Wednesday, April 21, 2010

Why I Don't Do IV's at Home

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Pete's avatar - Go to profile

Pete · 780 weeks ago

Can you subtitle ur future vids dude? Its really easy to do and the tools are intergrated into Youtube ! You litrally type out a text doc with what you said and it matches it :-)

So il ask here because im interested...WHY dont u do them at home? Oh...and it says its a private video so I cant watch it anyway....Gotta subscribe to you on Youtube I guess, or u made a mistake and not made it public?

Ive just got out of hosp myself after 2 weeks physio and IV's and have managed to gain nearly a 15% in lung function, best in 7 years. Clearly spurning me on to do more to keep it that way !

Hope they are sorting you out Dude, il chck ur comments to see if you reply, OR you can post ur reply on my blog (any post) at callmekiz.blogspot.com !
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RunSickboyRun's avatar - Go to profile

RunSickboyRun 96p · 780 weeks ago

I made the video private on accident, but now it's up so I hope you got a chance to watch it! I'll check out the sub-title thing on YouTube, thanks for the heads-up!!

So what was the secret to an increase of 15%??
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Tara's avatar

Tara · 780 weeks ago

For me, I start out in the hospital if I've been hit really hard and don't have the energy to do home IVs, but I feel like I have less chance of catching new germs when I do home IVs. So far, at 34 years old, I only culture PA. A lot of my frequent flyer friends also culture MRSA and/or have cultured c-diff. The hospital grade bugs scare me, and that's why I prefer to do home IVs when I can. That being said, I just spent 11 days in the hole in March and came home for 2 additional weeks of antibiotics. I never missed a dose, or one of my 4x/day treatments. But I'm pretty hardcore when it comes to compliance.

Thanks for explaining! I always wondered the answer to this question.
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Kristi Bowers's avatar - Go to profile

Kristi Bowers · 780 weeks ago

that is what i like about our cf community, do what works for you! kaleb stays in the whole for 1-3 weeks then when we know he is on the mend we go home with iv's for 2-4 weeks. it might change when he is older but we are super compliant so it works so far! good luck and freedom soon!
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Summer's avatar

Summer · 780 weeks ago

Ronnie, my doctors are not fans of home i.v.s either. They have let me do them in the past but really only to make me happy. Not to better my health. I don't respond well to them either. But I do like having the option there. I haven't done them since right after the birth of my daughter, which was when of course I loved the option. I was able to go in for 14 days then go home on 14 more days of antibiotics which was great. Because my daughter was two weeks old and it crushed me having to leave her. I also always think it would be nice to have the option say an emergency came up, like a death in the family or something to were you HAD to leave the hospital. But as far as using it for my care all the time, it just isn't a good option for me. But I do know of others who it works really well for. I guess it is just further proof of how CF truly is different for each of us! Hope you get better soon! I went in right before my wedding and it helped pass the time, bc I had something to look forward to and to talk about! Plus I had all of my wedding planning stuff with me! =)
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Josh from Joshland · 780 weeks ago

I'm not a fan of going in patient for IVs. Every time I do, I end up staying longer because I catch something while I'm there. I never get anymore rest in the hospital than I do at home, so I'd rather sleep in my own bed. I'm always diligent about treatments anyways, so that is never a problem. And I find the home visits and schedules easy to manage for the most part.

However, I can see the benefit of being in The Hole. No stress of getting up in the middle of the night, or pumping the wrong drug at the wrong time, or forgetting to flush the IV, and...a personal benefit for me..CABLE TV! We don't have it at home, so any upgrade is a plus. :-)

I agree with Kristi...are community is made up of great individuals that do what works for them. Live the dream, my friends!

