♡ TPN Training Going Well! (27th - 30th.10.18) | Amy's Life ♡

[@kristennewbs777]

I’m so sad to hear she passed I keep watching her videos just to see her smile and laugh one more time.

[@TheAtwa667]

Same

[@charlottestandage2765]

Same!

[@olivedog1880]

Rest In Peace Amy. U fought so hard for so long. Rest easy

[@CNae03]

I miss Amy so much 🥺 she truly fought so hard , rest easy my love 🤍

[@vickyroach6124]

I miss her videos! It’s heartbreaking knowing she’s gone! She isn’t in any pain anymore!! She can brighten our skys now! ❤️ hoping all her families and friends and of course Tom are doing ok! Xx

[@Jilly_Neutron]

I would like to suggest Pole McCartney for the name of your IV pole.

[@Sarah-mo9lx]

lmao yes!

[@maddiefern1267]

I named mine Eileen (as in I lean and Come on Eileen) haha

[@davidhaney1394]

Thats no good if you call it by its first name all the time it`ll just be "Pole"..lol

[@guardiansanimalrescuestate7289]

Omg I have two poles. One in my room and one in living room for when my home health nurse comes for my IVIG once a week. I’m not sure if I can use the same pole. The one they gave for the feeds is very light. The one for my Hickman and TPN is so much heavier. So I need name ideas for the two. And the idea to have a place on the pole to put things like drinks, phone, laptop or whatever, is awesome. It’s so amazing to see u so happy. It gives me hope.

[@cyclemania6280]

I used to put sweat shirts over my TPN pumps so it would slightly lessen the noise and also stop the digital numbers glowing at night and annoying me. It will also give your pole some personality

[@princemoshe841]

You all probably dont care but does anyone know of a trick to log back into an instagram account? I was stupid forgot the login password. I appreciate any help you can give me.

[@jaxsongrady7617]

@Prince Moshe instablaster :)

[@norajung4513]

It is amzing the difference from the first vlog to the last vlog I watched. The first one you can tell you were sad and lethargic, the last you were so chipper and happy. It made me feel better for you. You are definitely doing the right thing for your body. Take care.

[@keniapc4691]

Is so nice to see you smile and excited 😃 The “Can’t wait to be fat” made me laugh 😆 God Bless You hermosa(beautiful in Spanish) 😘

[@AMBELLINA_X]

YOUR SKIN LOOKS SO MUCH BRIGHTER! I can imagine the Lipton tea being good for nausea! xx

[@copingwithbehcets]

Seeing you up and standing is phenomenal!!!! You'll get back into classes next semester, and you'll feel worlds better, too. I'm glad that this option was available.

[@BannerThePonyboxer]

You look like a different person already, your skin looks pinker and I can just see the energy you've gotten! If this is a few days in, imagine what you'll be like further down the line! Super happy that you're getting the help you need now (even if it's sad that it had to get so bad, and have such serious measures) Fingers crossed for discharge 🤞🏻🤞🏻🤞🏻

[@Rubyrubefan316]

RIP Amy we all miss you and you inspired me so much bc I also been on my TPN frequently and I also have a ngt and u inspired me so much to not be scared about it I love you so much angel

[@rheagalarneau1366]

I like to see you celebrating the small victories.

[@lillyzilli7379]

Best homework ever is to watch a show!!

[@samboling8339]

You look like you're feeling so much better! Malnutrition doesn't just make us feel physically tired, but mentally too! You've got this!

[@clairestephens4916]

Oh Bless Her Heart, I know having to chew your food and spit it out must've sucked. I understand you do what you gotta do but she went through so much, needle sticks, seizures etc.....& still couldn't enjoy a meal properly. RIP Dear Sweet Soul Amy--- Random Trivia: Amy was born on the exact day when here in America I was undergoing an IUI (Intra-Unterine Insemenation) that resulted in the birth of my twins. So Amy was born the day my babies were conceived.

[@colbaltbl]

You've got a good guy there.

[@amyslife4457]

colbaltbl yes I do he’s amaizng!

[@lizverde4309]

So glad you are wearing a smile. Your vibes are magnanimous. Take one day at a time. Love to your family. They are the best. Keep us updated.

