PICC line and TPN...any experience?

[disfan07]

I thought that maybe someone here might have experience with this. The home health nurse will be coming 2xday for the first few days to draw labs in the AM and set up the TPN at night but after that we will be on our own with the TPN. So I was just wondering if anyone here had any advice based on personal experience with a PICC and/or TPN.

I am getting my second PICC line tomorrow (my first was ony in while I was hospitalized in September.....taken out before we left) and we are supposed to start TPN tomorrow night. This is the first time we've ever had to deal with ANYTHING home health related. I am being put on it because of GI problems and weightloss and concerns of malnutrition (we think I have mitochondrial disease but we won't know for sure until we go to Mayo)

I already know kind of the basics of caring for the PICC because I watched my nurses do it for 11 days inpatient but it's a whole new thing having to do it at home. It's slightly nerve wracking knowing my parents and I are responsible for this and not my very very well trained awesome nurses!

But if anyone has any practical advice for having a PICC line at home and/or doing TPN at home that would be awesome!

 

[KathyTX]

I think you'd be more likely to find help and support for this on a medical forum than on a Disney travel forum.

But I know that we have lots of people experienced with this over on our disABILITIES forum. Have you checked there?

 

[disfan07]

I think you'd be more likely to find help and support for this on a medical forum than on a Disney travel forum.

But I know that we have lots of people experienced with this over on our disABILITIES forum. Have you checked there?

Oops....I thought I had posted this in disabilities.....this is what happens when I have multiple windows open. Would it be possible to move this to disABIlITIES?

 

[KathyTX]

Moved from the Community Board to disABILITIES.

 

[hereyago]

I had to learn how to do daily iv.treatments via PIIC line for my mom a few months ago. Home health nurse showed me step by step.

Make a step by step directions sheet for back up. Also, organize your supplies, it makes things easier.

I had to do it for 21 days and just doing it over and over made it easier.
Y'all can do this, if I can,anyone can. Good luck to you.

 

[Michigan]

My youngest daughter got bacterial meningitis 3 years ago and came home with a PIC line that I had to inject antibiotic and flush 3 times a day. It was no big deal to do and even did it while camping.

 

[starann]

I will respond in the morning.....I am a visiting nurse and we teach people all the time how to do this! You can do it!

 

[The Mystery Machine]

I thought that maybe someone here might have experience with this. The home health nurse will be coming 2xday for the first few days to draw labs in the AM and set up the TPN at night but after that we will be on our own with the TPN. So I was just wondering if anyone here had any advice based on personal experience with a PICC and/or TPN.

I am getting my second PICC line tomorrow (my first was ony in while I was hospitalized in September.....taken out before we left) and we are supposed to start TPN tomorrow night. This is the first time we've ever had to deal with ANYTHING home health related. I am being put on it because of GI problems and weightloss and concerns of malnutrition (we think I have mitochondrial disease but we won't know for sure until we go to Mayo)

I already know kind of the basics of caring for the PICC because I watched my nurses do it for 11 days inpatient but it's a whole new thing having to do it at home. It's slightly nerve wracking knowing my parents and I are responsible for this and not my very very well trained awesome nurses!

But if anyone has any practical advice for having a PICC line at home and/or doing TPN at home that would be awesome!

Sorry to hear that you have to go on TPN however I hope it helps you figure out what is going on with you.

My sister's MIL was on it for 2yrs. She was on 2 different types over the course of her life. First was the TPN calibrated to her specifications with vitamins, etc. Later she was put on "general TPN" since she was sliding downhill.

My sister borrowed my dd's "big dorm fridge" to keep the TPN in. It has to be stored in the fridge away from food and the bags are pretty big.

You have to take them out of the fridge to "warm up" for a certain amount of time before hookup.

So basically you have to plan your day around your TPN. I recommend getting a journal and a calendar so you can jot things down for yourself. That way you have info for appts. and you don't have to try and remember things. Makes life easier. Also they used their "smart phone" alarms too. Really helped with keeping things on time.

Not a big deal and you will get the hang of everything real quick.

 

[Wee Annie]

I had to administer tpn and various other antibiotics and infusions to my daughter at home while she was on treatment for leukemia (I used to beg them to discharge us from the hospital, so they would agree and send us home with nursing supervision). It seems very daunting, but honestly, you really can do it. The home nurse will walk you through it, and I would tell you to write down the procedure step by step (i.e., sterilize cap, open clamp, flush with saline, etc -- don't go by this list, it's been a long time!!!). I also second the advice to have all of your supplies laid out and completely ready before you start. I made a mistake once, and we all lived through it. I called a friend who was a nurse, freaking out, and she laughed and told me how often mistakes are made at hospitals (I know, not reassuring, but makes you feel better when you make a mistake).

