living life on ivs

TonyaH · Jul 21, 2011

Hi everyone,
 
We are nearing the middle of another 8 week treatment for mycobacterium abcessus. The past couple of weeks have been an eye opener for me. Andrew has been on ivs more and more frequently in the past couple of years. He was able to enjoy January through May free from his picc, but in May (after being myco. abcessus clear since December), we knew a June picc line was inevitible. Hopefully the line will be pulled on Aug. 23rd...two days before school starts. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
So, this all has me thinking about our lifestyle, and the direction this disease is headed. Trying to stay positive, and appreciative that Andrew still feels well, I know that this could be the round of abx that clears things up for a long time. However, trying to be practical, I think it is time we take one more step toward accepting another part of CF lifestyle and making it work for our family. 
 
Whenever Andrew is on ivs, life kind of revolves around it. We do not travel at all. But now that his piccs have landed us homebound for two summers in a row, I am wondering if that should change. What does everyone do? Do you go on vacation? Do you arrange for a nurse to do your blood draws, etc. wherever you are? Do you pack up all of your supplies in a big cooler and just lug it all around with you?
 
We are going stir crazy here! And in NC it is too hot to be outside if you are not in a pool, which is also not a possibility. So, not only are we not traveling, but we are very limited on activities. You can only see so many movies or have so many friends ove to spend the night. 
 
Thanks for any input.

TonyaH · Jul 21, 2011

Hi everyone,

We are nearing the middle of another 8 week treatment for mycobacterium abcessus. The past couple of weeks have been an eye opener for me. Andrew has been on ivs more and more frequently in the past couple of years. He was able to enjoy January through May free from his picc, but in May (after being myco. abcessus clear since December), we knew a June picc line was inevitible. Hopefully the line will be pulled on Aug. 23rd...two days before school starts. <img src="i/expressions/face-icon-small-sad.gif" border="0">

So, this all has me thinking about our lifestyle, and the direction this disease is headed. Trying to stay positive, and appreciative that Andrew still feels well, I know that this could be the round of abx that clears things up for a long time. However, trying to be practical, I think it is time we take one more step toward accepting another part of CF lifestyle and making it work for our family. 

Whenever Andrew is on ivs, life kind of revolves around it. We do not travel at all. But now that his piccs have landed us homebound for two summers in a row, I am wondering if that should change. What does everyone do? Do you go on vacation? Do you arrange for a nurse to do your blood draws, etc. wherever you are? Do you pack up all of your supplies in a big cooler and just lug it all around with you?

We are going stir crazy here! And in NC it is too hot to be outside if you are not in a pool, which is also not a possibility. So, not only are we not traveling, but we are very limited on activities. You can only see so many movies or have so many friends ove to spend the night. 

Thanks for any input.

TonyaH · Jul 21, 2011

Hi everyone,

We are nearing the middle of another 8 week treatment for mycobacterium abcessus. The past couple of weeks have been an eye opener for me. Andrew has been on ivs more and more frequently in the past couple of years. He was able to enjoy January through May free from his picc, but in May (after being myco. abcessus clear since December), we knew a June picc line was inevitible. Hopefully the line will be pulled on Aug. 23rd...two days before school starts. <img src="i/expressions/face-icon-small-sad.gif" border="0">

So, this all has me thinking about our lifestyle, and the direction this disease is headed. Trying to stay positive, and appreciative that Andrew still feels well, I know that this could be the round of abx that clears things up for a long time. However, trying to be practical, I think it is time we take one more step toward accepting another part of CF lifestyle and making it work for our family. 

Whenever Andrew is on ivs, life kind of revolves around it. We do not travel at all. But now that his piccs have landed us homebound for two summers in a row, I am wondering if that should change. What does everyone do? Do you go on vacation? Do you arrange for a nurse to do your blood draws, etc. wherever you are? Do you pack up all of your supplies in a big cooler and just lug it all around with you?

We are going stir crazy here! And in NC it is too hot to be outside if you are not in a pool, which is also not a possibility. So, not only are we not traveling, but we are very limited on activities. You can only see so many movies or have so many friends ove to spend the night. 

Thanks for any input.

Jane · Jul 21, 2011

Tonya, I hear your frustration and I share it. When my boys were on IVs for the mycobacterium for 6 months, we had the same issues. Yes, it complicates things and causes you to rearrange or rethink your vacation, but you have to try to keep things as normal as possible for your family so you don't all go crazy. 
 
