hospital stay vs. home iv's

[TleighsHusband]

We definitely preferred doing them at home. The only time when we did them in the hospital is if Tiffany was very sick and there was usually another contributing factor to her sickness like MRSA in her blood or a major drop in her ox stats. It probably depends some on the support that you can get both at home and in the hospital. We had a basic rule that Tiffany would never be in the hospital alone because after a couple of days on IVs you feel like junk and don't follow all what the many docs and different people are saying not to mention how many mistakes we catch in treatment whether by nurses, docs, RTs. We were very proactive and had no problem to ask questions, refuse treatment, demand treatment, and ask questions and more questions. Doing them at home would allow Tiffany to sleep more and maintain some level of her schedule if her health permitted. We finally went to a port when we were doing IVs more than once a year -- very thankful we made that decision. We could be at the clinic in the afternoon and on IVs at home that same night. We were very independent and they would drop off the drugs and we would do everything else. Our viewpoint was that the fewer healthcare professionals that were in contact with Tiffany the better as they are constantly around other bugs and then again -- we were just independent people.

 

[TleighsHusband]

We definitely preferred doing them at home. The only time when we did them in the hospital is if Tiffany was very sick and there was usually another contributing factor to her sickness like MRSA in her blood or a major drop in her ox stats. It probably depends some on the support that you can get both at home and in the hospital. We had a basic rule that Tiffany would never be in the hospital alone because after a couple of days on IVs you feel like junk and don't follow all what the many docs and different people are saying not to mention how many mistakes we catch in treatment whether by nurses, docs, RTs. We were very proactive and had no problem to ask questions, refuse treatment, demand treatment, and ask questions and more questions. Doing them at home would allow Tiffany to sleep more and maintain some level of her schedule if her health permitted. We finally went to a port when we were doing IVs more than once a year -- very thankful we made that decision. We could be at the clinic in the afternoon and on IVs at home that same night. We were very independent and they would drop off the drugs and we would do everything else. Our viewpoint was that the fewer healthcare professionals that were in contact with Tiffany the better as they are constantly around other bugs and then again -- we were just independent people.

 

[TleighsHusband]

We definitely preferred doing them at home. The only time when we did them in the hospital is if Tiffany was very sick and there was usually another contributing factor to her sickness like MRSA in her blood or a major drop in her ox stats. It probably depends some on the support that you can get both at home and in the hospital. We had a basic rule that Tiffany would never be in the hospital alone because after a couple of days on IVs you feel like junk and don't follow all what the many docs and different people are saying not to mention how many mistakes we catch in treatment whether by nurses, docs, RTs. We were very proactive and had no problem to ask questions, refuse treatment, demand treatment, and ask questions and more questions. Doing them at home would allow Tiffany to sleep more and maintain some level of her schedule if her health permitted. We finally went to a port when we were doing IVs more than once a year -- very thankful we made that decision. We could be at the clinic in the afternoon and on IVs at home that same night. We were very independent and they would drop off the drugs and we would do everything else. Our viewpoint was that the fewer healthcare professionals that were in contact with Tiffany the better as they are constantly around other bugs and then again -- we were just independent people.

 

[Iamqueenofeverything]

I love to do my ivs at home. when i am sick, i am not that bad.

I have my own bed! i sleep like 20 hours a day for most of the time i am on the iv meds. Cant get that at the hospital.

i have everything i need at home and dont have to bother with packing or making sure i have everything i need.

I can move around the house as oppose to staying in one room.

at home i like the privacy.

one thing i do like about the hospital is that i dont have to worry about cooking or cleaning.

 

[Iamqueenofeverything]

I love to do my ivs at home. when i am sick, i am not that bad.

I have my own bed! i sleep like 20 hours a day for most of the time i am on the iv meds. Cant get that at the hospital.

i have everything i need at home and dont have to bother with packing or making sure i have everything i need.

I can move around the house as oppose to staying in one room.

at home i like the privacy.

one thing i do like about the hospital is that i dont have to worry about cooking or cleaning.

