Telling the truth to home health nurses

[JazzysMom]

I learned last year that telling my home health nurses any problems besides something that is wrong with my picc line is a waste of time. So they come, they ask the ???< they do he paperwork & I say fine, fine, yes, no etc. My ?? is who has actually called the nurses with problems that are not directly related to the picc line? When I presented a problem last year they just told me to call my doctor. Well, duh, I would have done it first, but you said to call you! So this time when I came home I still had the hemoptysis. What does it matter to them (except to cover their butts) if I do. I realize I am being a bit troubled over something stupid, but I feel it just causes more headaches for me if I tell them then to contact my doctor directly!

 

[Landy]

I guess I only ask them PICC line or IV related questions. I thought any other questions were to be directed to the doctor? Am I 'doing it wrong'?

 

[spicyone18]

Oh I can't STAND my home nurse! I actually called my clinic yesturday cause she drives me so insane. She tells me to call her whenever I have a problem, but I wouldn't call her if my life depended on it! She has no clue about CF and it doesn't matter how much I explain to her, she insists that she is still right. For example: she tells me that CF is a every other generation type thing. CF'ers aren't allowed certain products like the gluten free type thing. OH she gets on my nerves! So if I were to have a problem I skip over her and call the clinic.

 

[JazzysMom]

My nurses ae pretty knowledgable about CF, but when push comes to shove they arent my doctors. If I tell them a problem not related to my PICC line chances are they are going to run it past my doctor or have me do so. I might as well do that from the beginning. In addition any problem that is addressed with them gets readdressed with each visit to see if its still a problem. Like I said outside of covering there butts I dont see a need. If I was still new to the CF scene or home IVs then maybe, but I am not so I wont!

 

[NoExcuses]

I would 100% tell your doc EVERYTHING.

Even if it's PICC line related.

I'm blessed to have a good relationship with my doc and he encourages me to keep in touch with him. Granted, I've only been on Home IV's once.

But every question/concern I picked up the phone and called him....

 

[Tess]

when I was doing home IVs at the end of march first of april my nurses <the one I was suspose to have throughout went on vacation> So I had a different nurse like everyday... none of them thought that I didn't know what I was going they were very impressed of how much i really did know. Shy of mixing my med I did like everything.... flushing the lines, hooking up the meds..... they weren't really helpful just made sure that all was going well..

 

[HairGirl]

Honestly I don't call my home health nurse! they come over the first day to sign papers etc.... but after that nothing, when I had a PICC (I have a port now) my husband would change the dressing for me, and pull it out at the end! Now that I have a port, my husband flushes it every month so why not change the needles every week on meds? So I don't tell my Home Health Nurse about anything!!!!!!

 

[LisaV]

I think you've got to recognize and deal with the home health care nurses' limitations. They rarely know anything about the chronic conditions - at least they rarely know as much as those with them. So my husband used to always call his doc.

The also rarely know anything about the psychological aspects of living with disability or chronic illness. They are used to being able to fix everything all better, or if they also work for hospice sometimes, then see someone through their last 6 months. They know nothing about maintaining a healthy marriage where one spouse has a chronic illness. They were downright vicious with me because I refused to do home IVs (my husband did not want me doing anything that even smelled of nursing). I finally just stayed away from home when they were there.

ANyway, we thought of them as clueless folks who knew how to get a line in/out and flush -- and hopefully recognize redman syndrome.

 

[JustDucky]

I have a pretty good home nurse who checks up on me frequently to make sure that I am still breathing. When my port was acting up, she actually called after I had it declogged to make sure everything was okay. When I am ill, she does weekly visits to check my vitals and such and I do feel comfortable calling her if problems arise regarding my port. But as other posters have said, I do call my doc for more acute changes like high spikes in my temp or other problems that might indicate a need to be seen by her.

Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

I had a 102 fever and was so short of breath I couldn't speak. My DH called the home health nurse and she just said I had to call my doc. We asked how to get ahold of him (like, they SHOULD have that info. for emergencies, no?)... She had no idea. So, instead of getting answers from her OR from my doc who I couldn't call cause it was after business hours, I spent 8 hours in the ER.

I do not like home health, though hate hospitals even more, so when I'm on IVs, I hold my breath and PRAY nothing goes wrong. When I does, I am usually left to fend for myself.