She passed just before my birthday (I found out the morning of my birthday) I have the same conditions and I used to play her videos while I was doing mown stuff so like I put my feed away while she unpacked hers and stuff… was like having a companion… she was so good at making this so much less horrible… I know I for sure am not the only one… I can’t even imagine how it must be for her family and friends… I can’t imagine… this is the first time I’ve been able to face watching since… still choke up… still think about her every few weeks (each time for a few days) I’m glad her channel was left public so many people need her story and many more to come will too… what a beautiful soul she is. I’m glad you’re free from the pain, the suffering, the meds and the trauma these conditions can bring. Be at peace be free. 💜
My son is 10 months old and he just got his g-tube put in. Your videos have seriously helped not only educate and show how to properly do everything it has made me feel tons better about knowing how to take care of him and his new needs. Hes had 2 open heart surgeries already and has 1-2 more to go. Weve been in the hospital for 92 days and finally get to go home today. Just wanted to say thank you for sharing your story and helping so many people learn what it's like.
God bless you guys he’s going to grow to be a strong person not only because of his struggles, but also because of you standing beside him through them.
I work as a patient services representative for an IV pharmacy here in the U.S. We’re closed door so everything pertaining to setting up deliveries is done over the phone. We send out antibiotics, chemo, etc, but the patients I am responsible for are all on TPN. I knew nothing about it before starting this job and of course I don’t get to see any of my patients in person. I’m not even sure how I came across your channel, but it is so informative! It’s very cool to me that I am actually getting a true visual of what my patients do everyday! Talking about it, seeing the bags and supplies and all is good, but nothing like seeing it in action. Thank you so much for making these videos!
I know you were really nervous about filming this, but you guys did such a great job! The fact that you and Tom have taken it on yourselves to learn all this and be responsible for your own care is so impressive to me. Proud of you both!
Amy, I just wanted to give you a quick tip. I’m an EMT in the states. We use the same TB wipes you use. Just be careful since you use these daily. I’ve been told that touching them often can be harmful to your liver because of the chemicals in them. It would be a good idea to just use a glove when handling them since you use them so often. It’s not something that’s bad short term to touch, but over time it can damage your liver. I hope this isn’t taken as me trying to tell you what to do, I just wanted to let you know! :) love your videos!
@@amyleefisher52 hello amy I love seeing your videos and this is great information to know in the future and question do you text people on their Instagram? I wanted to ask you something idk if you reply back?
@Phil & Claire Sandercock Maybe look into Vecttor Therapy System with Dr. Rhodes in Woodlands TX to see if his machine can help your nerve. Google it and call him for consult.
Michaela C nothing has ever summed up having a partner more tbh. My partner asks for attention sometimes the same way his dog does, by hitting you and then pushing you until you pet them. Adults are just large children especially when in love 😂
It is really concerning the lack of proper knowledge/guidance that is exhibited in this video. Central venous access should not be utilized by improperly taught amateurs. You explained that the inside of the sterile field should not be touched, but then 30 seconds later Tom drops the contaminated yellow forceps he just handled directly onto the sterile field, therefor breaking the sterility barrier. You are also narrating loudly to the camera without any kind of surgical mask on while standing right over the open sterile field. In a proper Emergency Department room/operating theatre you are technically not supposed to enter without a surgical mask after the sterile field has been opened, much less TALK right over it! Sorry if I come off rude, it’s not your fault, it is the fault of your so called TPN team, any infectious disease physician consulting on your case, and ultimately the fault of your attending gastroenterologist.
@@DaddieofTwins The outer 1 inch to 1.5 inches of a sterile field is considered dirty and is a place where outside items can be placed. She is also not talking directly over the sterile field, and some talking is allowed. What's more, home care is different than a hospital (I am a nurse working in home care). Her technique is excellent and better than even I can achieve in a home setting. Leave her alone.
veevee306 she’s also done this a million times and hasn’t had an infection yet. She must be doing something right. Homecare nurse here too and it’s definitely different from a hospital. Most houses are a lot cleaner than the average emergency room.
Plopping is definitely interesting to see, but it is the is the best method to get sterile material out of non sterile packaging. The packaging is exposed to the outside world, but the material inside is not and by “plopping” you are getting the material out of the packaging without allowing the materials to be contaminated (hope that makes sense). I worked at a veterinary technician for two years and frequently did shifts in our surgery suite. It’s just the best way to get everything needed for procedure out and ready for your doctors, or in this case Amy and Tom, before you get started.