Hang in there, Diesel. Let me know if there is anything I can do for you, M'boy!
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Mandie · 780 weeks ago

Ronnie when we first changed clinics Courtney's dr didn't let us do home IV's I was a little upset at first but I see why she did it. Now she lets us go home on them after all the doses are correct. I am starting to think doing home IV's are going to come to a end for a while and that is because it seems like once she is done with them she is sick again a few weeks later. When she is in club med she is basically on the same schedule that she is on at home and that's because her doctor doesn't like her patients woken up at night for vitals they come in and give her IV meds and they are done. I like home IV's because then I am able to be with both my kids. We live 1.5 hrs away from clinic.
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RunSickboyRun 96p · 780 weeks ago

It's always nice to try other options just to see if they work for you. It is tough though with a family and my options may change when I have one of my own.
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Madeline · 780 weeks ago

Thanks for this post. I definitely agree with you about not waiting until you are really sick - that's when you can really damage your lungs. I do home I.V.s because like Josh, I don't want to catch a really tough hospital bug. I also find I get much better rest - during your 3:44 video, the bell at the nurses' station rang twice. That kind of noise drives me nuts. I also find that my drugs are dosed on time when I'm at home. At the hospital, there are sometimes delays. All said however, I think what really makes home I.V.s possible is that I am married to a wonderful man who takes care of everything else when I'm sick. Before marriage, I went to the hospital, because drugs, treatments, feeding myself, laundry, and cleaning were too much to handle alone. With Dave, I can concentrate on the drugs and treatments, and getting a lot of rest.
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RunSickboyRun 96p · 780 weeks ago

What's funny is that "ding" was actually my email :) I do hear the nurses bells though from time to time!!
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Tamara · 780 weeks ago

I'ts indeed better if you don't wait to long for an IV, because it can really damage your lungs. But sometimes you're just suddenly getting sick, en there is nothing you can do about. I've had that a few times.

I'd rather do my IV's at home (I live in the Netherlands) because of these reasons:

1. I get more sleep (They wake you up at 7:30 in the morning after two IV switches, which also made you wake up at 6:00, 6:30 and 7:00. )
2. My own bed is much better than the hospital bed.
3. You can catch way more germs in the hospital than you do at home.
4. I don't trust the nurses enough with the IV's, if they flush enough between two diff kinds of meds, they really late sometimes with the meds, and you have to wait for them to come answer your alarm for a really really long time! (I say, half an hour?)) I can do that better at home.
5. We have a segregation policy at the hospital for CF-ers. That means: You must stay in your room all the time, except for a physio appointment.
6. I always get weaker in the hospital (on one hand because of segregation) and I'm just not that active in the hospital. If I stay there for 3 weeks, It's really hard for me to adjust at the home living situation. If I can do home IV's, I keep my strenght.

Pff So I think that was it. If you don't understand it, say so because I'm not really good at English:P

So no fun at all, staying in the hospital!
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Patti's avatar

Patti · 780 weeks ago

I totally agree with Tamara! Those are pretty much all the reasons I didn't like staying in the hospital either. I had a lot of responsibilities at home that probably were the cause of me taking a little longer to feel better, but I always like my food, my bed, my shower, and whatever way better than the hospital!! The last year before my transplant, I had Brady to take care of (he was 1 year and 3 weeks when I had my transplant), but I had a lot of help so I didn't get so worn out.

Not to sound morbid, but to make a point about my preferance...I was really not well when I was listed for transplant and kind of like a person on their death bed, I just felt more comfortable at home and didn't want to be hooked to a bunch of lines if I didn't have to be. There were no nurses or RT's to bother me in the middle of the night at home, and I was always around the people I loved.

Everyone is different...if a person wants to be admitted to get better, then that's their preference and I'm happy that it works for you (and others). Feel better soon!!!
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Tamara's avatar - Go to profile

Tamara · 780 weeks ago

Ooh! I totally forgot the horrible food!!! ;)
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Micahel Gulinello's avatar

Micahel Gulinello · 779 weeks ago

Hey Ronnie hope your clean out is going well. I just watched why you don't use home IVs and I'm on board with you all the way. I have recently tried and the methods are still out of whack, I had a drip IV. Can you believe that, its was 60s style. Very ridiculous. I also feel that its not an obligation for my wife to make sure I get my meds and I also feel that having antibiotics every six hours doesn't help any way, when my wife has school and work. Do whats best for your self and make sure you stay there don't let the newbies force home clean outs, I know you wouldn't any ways. Very well done on the video blog.

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