[@HollyGrace90]

I think you should name the something so random like Steven or Patrick. Patrick the pole 😂😂. You're doing amazingly well Amy and taking it all in your stride as you usually do. I cannot wait to see you looking more healthy and let's keep this energy level up too. You rock! Much love as always beautiful girl. Xx

[@aleiatruman1012]

Your colour looks so much better! So glad you’re feeling better! Sending lots of love your way! I can’t wait for fat Amy! 💕💕💕

[@robinlodge7081]

You look like your feeling so much better. I’m glad that the tpn is working. I went through this same thing a few years ago and tpn saved my life. Now I’m able to run my feeds through my jtube. I hope everything goes smoothly so you can fully enjoy life again

[@cassiew4462]

Honestly from a parent to u my son has been on tpn his whole life and he is button fed .. he is on tpn for 16 hours and his feed for 16 hours .. the only thing i would say is it will take over your life dressing changes .. random spiking of temps we are in for atleast 4 days until cultures are back if you have a temp of 38.4 its the sepsis protocol its a headache but jeezzeee does tpn put weight on . My sons got short bowel syndrome he has 10cm on small bowel he spent 17 months in the royal london .. the only thing i will say is if your on it long term it will damage your liver my sons liver is so badly scarred its shocking .. its all about making sure you have one dirty hand that touches everything and one sterile hand that holds the line and doesnt leave it until the dressing is going on i dont no if u will be doing your own dressings or a community nurse will . It took us 3 months to be trained for our son

[@christienbbrooks7334]

I’m so glad that you are doing better. When you talked about how you had kind of forgotten what having energy and you feel “normal “ , I totally get that, My health has decided to go downhill fast over the last few months, I totally get what you are talking about . I’m really happy for you !!

[@crazylady2902]

Congrats on the weight gain! So exciting to see you starting to feel better and finally get the help you've been asking for m😁

[@Undercover_Pineapple]

Pole-y McPoleFace?! 😂 So glad you're making progress!!!! It makes me very happy to see you smiling! 😍😊

[@mercysanders546]

This smile ! You look se happy ! And look at your lips ! There are so red ! I am pretty sure everyone here is happy to see you like that ! You really deserve to feel better !

[@ChurchillCaneCorso]

I'm so proud of you.. Your so brave!! Keep getting stronger Amy.. We love you! ❤❤❤❤

[@jasminechloe1057]

Amy i can already tell how brighter you are becoming, it excites me to see what your future is going to become and where life is going to lead you since you are really starting to LIVE! xx

[@amyslife4457]

Jasmine Chloe I honestly can’t wait to actually start LIVING! I’ve been starving for so long

[@PumpkinSpiceLittle]

I’m so glad to see you are feeling and looking so much better. I know it’s not what you wanted but it seems like it’s a necessary evil ❤️ you show such positivity and strength and just take everything as it comes. You go girl 💪 xx

[@rachsl]

So glad ur starting to feel the benefits of TPN so fast. Really hope u manage to get home this week and enjoy Halloween

[@rachelchristensen9326]

Tom was hilarious with his presentation! Good job mate! :-) Hang in there Amy, just remember you are starting to feel better and it will make you survive summer a lot better - well you know what I mean... 🦋🧚🏻‍♀️🤪

[@dannyleeds1132]

So great to see you with such energy and happy . I’m in hospital in Leeds as I’m watching you . Got uro sepsis , yuk ! Lots of love xxxx Daniel

[@karlafielding1200]

You are positively glowing.. I know tpn isn’t what you wanted. But your whole aura has changed. Positive, happy, amazing times ahead ❤️ Sending love from us 3 xx

[@Woodman-jl6kw]

You are an amazing person. Your attitude and personality are uplifting. Best wishes from Texas, USA

[@GuardNinja250]

So glad your recovering dear!

[@alysonjade2461]

I’m so glad you’re feeling stronger and that you’ve gained a bit of weight!!! I can’t wait to see where TPN takes you!!! Keep that beautiful smile on your face!!!