Love your videos, I am a nurse and I work in neurology, we use those same wipes and I would recommend wearing gloves before using them, they have some pretty irritating chemical in them. Your procedure for starting youTPN was sooooo clean, some people do not take such care to do all that is needed. Thank you for the videos!!
I’m a student MA & watching your videos has helped me so much! You do a fantastic job maintaining sterile procedure in a home environment. So happy to see you where you are now after so many trials to find what works for you & your health. Thanks for sharing, Amy. ♥️
Our TPN comes unmixed, as in the lipids are still separated from the vitamin/mineral section and we undo this part on the bag to mix them. As some days we don’t use the lipids. And ours aren’t protected from light. Interesting to see the differences. Great video!
You guys did a great job showing and explaining everything... Thank you you for sharing this with all of us. You guys do it exactly how I do mine but I have a port... I am so happy that you are doing so amazing on TPN you are definitely thriving a lot more now that you are getting the proper amount of nutrition... Can't wait to see more videos of your medical storage and whatever else you and Tom want to share. I love being able to see how other people do all the home medical stuff. I always get great ideas on how to organize... It also makes me feel more normal and like I'm not the only person having to do all of this to keep my body going!!! Love your channel sending you lots of hugs and love from Oregon!!!
I'm not quite sure why I was recommended her videos but I love her energy. Bless her beautiful soul for showing her life. May she rest in peace beautiful sweet girl. 💕
This is not an easy life you live everyday . But you are lucky in so many ways. Not only are you living in a time when there are treatments for your conditions, but you have also found someone who is willing to go through everything with you. This is not a life that anyone should have to live, but from the few videos I have watched you seem to have a great attitude about you condition. And I think that helps a lot. I look forward to watching more of your medical journey.
I honestly think you're amazingly strong. I have EDS though im on the milder side, its more pain & subluxations than anything. I couldn't imagine having a main line, I have panic attacks over a basic IV setup, the idea that there is direct access to my veins isnt something i can handle personally. I really respect you and think your openness is amazing and incredibly helpful to people. Sending lots of love your way.
Thank you so much for sharing Amy!!! I know you were afraid to show you setting up your TPN, but it’s so incredibly interesting and I really love these almost “behind the scenes” style videos. Love you girl!!!
I do housekeeping at a hospital, we use the Oxyvir TB wipes to clean everything(except C. diff) since it has a very fast kill time and kills pretty much anything- bacteria, viruses, fungus, etc.
Hi All, I came across this as I have had a Central Line fitted this week. So sorry to hear of Amy's loss. This video has really helped me though. My sister has a paralysed stomach and now I have had a peek into her daily life. Love to Tom and you all.
I've been watching your videos for a while as someone with chronic illness but I'm also a nursing student, and I've just started my module on nutrition. So of course we look at parenteral and enteral nutrition and I've never so quickly known what two medical words meant. I'm so glad you allow your followers, including me, to follow your journey and become educated on something I quite frankly had no idea about before watching your videos. I am grateful to learn from the people dealing with these illnesses personally rather than just a textbook definition, so thank you. ❤
Modern medicine is so amazing , I love learning about all this and of course your the best teacher I love watching you, I could watch you explain anything and be happy listening.
I’m living for this new content. I know you’ve always done videos like this but your so good at explaining things. I’ve learnt so many medical things from you. My medical condition is completely different then mine but I still like to be aware of all other situations etc but I’m really looking forward to your content maturing.
I will never not watch your videos in complete awe of you. I know you are only doing what you are used to and what you know but damn it I have to say that you are absolutely amazing! XOXO from Newtown, CT.
I legit just love you hahaha. I can't stop watching your vlogs and main channel videos because they literally just interest me so much on a topic I had no idea about! I love your personality and seeing what you get up to in your daily life! xx
Thank you so much for this video! I am working in TPN for almost 1,5 year and I feel that my job really makes a difference. Really good aseptic technique 🤗
Watching your videos make me feel so guilty about complaining that I have to take medication, when I take them I will think of you, you’re such a strong girl 🥰
My daughter was asking about someone with a tpn, this was super helpful in educating both of us on how to works. Shes 8 and this made it alot easier for her to visualize what her grandma was telling her. Thanks! Be well!
