Mike is being admitted to the hospital again in about an hour. It's been 3 months and then 3 months before that. He'll probably keep up this pace until the tx. Usually they lend him a computer so he'll probably be on here. At Hasbro Children's Hospital, they just put into effect a rule that all CF patients are in isolation. you have to wear gowns and masks if you go anywhere and people visiting you have to gown up. It stinks. Do others have that rule?
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Mike
- Thread starter katyf13
- Start date
thelizardqueen
New member
We only have that rule for people who have something contagious on the respiratory wing of the floor they put us on, like the patients with TB or something. CFers are pretty much free to walk around wherever they like, to a certain point.
Edited to add: We don't have any cases of Cepacia. Hence why CFers aren't isolated.
Sorry to hear that Mike is going in again so soon. Hope he feels better soon!
Edited to add: We don't have any cases of Cepacia. Hence why CFers aren't isolated.
Sorry to hear that Mike is going in again so soon. Hope he feels better soon!
Katy,
At Boston Children's, we have to be in a private room, not in seclusion. The docs, nurses, pts etc have to gown and glove because they go from patient to patient, but the families or visitors don't.
I'm sorry Mike is bad in, that stinks.
We're back in too.<img src="i/expressions/face-icon-small-sad.gif" border="0"> My MIL lives in Cranston and we go by Hasbro all the time, If I was there I'd visit (w/ gown and gloves of course)
At Boston Children's, we have to be in a private room, not in seclusion. The docs, nurses, pts etc have to gown and glove because they go from patient to patient, but the families or visitors don't.
I'm sorry Mike is bad in, that stinks.
We're back in too.<img src="i/expressions/face-icon-small-sad.gif" border="0"> My MIL lives in Cranston and we go by Hasbro all the time, If I was there I'd visit (w/ gown and gloves of course)
The last year or so that Rip was in the hospital they had that rule for him. It was to protect him as his immune system was not so great by then.
I don't know about the rule for the CF floor.
Hope Mike's tune up goes well and he can see your lips smiling soon. I'm sure you are both good at letting love shine thru your eyes to each other.
I don't know about the rule for the CF floor.
Hope Mike's tune up goes well and he can see your lips smiling soon. I'm sure you are both good at letting love shine thru your eyes to each other.
TemptressOfTheSea
New member
Katy,
Sorry to hear that Mike is in the hospital. I also go to Hasbro for tune-ups, and since I culture MRSA, they isolate me anyways. I didn't realize it was policy across the board now.
I know that they tend to be a little lax or they just don't follow the policy out of lazyness or stupidity. Also, they've told me I can leave the room as long as I'm gowned and gloved, and then they pull a 180 and say I can't leave my room at all!!!
Sorry to hear that Mike is in the hospital. I also go to Hasbro for tune-ups, and since I culture MRSA, they isolate me anyways. I didn't realize it was policy across the board now.
I know that they tend to be a little lax or they just don't follow the policy out of lazyness or stupidity. Also, they've told me I can leave the room as long as I'm gowned and gloved, and then they pull a 180 and say I can't leave my room at all!!!
blindhearted
New member
Sorry Mike is in the hospital. I hope he gets feeling better.
Duke has that policy, or at least that is what they claim to me. I culture MRSA so I am put in isolation, or lock-down as I call it, when I go in. They claim it is for all CFers, but I cant leave my room, so I dont know the difference. The only people that "dress-up" to come in the room are the doctors, nurses, etc. My family or anyone who visits doesnt have to unless they are going to visit other patients.
I can leave the room if I am gowned, gloved, & masked but still cant touch anything at all. not even with gloves on. I can remove my gown, gloves, mask when I am outside of the hospital (like the duke gardens) but must put everything back on before going back inside.
Duke has that policy, or at least that is what they claim to me. I culture MRSA so I am put in isolation, or lock-down as I call it, when I go in. They claim it is for all CFers, but I cant leave my room, so I dont know the difference. The only people that "dress-up" to come in the room are the doctors, nurses, etc. My family or anyone who visits doesnt have to unless they are going to visit other patients.
I can leave the room if I am gowned, gloved, & masked but still cant touch anything at all. not even with gloves on. I can remove my gown, gloves, mask when I am outside of the hospital (like the duke gardens) but must put everything back on before going back inside.
Sorry to hear he's in the hospital again. What a drag! I do have the same thing, where everyone who comes into my room has to wear a gown and a mask. It does suck for everyone to have to do that, but really it's a nice protection for the patient. It kind of makes me feel good to know that extra precautions are being taken. Good luck, and I hope he feels better soon.
