More info on Tune Ups...Jarod and Emily

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anonymous

New member
Thanks guys....but I am curious how you know it is time for a tune up.

Also....seems like other than the IV meds everything else done (Nebs (unless stronger in hospital...pls tell me ) + PT + high Calorie diet) you can do at home. Can you avoid the hospital stay all together and just get a nurse to come to you instead....

To Jarod ( the Smoker hater...loved it<img src="i/expressions/face-icon-small-smile.gif" border="0"> and Emily:

Since you guys are in your early twenties I am curious how often you need tune ups...Do you like/hate/indifferent to hospital stays.

Thanks Guys<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
Usually they want you to stay at least three or four days to make sure the IV dosage is correct.

Maria (mother of Samantha)
 
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cfgirl38

New member
I had my first Iv in July and the only thing I went to the hospital for was the picc line. A home nurse came to my house and sat with me until after the first dose approx an hour or more.
 
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EmilysMom

New member
Since Emily is not answering right now....here you go! She seems to be on a "two or three times a year" tune-up these days. She usually goes in for an overnight only now and goes home with her IV meds because she has the advantage of having a port. She does all her own IV meds at home and has them delivered to our front door by a home care agency. She has to go to a drawing station once or twice to have a peak/trough drawn. ALthough last time, she had to stay a day or two because they put her on a new med that she'd never been on before. She can tell the name...I can't remember the name of it now. Em?
She always knows when it's time when the cough gets bad, she can't laugh at all without coughing, can't walk very far, can't do stairs, feels lousy, can't sleep well, naps endlessly, and the list goes on. You will learn to recognize the "signs".
 
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jenhum

New member
I do my IV's entirely at home now....SO much better than the hospital, even though it can be more tiring for whoever is helping you (my mom in my case). Since I almost always do medicines that I've done before, I don't have to start in the hospital. And the home-health nurses come out to draw my blood nd change my dressing/needles at my house.

If you can find a home healthcare company that has the little balls of medicine (I forgot what they are called!) those are the BEST b/c you aren't tied to a pole or even a pump and you can go about your day very normally once you feel up to it.
 
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jenhum

New member
oh, and I typically do IV's one-two times a year.

edited to add: I know I'm not Emily or Jarod but I'm in my early 20's too so I thought I'd answer <img src="i/expressions/face-icon-small-smile.gif" border="0">.
 
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Emily65Roses

New member
I have actually done at least one round of IV meds entirely at home. After I got my port in, there was one time I was on meds that weren't new to me. So they didn't need to observe me overnight, and I didn't need a PICC. I go on IV meds about twice a year, like my mom said. They only keep me overnight anymore when it's a med I haven't been on yet, so they can check to make sure I don't react badly to it. If it's stuff I've been on before (IV meds I've been on: Gentamycin, Ceftaz, Tobra, Zosyn, and Meropenem) they just send me home and have the home nursing company deliver my stuff. The name of the med, mom? Meropenem.
The funny thing about the "signs" my mom was talking about, is that I pretty much always have those now. If I go on IV meds, it gets a little better for a little while (maybe a few weeks), but then it starts back down to where I am now. I just go on IVs twice a year to try and keep the crap in there from smuggling in their little pseudomonas and staph buddies.
 
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Emily65Roses

New member
Oh and as far as hospital stays. I missed that part. I don't hate them excessively, but I'd rather be home. Mike can't always stay with me overnight if I have to stay (he has school too!), and I hate when I'm there alone. So if I can do IVs at home, I do. Plus being home is just more relaxing for me. Granted I have to make sure I stay up late and wake up early to do meds at the right times, but I can sleep in my own damn bed, I can go to Mike's house if I feel like it. I can still go to class (which I often do while on IVs), etc etc. So I prefer to do it at home, if it's possible. <img src="i/expressions/rose.gif" border="0">
 
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Mockingbird

New member
I really should have gotten a tune up a year ago... and two years ago... okay, since probably three years ago, but I've been moving around so much lately I haven't really been able to. I'm on cipro right now, the doctor thinks that should clear me up and I won't need IV meds, so we'll see. That doesn't have anything to do with your question, though, does it. =-) I'd say i should go in about once every one or two years.

I don't mind being in the hospital that much. Usually I just look at it like a little vacation where I don't have to do much. And I'm very good at entertaining myself, too, so i don't get bored that easily. But that was when I was a kid. I don't stay in the hospital anymore, I do it all from home. Staying in the hospital is nice, but a week is a long time to be away from everything, and I get wayyy behind. =-)

And I can usually tell when it is time, by the way I feel, as far as getting winded, or difficulty breathing, etc. And anytime there is a significant drop in my PFT's the doctors always reccomend I do something about it. =-)

Jarod
22 w/cf
 
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NoDayButToday

New member
I realize I'm not in my 20s or Jarod or Emily, but I've definitely had my fair share of tune ups (I lost count awhile ago :frown<img src="i/expressions/face-icon-small-wink.gif" border="0">. I've done IVs both ways- at home and what they call 'in house' (in the hospital). When I do them at home, I usually go in to have my PICC put in, maybe stay for 24 hours worth of doses and then go home to meet my home IV nurse.
What I like about home is, obviously, you have all the comforts of home. You also can do things (movies, visit friends) that you can't do 'in house'. I also like the control you have- I feel like I am less likely to make a mistake than a nurse who has 4 other patients. The hospital is bearable though, and you can really focus on resting while there. When I get home from the hospital I'll leave my breakfast bowl on the table and later think "Why hasn't anyone taken that yet?", then I realize I'm home LOL.

Oh... how often I need IVs, well for a long time I was once a year, but this past year I've done them four times. Hopefully I've bounced back more, but I'm not sure I'll ever be once a year again.
 
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jamey

New member
last year(2004) i had 6 "tune ups". sometimes i stay and sometimes i do them at home. if i came home though i would go in for a couple days so the doc could get the drug levels correct.then the day i go home they deliver all my stuff to my room before i left and i would take it home. and since i know what im doing and dont need the home health to come my doc just gives me a slip to take to my local little quack hospital and have some bloodwork done and they fax him the results.
 
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