This has been a great help Amy. I’m learning home TPN for my mum at Fiona Stanley and it’s been nerve racking. I’ve followed you a while now and watched this video ages ago so it was great to remember and go back to it. I feel a little more confident now. Thank you x
I am living in germany and this is so insane for me to watch how you are doing so much stuff at home where I was thinking you can only do it in a hospital. You are such a strong woman!!!! I cant imagen how expensiv a life like this must be. Wish you all the luck of the world! ♥
The handwashing footage reminded me of how the show surgeons washing their hands on tv; don't know if surgeons really do i that way or not though. Also I really like videos like this; I have a lot of medical crap (although nothing resembling what you do) so I watching your channel and others like it makes me feel less alone. Sorry if I've said all that before; my memory sucks
That's a lot like the port a cath they use for cancer. It goes in the biggest vein under the shoulder directly to the heart. Mine hung out like that but, there are ones that are up under the skin.
I was on TPN for about 6 weeks and I called it Totally Posh Nosh! 😂 I had a mid line in my arm because having been fed through my wrist was absolute agony. Now am back to peg feeding and eating small amounts.
I came across your channel and wanted to let you know that I admire you for being such a strong positive beautiful young lady. I pray that God may give you the strength you need to overcome anything because in your videos I've seen its not easy. You will be in my prayers God bless you beautiful 😊😇❤
I don’t really have much of a reason for this, but Amy’s channel and this video in particular have always been one of my go tos on CZcams. I’ve loved being able to watch any though her journey, and I hope that she is able to rest easy knowing she impacted so many lives. Rest In Peace Amy
I love your videos! I have also had a Gastric tube before when I was a baby till junior high school. Watching your videos bring back memories of me putting my pedicure together before going to bed with pedicure running through the night, and with changing my dressing pad around the G-tube button. Love your videos:) love from the states ❤️💙
I'm so glad youtube put this in my suggested videos.I've binged watch some of her vids.I've had Crohns for just under 30 years and it's gotten pretty bad at times over the years.Watching this woman with such a pleasant And self depricading at times is awesome.Ms Fisher you are great and remind me alot of people deal with such worse things than I do.You are an incredible woman.Thank you for sharing your life.
I have had a g-tube for almost my entire childhood, It's probably one of the worst things that I was required to have, I can't believe you have 2 tubes going into your body, you are an incredibly strong person.I hate to see good people go through all this suffering, I hope life gets better for you I really do.
Since the start of 2021 i've been living on TPN myself. Watching this video made me feel less alone in this world. When I realised she passed away, my heart got broken.. I hope she is in a good place, and does not have to suffer anymore.
Hey! I've just found your channel and I think you're amazing! I have had a heart transplant and used to be on TPN when I was waiting for my heart. I also had a NG and NJ tubes and what not so I recognise the struggle haha. Luckily I don't have to use them anymore but I think you're amazing for carrying on so well despite having to use them still. I also have a channel documenting my life as a double transplant patient! Anyway, just wanted to say I think you're gorgeous, determined and an absolute star! I'm subscribed! xxx
As someone who has suffered from OCD this would be a nightmare for me honestly. Everything needs to be sterile, every time you touch something outside of the field you're now contaminated and need to use hand sanitizer, if everything isn't 100% sterile you're going to get an infection and die, it's literally all of my worst fears made a reality.
Hi, Amy! I know you’re very educated on hygiene and use gloves frequently. I would recommend using gloves when using the Sani-cloth wipes. In rare cases it does cause health problems with your liver and other things you could imagine. Just a safety tip! I always make sure I’m gloved up before touching them!
If we are talking about environmental impact the the plastic as well. But she needs to be this sterile, and she needs everything in plastic containers, and she neeeeds to empty a river to ensure she lives.
I used to do home TPN. Do you have the fats and lipids every night? I only did that a few nights a week and other nights I had clear bags with only vitamins and minerals. I used to have to inject some extra stuff into the lipid bags. Isn't your chest cold if you use it straight from the fridge, I used to leave mine for a couple of hours to take the chill off 😊 Really interesting to see how someone else does their home TPN, great video.
Oh my, I'm early! I love your channel and I feel so educated and blessed to have someone like you on CZcams to share your stories with us all. Thank you and blessings!
