JennifersHope
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- Thread starter JennifersHope
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JennifersHope
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Oops sorry my fingers hit send by mistake... Long day.
I have a question, as most of you know I was dx at 29 so alot of this is new for me. Usually my hospital stays have been because I am totally sick and unable to breath good at all, even then I have gone to the hospital kicking and fighting. (little bull headed I know) I am finishing my last year of school and I was told I can only miss two clinical days of school this semester because of the content being covered. Well as many of you know.. tune ups take longer then that..I have always been in for at least a week or so.. usually 10 -14 days. That is not going to work this semester. I will fail school.
So here is my question, right now. I can't tell but I think I am getting close to a full blown exacerbation. Some days I feel better then others..My last cultures sucked. I am on antibiotic wise: Tobi, Cipro, Bactrim, and Avelox. All orals. The only IV antibiotic my culture is sensitive to is Vanco.
I go to clinic on Wed. they are going to check my pfts and evaluate me but ultimately it will be my choice if I go on IVS. This would require me a few day hospital stay at least, PICC line in, and then I will have to learn to do at home IVS. In my past, I would never ever in a million years agree to go in the hospital unless I was half dead but do you think I should agree to go in to prevent a full blown exacerbation? Is that what you guys do, are your tune ups before you are full blown sick or are they after you are? I am more SOB and so tired.
I am really trying to do my best to take the best possible care of myself but am not sure since some of this is still new to me.
Thanks again for any help,
Jennifer 32 w CF and Addison's
I have a question, as most of you know I was dx at 29 so alot of this is new for me. Usually my hospital stays have been because I am totally sick and unable to breath good at all, even then I have gone to the hospital kicking and fighting. (little bull headed I know) I am finishing my last year of school and I was told I can only miss two clinical days of school this semester because of the content being covered. Well as many of you know.. tune ups take longer then that..I have always been in for at least a week or so.. usually 10 -14 days. That is not going to work this semester. I will fail school.
So here is my question, right now. I can't tell but I think I am getting close to a full blown exacerbation. Some days I feel better then others..My last cultures sucked. I am on antibiotic wise: Tobi, Cipro, Bactrim, and Avelox. All orals. The only IV antibiotic my culture is sensitive to is Vanco.
I go to clinic on Wed. they are going to check my pfts and evaluate me but ultimately it will be my choice if I go on IVS. This would require me a few day hospital stay at least, PICC line in, and then I will have to learn to do at home IVS. In my past, I would never ever in a million years agree to go in the hospital unless I was half dead but do you think I should agree to go in to prevent a full blown exacerbation? Is that what you guys do, are your tune ups before you are full blown sick or are they after you are? I am more SOB and so tired.
I am really trying to do my best to take the best possible care of myself but am not sure since some of this is still new to me.
Thanks again for any help,
Jennifer 32 w CF and Addison's
L
luke
Guest
I always do IV's and work at the same time. I have been doing it for years. The problem will be getting in all of your doses while you do your clinicals. I used to just take an hour lunch and infuse at work. I will encourage you not to wait until your PFT's drop to far or you won't be able to get them back up. If you are feeling sick go ahead and get your IV's started. good luck
Luke
Luke
Ask about using Intermates or some other portable IV delivery system. They are RIDICULOUSLY easy to use. My eight year old does his IVs at school using these, so if you have the energy, maybe you don't have to miss too much school/work. Better to nip it in the bud, I think, especially if you are headed downhill anyway. Good luck!
I have worked and done home IV's. I just do them at like 6 a.m. and 6 p.m. or whatever works for you.
Any blood work that needs to be drawn, I just have a home health aide come to the house & draw or go to a lab over lunch hour or something along those lines.
It can be done. At first the responsibility of home IV's is a little scary but pretty soon you get the hang of it. And I've always had a home health care company available by phone if I had questions while trying to hook up IV's.
Any blood work that needs to be drawn, I just have a home health aide come to the house & draw or go to a lab over lunch hour or something along those lines.
It can be done. At first the responsibility of home IV's is a little scary but pretty soon you get the hang of it. And I've always had a home health care company available by phone if I had questions while trying to hook up IV's.
As for the working thing, I'm on disability so I can't help you there. If you're thinking about going to school with a picc line in, all I can say is that you should make sure to stay away from crowded hallways and protect it as best you can. Don't want to snag on something and rip the thing out...ouch. I would have done that in high school, but my hallways were way too overpopulated. Didn't want to risk it.