 

[Iamqueenofeverything]

I love to do my ivs at home. when i am sick, i am not that bad.
<br />
<br />I have my own bed! i sleep like 20 hours a day for most of the time i am on the iv meds. Cant get that at the hospital.
<br />
<br />i have everything i need at home and dont have to bother with packing or making sure i have everything i need.
<br />
<br />I can move around the house as oppose to staying in one room.
<br />
<br />at home i like the privacy.
<br />
<br />one thing i do like about the hospital is that i dont have to worry about cooking or cleaning.

 

[Deb]

I have done home IV therapy for the last 20 years. It is so much better. I continue to function and even work unless I am really sick. I also have a fantastic husband that will connect my 6:00 am dose without even waking me up.

Earlier this year I was admitted after a trip to the ER. I was expecting the staff to be accustomed to CF patients. Wrong!! Rarely got my pain meds or IV's on time. RT staff used the same neb cup for all my meds and asked me if I "felt like" doing my vest. (Yes they stayed in the room the whole time) They had no idea what I was talking about when I asked for a bottle to rinse my sinuses; they gave me a turkey baster. I will also take my own box of Kleenex the next time I go. They really expect us to blow our nose and spit sputum into those rough "half size" kleenex? Then there was being awakened at 3 am to "How is your pain now?" Plus I was so sick the first few days I could not be as alert as needed. My husband even stayed in my room the first night to be my advocate. So very necessary.

Although I probably don't get as much daytime rest when I am at home I certainly sleep better in my own bed, avoid hospital germs, and make sure everything from meds to nebs to vest is done properly and on time. I hope it is another 20 years before I spend another week in the hospital.

 

[Deb]

I have done home IV therapy for the last 20 years. It is so much better. I continue to function and even work unless I am really sick. I also have a fantastic husband that will connect my 6:00 am dose without even waking me up.

Earlier this year I was admitted after a trip to the ER. I was expecting the staff to be accustomed to CF patients. Wrong!! Rarely got my pain meds or IV's on time. RT staff used the same neb cup for all my meds and asked me if I "felt like" doing my vest. (Yes they stayed in the room the whole time) They had no idea what I was talking about when I asked for a bottle to rinse my sinuses; they gave me a turkey baster. I will also take my own box of Kleenex the next time I go. They really expect us to blow our nose and spit sputum into those rough "half size" kleenex? Then there was being awakened at 3 am to "How is your pain now?" Plus I was so sick the first few days I could not be as alert as needed. My husband even stayed in my room the first night to be my advocate. So very necessary.

Although I probably don't get as much daytime rest when I am at home I certainly sleep better in my own bed, avoid hospital germs, and make sure everything from meds to nebs to vest is done properly and on time. I hope it is another 20 years before I spend another week in the hospital.

 

[Deb]

I have done home IV therapy for the last 20 years. It is so much better. I continue to function and even work unless I am really sick. I also have a fantastic husband that will connect my 6:00 am dose without even waking me up.
<br />
<br />Earlier this year I was admitted after a trip to the ER. I was expecting the staff to be accustomed to CF patients. Wrong!! Rarely got my pain meds or IV's on time. RT staff used the same neb cup for all my meds and asked me if I "felt like" doing my vest. (Yes they stayed in the room the whole time) They had no idea what I was talking about when I asked for a bottle to rinse my sinuses; they gave me a turkey baster. I will also take my own box of Kleenex the next time I go. They really expect us to blow our nose and spit sputum into those rough "half size" kleenex? Then there was being awakened at 3 am to "How is your pain now?" Plus I was so sick the first few days I could not be as alert as needed. My husband even stayed in my room the first night to be my advocate. So very necessary.
<br />
<br />Although I probably don't get as much daytime rest when I am at home I certainly sleep better in my own bed, avoid hospital germs, and make sure everything from meds to nebs to vest is done properly and on time. I hope it is another 20 years before I spend another week in the hospital.