At first we thought we couldn't manage our usual beach vacation, but we made it work. That year we had a great time and found ways to enjoy our time at the beach. In fact, when we were beachcombing, we discovered a rare dolphin that had beached itself. If we were swimming on the public beach, we would have missed the whole adventure. 
Here are a few tips we found helpful...
 We got a plastic picc cover so kids can swim. <A href="<A HREF="http://www.medcareproducts.com/castcovers/products.asp?dept=1106">http://www.medcareproducts.com/castcovers/products.asp?dept=1106</A>"><A HREF="http://www.medcareproducts.com/castcovers/products.asp?dept=1106">http://www.medcareproducts.com/castcovers/products.asp?dept=1106</A></A>
 
We used a plastic storage cart with drawers for all the supplies. You can just bring it in the car for trips. 
<A href="<A HREF="http://www.sterilite.com/SelectProduct.html?id=406&ProductCategory=187&section=1">http://www.sterilite.com/SelectProduct.html?id=406&ProductCategory=187&section=1</A>"><A HREF="http://www.sterilite.com/SelectProduct.html?id=406&ProductCategory=187&section=1">http://www.sterilite.com/SelectProduct.html?id=406&ProductCategory=187&section=1</A></A>
 
Our homecare company gave us a fanny-pack style IV pump. It runs a little slower, but they could take it anywhere. 
 
We had our nurse and our chest pt person meet us at our vacation house! 
 
If I think of other things, I'll let you know. Hang in there.

Jane · Jul 21, 2011

Tonya, I hear your frustration and I share it. When my boys were on IVs for the mycobacterium for 6 months, we had the same issues. Yes, it complicates things and causes you to rearrange or rethink your vacation, but you have to try to keep things as normal as possible for your family so you don't all go crazy.

At first we thought we couldn't manage our usual beach vacation, but we made it work. That year wehad a great time and found ways to enjoy our time at the beach. In fact, when we were beachcombing, we discovered arare dolphin that had beached itself.If we were swimming on the public beach, we would have missed the whole adventure.
Here are a few tips we found helpful...
We gota plastic picc cover so kids can swim. <A href="<A HREF="http://www.medcareproducts.com/castcovers/products.asp?dept=1106">http://www.medcareproducts.com/castcovers/products.asp?dept=1106</A>"><A HREF="http://www.medcareproducts.com/castcovers/products.asp?dept=1106">http://www.medcareproducts.com/castcovers/products.asp?dept=1106</A></A>

We used a plastic storage cart with drawers for all the supplies. You can justbring it in the car for trips. 
<A href="<A HREF="http://www.sterilite.com/SelectProduct.html?id=406&ProductCategory=187&section=1">http://www.sterilite.com/SelectProduct.html?id=406&ProductCategory=187&section=1</A>"><A HREF="http://www.sterilite.com/SelectProduct.html?id=406&ProductCategory=187&section=1">http://www.sterilite.com/SelectProduct.html?id=406&ProductCategory=187&section=1</A></A>

Our homecare companygave usa fanny-pack style IV pump. It runs a little slower, but they could take itanywhere. 

We had our nurse and our chest pt person meet us at our vacation house! 

If I think of other things, I'll let you know. Hang in there.

Jane · Jul 21, 2011

Tonya, I hear your frustration and I share it. When my boys were on IVs for the mycobacterium for 6 months, we had the same issues. Yes, it complicates things and causes you to rearrange or rethink your vacation, but you have to try to keep things as normal as possible for your family so you don't all go crazy.

At first we thought we couldn't manage our usual beach vacation, but we made it work. That year wehad a great time and found ways to enjoy our time at the beach. In fact, when we were beachcombing, we discovered arare dolphin that had beached itself.If we were swimming on the public beach, we would have missed the whole adventure.
Here are a few tips we found helpful...
We gota plastic picc cover so kids can swim. <A href="<A HREF="http://www.medcareproducts.com/castcovers/products.asp?dept=1106">http://www.medcareproducts.com/castcovers/products.asp?dept=1106</A>"><A HREF="http://www.medcareproducts.com/castcovers/products.asp?dept=1106">http://www.medcareproducts.com/castcovers/products.asp?dept=1106</A></A>

We used a plastic storage cart with drawers for all the supplies. You can justbring it in the car for trips. 
<A href="<A HREF="http://www.sterilite.com/SelectProduct.html?id=406&ProductCategory=187&section=1">http://www.sterilite.com/SelectProduct.html?id=406&ProductCategory=187&section=1</A>"><A HREF="http://www.sterilite.com/SelectProduct.html?id=406&ProductCategory=187&section=1">http://www.sterilite.com/SelectProduct.html?id=406&ProductCategory=187&section=1</A></A>

Our homecare companygave usa fanny-pack style IV pump. It runs a little slower, but they could take itanywhere. 

