was built to accomidate families. Its a 30 room floor and even with the current 8 or 9 cfers I would guess there is still 8 or 9 empty rooms. All that to say, it isn't uncommon to see other patients out of their rooms sitting around reading a book or going to the fridge for something.
The floor has someone's name on it so I assume it was built because of a large specific donation to the hospital instead of out of necessity and when the cf clinic started admitting at this hospital with the adult program this is where we got put, its kind of nice but a shocker and hard to explain to anyone coming to visit why I'm on the pallitve care floor. But its quiet with good nurses that aren't overrun busy
The floor has someone's name on it so I assume it was built because of a large specific donation to the hospital instead of out of necessity and when the cf clinic started admitting at this hospital with the adult program this is where we got put, its kind of nice but a shocker and hard to explain to anyone coming to visit why I'm on the pallitve care floor. But its quiet with good nurses that aren't overrun busy
imported_Momto2
New member
I had contact three times in the hospital (1970's and '80's). None would I choose to repeat. Once I roomed with a 15 year old girl (I was 12) who was so angry at the world I found it terrifying. The second time, I was introduced to an older woman in her 20's who told me horror stories about not being accepted by her community (highly religious) due to her CF. The third was rooming with an 8 year old when I was about 17. She was in the final stage of her life and I was privy to every second of it, 24/7. It ripped my heart apart. For sanitary and emotional reasons, I dont too much face contact among kids is a good thing at all. Adults? Definitely not in the hospital while ill. In other circumstances with masks and maintaining distance, worth the risk occassionally.
imported_Momto2
New member
I had contact three times in the hospital (1970's and '80's). None would I choose to repeat. Once I roomed with a 15 year old girl (I was 12) who was so angry at the world I found it terrifying. The second time, I was introduced to an older woman in her 20's who told me horror stories about not being accepted by her community (highly religious) due to her CF. The third was rooming with an 8 year old when I was about 17. She was in the final stage of her life and I was privy to every second of it, 24/7. It ripped my heart apart. For sanitary and emotional reasons, I dont too much face contact among kids is a good thing at all. Adults? Definitely not in the hospital while ill. In other circumstances with masks and maintaining distance, worth the risk occassionally.