As for waiting, don't. It will be much harder and take a whole lot longer to bounce back if you wait until you're at critical. Get in, get it done, and then you don't have to worry about it. Plus, you won't feel like crap that much longer.
As for waiting, don't. It will be much harder and take a whole lot longer to bounce back if you wait until you're at critical. Get in, get it done, and then you don't have to worry about it. Plus, you won't feel like crap that much longer.
I havent worked while having a round of IV, but I have done many other things. I have planned & participated in my daughters roller skating birthday party. My doctor wasnt too happy about that one because of the PICC line being in. I have cooked for & entertained up to 30 people most of who are kids. Granted these were one day activities, but the preperation was extensive. It wasnt easy, but worth it so I made what I had to do around my med routine. Some adjustments had to be made for that particular day, but overall it was just a matter of planning.
I have done EVERYTHING that I want to do w/ PICC in, including going to school, concerts, camping, traveling, skiing...what ever, so fear not! They are easy to care for and as long you aren't mud wresteling or anything. Here are a few tips that make it easier:
Ask if your homecare service provider has self-infusion pumps. I know Apria carries them. They look like little grenades or water balloons and have a single dose of antibiotic in them. You hook it up to your PICC stick it in your pocket and head off to class.
Also, make sure that your homecare sends extensions to attach to the loomin of your PICC you you can use both handswhen hooking up.
I put one of those showerheads that you can detach and use like a hose in my shower, it makes it easier for me to wash up without having to wrap my arm in saran-wrap.
The best way to avoid hospital time is to do PT several times a day. It sucks and takes up alot of time but antibiotics won't do any good if you don't move the excess dead gunk out of there.
Ask if your homecare service provider has self-infusion pumps. I know Apria carries them. They look like little grenades or water balloons and have a single dose of antibiotic in them. You hook it up to your PICC stick it in your pocket and head off to class.
Also, make sure that your homecare sends extensions to attach to the loomin of your PICC you you can use both handswhen hooking up.
I put one of those showerheads that you can detach and use like a hose in my shower, it makes it easier for me to wash up without having to wrap my arm in saran-wrap.
The best way to avoid hospital time is to do PT several times a day. It sucks and takes up alot of time but antibiotics won't do any good if you don't move the excess dead gunk out of there.
I just got off of 3 weeks of IVs. Nafcillan 6 times a day..woohoo. Anyway, got a self infusion pump (through Apria) and only had to change the bag out once a day. It was VERY easy. Worked, drove, when grocery shopping, made dinner, etc. I had only three problems with it:
1) while doing the hour long infusion, I felt like i was freezing to death
2) Each day when changing the bag, then the carrier was a little heavy and awkward.
3) I think becasue I was continually connected (i got smaller infusions between the major ones), the line "plugged" up because I only injected the line with heparin once a day. But I was always able to clear it.
This was my second picc this year. The first one I had I only had to do iv's once a day, so I just did it nightly at home.
BTW, for showers, I have found that if you slice open the bottom of a baggy (not a ziploc), you can just slide that right up your arm, tape both ends around your arm and you're ready to shower. Takes like 2 minutes (on a bad day).
Amy
36 w/ CF
1) while doing the hour long infusion, I felt like i was freezing to death
2) Each day when changing the bag, then the carrier was a little heavy and awkward.
3) I think becasue I was continually connected (i got smaller infusions between the major ones), the line "plugged" up because I only injected the line with heparin once a day. But I was always able to clear it.
This was my second picc this year. The first one I had I only had to do iv's once a day, so I just did it nightly at home.
BTW, for showers, I have found that if you slice open the bottom of a baggy (not a ziploc), you can just slide that right up your arm, tape both ends around your arm and you're ready to shower. Takes like 2 minutes (on a bad day).
Amy
36 w/ CF
(((Jenn))), I know what you mean...it sucks to have to go into the hospital...I am fairly new to this CF stuff too (diagnosed not too long ago at 33 years old) and have been on several rounds of IV's for my cepacia..most of them in the hospital. I have had two PICC lines, but because I have immunological issues, I tend to culture some bug (usually staph) despite the best of care. I now have a medi port and it has been a life saver for me right now...as it stands, I am still in the hosptial, don't expect to get out until the 10th or the 11th, the docs also are going to bronch me and try to suck the snot out of me (eewww, I know gross) sometime next week. I have been in since the 30th of August....had some complications with my kidneys, they had a hard time with the Zosyn and I developed interstitial nephritis from that drug. Now I am on meropenem...hopefully it does the trick. What makes it hard is that I live on a vent as well...talk about double whammy. I agree that chest PT does wonders for clearing crap out of your lungs...you wouldn't believe what I suction up after a session with CPT. Enough about me...
