What you want new nurses to know!

[Jeana Lynn]

Hi all,
I am going to speak to a group of new nurses at Idaho State University about life with Cystic Fibrosis and things CFers would like them to know. What a rare opportunity! Please share all the things you would like these new nurses to know about CF patients before they become your nurse in a hospital some day! ???

 

[Aboveallislove]

What I would say is that they should know that every CF patient and parent is different and copes in a different way and that with this disease coping is key so do what they can to assist. For instance our DS doesn't like "goofy demonstrations with dolls" or "down talk." And he likes to know what to expect and an honest explanation of if it will hurt. So don't just come in with the start talking childishly about a procedure. ASK the parents what special requests and how their kids like things done. And then take note and figure out other ways to help. So for instance my husband and I are drill sergeants on infection control. Knowing this before PICC line placed our great nurse brought us a wheel chair ahead of time to wipe down if we wanted. But on the IV placement no one told us it likely would need to replaced within a few days or the name of the antibiotic. Follow lead and if the parents ask lots of questions volunteer information and share details. And don't make assumptions on knowledge: Most CF parents are highly educated on the disease and treatments and know the best way to time everything--use them as partners; don't view them as interlopers. We had AMAZING nurses who did all of this.

 

[Ratatosk]

Ditto on the infection control. Especially if there are other CF patients on the floor. Gown up. Mask up. Use hand sanitizer. We don't need you bringing in stuff from other rooms and vice versa.

Try to keep on schedule. If vest/neb treatments are scheduled every 4 hours, we need to either be able to count on the RT's or at the very least have access to the nebs and meds so we can do it ourselves.

 

[beautifulsoul]

The only other thing I can think of is hand washing. Super important! I still see doctor's, nurses, social workers and other medical personal who don't wash their hands upon entering or leaving the room.

Good Luck!
Hugs,

 

[kenna2]

I agree with the infection control, meds need to be on schedule, and making sure we get enough rest. I always make sure that if I'm on the overflow floor for when our CF floor is full that I tell them not to wake me at night for meds. Let me sleep! I think a lot of nurses don't realize how much sleep we need and being in the hospital isn't exactly the most quiet or comfortable of all places. Also for those of us who have hearing loss, let the nurse relieving/ doctors coming in/ or room service people know that they need to speak up or lower their mask when asking us questions. Hearing aids are expensive and I know some other patients don't bring them to the hospital because we don't want them to get stolen or risk losing them in the shuffle of all the other things handed to us.

 

[Printer]

That enzymes need to be taken with the first bite.

 

[LittleLab4CF]

Amen to the average CFer or CFer's parents/caregiver being well above average with regard to knowledge about everything CF including the respective CFer's response to the treatment for her/his current issues. Doctors and nurses are often astonished by my data packet I attach to the forms you get at all​ first appointments​ or any outpatient treatment. We average something like 12 prescribed medications​, 6 to 10 supplements and most of us have a longer than usual list of allergies, in part because we have been lifetime guinea pigs. These days I attach my doctors list which is getting long enough to be necessary.

Undoubtedly there are worse conditions that requires considerable time and attention but a few weeks ago I was at a new hospital filling out forms. Not my fault/problem that they won't scan in my neatly typed lists. What is uncommon for the medical techs are getting complete listing of our doctors. As if doctors bother to call another doctor treating you.

Unlike most people being hospitalised, we are often about as close as possible to being professional patients and we know what works and generally what doesn't fly during a stay. I don't want or need my life regulated anymore than required. I'm a good patient for the most part. I'm sure many CFers are great patients up to a point. We owe it to our nurses to forewarn them of any concerns before they become a point of conflict.

I will tolerate a lot but we are hospitalised when we can't control pain, need help with hydration and nutrition, and infection that is serious, requiring close monitoring, treatment and potentially​supplemental oxygen. If pain control is marginal, thanks to the doctor treating me, getting my medication on time is paramount. Bad service is not a big deal until pain is the price. I understand overworked and understaffed but my money doesn't have any problems. To that end, I try to express any problems with my services when hospitalised with the right person. Most hospitals have patient's advocates​ that will get to the root of the issue. These are big guns for small problems. It would be overkill for something that could be resolved with the floor nurse in charge.

New nurses are often dedicated and nurturing healers. Too often people don't know that they aren't the health police, it's important to reassure patients they are there to help. Nurses in turn can make a difference by simply telling patients that they are there for you and encouraging them to call if they need anything. My ENT is a very busy and brilliant pioneer in robotic surgery. He gives me his card, complete with his cell phone number. It's a great feeling, at the same time, my nose would have to be on fire before I'd call him. My guess is he gives out the same card to nearly all patients and we all feel the same way. It's brilliant.

LL

 

[beautifulsoul]

Also for those of us who have hearing loss, let the nurse relieving/ doctors coming in/ or room service people know that they need to speak up or lower their mask when asking us questions.

That's a good one! I used to be deaf. I depended on lip reading. Unfortunately, some people refuse to lower their mask for some reason or another. I had one Dr. who I routinely saw every 3 months and she happened to tell me she was sick every single appointment for several years. Therefore, she couldn't lower her mask. In my personal opinion I thought she refused to lower her mask because she thought I was the contagious one. Dr.'s or nurses who don't specialize in CF don't fully understand the reasoning for wearing gowns, gloves and masks. You will not catch my germs by simply lowering you mask. *sigh*

 

[Rudyrose]

We are so used to feeling a certain way that we sometimes downplay our symptoms , not on purpose but to us sometimes the abnormal has become normal

 

[Jeana Lynn]

Well, I gave the speech and the new nurses were very interested in what CFers had to say. I shared the ideas that you told me here and I was asked to come speak again to another group! Thanks for your help!

 

[JakeS]

Coconut water mixed with juice and coconut water concentrate, with salt added....much better for you than gatorade, and far more effective...without proper hydration everything goes wrong.