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Posted 1/15/2013 4:05 AM (GMT 0)
Has anyone ever gotten TPN at a hospital then been sent home on it? what is the drill with nurses coming to flush the lines etc. I NEED IT and finally got the offer, but now have a TON of questions. Also does Medicare cover it? or does supplemental health insurance that I have from BCBS?

Rosemary
Posted 1/15/2013 4:51 AM (GMT 0)
Unless you are ill/sick, you should be able to begin parental nutrition without an inpatient hospitalization.

You will sign-up with an infusion company who will provide your parental nutrition supplies. A visiting nurse will come to your home to provide you with initial training and then will follow-up once a week to change the sterile dressing. Blood draws are done weekly (initially) to monitor critical lab values (liver profile; blood glucose) and to regulate the concentration of the PN.

There is an organization, The Oley Foundation, that provides education and support for individuals with PN and enteral feeding (tube feeding). There is also an on-line support group. www.oley.org

I have been on parental nutrition several times, on-and-off, at home. Like living with an ostomy, there is an adjustment/adaptation - but, overall, quite doable.

There are even back-backs in which you can place the infusion pump so that you can be out-and-about.

Check out the Oley site. Lots of valuable information there.
Posted 1/15/2013 11:42 AM (GMT 0)
Rosemary I'm so glad you are finally getting some help at last I felt so much better after a week of tpn I had a pic line inserted in the top of my arm and was given nutrition this way my blood sugar etc was monitored every day like seashell said when I asked about having tpn at home was told it was to difficult because of the blood monitoring , changing food bag every 24hrs and the risk of infection but I believe seashell is right in saying it can be done from home .

Don't know if you read my post on stoma stopped working again but it did !
Had severe bloating and pain for a week vomiting then all of a sudden it eased and I have been eating more ( lot more ) these past few few days i really think its infflamation swelling causing the problem or as surgeon said adhesions do soften over time that's why he wants to wait and see what happens till march April .

Maybe the difference between Sarah me and yourself is that our problems are caused by adhesions and yours is that along with stenosis dont know just a thought
I think when you are able to get some nutrition maybe waiting for surgery as long as possible may seem a better thing in your case rosemary
Hang in. There thinking of you lucky
Posted 1/15/2013 11:43 AM (GMT 0)
Ps my picc line was taken out wheni left the hospital
Posted 1/15/2013 1:36 PM (GMT 0)
thx al.. Really scared but really need nutrition. Rosemary
Posted 1/15/2013 2:57 PM (GMT 0)
Hi Rosemary:
You would need insertion of a PICC line, again. I have had mine done on a out-patient basis with local anesthetic.

Personally, I have disliked parental nutrition . . it caused grief with my pancreas (elevated blood glucose; pancreatitis). What worked for me was to have the pharmacist dose the parental nutrition at 75% of calculated value - this way the chemical cocktail was less intense and better tolerated.

Best wishes.
Posted 1/15/2013 9:15 PM (GMT 0)
Rosemary I was worried having tpn but really didn't need to be , you need nutrition and that's just a way to get it and you will feel so mulch better for it and it's not like it's forever although some people are able to only survive because of tpn .
If you do have to have surgery this will make you stronger as well
My surgeon said he wouldn't operate when I was so underweight and malnourished even if he could have .
Posted 1/15/2013 10:29 PM (GMT 0)
Over from the UC forum w/ my TPN experience. I started in the hospital, received a picc line. The nurses hooked up the tpn and it would run for 12 hours at night.

The day I was discharged from the hospital the home health care nurse met us immediately at the house. He taught my husband how to hook up the tpn, flush the lines, how to look for infections, etc. The TPN was delivered to my house that first night. I also received a huge box of supplies (syringes, heparin, etc).

It was quite the learning curve but we got it figured out after a few nights. The TPN did cause me a glucose problem and I ended up on insulin on top of the tpn. It resolved once I went off the TPN.
Posted 1/16/2013 4:14 AM (GMT 0)
it's really simple. the home health nurse will show you how to connect the line, put tubing in the pump, prime the pump, flush the PICC, turn on the pump (which is preprogrammed and locked so you can accidentally change the flow rate), flush lines, add multivitamin (if necessary), what to look for regarding issues with flow, infections. my infusion company made me change the batteries in the pump daily to prevent them dying during infusion (and supplied batteries). if they change the flow rate, they would likely send a new pump with a new rate programmed into the pump.

many folks end up with blood sugars that run a bit high during TPN. i received a glucose meter and other supplies for testing blood sugars. i never needed insulin added to TPN but as mentioned, that usually subsides once you're off TPN. some may ask that you give your insulin sub-q rather than in the TPN if needed. they'll ask you to check blood sugars and keep track of them so they can determine if you'll need insulin.

the doc knows about TPN generally and will order your initial formula but often times any changes in rate/electrolytes/concentration of nutrients are then managed by a pharmacist and/or dietician after initiation.

you would probably get a bag that includes your lipids in the same infusion as the TPN. in hospital you would get lipids in a separate infusion many times. including them in one bag at home simplifies the process.