The more I rewatch these videos I just get so frustrated that she did not survive. She would have been a wonderful mother if given the chance, her and Tom deserved to have that life. I can’t even imagine what he and her family are going through. It’s an awful loss, she was so bright with so much to give the world. I complain when I have a headache, this girl made CZcams’s videos to educate others on EDS with tubes from top to bottom and barely complained.
You are lovely! I'm a nursing student and it was such an informative video💙 A tip: When you drop the utensils unto the sterile field make sure nothing is below your waist [Meaning the table, etc.] Because when it goes lower than your waist it is considered unsterile. I hope this helps💙😊
I enjoyed watching your video very much, I work for a home infusion closed door pharmacy. I am a certified infusion technician, I mix many TPNs daily as well as many other IVs and I love what I do. So glad to see your video help others to not feel so overwhelmed. God bless you and your health.
These videos are very educational and inspirational! You’re such a wonderful person, I would also love to see daily life vlogs or updated daily routines as well ❤️
Amy thank you don’t know how your video came up. But your an inspiration I have an autoimmune disease I thank you so much for posting. My days can be tough but not like yours yours you might have saved someone’s life thank you so much
Have you heard of swab caps? I use them when my lines not in use. They are little caps that go on the end of your line. They are filled with alcohol swab to help keep the end of your line clean. If you had these you wouldn’t need to keep the end of your line outside you shirt.
Why would you have to keep the end of your line outside of your shirt though? I have a port and mine stays tucked under. My insurance doesn't pay for swab caps and I can't afford them just out of pocket. No issues keeping my line under my shirt lol I've had my port 2 years.
@@Snickerdoods.x that's what Amy was taught when she first got the line. She was taught that if she was keeping it inside her top it would attract more bacteria off her body such as from sweat. That's just what she was taught in the area she lives in. Every area teach different things.
Tom is a good man. I’m sorry you need to go through so much careful preparation just to feed yourself properly. I’m proud of your positive attitude and taking very good care of your health. You are an inspiration.
It must be really hard to be going through what you deal with everyday of your life. I honestly feel so bad for you. Being at a very young age, and dealing with your everyday situations, and routines must be difficult. You keep on fighting girl! you've got this!
That was an awesome video and I think you were really thorough and detailed in what you showed. I had to watch in two bit but only because I have like zip concentration, but I was able to remember what you'd shown first which demonstrates your thoroughness. xoxoxo
Reth Tard lol those are just the minute amounts of other vitamins and minerals that an adult would need for a healthy life, like copper, manganese, zinc, etc. They’re only needed in such small amounts that they get grouped together at the end of the list.
@@Ctldchaotic Thank you for this, I really didn't know what it was supposed to mean. So there is absolutely no trace of adults inside it, you are sure? :P
I live in an apartment and don’t have room for a large garden. Last spring, I planted 1 cucumber plant, 1 squash plant, some tomatoes, and and sunflowers. I poured left over tpn on it 2 times a week and Was shocked at how big everything grew!
I am from the states. My set up is similar. The differences are - we use the sterile gloves that you mentioned and not the foam cleanser, I have to add additional vitamins and medications into my TPN bag, they didn’t teach us to pull back and get blood, I let mine sit at room temperature for 4 hours so it’s not so cold when going in, I don’t have a protective bag from the light, and lastly my TPN runs for 16 hours a day. Oh and I don’t have a pole. Mine stays in a backpack. It’s so interesting seeing all of the differences. I’ve seen it mentioned before, but you don’t use a cap at the end of your Hickman line. Did they use them in the hospital and you just don’t have them at home or do y’all just not have them where you live? If all goes well I’ll be stopping my TPN in a couple of weeks. I could mail you all of my extras. They stay sterile until you pull a tab off so they would be safe.
Marie Lau the reason we are taught not to draw back for blood is that every time blood enters the line, it has the potential to cause nasty infections. It seems like everyone has different rules regarding this. I love that Amy just says this is what I was taught...it’s always best to follow our docs guidelines.
Thanks for showing a home TPN set up! I have given TPN in a hospital (I'm an RN) but have not seen it at home. It always looks scary at first because of the central line access and filters, but it is really just a more time-consuming infusion to set up. My TPN sets in the hospital have nutrients and lipids hung separately; many of my patients had midline access with multiple ports.