[@Fowlersyndrome]

How many Calories do you have in your TPN? I started off with 2,800 calories in each TPN bag (that was back in May 2012), but I’m now down to just 1,200 calories and I’m on TPN 7 nights a week (I used to have 1 night off a week which was awesome as it gave me a break from TPN and enabled me to be myself for 24hrs). Do you have all lipid bags of TPN, or a mix of lipids and non lipids? It’s so frustrating seeing you having to buy all your own equipment, as in the UK as you know, we get all our TPN supplies & equipment on the NHS. It’s awesome to see how excited you got gaining weight, honestly this takes me back to 2012 when I was like you in that I was so devastated seeing how I looked, the bones sticking out, seeing every rib bone and hip bones etc. I hated how I looked, but when I started gaining weight I cried tears of joy as just a few pounds of weight gain was the most amazing feeling, so I totally understand how you feel. It’s so awesome to see you look so much better, you will see such a difference over the next few months weight wise and energy etc. I’m so happy for you and sending you huge hugs 🤗 your way.

[@colormezebra2841]

Your TPN pump sounds like a scary creeky door. Perfect for Halloween. LOL. Love me some extreme sour patch kids. Nice thighs Tom, we love it. Lol, sorry not sorry.

[@darkbluematter1753]

POTS makes summer suck ☹️ I also find my POTS is much worse when I have a fever-even a small rise in body temp like to 99.5 or 100 really screws me up. Now you can soak up the fluids and the sun (hopefully your sun allergy clears up). 💧☀️😊

[@maddiefern1267]

It's not even summer yet in Australia and I'm already incapacitated ughhh

[@monicadahlin]

I wish I had your positivity when I got Anorexia, It was a real struggle and the worse part of it was that I didn’t want to get healthy because that meant I had to gain weight. I was just skin and bones, and almost died several times. I didn’t know then that I had EDS. I was sick in 5 years and only stayed alive because of the rules we have here that can make the doctors force a patient to stay in hospital for 4 weeks if he/she is a danger to herself. I got in that situation several times and totally spend almost a year in hospital. Finally I met a man an fell in love, then I gained a lot of weight in about a year and then I got pregnant with my first child. A few months after my daughter was born I struggled with my food intake, I lost a lot of weight but didn’t get too thin. I never threw up anything, I just didn’t eat. Now as an adult it feels really stupid...I mean why? Food is mostly good- right? So I’m glad you’re getting better Amy! I know how lousy the body works when it’s malnourished! All the best from Sweden 🇸🇪

[@lisabannon6620]

Omg I’m so excited that you are starting to have energy and starting to gain weight!! Yay!!!!

[@madvoice]

Great to see you smile! My vote goes to Nikolai for the pole because it's a Polish name 😂

[@Dreadzilla]

A lot of nurses are bad for not doing this, so just in case they didn’t tell you, make sure you wear gloves when you use the Oxivir wipes. They’re really bad for the skin! We have something similar in the hospitals here in Canada and so many of my colleagues grab them with bare hands and it makes me nervous! The other thing that makes me nervous is the idea of “gut rest” 😕 It makes me worry that the gut paralysis will worsen, but I don’t work in GI nursing so I could be completely wrong. It was just my first thought when you said it. It’s great to see you with more energy again! I’m looking forward to continue following your journey ☺️ Thank you for sharing your life with us xxx

[@rosemarrypolack5708]

You look so much better! Keep on livimg your best life!

[@91jjaaddee]

Put headphones into your iPad and listen to KZbin. I dont sleep well and the slightest noise keeps me up and I overthink everything at night so I listen to sleep meditation on KZbin at night at its so helpful

[@hollyrodgers1806]

I do this!

[@chadbivona3572]

I’m so glad you are getting better!!

[@ThreePlusKiyaLee]

So glad to see youre feeling better already! Im on 16hour tpn bc my sugars wouldn't stay up on 12. Its such a long day but would be worse off without it. Here's to going home!

[@Kiwi-ui3uk]

The difference in your energy is so cool to see Amy. Is the TPN going to cost you anything?

[@elleblu1774]

Nicky Star it’s free under Medicare in Australia

[@minaLeannecullinane]

It’s amazing how much happier you look ❤️💋

[@annalovetilly]

You should look into something called aquanet. When I had a double Lumen Hickman that was pretty much the best way to take a shower without wrapping myself in Saran Wrap

[@dakotanewcomb295]

Anna Finley also good if you wanna hold an updo for ages

[@Redroses-nv2gb]

wow. You look so much better on the TPN. Glad things are looking up for you.

[@souixaan]

i used to plan my showers for dressing changes so i could just go ahead and get it wet. so glad you have some energy back. x

[@kellycannon9796]

souixie - lol!!! Me too! I had an issue tho in that due to the high fevers, I’d get horrible night sweats so some weeks the poor nurses had to come out 4 or 5 times to change the dressing!! Haha!

