Refrigerate Enzymes?????

[LoveShines4Austin]

I was on the phone with a nurse from UCDMC in Sacramento where we have been taking Austin for 13 years and she mentioned she had been to a conference and was told that enzymes should be kept in the refrigerator to prolong there efficacy. I was kinda shocked, being that I was always told that moisture would cause them to stick together and start to break down. I went to my first CF support group up here (There were only 3 of us) and when I told them what I had been told, they freaked! So I called the nurse back today and called her on it. She told me that one of the doctors had over heard her tell me this, and had told her that she was very premature with her information. She had assumed that it was information that would be giving to all patients from then on. She assumed wrong.

Has anyone else ever been told to keep there enzymes in the refrigerator, no matter what time of year it is???

 

[jamey]

i take ultrase mt20 and the label says store between 59f-77f in dry place, do not refrigerate

 

[Faust]

To answer your question: She's dumb as poo. The put enzymes in their container with a humidity eater for a reason. All of us get X amount of enzymes with each perscription, it's generally not a large amount. We usually get a bottle or two for our use and put the rest in the closet. BTW, not only is she dumb, that whole "She mentioned something ahead of time that is some deep dwelling mature we are trying to get out to patients in a timely matter", is dumb also. Basically she is dumb and stupid to boot on her explanation. I can guarantee you no physician told her that. She also sucks at lying.


Get your one or two bottles of enzymes out for your use, and keep the rest in the closet. Too bad there isn't a generalized I.Q. test for nurses, and for that matter, all health care workers.

 

[thelizardqueen]

I was in hospital once when my ward nurse told me to put my creon in the frig. I looked at her like she was crazy, and kept on doing what I was doing. I hate getting false information from people who should know better. This one time I was at a checkup when a student doctor informed me that my lungs had gotten worse and I should take better care of myself. My doctor looked at him, and informed him that my lungs were at the best they had ever been, and not to assume anything without any other kind of backup information to support his point.

 

[anonymous]

Ah, med students and interns! It's so much fun to mess with their impressionable minds, especially while you're completely naked. Last spring, one asked me if I knew how I had gotten CF. Don't you love that one? I told her it was sexually transmitted.

She dutifully jotted this down and then said, "I didn't know Cystic Fibrosis was an STD."

"Yeah," I said, "my parents had sex, and it was transmitted to me."

D'oh!

Q

 

[Faust]

You should have actually SHOWED her how it was transmitted <img src="i/expressions/face-icon-small-smile.gif" border="0">


You should have told her pregnancy is actually an STD too.

 

[kybert]

some brands do have to be kept in the fridge. as far as im aware the more popular brands dont need to be.

 

[Faust]

<blockquote>Quote<br><hr><i>Originally posted by: <b>kybert</b></i><br>some brands do have to be kept in the fridge. as far as im aware the more popular brands dont need to be.<hr></blockquote>

I can't see why. It's a gelatin capsule, with the three major enzymes that we are lacking represented. Nothing magical about it. The process seems to all be the same.

 

[kybert]

i cant really see why either. guess its a question for the manufacturers. could have something to do with the fact that they are of poorer quality than the well known brands.

 

[anonymous]

As far as stupid things the medical professionals have said or done.... Lets see, I caught an older RT in the hospital trying to give DS CPT without him having a shirt on -- HELLO?!! Quit SLAPPING my kid.

 

[thelizardqueen]

LOL. I had a student nurse once ask me how I got CF. I looked at her like she was growing two heads, and informed her that I caught it when someone coughed on me. She looked at me and said 'no...really?'. PLease - sometimes I shake my head and wonder.

 

[EnglishCFGuy]

Haha! These Nurse anecdotes crack me up. <img src="i/expressions/face-icon-small-smile.gif" border="0">

My contribution:

was once 'suddenly' taken ill, Breathing (SAT's) dropped, lungs on about 50% (from 80's) - you get the idea. As I lay in a 'general hospital' bed waiting for my parents to get me transferred to a 'proper' CF hospital, the Nurse comes along, looks v.worried and says:

"You're having trouble breathing? Um... shall I give you some Creon emzynes? Will that help?"

AAAAAAAAAAARRRRRRRRRRRRRRGGGGGGGGGGGGGHHHHHHHHHHHHHHHHH! RUN!!!!!!!!!!!!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[littlepinkstar]

Hey! Oh my gosh... I know your son Austin Warkington (I think thats how you spell it.) We went to school together for a long time at Project City! I have cysitic fibrosis also. And Yeah, I go to UCDMC too HOW AWESOME! Lol, sorry I just got really excited. Anyways, they never told me to put my enzymes in the fridge... weird.