We had our nurse and our chest pt person meet us at our vacation house! 

If I think of other things, I'll let you know. Hang in there.

TonyaH · Jul 22, 2011

Thanks, Jane,
 
We have always been told not to swim. Period. Our clinic advises against the picc covers you mentioned. All he can use a cover for is showering. Being the good, obedient parent, I have spent the past four years following directions. But I think it's time to deviate a little. 
 
I have another question for you. Did the boys wear their covers whenever they were on the beach, or just when they swam? Did the salty/sandy air aggrivate the picc dressing at all? 
 
I hope things are settling down at your house, Jane. How are both boys doing?

TonyaH · Jul 22, 2011

Thanks, Jane,

We have always been told not to swim. Period. Our clinic advises against the picc covers you mentioned. All he can use a cover for is showering. Being the good, obedient parent, I have spent the past four years following directions. But I think it's time to deviate a little. 

I have another question for you. Did the boys wear their covers whenever they were on the beach, or just when they swam? Did the salty/sandy air aggrivate the picc dressing at all? 

I hope things are settling down at your house, Jane. How are both boys doing?

TonyaH · Jul 22, 2011

Thanks, Jane,

We have always been told not to swim. Period. Our clinic advises against the picc covers you mentioned. All he can use a cover for is showering. Being the good, obedient parent, I have spent the past four years following directions. But I think it's time to deviate a little. 

I have another question for you. Did the boys wear their covers whenever they were on the beach, or just when they swam? Did the salty/sandy air aggrivate the picc dressing at all? 

I hope things are settling down at your house, Jane. How are both boys doing?

Giggles · Jul 22, 2011

They make these super rubbery tight covers you can put over your arm to cover the picc. I looked into a LONG time ago but what I did not like about it that it was hard to get on and pull on and it yanked the %$^&* out of my arm. So I was scared I was gonna pull the picc line right out. But I am sure since they were soooooo tight it was water proof. Just my opinion you have to be REALLY careful with picc lines cause if you do get something in that line it can be life threatening. The line goes to your heart, so I do not fool around or deviate from keeping the line clean and free from debris. But I do agree you have to live a life and deviation to a certain point is necessary. CF can not control your life, you have to still live it but just differently. But for me I do not fool around with picc lines. I have never traveled with a picc. I pretty much do not feel up for much when I am getting my "tune up" but I also never have done it for longer than 3 weeks. I am sure if you wanted to go out of town the home healthcare company usually has offices all over the country if they are a big one and maybe they can set something up for you in another state. I'd check with insurance and make sure all is covered still. Don't want that surprise. Good luck and hang in there. CF is a long and hard existence. But laughing along with the way and rolling with the punches is doable! It is what it is. If you ever want to talk you can pm me. I also wrote several newsletters for my pediatric cf clinic and it was about myself as a child growing up with CF and how to deal with things when you are a child with CF. I can send them to you if you ever want to read them. Just need your email. Hang in there!

Giggles · Jul 22, 2011

They make these super rubbery tight covers you can put over your arm to cover the picc. I looked into a LONG time ago but what I did not like about it that it was hard to get on and pull on and it yanked the %$^&* out of my arm. So I was scared I was gonna pull the picc line right out. But I am sure since they were soooooo tight it was water proof. Just my opinion you have to be REALLY careful with picc lines cause if you do get something in that line it can be life threatening. The line goes to your heart, so I do not fool around or deviate from keeping the line clean and free from debris. But I do agree you have to live a life and deviation to a certain point is necessary. CF can not control your life, you have to still live it but just differently. But for me I do not fool around with picc lines. I have never traveled with a picc. I pretty much do not feel up for much when I am getting my "tune up" but I also never have done it for longer than 3 weeks. I am sure if you wanted to go out of town the home healthcare company usually has offices all over the country if they are a big one and maybe they can set something up for you in another state. I'd check with insurance and make sure all is covered still. Don't want that surprise. Good luck and hang in there. CF is a long and hard existence. But laughing along with the way and rolling with the punches is doable! It is what it is. If you ever want to talk you can pm me. I also wrote several newsletters for my pediatric cf clinic and it was about myself as a child growing up with CF and how to deal with things when you are a child with CF. I can send them to you if you ever want to read them. Just need your email. Hang in there!