[@marieked]

souixie you aren’t supposed to get Hickman wet, the dressing must remain at all times. It’s not like a port you deaccess from.

[@souixaan]

I was just following my nurses instructions.

[@nicholasgarcia5914]

I seriously thought I was the only person who chewed and spat my food out on TPN haha. It’s so gross but somehow super comforting to feel like you’re eating!

[@maryreynolds5310]

Woohoo girl on your weight gain! I know, when I was on tpn a few months back, I hated that sound! Keep up the good work, love you xo

[@penelopepolinsneemeyer4757]

That TPN is magic stuff, Amy cariad! What a difference xxxxx

[@darkangelaljjohn8064]

I am glad you are feeling better. And hopefully you can go home soon. ❤️

[@haleycox94]

Love tom- he makes me laugh every time

[@alyssawssinging4039]

Hey Amy I had 3 surgery’s on my feet I know what it’s like lol to be woken up a lot I had coalitions in both my feet they both had to be reconstructed and I have gastroparesis and acid reflux and Austim and gastritisis and fibromyalgia

[@SteeleHeater]

It must be called Rolley Poley XD

[@terriclark1659]

TPN I'm not sure how expensive the medication is where you're at in America a bag of that TPN it runs about $600 a day that will get you healthy quick that is the good. stuff.

[@amyslife4457]

Terri Clark it’s around $1400 a week so pretty dam expensive x

[@libbysjournal]

Hugs 🤗 I hope you System better today.

[@cleoh666]

I love the show Broadchurch!

[@katekate555]

Broadchurch is amazing! You need to see it :D

[@eFoobar]

I remember having NIGHTMARES when I had two pumps running at different rates.... I was dreaming that they were talking to each other, like arguing back and forth... it was SO unsettling.

[@cakabre97]

No one deserves to go through this type of thing in their life.... Keep fighting 😍

[@lauraswanson1134]

Why do you use cathaders

[@stephaniesands4804]

Polly the pole :,) you look so much better already and im glad to see you actually seeming happy, you really do deserve it beautiful. Tom is a bae bless him so glad you have him xxx

[@debiargust6596]

Love Broadchurch!

[@toriprice9380]

yay! so happy for you!

[@guardiansanimalrescuestate7289]

Feel better soon. How do U eat food?? I can’t eat any at all without extreme vomiting and stomach pain for hours and hours. Although I have a NG tube so it’s being moved to a GJ button. But I’m trying to get all the info I can have.

[@mandya7426]

How come you chew and spit? What happens if you swallow by mistake?

[@carolinegerlach1644]

Mandy A she has Gastroparesis, her stomach is paralyzed. If she swallowed food she would vomit it back up.

[@immortalvelociraptor7810]

When I was super low on potassium they made me drink tiny batches of it. I assume it’s like an edible version cause they make you drink it. I had and IV so i have no idea why they didn’t give it to me that way. It was the worst tasting thing I ever had. I would almost immediately throw it up and it was horrible.

[@dona4him942]

I have a suggestion for that annoying pump! Earplugs! That was the best I could come up with. ; ) xoxoxo

[@MeganSmithers]

Broadchurch is SO GOOD.

[@MOJORAPSCALLION]

Peppa Pole! It’s white & black like black & wht pepper! :) 🤣

[@lilmeowmeow6784]

New subscriber here, so I'm sorry if you've already answered this before. I know you can't eat so you chew and spit. Is it the same for liquids? Meaning can you swallow them, or do you have to spit that out too?

[@amyslife4457]

Shelbie Atwood I can swallow liquids because I can drain it out my feeding tube it’s only the solid food I need to spit because it blocks my tube if I try to drain solids xx

[@lilbritt4403]

Should name it “Amy Poehler” #ParksAndRecreation 🤣

[@bobbi5355]

Wait does she not live in the UK?

[@dagnyscott6190]

Love seeing you smile!!!! When I was in the hospital as a child my IV was named Charlie lol. Even to this day I still call them Charlie lol! When I had my daughter and had to go to the bathroom. I would say come on Charlie! Time for a walk! Then I get funny looks from the nurse 😆

[@honeysandhusandhu8552]

I live in England😎😎😎🙂😎😎😎🙂😎😎😎🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂😎🙂🤗🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂😏🙂😏🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🤗🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂🙂💎💎💎💎💎💎💎💎💎💎💎💎💎💎💎💎💎💎💎💎💎💎💎💎💎💎💎💎

[@sage-mareemandich156]

Sorry, you probably already explained it, but what is the TPN?