 

[disfan07]

Thanks guys. Yeah I mean, I think we'll get the hang of it pretty quickly it's just of course a little nerve wracking going from the super knowledgable nurses with everything at their disposal to being home 30 miles away from the hospital.

We don't know how long this will be for. I've lost 14 lbs in like 7 weeks so we are trying to stabilize and maybe get me back up to about 110-115. But it all really depends on how my GI system behaves. As I'm able to eat more, we will decrease the TPN.

Has anyone flown with the PICC and TPN? We are supposed to go to Mayo in Minnesota in 3 1/2 weeks. We don't know if I will still be on TPN but I will most likely still have the PICC so that will be something new. I'm assuming that between home health care and mayo clinic they would be able to arrange to have the supplies delivered to our hotel? What about security with the PICC? We have a fairly long flight (LA-Minneapolis with a layover) but luckily I would be able to go the entire day without TPN or IV fluids if necessary since I can still eat and drink some by mouth.

 

[disfan07]

I had to administer tpn and various other antibiotics and infusions to my daughter at home while she was on treatment for leukemia (I used to beg them to discharge us from the hospital, so they would agree and send us home with nursing supervision). It seems very daunting, but honestly, you really can do it. The home nurse will walk you through it, and I would tell you to write down the procedure step by step (i.e., sterilize cap, open clamp, flush with saline, etc -- don't go by this list, it's been a long time!!!). I also second the advice to have all of your supplies laid out and completely ready before you start. I made a mistake once, and we all lived through it. I called a friend who was a nurse, freaking out, and she laughed and told me how often mistakes are made at hospitals (I know, not reassuring, but makes you feel better when you make a mistake).

Thanks. I hope your daughter is doing better.

Yeah I'm so glad to not be doing this inpatient. I was inpatient for abut 40 days this summer (1 major surgery and 3 readmittances) and as much as I love my nurses and CPs at the hospital (same floor for about 35 of the days) its just so much easier being home. We did honestly think they were going to start me impatient so we were kind of surprised when we were told this would be solely outpatient from the beginning!

 

[Disney Doll]

Thanks guys. Yeah I mean, I think we'll get the hang of it pretty quickly it's just of course a little nerve wracking going from the super knowledgable nurses with everything at their disposal to being home 30 miles away from the hospital.

We don't know how long this will be for. I've lost 14 lbs in like 7 weeks so we are trying to stabilize and maybe get me back up to about 110-115. But it all really depends on how my GI system behaves. As I'm able to eat more, we will decrease the TPN.

Has anyone flown with the PICC and TPN? We are supposed to go to Mayo in Minnesota in 3 1/2 weeks. We don't know if I will still be on TPN but I will most likely still have the PICC so that will be something new. I'm assuming that between home health care and mayo clinic they would be able to arrange to have the supplies delivered to our hotel? What about security with the PICC? We have a fairly long flight (LA-Minneapolis with a layover) but luckily I would be able to go the entire day without TPN or IV fluids if necessary since I can still eat and drink some by mouth.

You would probably be able to bring the PICC supplies with you (tubing, dressings, caps, clapms etc) but you might have a hard time with the fluid itself.

Are you going to b an inpatient at Mayo? If so, they will take care of the supplies for you. If you're going to be an outpatient, is there a medical equipment company out near Mayo that you can contact?

 

[joanchris]

My daughter is on TPN, has been for 3 years now. We are part of an amazing Facebook group, just for people on TPN at home. If you'd like to be invited to join the group you can PM me your email, I can submit a request for you to join. There are amazing people in this group, the amount of help is unbelievable. I've had a question, posted it and had several answers within an hour.

 

[disfan07]

You would probably be able to bring the PICC supplies with you (tubing, dressings, caps, clapms etc) but you might have a hard time with the fluid itself.

Are you going to b an inpatient at Mayo? If so, they will take care of the supplies for you. If you're going to be an outpatient, is there a medical equipment company out near Mayo that you can contact?

Right now I am outpatient. We have appts with comprehensive GI, motility, genetics, eosinophilic disease clinic, allergy/immunology, neurology, pulmonary. It looks like I need at least, a bone marrow biopsy, a muscle biopsy, upper endoscopy.