Kelly
Kelly
Thanks for all your well wishes! When we went in last night we asked what the deal was. Visitors don't have to gown up or anything. The doctors and nurses are supposed to, but they just wear gloves. Suppposedly if Mike leaves his room, he is not allowed to remain idle, he has to keep walking. And he can go outside but not to the cafeteria or anything. I guess it's not a huge difference, and anything that will keep him healthy is good. Mostly it just adds to his boredom ;-)
We are trying to get permission to bring in our puppy to see him. He doesn't shed so that might help!
We are trying to get permission to bring in our puppy to see him. He doesn't shed so that might help!
Oh Katy ~ I am so sorry Mike is hospitalized. He will be better for it but its hard on you and all the worry.
Yes, we have the same rule here but its to protect Mike. Its a good rule ~ Some hospitals that dont have that rule, the patients come out sicker!
Hang in there!
Karenb
Yes, we have the same rule here but its to protect Mike. Its a good rule ~ Some hospitals that dont have that rule, the patients come out sicker!
Hang in there!
Karenb
I am glad they have the rule. It would be devastating if he caught anything that ruined his tx chances after all his hard work to stay healthy. At least we can go outside now that its nice out.
He could probably choose to do home IVs but the thing that really makes him feel better is the manual chest pt 4 hours a day. Even on a good day that is impossible to do at home. He gets up so much junk just in the first few days.
He was able to sleep last night without coughing too much!
He could probably choose to do home IVs but the thing that really makes him feel better is the manual chest pt 4 hours a day. Even on a good day that is impossible to do at home. He gets up so much junk just in the first few days.
He was able to sleep last night without coughing too much!
is he sick or is this just to keep him healthy for when you do get the call?? Make sure someone lets the transplant people know hes in. I hope he feels a lot better and gets that "CALL" soon!!!
ps.- remember we talked awhile back because Im going to B&W too..well I finally have my app. for July 5!! is he still the same spot on the list?
ps.- remember we talked awhile back because Im going to B&W too..well I finally have my app. for July 5!! is he still the same spot on the list?
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
I am glad they have the rule. It would be devastating if he caught anything that ruined his tx chances after all his hard work to stay healthy. At least we can go outside now that its nice out.
He could probably choose to do home IVs but the thing that really makes him feel better is the manual chest pt 4 hours a day. Even on a good day that is impossible to do at home. He gets up so much junk just in the first few days.
He was able to sleep last night without coughing too much!</end quote></div>
Katy, I'm curious if Mike has tried Hypertonic Saline as well as if he uses the vest. The combo of these two twcie a day has really started keeping me cleared out. Anyway, just a thought, but I am sure like me you have tried everything. Hang in there. I may be joining Mike on the List at BWH sometime later in the year, but hopefully you guys are done and recovering by than. I just got approved to start the eval this week.
Brian
I am glad they have the rule. It would be devastating if he caught anything that ruined his tx chances after all his hard work to stay healthy. At least we can go outside now that its nice out.
He could probably choose to do home IVs but the thing that really makes him feel better is the manual chest pt 4 hours a day. Even on a good day that is impossible to do at home. He gets up so much junk just in the first few days.
He was able to sleep last night without coughing too much!</end quote></div>
Katy, I'm curious if Mike has tried Hypertonic Saline as well as if he uses the vest. The combo of these two twcie a day has really started keeping me cleared out. Anyway, just a thought, but I am sure like me you have tried everything. Hang in there. I may be joining Mike on the List at BWH sometime later in the year, but hopefully you guys are done and recovering by than. I just got approved to start the eval this week.
Brian
Katy, I'm so sorry to hear about how Mike is doing. Many thoughts and prayers your way about this. I hope you two get some news fast on the transplant too!!
I can't comment on whether or not our hospital has those "isolation" procedures for a CF patient, but even though it may stink , it is REALLY going to help keep him away from more bugs. The getup might suck (gown, mask....) but it can be very beneficial to him.
I can't comment on whether or not our hospital has those "isolation" procedures for a CF patient, but even though it may stink , it is REALLY going to help keep him away from more bugs. The getup might suck (gown, mask....) but it can be very beneficial to him.
Amy- He doesn't have an infection, he's just getting a cleanout, but he feels worse than usual. Hopefully it'll be the last one before the transplant! Good luck with your appointment, let me know if you have any questions. I have email addresses of others who have been through it.
Brian- He did try the HS but he found it incredibly irritating. I know you're supposed to give it a long trial, but he used it for about a week and hated it. I've suggested he try it since then and told him about how people on here really like it and it takes a while to get used to. He's thought about it.
Thanks everyone! Hopefully they will get him a laptop and he can see this!
Katy
Brian- He did try the HS but he found it incredibly irritating. I know you're supposed to give it a long trial, but he used it for about a week and hated it. I've suggested he try it since then and told him about how people on here really like it and it takes a while to get used to. He's thought about it.
Thanks everyone! Hopefully they will get him a laptop and he can see this!
Katy