 

[JRB52]

I just had my first hospital stay for IV antibiotics. I actually was admitted through the ER because I was having extreme trouble breathing and my oxygen level was low, but my doctor had spoken with me about checking into the hospital for a round of IV antibiotics anyway, so that ER visit forced me to do it.
I received good care in the hospital and had a great team along with my attending physician, but I did have a few issues with the experience. I was in one of the top hospitals in the country and yet I was amazed with the lack of attention to things like disinfecting nebulizer cups--that wasn't going to happen--and they were expecting me to use the same two cups for my entire visit? I had them leave the nebulizers with me and I sterilized them as best I could with alcohol pads and sterile water, but the fact is they need to be giving out new cups for each treatment. The CF doctors and centers try so hard to instill in patients the importance of disinfecting equipment and then you get to the hospital, which is full of all kinds of germs, and they expect you to re-use nebulizers that are barely run under tap water???
The hospital stay is also not conducive to diabetic treatments. I had to have numerous discussions about who should be in charge of my testing and insulin--ME. I realize there may be an insurance issue with the hospital and a patient administering their own meds, but the best nurses I had realized that people with chronic conditions like CF and diabetes usually have established a schedule and regime that works for them. On the other hand, we need to work together with them and let them know our readings and insulin intake for their records.
I'm surprised that some people find it more restful to be in the hospital for IVs as I was able to get almost no sleep there; they were waking me up at all hours for treatments, blood draw, etc. I ended up leaving the hospital with a PICC Line after eight days and doing the last 10 days of IVs at home. I was amazed at how easy it was to do the IVs especially with the Eclipse Balls--just hook one up, put it in your pocket and go about your business. The antibiotics didn't really make me tired during the day, but it definitely helped that I was getting more sleep at home than I had gotten in the hospital. I was able to go about my normal life when I wasn't administering a treatment so at home seems the best way for me.
I would be nervous about starting new IV antibiotics that I'd never taken at home though, but wouldn't want to spend more than a couple days in the hospital again unless I was having other issues.

 

[JRB52]

I just had my first hospital stay for IV antibiotics. I actually was admitted through the ER because I was having extreme trouble breathing and my oxygen level was low, but my doctor had spoken with me about checking into the hospital for a round of IV antibiotics anyway, so that ER visit forced me to do it.
I received good care in the hospital and had a great team along with my attending physician, but I did have a few issues with the experience. I was in one of the top hospitals in the country and yet I was amazed with the lack of attention to things like disinfecting nebulizer cups--that wasn't going to happen--and they were expecting me to use the same two cups for my entire visit? I had them leave the nebulizers with me and I sterilized them as best I could with alcohol pads and sterile water, but the fact is they need to be giving out new cups for each treatment. The CF doctors and centers try so hard to instill in patients the importance of disinfecting equipment and then you get to the hospital, which is full of all kinds of germs, and they expect you to re-use nebulizers that are barely run under tap water???
The hospital stay is also not conducive to diabetic treatments. I had to have numerous discussions about who should be in charge of my testing and insulin--ME. I realize there may be an insurance issue with the hospital and a patient administering their own meds, but the best nurses I had realized that people with chronic conditions like CF and diabetes usually have established a schedule and regime that works for them. On the other hand, we need to work together with them and let them know our readings and insulin intake for their records.
I'm surprised that some people find it more restful to be in the hospital for IVs as I was able to get almost no sleep there; they were waking me up at all hours for treatments, blood draw, etc. I ended up leaving the hospital with a PICC Line after eight days and doing the last 10 days of IVs at home. I was amazed at how easy it was to do the IVs especially with the Eclipse Balls--just hook one up, put it in your pocket and go about your business. The antibiotics didn't really make me tired during the day, but it definitely helped that I was getting more sleep at home than I had gotten in the hospital. I was able to go about my normal life when I wasn't administering a treatment so at home seems the best way for me.
I would be nervous about starting new IV antibiotics that I'd never taken at home though, but wouldn't want to spend more than a couple days in the hospital again unless I was having other issues.