It could change to inpatient if necessary but we won't know until I get there. I figure we'd be able to take the PICC stuff with us. We already have a medical bag with a nebulizer, 3 sets of tubing, neb meds, epi pens, and other various meds so we're used to travelling with medical stuff...it's just the PICC that we've never done before.

 

[disfan07]

My daughter is on TPN, has been for 3 years now. We are part of an amazing Facebook group, just for people on TPN at home. If you'd like to be invited to join the group you can PM me your email, I can submit a request for you to join. There are amazing people in this group, the amount of help is unbelievable. I've had a question, posted it and had several answers within an hour.

That would be awesome. I will PM you my email address. Everyone hopes this is short term but if it is mitochondrial disease, we know it won't be and it wil probably be a recurring event so I like to be prepared. I like information....it's the OCD part of me.

 

[shoes99]

My sister is on long term TPN and travels frequently. It can be frustrating but for a short trip she carries her supplies and supplement cans in a carryon. For longer trips she ships the cans and supplies. Be sure to tell TSA you have medical supplies, and if they insist on touching anything ask for them to change their gloves. Now Sis is registered with JetBlue as requiring wheelchair assistance, and that makes her much more comfortable when flying and going thru security. She is a regional rep in FL for www dot oley dot org and they are a wonderful organization for TPN consumers. What she learned at their seminars has saved her life.
Michele

 

[Wee Annie]

You can definitely get through TSA with tpn in a bag, but I would think it would be heavy to travel with. Plus it needs to be refrigerated, and with bags that heavy, that would be one heavy cooler you'd be traveling with. I would think it easier to have a medical supply company on hand at your destination to deliver tpn to you after you arrive.

We have traveled a number of times with large quantities of meds that needed to be kept cool. I always took a letter from my daughter's oncologist stating her diagnosis and listing all the liquid meds we'd be traveling with (because they included chemo and things like morphine, as well as g-tube supplies), and the fact that we needed to be allowed to bring ice packs, etc, through TSA because the meds needed to be kept cool. When we approached TSA, I would immediately tell them I had a cooler with liquid meds to declare, and they would take me aside after I went through the scanner and go through it with me. TSA was always very nice about it, with the partial exception of Orlando, where a TSA agent was a little snippy with me about something no one else had ever raised (the type of ice pack I was carrying). And I say "partial" as he wasn't really all that bad, just lectured me for a couple of moments as I smiled, and then let me go.

As for the picc line, again, a dr's note it useful. I forget -- does a picc line have metal? I don't think so, right? My daughter started with a picc line, but then moved to an implanted port. Our dr's note also included the fact that she had a port (and she also had a g-tube), but it never caused any problems whatsoever.

And my daughter is doing MUCH better -- thanks so much for asking Hope Mayo gets you on the right track soon.

 

[disfan07]

You can definitely get through TSA with tpn in a bag, but I would think it would be heavy to travel with. Plus it needs to be refrigerated, and with bags that heavy, that would be one heavy cooler you'd be traveling with. I would think it easier to have a medical supply company on hand at your destination to deliver tpn to you after you arrive.

We have traveled a number of times with large quantities of meds that needed to be kept cool. I always took a letter from my daughter's oncologist stating her diagnosis and listing all the liquid meds we'd be traveling with (because they included chemo and things like morphine, as well as g-tube supplies), and the fact that we needed to be allowed to bring ice packs, etc, through TSA because the meds needed to be kept cool. When we approached TSA, I would immediately tell them I had a cooler with liquid meds to declare, and they would take me aside after I went through the scanner and go through it with me. TSA was always very nice about it, with the partial exception of Orlando, where a TSA agent was a little snippy with me about something no one else had ever raised (the type of ice pack I was carrying). And I say "partial" as he wasn't really all that bad, just lectured me for a couple of moments as I smiled, and then let me go.

As for the picc line, again, a dr's note it useful. I forget -- does a picc line have metal? I don't think so, right? My daughter started with a picc line, but then moved to an implanted port. Our dr's note also included the fact that she had a port (and she also had a g-tube), but it never caused any problems whatsoever.

And my daughter is doing MUCH better -- thanks so much for asking Hope Mayo gets you on the right track soon.

I figured it would be easier to do delivery from a medical supply company than travelling with the actual TPN. Luckily it sounds like my hospital social worker and case manager are going to work with the supply company and mayo to make sure everything is set just in case. We won't know until a few days before we leave if I will still need it so we are trying to prepare ahead of time and if I need it, we'll have it....if not....great.

But I get my PICC line today....I've had one before so I know how easy it is but still, my anxiety is like sky high today. Its really sinking in today....