Regarding your hospitalization....don't wait until you feel really crappy to go in, it's best to nip it before it gets too serious, then it gets harder to treat. I learned the hard way not to do that, being on a vent makes me hyper aware of my body and its signals. I have been on home IV's prior to getting Medicare in June via Apria and their pumps, the CAD Prism is what I used, I was on Zosyn every 6 hours and it automatically cycled, I changed the bag once a day and flushed my ports prior to hooking up the next bag...I loved it, and it was easy to use, I think a monkey could use it LOL! If I could do IV meds at home, I would....Medicare bites as far as that one goes, but my social worker is trying to get Medicaid for me as well..I have really high medical expenses so it shouldn't be too hard to get.
Good luck with your visit and let us know how it turns out for you....
As always, you are in my thoughts
Hugs Cepaciagal (the other Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Regarding your hospitalization....don't wait until you feel really crappy to go in, it's best to nip it before it gets too serious, then it gets harder to treat. I learned the hard way not to do that, being on a vent makes me hyper aware of my body and its signals. I have been on home IV's prior to getting Medicare in June via Apria and their pumps, the CAD Prism is what I used, I was on Zosyn every 6 hours and it automatically cycled, I changed the bag once a day and flushed my ports prior to hooking up the next bag...I loved it, and it was easy to use, I think a monkey could use it LOL! If I could do IV meds at home, I would....Medicare bites as far as that one goes, but my social worker is trying to get Medicaid for me as well..I have really high medical expenses so it shouldn't be too hard to get.
Good luck with your visit and let us know how it turns out for you....
As always, you are in my thoughts
Hugs Cepaciagal (the other Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks for your replies guys. I just got home from a wedding.. I helped plan it and I was in it so I really was quite busy all day. I can tell for sure that I need IV antibiotics now. It was so embarrasing for me tonight. Everyone was dancing and of course I was there watching and taking pictures. I always take pictures at these type of events because it gives me an exuse not to dance. Well anyway, tonight I kept getting pulled on to the dance floor to dance.. Oh my gosh.. I can't dance and breath at the same time....
I kept trying to say no, I even started to say I was having difficulty breathing but ppl had drinks in them. so they were literally dragging me. So anyway once on the dance floor, I tried to dance... Of course I ended up coughing so hard I threw up in the bathroom. Thankfully no one saw me.
By the end of the night, people saw how much I was having a hard time catching my breath and I was coughing, being that this was a work wedding and I was in a room full of nurses and doctors. I kept getting people pounding on my back.. or telling me to go home and do thumper ( thumper is what I call my vest). Then everywhere I went people were asking me if I was okay. even though I stopped coughing. But it was like people were talking about me.. saying"that is the girl with CF" I mean I would never introduce someone like "this is the girl with cancer, or diabetes" They didn't mean to be rude and they really do just care. I had so many people pulling me aside and questioning me. I really wasn't coughing after I stopped dancing for a while but still.
I can't tell you how upsetting it is for me. I did have a good time at the wedding. It just upset me...I felt like a freak. I left the wedding early so I could come home and do my stuff. The entire wedding party went to a post wedding party and I couldn't go.. I am just so tired and out of it. I don't want to complain I just want to do things normal people can. I wonder when I will accept the fact that I am not normal.
Anyway, I think I have to go in the hospital for a few days to get vanco, I will see if I can avoid the hospital and just start it at home.. I have never been on it before and I can't imagine that they would give me that IV to do at home without checking to see if I have a reaction. I will take all your advise and see if I can get the infuser. School is so much harder this semester for me. I feel so much pressure and I am about to start a new section in school that is the toughest one at of them all.. I just feel wiped out and like if I slept for a month it wouldn't be enough.
Thanks again for all your advise, I can't tell you how comforting it is to me to come home and see so many replies.
Jennifer
32 (almost 33)w/CF and Addison's
I kept trying to say no, I even started to say I was having difficulty breathing but ppl had drinks in them. so they were literally dragging me. So anyway once on the dance floor, I tried to dance... Of course I ended up coughing so hard I threw up in the bathroom. Thankfully no one saw me.
By the end of the night, people saw how much I was having a hard time catching my breath and I was coughing, being that this was a work wedding and I was in a room full of nurses and doctors. I kept getting people pounding on my back.. or telling me to go home and do thumper ( thumper is what I call my vest). Then everywhere I went people were asking me if I was okay. even though I stopped coughing. But it was like people were talking about me.. saying"that is the girl with CF" I mean I would never introduce someone like "this is the girl with cancer, or diabetes" They didn't mean to be rude and they really do just care. I had so many people pulling me aside and questioning me. I really wasn't coughing after I stopped dancing for a while but still.