 

[JRB52]

I just had my first hospital stay for IV antibiotics. I actually was admitted through the ER because I was having extreme trouble breathing and my oxygen level was low, but my doctor had spoken with me about checking into the hospital for a round of IV antibiotics anyway, so that ER visit forced me to do it.
<br />I received good care in the hospital and had a great team along with my attending physician, but I did have a few issues with the experience. I was in one of the top hospitals in the country and yet I was amazed with the lack of attention to things like disinfecting nebulizer cups--that wasn't going to happen--and they were expecting me to use the same two cups for my entire visit? I had them leave the nebulizers with me and I sterilized them as best I could with alcohol pads and sterile water, but the fact is they need to be giving out new cups for each treatment. The CF doctors and centers try so hard to instill in patients the importance of disinfecting equipment and then you get to the hospital, which is full of all kinds of germs, and they expect you to re-use nebulizers that are barely run under tap water???
<br />The hospital stay is also not conducive to diabetic treatments. I had to have numerous discussions about who should be in charge of my testing and insulin--ME. I realize there may be an insurance issue with the hospital and a patient administering their own meds, but the best nurses I had realized that people with chronic conditions like CF and diabetes usually have established a schedule and regime that works for them. On the other hand, we need to work together with them and let them know our readings and insulin intake for their records.
<br />I'm surprised that some people find it more restful to be in the hospital for IVs as I was able to get almost no sleep there; they were waking me up at all hours for treatments, blood draw, etc. I ended up leaving the hospital with a PICC Line after eight days and doing the last 10 days of IVs at home. I was amazed at how easy it was to do the IVs especially with the Eclipse Balls--just hook one up, put it in your pocket and go about your business. The antibiotics didn't really make me tired during the day, but it definitely helped that I was getting more sleep at home than I had gotten in the hospital. I was able to go about my normal life when I wasn't administering a treatment so at home seems the best way for me.
<br />I would be nervous about starting new IV antibiotics that I'd never taken at home though, but wouldn't want to spend more than a couple days in the hospital again unless I was having other issues.

 

[kharm]

Glad to know I'm not the only one who is allergic to the meds I have to take! I have a cefepime allergy, so I spend 1-2 days in the ICU while I get desensitized. I've done it so many times I've lost count, but my last stay felt like pure torture between getting stuck several times for IVs (prior to getting the PICC), multiple chest x-rays at all hours, being beaten to a pulp during chest PT (I know it's better for you, but I love my vest). Not to mention most people in ICU are not using the bathroom on their own, so the rooms are set up accordingly. I'm lucky if I get a pullout toilet in the room! I also seem to have a full blown anaphylactic reaction during PICC insertion - the last time was the third time it happened and we ruled out a lidocaine allergy - I believe I have "mast cell activation syndrome", so that just adds to the torture! I feel like with everyone coming in and out, you can never get any sleep. Then there's the risk of further infection from being around other sick people. I always tell my mother (a nurse) that the hospital is the worst place to be if you're sick and trying to get better! I won't say that managing the IV meds (3 different meds - 1 every 8 hours and 2 every 12 hours) in addition to all the stuff I take to combat the side effects of the IV meds, plus all the other regular stuff (nebulizer treatments and vest) is easy, but to me it's worth it to feel normal and be comfortable at home. I used to overdo it at home (when I was working, I'd continue teaching 3rd grade at a school - an hour commute each way - and would infuse at work), but it got to be too much, and eventually, I had to go on disability. If you stay home during your IV treatment and take it easy, I believe you can get just as good of a cleanout at home. Having a spouse who helps you with the treatments certainly makes life easier, too! I'm really lucky there.

 

[kharm]