Giggles · Jul 22, 2011

They make these super rubbery tight covers you can put over your arm to cover the picc. I looked into a LONG time ago but what I did not like about it that it was hard to get on and pull on and it yanked the %$^&* out of my arm. So I was scared I was gonna pull the picc line right out. But I am sure since they were soooooo tight it was water proof. Just my opinion you have to be REALLY careful with picc lines cause if you do get something in that line it can be life threatening. The line goes to your heart, so I do not fool around or deviate from keeping the line clean and free from debris. But I do agree you have to live a life and deviation to a certain point is necessary. CF can not control your life, you have to still live it but just differently. But for me I do not fool around with picc lines. I have never traveled with a picc. I pretty much do not feel up for much when I am getting my "tune up" but I also never have done it for longer than 3 weeks. I am sure if you wanted to go out of town the home healthcare company usually has offices all over the country if they are a big one and maybe they can set something up for you in another state. I'd check with insurance and make sure all is covered still. Don't want that surprise. Good luck and hang in there. CF is a long and hard existence. But laughing along with the way and rolling with the punches is doable! It is what it is. If you ever want to talk you can pm me. I also wrote several newsletters for my pediatric cf clinic and it was about myself as a child growing up with CF and how to deal with things when you are a child with CF. I can send them to you if you ever want to read them. Just need your email. Hang in there!

Jane · Jul 22, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: TonyaH Thanks, Jane,
 We have always been told not to swim. Period. Our clinic advises against the picc covers you mentioned. All he can use a cover for is showering. Being the good, obedient parent, I have spent the past four years following directions. But I think it's time to deviate a little.
 I have another question for you. Did the boys wear their covers whenever they were on the beach, or just when they swam? Did the salty/sandy air aggrivate the picc dressing at all?
 I hope things are settling down at your house, Jane. How are both boys doing?

</end quote></div> 
Honestly, I never asked our clinic about picc covers. The info came from our home nurse who recommended them. Our clinic would probably have said the same thing. My boys are not huge swimmers anyway, so having the cover on for short, shallow swimming worked for them. They did not use the cover on the sand, but they did keep the picc clean by covering it with the top of a knit sock. They stayed dry and clean on the beach.
We have found ways to deviate a little from clinic protocol to make life easier at home- nothing unsafe of course. Sometimes they forget they are treating a whole kid, not just a disease.
My question is, do you have a home nurse who does dressing changes? If the picc dressing gets damp, you can always have someone come out to change it.
Thanks for asking about the boys, right now they are good and we are on vacation at the beach!

Jane · Jul 22, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: TonyaH Thanks, Jane,
We have always been told not to swim. Period. Our clinic advises against the picc covers you mentioned. All he can use a cover for is showering. Being the good, obedient parent, I have spent the past four years following directions. But I think it's time to deviate a little.
I have another question for you. Did the boys wear their covers whenever they were on the beach, or just when they swam? Did the salty/sandy air aggrivate the picc dressing at all?
I hope things are settling down at your house, Jane. How are both boys doing?

</end quote> 
Honestly, I never asked our clinic about picc covers. The info came from our home nurse who recommended them. Our clinic would probably have said the same thing. My boys are not huge swimmers anyway, so having the cover on for short, shallow swimming worked for them. They did not use the cover on the sand, but they did keep the picc clean by covering itwiththe top of aknit sock. They stayed dry and clean on the beach.
We have found ways to deviate a little from clinic protocol to make life easier at home- nothing unsafe of course. Sometimes they forget they aretreatinga whole kid, not justa disease.
My question is, do you have a home nurse who does dressing changes? If the picc dressing gets damp, you can always have someone come out to change it.
Thanks for asking about the boys, right now they are good and we are on vacation at the beach!

Jane · Jul 22, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: TonyaH Thanks, Jane,
We have always been told not to swim. Period. Our clinic advises against the picc covers you mentioned. All he can use a cover for is showering. Being the good, obedient parent, I have spent the past four years following directions. But I think it's time to deviate a little.
I have another question for you. Did the boys wear their covers whenever they were on the beach, or just when they swam? Did the salty/sandy air aggrivate the picc dressing at all?
I hope things are settling down at your house, Jane. How are both boys doing?

</end quote> 
Honestly, I never asked our clinic about picc covers. The info came from our home nurse who recommended them. Our clinic would probably have said the same thing. My boys are not huge swimmers anyway, so having the cover on for short, shallow swimming worked for them. They did not use the cover on the sand, but they did keep the picc clean by covering itwiththe top of aknit sock. They stayed dry and clean on the beach.
We have found ways to deviate a little from clinic protocol to make life easier at home- nothing unsafe of course. Sometimes they forget they aretreatinga whole kid, not justa disease.
My question is, do you have a home nurse who does dressing changes? If the picc dressing gets damp, you can always have someone come out to change it.
Thanks for asking about the boys, right now they are good and we are on vacation at the beach!

living life on ivs

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