 

[JazzysMom]

I have been on 3 different enzymes since my dx 30 years ago: Viokase, Pancrease and now Ultrase.....never have I heard of anyone having to refridgerate their enzymes. I also didnt really pay attention, but I do know all the CFers I have encountered over the years in the hospital have their bottles right next to them so if they eat/snack they can pop a few.

 

[65rosessamurai]

My Turn!!
If we're discussing Intern and "greenhorn" nurses, I recalled a nightmare which was a "greenhorn" nurse trying to give me an I.V.!! The RN was overlooking the process, and the greenhorn had probed me at least 9 times before the RN could see in my face I had enough!! Maybe that's why I can't stand needles anymore!?


However, my Army retiered Medical Field Nurse Brother-in-Law could probably vouch for some of those nurses with the I.Q. equivalent to their "bust" size!!

He's hilarious, though!

I've never refrigerated my enzymes, either, in fact, I'm sure that the moisture will cause the geletin capsules to stick together. As for the refrigeration of the enzymes, it's possible a reverse reaction of the enzymes may occur, and the potency may actually drop!

If the hospitals allow the enzymes to be right next to the CF patients, it must be a hospital that knows CF patients real well! I can't see where normal hospitals would allow "prescription medications" lie around, unlocked! (of course, anyone stupid enough to take them, will be constipated for at least a week!!)

 

[JustDucky]

I was told never to refridgerate enzymes...they just don't like moisture! As for a nurse/ intern story...I have a good one. You have to remember that I was an ICU nurse before I became too ill to work so this will be more humorous...
An intern was called into my room to put a feeding tube down my nose. I had just been trached and on a vent and TOTALLY awake, was in pain and not a happy camper to begin with. I was also unable to speak, so I couldn't voice my discomfort. This intern, who was obviously nervous (his hands were shaking), got the kit out and lay it out all nice and neatly on my table and then started the procedure. He took the feeding tube, put the lubricant on it and slowly started to insert it into my nose. He went soooooo slowly, it hurt sooo bad I wanted to kick him where it counted!!! I finally had enough of the pain, grabbed the tube yanked it out of me and then I put it down myself at a speed that was comfortable for me!!! The doc just stepped back into the wall, looked as pasty as the wall and said nothing until the nurses came into the room...the vent was going nuts as I was gagging and coughing, so they were coming in to investigate. The took one look at the doc and asked what happened. All he could say was "She put it down....she put it down!!". The nurses laughed and then informed him that I was a nurse. If only I had a camera........The look on his face was priceless!
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Sunnie]

What CF clinic do you take your son to? Is it the Peds clinic or the adults? I go to UCDMC adult clinic, and I know that you can switch over to adults at the age of 16. Anyways, manufactorer directions usually state not to refridgerate enzymes due to humidity. Mine have always been stored in a safe, dry place. If you go to the adults clinic the nurse there is new. She's just learning the ropes and may have gotten the meds mixed up. If it's the peds clinic, well let's just say that I wouldn't trust them with a dead dog.

 

[LoveShines4Austin]

It's the peds unit. I miss Bridgette! She would never have given me wrong info and I would never have had to keep calling her to get back to me on the status of his vest, like I have to do again tomorrow. grrrrrr I'll ask about being seen in the adult clinic when we go back in January.

 

[Sunnie]

The adult clinic is pretty nice (the people I mean). They're big about prevention and about their patients having the best quality life possible. I didn't know Bridgette left. Then again she was there when I first started coming in. That was over 21 years ago. Is Dr. Jarrar (sp?) still there. He was the best CF peds doctor I had. He's the one who had me transfer to adults and it is the best thing he could have done for me. I'm amazed that Dr. McDonald would even put in a request for the Vest for your son. She was dead set against anything that wasn't regular pounding or anything new for that matter. Maybe she's finally changed.

 

[anonymous]

When DS was hospitalized, a relative, who was a pharmacist at the hospital told us to bring our own enzymes, which we kept by the bedside. The reasoning was that they didn't carry all the individual brands of enzymes and... The doctor who admitted us, who runs the local CF clinic said they had GENERIC enzymes for all their patients and he seemed to think that that was okay. Eeek!

Liza