the doc will generally not know about details on who does teaching, etc. how to run a pump, dressing changes, etc. this is left to the home infusion company.

generally your infusion starts at a lower rate and then will increase over a day or two so you will run your bag over 8-12 hours rather than 14-16. this allows you to be unhooked during the day so you can get out and about if needed. mine ran while i slept. the pumps are pretty quiet. if they don't run you on a daily taper up/down schedule so you're unhooked during the day, they usually provide you with a back-pack specific to the pump so you can easily transport the pump if you need to get out.

the home infusion company supplies all necessary supplies (saline flushes, dressing changes for the nurse, batteries, alcohol pads for swabbing injection ports, etc.)
Posted 1/16/2013 8:32 AM (GMT 0)
Hi Rosemary - you may want to pose this question over on the Crohn's forum, too - randynoguts has been on total parenteral nutrition for 13 years and could probably give you some pointers.

Best of luck to you!
Posted 1/16/2013 7:42 PM (GMT 0)
tpn can be done at home with home health nurses. Lots of monitoring to do which they use to change the tpn mixture. But it defintiely can be done.
Posted 1/16/2013 8:30 PM (GMT 0)
Rosemary, glad you're finally getting access to this. Sounds like it could make a huge difference. I'm no help w/the practicalities, but sounds like you've got some good advice.
Posted 1/18/2013 12:22 AM (GMT 0)
One doc is saying use guts with high cal boost but cannot pass anything but liquid thru the stoma drain tube so am in need of nutrients. PLUS the thick boost even thinned out at times gunks up in the tube. NOTHING comes out at night. I am ALONE at home. cannot believe this whole nightmare. I have had 2 picc's in my left arm for the failed surgeries out west. and right arm off limits. I have no clue how a 3rd picc site is going to be made. I asked if at the hospital where the TPN is being offered if there was a plan to redo the stoma (it is diff hospital than the place where they said they would redo in 6 months). The 6 month place was sooooo against TPN. I asked today if they would still help with the stoma if I had to go on TPN and I was told YES, but this was not right from the doc's mouth, but thru another party. Pre-albumin level is dropping. All I can picture is having all h-- break lose from being home alone with TPN and what if the VNA could not respond to an emergency? BUT the alternative is to wait until I am WAY too malnourished so I am grateful for the offer of TPN. So will get to that appt. Today I had 2 of the Boost high cals and a skim milk. liquid came out but who the heck knows if the high cal diluted boosts did.

So scary. Thx for input. I will have to do what I have to do. Hope this drain tube does not perf me. I cannot wait to see the doc at the place where they offered TPN. I wonder if this doc has ever heard of a stoma drain tube. At least they got the extent of my nutrition issues. May end up being the best place to go! esoR
Posted 1/18/2013 12:24 AM (GMT 0)
I asked if the place with the offer of TPN also endorsed gut use to keep the villi active in the intestine, They said sometimes. They are good about answering me but cannot be too specific as they have not seen me yet. This does make sense. At least they know trouble when they hear it! esoR
Posted 1/18/2013 12:39 AM (GMT 0)
There are supplemental (oral) drinks other than Boost/Ensure that you can explore while you wait for parental nutrition. I have been through many, many due to small intestinal issues.

Peptamen is a line that I would encourage you to look into.
Peptamen Jr. and Peptamen Jr. 1.5 have been my "close friends" in nutrition.

It is actually now available on line through amazon.com.

If you need to thin the consistency, add a touch of water.

Also, I live alone and did fine with TPN. There is a learning curve but it is not too steep.

If you have concerns or worries during a particular infusion, you simply disconnect and call the infusion company or RN the next day.

Continued best wishes. Keep faith.
Posted 1/18/2013 12:49 AM (GMT 0)
LOVED my TPN.. LOVED having a PICC line.. super handy thing :) Labs are a breeze! Let it warm up to room temp before running it.. fridge TPN will freeze you to your core.. pharmacy said to let it sit on counter for 3-4 hours to warm up a bit. My husband had to add in my vitamins and my fats right before we ran it each night. Mine ran for 12 hrs so from 7pm to 7am :) You get used to being tied to a tube :) My kids thought it was fun to flush my PICC. Playing doctor was fun for them :) I had to test my blood sugars for the 1st 2 weeks then since they stayed normal I was fine :) Wound healing is so much easier when one has calories in their body! :) Good Luck!
Posted 1/18/2013 12:51 AM (GMT 0)
seashell,

can you have this oral nutrient while on TPN. I read if just TPN the gall bladder can have an attack as bile just piles up because of gut disuse. Rosemary
Posted 1/18/2013 12:59 AM (GMT 0)
^I forgot about that part! We would set out the TPN for a couple of hours to knock the chill off. No matter what though I still got cold while it was running (no big deal though). My hubby would add the vitamins before we started the pump. Mine was in a back pack that allowed me to carry it around at night.

I was on bowel rest but I was eventually allowed a low residue diet during the day.