[@simplesmeerkat39]

I hope you get a quieter pump for home!

[@yvonneouillette4987]

Where are you from.

[@sherryl1275]

I'm not sure I have no idea on this disease so question is...could u not chew an swollen the tiniest bits with ur chew in spit.?...maybe to try an train the belly or introduce some foods back to ur digestion ??? Or No?? Absolutely no foods ever again??

[@lainielou9331]

Sherry L gastroparesis makes its so your GI system has low motility and is unable to digest some or most foods depending on the case. Amy also has EDS which contributes to decline in GI health. So I mean I'm not Amy but once you get to a certain point you most likely won't be able to tolerate solid food again. I mean nothing is definite, I'm sure Amy will probably be able to go back to eating and draining once things get under control but I hope that helps lol.

[@copingwithbehcets]

With gastroparesis, you also don't always empty your acid either. So you're literally filling up with acid as your gut produces it. On bad days, I just vomit bile, because my gut is still producing acid, but some days I can't empty it through my GI track. I was quite severe for a while, and near the NJ point, but we were able to stabilize me with some medications. I'm always afraid I'll get back there, but all I can do is try my best to care for my body as it changes with my illness :)

[@GuardNinja250]

I vote for Paulina for the pole!!!

[@aleiatruman1012]

Paul the pole?

[@shekeyra100]

will you of lost the money you had pay for college it was alot

[@amyslife4457]

Lisaa yes 😫 I’m hoping to try and get some back but I’ll have to start saving again 😅

[@shekeyra100]

@@amyslife4457 you would think they would allow you to take course next year with the money you paid or at least give a partial payment back cause we know they wont give full even though you have medical reasons why its unfair they know your medical/health issues its wrong that they wont allow the fee to be used for next years course fingers crossed you get at least half back xx

[@jadah6232]

Hi

[@jkfredette]

Is your sister okay?

[@debbiesanderson9466]

Maypole.....very English but you could dance around it !!

[@janiskanal5477]

What is tpn?

[@zyciewusatvbygosia8880]

Glad you getting energy back, wish you all the good things, btw I also ask my bf do you love me heheheh

[@heatherrowles2580]

Thats a spin out, youre in the same room I was in for 3 weeks......I recognise the view from the window.

[@cryssiortiz6977]

Love the sour patch kids!!! #priorities

[@ChaiLatte13]

Sad to say that I chewed and spit when I was anorexic.

[@kellycannon9796]

vote4freedom - yup....me too. It’s soooo dangerous. I don’t know if it’s not as dangerous for Amy??

[@marieked]

Kelly Cannon no, for her it’s bc she cannot digest the food at all, so it’s not like she’s restricting on purpose to not gain weight.

[@jessicahoward9046]

vote4freedom *raises hand* same here with my ednos

[@kaylahensley9709]

It almost made me laugh when she said that people didn’t understand what chewing and spitting is. Then I remembered that not everyone has a bad relationship with food. I knew exactly what it was from my Osfed/Ednos.

[@pixie9499]

Honestly same, but she seems of perfectly sound mind and mentions hating the way she looks so I was confused as well bc I’m like “oh wait that’s not a normal thing” lol you just forget that most people have a normal relationship with food

[@eduardopadilla5505]

So you want to be fat eh? Excellent!! I loved to see your big smile!! :D Keep on your way and Dont Forget to Laugh No Matter What!!!! XD

[@InvisibleVicky]

Can you not swallow anything?

[@dizzycowuk]

I did wonder what that noise was.

[@irislemordan889]

Broadchurch is not depressing :'( it's just sad but the actors are so good and. seriously. David Tennant.

[@DivingIsMyLIfe1]

Maybe im out of the loop but why do you have to chew and spit?

[@rnshi]

She cannot eat or digest food by mouth so she chews and spits just to have flavor and sensation of eating. TPN is needed because she cannot digest food through the digestive system.

[@Camzwinget]

Then why does she get food from the hospital? She can’t eat soft foods.

[@johannarrae]

Daisy Lop she chews and spits the hospital food too