I can't tell you how upsetting it is for me. I did have a good time at the wedding. It just upset me...I felt like a freak. I left the wedding early so I could come home and do my stuff. The entire wedding party went to a post wedding party and I couldn't go.. I am just so tired and out of it. I don't want to complain I just want to do things normal people can. I wonder when I will accept the fact that I am not normal.
Anyway, I think I have to go in the hospital for a few days to get vanco, I will see if I can avoid the hospital and just start it at home.. I have never been on it before and I can't imagine that they would give me that IV to do at home without checking to see if I have a reaction. I will take all your advise and see if I can get the infuser. School is so much harder this semester for me. I feel so much pressure and I am about to start a new section in school that is the toughest one at of them all.. I just feel wiped out and like if I slept for a month it wouldn't be enough.
Thanks again for all your advise, I can't tell you how comforting it is to me to come home and see so many replies.
Jennifer
32 (almost 33)w/CF and Addison's
Jennifer - sorry you felt like a freak at the wedding, but I hope you don't let that overshadow the great memories you will have of being able to be part of the day.
I just wanted to tell you that while I was on my latest picc for 3 weeks, and on Nafcillin, which I have never had, they still were able to have me do everything at home with the exception of them actually putting in the picc line. The home nurse stayed the entire time of the first dosage and then for a little bit after to make sure I wasn't going to have a reaction.
I too am new to this, just being dx'd this year, so I understand your apprehension, but if you can manage it, I would totally recommend doing the iv's at home rather than the hospital. They really do make it easy, and if you have any problems, help is only a phone call away!
Good luck and I hope you feel better soon.
Amy
36 w/CF
I just wanted to tell you that while I was on my latest picc for 3 weeks, and on Nafcillin, which I have never had, they still were able to have me do everything at home with the exception of them actually putting in the picc line. The home nurse stayed the entire time of the first dosage and then for a little bit after to make sure I wasn't going to have a reaction.
I too am new to this, just being dx'd this year, so I understand your apprehension, but if you can manage it, I would totally recommend doing the iv's at home rather than the hospital. They really do make it easy, and if you have any problems, help is only a phone call away!
Good luck and I hope you feel better soon.
Amy
36 w/CF
To Jennifer.....
I am Matron of Honor in a wedding of my best friend from high school on 10/15. I am scared to death that I wont make it thru the day. Both her & I have paced myself carefully, but the day itself is going to be rough. Earlier this year I was suppose to be in another wedding of a high school friend & I ended up in the hospital. It was a very hard time for me. I waited a long time for both of these friends to get married so its important. I am trying to keep in mind that I cant do it all, but I will be there & I will have fun just not the way I use to. Fortunately for me everyone there is aware of my illness & if I have a problem they will not make a "fuss" that would make me uncomfortable. Chances are someone (most likely my Mom or husband) will take my outside or in another room. The only time I am worried about is in the church. When I get nervous I start coughing. It doesnt matter how much treatment I give myself & to top it off I agreed to read a poem at the ceremony in from of 120 people. What was I thinking!!!! I was thinking that my best friend is getting married & whether I come across perfect or not, I will be there. I am sorry that your experience was less then what you hoped for, but just like me....at least you were there. Now you need to concentrate on getting better!
I am Matron of Honor in a wedding of my best friend from high school on 10/15. I am scared to death that I wont make it thru the day. Both her & I have paced myself carefully, but the day itself is going to be rough. Earlier this year I was suppose to be in another wedding of a high school friend & I ended up in the hospital. It was a very hard time for me. I waited a long time for both of these friends to get married so its important. I am trying to keep in mind that I cant do it all, but I will be there & I will have fun just not the way I use to. Fortunately for me everyone there is aware of my illness & if I have a problem they will not make a "fuss" that would make me uncomfortable. Chances are someone (most likely my Mom or husband) will take my outside or in another room. The only time I am worried about is in the church. When I get nervous I start coughing. It doesnt matter how much treatment I give myself & to top it off I agreed to read a poem at the ceremony in from of 120 people. What was I thinking!!!! I was thinking that my best friend is getting married & whether I come across perfect or not, I will be there. I am sorry that your experience was less then what you hoped for, but just like me....at least you were there. Now you need to concentrate on getting better!