The blood sugar was an added inconvenience for me. I had to give myself several insulin injections a day and ck my blood sugar every couple of hours.
Posted 1/18/2013 1:34 AM (GMT 0)
Hi Rosemary:
When I started parental nutrition I was on intestinal rest. Nothing by mouth except ice chips.

As my intestinal function recovered, the % concentration of parental nutrition was titrated downward and I added in clear and full liquids (very, very small portion size of about 2 ounces).

And yes, you can use the Peptamen Jr. while on parental nutrition.

Some people use TPN (total parental nutrition) exclusively as their condition warrants. Other people use PN (parental nutrition) for a portion of their nutritional/calorie needs and supplement with oral intake as they tolerate.

You will meet with a nutritionist and or pharmacist to calculate what the parental nutrition will provide you based on your needs, height/weight, and what you can take in orally.

Hope you are feeling better soon. Sending you positive strength and best wishes.
Posted 1/18/2013 10:12 AM (GMT 0)
Just FYI from my own experience - I had total parenteral nutrition with a central line placed in the back of my neck (internal jugular - left side, a few inches behind the ear and just below the hairline). That time I was in hospital for the duration of the treatment, though - not sure if a central line like that is used/recommended in a home setting?
Posted 1/18/2013 3:29 PM (GMT 0)
yes you can definitely eat while on TPN. Last time in the hospital they tried to make me eat while on TPN.

also - look into Peptamen Prebio. Very very good stuff. Prescription only. But my GI doc prescribed it for me once and it made a huge difference. It tastes disgusting but who cares if you are trying to get re-nourished and stop losing weight.
Posted 1/25/2013 1:13 AM (GMT 0)
NEW PCP said IF I get the TPN line at the Boston area hospital she will NOT be my PCP!!!!!!!!!!!!

She wants me to see HER nutritionist at HER office and see HER counselor at HER office. She said IF I PERSIST in seeking help she will NOT be there for ME.

SO IF I GET THE TPN in Boston, THEN come home which would be the plan (as my blood levels are dropping and I am severely malnourished) THEN I will be coming home with a port and NO TPN as she will not OK the orders.

So where the heck does this leave me?????????????? I would RATHER nourish orally BUT seeing as I cannot, then what the heck????

I am going to go for the consult and see the colorectal surgeon re: the stoma with the needed drain tube and LEARN about TPN. I did contact a new PCP but no appt until Feb. 4th (my birthday) jeeze! BUT new one would likely pass records saying "doctor chaser" it was a very rough appt yesterday.

I saw her point in that if I want her to be my provider, she needs to be in control, BUT she said why have you been seeking all these opinions? I said I am hungry, malnourished have a non-working stoma and NEED to get nourished. It seemed like it was all about her!

She said she was going to call the surgeon who said that he would redo the stoma and move it to the other side, BUT that it would take awhile to get in touch with him as they are all seeing patients. THEN she said she would see me Feb. 13th. What the heck! More time to lose more weight and get MORE malnourished.

I am so trapped. BTW the stoma looks as though it is pulling up on the right side and is recessing on the left side. The needed tube puts a pull on it. The VNA and I cannot get an answer from the west hospital OR the place that said they can redo the stoma and move to the other side in MAY as to whether we flush the stoma drain tube or change it or what.

The place in the west that put in the drain tube sent me an RX for 30 tubes with 5 refills. Translated this means 5 months of tubes. one being put in per day. Who would supervise me changing my stoma drain tube? This one has been in me for a month! Even the Boost clears etc clog in it.

What the heck am I supposed to do? My teeth, my skin, hair, muscles, bones, etc are all going. I have Zero energy and am terrified.

esoR
Posted 1/25/2013 7:56 AM (GMT 0)
Rosemary,
I think I agree with your PCP here. Things don't get better over night. Constantly changing hospitals, surgeons and nutritionist until someone gives you the answer you want to hear, frankly-hasn't done you any favours I believe. Your PCP knows you and your patient history and it also sounds like that she has all the resources (nutritionist etc) available to identify the source of problems you have. Listen to what she says, if she says eat solids do as tells you, if you get a blockage it may be painful, but it is always temporary. cause and effect will give some insights. To my knowledge none of us has a medical degree, so the Internet shouldn't be used to diagnose your problem, listen to her she knows what she is talking about.
Posted 1/25/2013 1:46 PM (GMT 0)
     Rosemary, I know you don't want to hear this but I agree with Lovetoski.  
Posted 1/25/2013 1:52 PM (GMT 0)
Hi Rosemary:
I have to wonder if you are not adding to your list of troubles by engaging in the number of different physicians and opinions as you do.

I can appreciate the value of a second opinion (or third opinion, as may be warranted) and the inevitable less than competent physician that we all experience on occasion . . . but in the short time that I have been on this site your medical appointments with varied hospitals/physicians/clinicians seems like a ping pong ball.

For you own piece of mind and well-being, a defined core of practitioners (PCP, surgeon, nutritionist, psychologist) - in my humble opinion - would be to your advantage. It will likely take a multi-facted approach of several disciplines working in concert with you to help you achieve the best outcome.
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