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TPN and Travel limitations

Frantik
0 Recommendations

Hi all:

It's been a long time since I've posted, I've had a hard time keeping up as I've taken on moderating a list for long-term cancer survivors after the previous moderator sadly passed away. That really keeps me busy online. But this group has been such a help and support.

I have been on TPN since 2005. I depend on it partially for malabsorption primarily. I take it 4 nights/week just 10 hour runs (overnight). In 2007 I took a trip to France and Scotland and felt so lucky. It was difficult to plan around the TPN, as my provider would not ship it. Kaiser is my health provider and they do the TPN formula in-house. They do a premixed version that lasts only 1 week. I figured I bring 1 week and they'd ship the 2nd, but no dice. Instead, I found a home health provider in Scotland that agreed to provide. I paid out of pocket, then came home and submitted a claim. I had my fingers crossed, as I had no idea whether they'd pay or not. (The bill was $800.) They paid, no questions asked.

I was thrilled, and thought OK, I can do this. I can afford to travel and even stay healthy enough too. So, I went to Scotland (my sister and her family live there) again in June. I followed the exact same protocol, but was denied. Long story short, on appeal they decided to pay. They said that they'd paid by mistake the first time. So, today I went to see the member services person who (very rudely and in a very cruel manner, may I say) made it clear that Kaiser would not pay for this in the future. This means that I really can't travel. This expense it just too much to pay out of pocket. And I'm so frustrated that they'd pay for an emergency, but not the thing I need to stay alive and out of the Emergency Room. Would they rather that I just skip TPN altogether and then submit the hospitalization bill?

My question is, has anyone else dealt with something like this? Also, don't other TPN people have a TPN with a much longer shelf life? I thought that there were some people who get TPN that is not premixed, and it lasts up to a month or so. Does all TPN have to be refrigerated? Has anyone shipped TPN to another country? I would love to hear any thoughts and/or ideas.

Because it seemed that the international thing was the biggest issue, I asked if I could find TPN here in the US that had a longer shelf-life for me to take on my trip, would they pay for that? She said no, b/c Kaiser provides it. I said, but they don't provide *this* kind of TPN. That wouldn't make a difference, apparently.

Thanks,
Fran

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12 replies

cp20855

Yes, different providers have different shelf lives for TPN!

There is some sort of accrediting for the pharmacy labs. The level of accredidation (did I spell that right?) determines the shelf life of the products they ship.

Our deliveries from Coram have 3 weeks between preparation and discard dates. This includes hydration, 2:1 TPN, and 3:1 TPN (in a 2-chamber bag).

LOL, I have learned these things within the last year although my husband has been on TPN for 5 years.

Just so you'll know, 2:1 means two components (protein and carbs) mixed in the bag, 3:1 means three components (lipids along with protein and carbs) are in the bag.

Apparently the lipids have some special requirements, so the 3:1 TPN comes in a "two-chamber" bag. It is just the same as a regular TPN bag but with a nifty divider thing (lipids in one part, protein & carbs in the other part) that easily pulls off so the 3 components mix up when it is time to use them.

I have found that to learn the shelf life of the TPN prepared by various pharmacies, I must really be specific in my questions and keep on asking in different ways until I find the answers. Obviously it is to the advantage of many patients (especially if you travel!) to have longer shelf life for their products.

Whew. Everyone, please correct anything I've misunderstood! Thanks and best wishes!

Frantik

Hi there Cp20855 (Sorry...that sounds really robot-ish, but I don't see a name or nickname anywhere. ;)

Thank you for the info. Do you have any idea the cost of your TPN (if you had to pay out-of-pocket)? I would need the 3:1 TPN. I have heard so many different rumors about how much TPN costs. The only thing I know for sure is that in Scotland, my bills were between $700 and $800 for 4 bags. But here at Kaiser the member services person said it costs $18 a bag. That seems absurdly low. The TPN nurse at Kaiser told me bags costs up to $1,000, per bag. (So I was actually relieved at the $700 bill, as that's not out of the realm of affordable, but it's really difficult all the same.)

The last person I would believe is the Kaiser member services person. She had absolutely NO clue what TPN was (not surprising) and even worse didn't seem to care in the least about my situation and was totally not inclined to listen to me. Which meant that much of her information was obviously incorrect.

Sorry, now I'm ranting... ;)

Take care,
Fran

cp20855

Our provider bills our insurance company $37/hydration and $189/TPN.

Sometimes our provider has mistakenly billed us instead of the insurance company. I would have to hunt for them to be sure, but seems to me that the bills in that case (w/o insurance) were at least multiple of 10.

carol

aloha64

Fran, thanks for the post. I too have Kaiser, which I am very happy with...but I too want to travel. I have been on TPN over the last two years--and now am dreaming of getting out of the house. I have taken short trips where I have been able to take my pump and supplies (even though I am not suppose to take them out of state--from CA to Az/Utah...by car). I hope we can find a way to get Kaiser and other medical insurance co. to understand how important it is for us to have real lives with the ability to full live with the freedom that our illness allow us. As I get stonger and my problems allow me to be out of the house I don't want a policy to say "no". Thanks again for the post!

Frantik

Hi Aloha64:

I added you as a friend through this group and included my e-mail address. It's nice to know another Kaiser person. Are you in Southern or Northern CA? I am in San Francisco. While I also think Kaiser does a good job, I really like my TPN team (phamacist, dietician, GI dr.), this has been a real blow. You really hit the nail on the head when you say: "As I get stonger and my problems allow me to be out of the house I don't want a policy to say "no". " That is exactly what I was trying to explain to the Member Services person at Kaiser. Not b/c I wanted to argue with her, far from it. Just b/c I wanted her to understand that this is not something frivolous.