Glad to know I'm not the only one who is allergic to the meds I have to take! I have a cefepime allergy, so I spend 1-2 days in the ICU while I get desensitized. I've done it so many times I've lost count, but my last stay felt like pure torture between getting stuck several times for IVs (prior to getting the PICC), multiple chest x-rays at all hours, being beaten to a pulp during chest PT (I know it's better for you, but I love my vest). Not to mention most people in ICU are not using the bathroom on their own, so the rooms are set up accordingly. I'm lucky if I get a pullout toilet in the room! I also seem to have a full blown anaphylactic reaction during PICC insertion - the last time was the third time it happened and we ruled out a lidocaine allergy - I believe I have "mast cell activation syndrome", so that just adds to the torture! I feel like with everyone coming in and out, you can never get any sleep. Then there's the risk of further infection from being around other sick people. I always tell my mother (a nurse) that the hospital is the worst place to be if you're sick and trying to get better! I won't say that managing the IV meds (3 different meds - 1 every 8 hours and 2 every 12 hours) in addition to all the stuff I take to combat the side effects of the IV meds, plus all the other regular stuff (nebulizer treatments and vest) is easy, but to me it's worth it to feel normal and be comfortable at home. I used to overdo it at home (when I was working, I'd continue teaching 3rd grade at a school - an hour commute each way - and would infuse at work), but it got to be too much, and eventually, I had to go on disability. If you stay home during your IV treatment and take it easy, I believe you can get just as good of a cleanout at home. Having a spouse who helps you with the treatments certainly makes life easier, too! I'm really lucky there.

 

[kharm]

Glad to know I'm not the only one who is allergic to the meds I have to take! I have a cefepime allergy, so I spend 1-2 days in the ICU while I get desensitized. I've done it so many times I've lost count, but my last stay felt like pure torture between getting stuck several times for IVs (prior to getting the PICC), multiple chest x-rays at all hours, being beaten to a pulp during chest PT (I know it's better for you, but I love my vest). Not to mention most people in ICU are not using the bathroom on their own, so the rooms are set up accordingly. I'm lucky if I get a pullout toilet in the room! I also seem to have a full blown anaphylactic reaction during PICC insertion - the last time was the third time it happened and we ruled out a lidocaine allergy - I believe I have "mast cell activation syndrome", so that just adds to the torture! I feel like with everyone coming in and out, you can never get any sleep. Then there's the risk of further infection from being around other sick people. I always tell my mother (a nurse) that the hospital is the worst place to be if you're sick and trying to get better! I won't say that managing the IV meds (3 different meds - 1 every 8 hours and 2 every 12 hours) in addition to all the stuff I take to combat the side effects of the IV meds, plus all the other regular stuff (nebulizer treatments and vest) is easy, but to me it's worth it to feel normal and be comfortable at home. I used to overdo it at home (when I was working, I'd continue teaching 3rd grade at a school - an hour commute each way - and would infuse at work), but it got to be too much, and eventually, I had to go on disability. If you stay home during your IV treatment and take it easy, I believe you can get just as good of a cleanout at home. Having a spouse who helps you with the treatments certainly makes life easier, too! I'm really lucky there.

 

[nmw615]

Just adding a note to say that I must be a very special person; I usually get more sleep in the hospital than I do at home. I sleep through all my IVs at night, and the blood draws in the morning. Usually, someone has to end up waking me up, or I'd easily spend all day sleeping. haha

 

[nmw615]

Just adding a note to say that I must be a very special person; I usually get more sleep in the hospital than I do at home. I sleep through all my IVs at night, and the blood draws in the morning. Usually, someone has to end up waking me up, or I'd easily spend all day sleeping. haha

 

[nmw615]

Just adding a note to say that I must be a very special person; I usually get more sleep in the hospital than I do at home. I sleep through all my IVs at night, and the blood draws in the morning. Usually, someone has to end up waking me up, or I'd easily spend all day sleeping. haha

 

[giantsfan91]

@kharm, funny thing is my reaction turned out to be an adverse side effect that I can't be desensitized to so I just ended up needing to take tylenol and benadryl before every dose of zosyn. Zosyn gave me very high fevers (104F) but the tylenol and benadryl bring it down to normal as long as I stick with it. My cf doc said he'd never seen anyone who's side effect is only high fevers. Maybe I should start a new topic? lol

 

[giantsfan91]

@kharm, funny thing is my reaction turned out to be an adverse side effect that I can't be desensitized to so I just ended up needing to take tylenol and benadryl before every dose of zosyn. Zosyn gave me very high fevers (104F) but the tylenol and benadryl bring it down to normal as long as I stick with it. My cf doc said he'd never seen anyone who's side effect is only high fevers. Maybe I should start a new topic? lol