For me, because my sister, my BIL, and my wonderful niece all live in Scotland, it breaks my heart to think that I will not be covered by my insurance if I leave the country on TPN. That feels like an arbitrary and unfair limitation. I have had major health problems all my life, so I've lived with a lot of limitations. And have been unable to do so many things that my peers just take for granted. I don't want to lose this too.

I am speaking to the Kaiser TPN pharmacist about creative options here. I don't have a trip planned, but I'd like to do some of the leg-work before an opportunity comes up. Also, my husband had some good ideas. For example, I travel on my own for week one and bring 1 week of TPN. Then he comes a week later with week 2 of TPN. He swears that we'll find a way to make this work, and that has calmed my anxieties quite a bit.

Feel free to contact me off this board if you'd like to hear more. If I find out anything important about this, I will let you know.

Take care,
Fran

aloha64

Hi, I am just starting to dream! My son and grandsons live in Jakarta/Bali as do some friends of 45 years! I also have a friend who wants to dream with me and do some traveling to Costa Rica and maybe Peru. I also have a brother in Maui where I lived for a good part of my life. I was raised on Oahu. I just missed my 45th yr. high school reunion in Honolulu due to the travel issue. So, with you I will start talking to membership at Kaiser (I am in So. Ca.) and see what can be worked out. It is still all just a dream--I am looking at a possible surgery in the near future so life is alway an adventure ;-) Thanks for friendship Lesly Ann

jillypooo

Hi Fran, I have been in the LTS group off and on. Takes a lot of time. Just have to spend more time in other groups, at this point. Just got into this site from a recommendation from my "past" TPN gal from years ago. Now I'm back on it with some allergies problems, that we are trying to figure out. I'm wanting to do some traveling, also, so this "thread" is very interesting. My daughter works for SW airlines and we can fly free. Just that radiation damage from 34 years ago has taken a toll on my colon and now the kidneys. The ostomy is terrific!!
Interesting about the life of the bags. We will be changing to Corum by the end of the week, so I will check out how long that bag lasts. Now, how do you ship it? Suitcase with ice? Box with ice? Do you tell the airlines? Do you need some papers with info fom the doctor?
^j^

oleyfriends

Hi Fran,

It might be worth looking into Clinimix (made by Baxter Healthcare) - a premixed TPN solution that I believe does not require refrigeration and has longer than a two-week shelf life. You'll need to confirm these details. It has been useful for other consumers traveling abroad with TPN.

Information is posted at www.clinimix.com

Or you can contact Mylene Salamero
Work Phone: 847-270-4924
Cell Phone: 224-475-8760
Email: Mylene_Salamero@Baxter.com

Roslyn Dahl
Oley Staff Member
dahlr@mail.amc.edu

Frantik

Hey Roslyn:

Thanks so much! I really appreciate the info, and I'm sure it will help others as well. I will look into that.

I wanted to add, esp. for Lesly Ann, my fellow TPN/Kaiser friend :) the following: I found out from my Kaiser pharmacist that they will provide a TPN solution that can travel better b/c it's got a much longer shelf life. He left me a message yesterday, so I didn't get to ask any questions yet, but from what I understood, it is the kind with the 2 chambers that you mix together before running it. There's a big drawback, though, at least for me. There's no lipids. I have fat malabsorption, so for me a big part of the TPN is the lipids. Soooo, this doesn't sound ideal. But I'm pretty sure that for a week or two, it would not be a big deal

daviandsteve

Hi Frantik!

I don't know if this will help you any, but here goes. I copied this from a post I made several months ago.

I recently traveled from the US to Ireland, but only for eight days. Before the trip I contacted everyone on the Oley list who had international travel experience. The most helpful suggestion I received was to use a rolling, soft-sided cooler (I ordered it through the Wal Mart web site) to transport the TPN. I placed ice packs on the bottom, then the PN, then more ice packs. I packed my pump (well padded) in a side pocket of the cooler and enough supplies for one day in another pocket. The rest of the supplies I packed in my checked baggage. I had a letter from my doctor, which she based on the Oley website sample letter I had given her. I had no problems going through security, but they did insist on removing each item to hand inspect it and they x rayed the pump and cooler. The x ray did not affect the pump, and the PN was still cold when we arrived.

We stayed at B & B's, and all of the proprietors were happy to chill the PN and refreeze the ice packs.

My bags (which are dual chamber) are good for 30 days. I just checked to make sure that is still true and it is; the bags I received today expire November 12.

Davi

Frantik

That's not really what I need, Davi. But it's nice of you to post, perhaps it will help someone else.

It's not the traveling or the packing that's the issue; I've traveled internationally twice now. It's getting the correct TPN formula that would be covered by my insurer (Kaiser) when I want to travel out of the country. The trips I've taken, KSR paid for a home health company to supply my TPN abroad. They say this was in error. I've basically been given one option if I want to bring it with me on an international trip and for Kaiser to cover it. It's a two chamber bag that lasts a month. But no lipids. By all accounts, TPN is a very expensive thing to buy out of pocket, which I'd be doing with any other (non-Kaiser) TPN provider. So, what you get (whether or not it has lipids) is probably outside my budget.

Thanks...

miguel3

Hello Fran,
I'm living in Portugal and my son Miguel is 5years old and on TPN since birth. For the past 2 years we have been receiving TPN from Baxter ... and it lasts a lot..the boxes say 2011! it doesn't require refrigeration. It is from Baxter called OLICLINOMEL. I know that Baxter has this in England. It come in 3 div. bags ..so this does have Lipids. They have a large assortment to ajusts to manys needs.
I hope this helps...
All the best.
Darlene

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