I miss your videos Amy I don't comment much but I am so sorry to your family and friends you were an inspiration to everyone that seen your videos even though I don't have an illness like that I still was inspired by your videos rest in peace Amy
I have exactly the same! I’m in Liverpool but I’m not as open and visual with mine. I also the 2000ml bags of Hartman’s fluid! U do know it’s not a great idea to have your Hickman/central line hanging out like that it’s more safe to keep it tucked away. U may catch it and risk tugging or it being dislodged! Don’t u have to hang your feed up? I was told to hang it 2 hrs before use to reduce air bubbles and allow it to reach a higher temp?! I have 2 stomas rather than feeding tube. But it’s interesting to see how others are regarding their lines/feed etc.
Lisa Sallery regarding my line I’m only following protocol. I’m meant to have it hanging out rather than tucked away in my top (where it gets hot and sweaty, and that’s perfect breeding ground for bacteria) I know it’s different depending on where you live but I’m just doing things the way I was taught and via my hospitals protocol xxx
Amy Lee Fisher it’s weird seeing how different people do there line. I guess cos my line is used daily, here we think about risk of it pulling which mud me shudder at the thought. Wudnt it be more your site entrance that would get hot and sweat as u r constant flushing it? We wrap the ends here too with sterile gauze to prevent contamination. Well good luck xx
@@lisasallery7860 Mine is the same, We keep mine wrapped in sterile gauze and taped with Mefix to my chest. Im so worried about mine getting pulled out as it happened to my old one in October! It was an accident but I dont want to have to have it replaced again, it was not nice the first time I had mine placed =(
wow! you do a really good job with making sure you are not getting germs in your central line, you do better than most nurses- cause i am one :) the only thing i would suggest is putting gloves on your hands when touching the cavi wipes (purple wipes we call them at work). i worked with a girl who got cancer because she kept touching the things (purple wipes) with her bare hands (at least that is what they are suspecting). all the hospitals use them in the U.S. i would love to have you as a patient because you do all the work. :) blessings to you my friend!
errnac, that makes me so angry. More nurses NEED to treat all central lines like it is the patients life line that goes to their heart...cause it is & does! We had so many careless nurses in the hospital & he was one line infection after another, which nearly killed him. Fast forward to another hospital & eventually home where I did all his care. He didn’t have one single infection after leaving the first hospital.
I had to have tpn for a perforated colon. Was very sick. I HATED the stuff!!! It smelled like cotton candy..in my mouth, my hair..it seemed to be coming out my pores! I was very nauseated from about 3 iv antibiotics, which didn't help. Hope I never need it again. I was told it is "pre-digested protein"...yum
Rest in peace Amy! You will forever live on in your videos and we all will cherish these memories forever
She was my favorite CZcamsr I snapped her on Snapchat and she responded with hearts 💕 I love you Amy
My grandfather is up there with her he passed away last month at 80 years old he was born in March and died September 8th this year
RIP Amy. You had a long difficult battle and fought bravely. You are missed.💖
Rest in peace
She passed just before my birthday (I found out the morning of my birthday) I have the same conditions and I used to play her videos while I was doing mown stuff so like I put my feed away while she unpacked hers and stuff… was like having a companion… she was so good at making this so much less horrible… I know I for sure am not the only one… I can’t even imagine how it must be for her family and friends… I can’t imagine… this is the first time I’ve been able to face watching since… still choke up… still think about her every few weeks (each time for a few days) I’m glad her channel was left public so many people need her story and many more to come will too… what a beautiful soul she is. I’m glad you’re free from the pain, the suffering, the meds and the trauma these conditions can bring. Be at peace be free. 💜
My son is 10 months old and he just got his g-tube put in. Your videos have seriously helped not only educate and show how to properly do everything it has made me feel tons better about knowing how to take care of him and his new needs. Hes had 2 open heart surgeries already and has 1-2 more to go. Weve been in the hospital for 92 days and finally get to go home today. Just wanted to say thank you for sharing your story and helping so many people learn what it's like.
MaKayla Montgomery Healing thoughts and hugs coming your way!
Poor baby boy, I hope life gets easier. I can’t even imagine how hard that has to be ❤️
God bless you guys he’s going to grow to be a strong person not only because of his struggles, but also because of you standing beside him through them.
Sending all prayers for your son ❤️
I have a chder with a gtube too. If you ever want to chat hit me up. Our son lives a normal.life and thriving thanks to his gtube and food
I work as a patient services representative for an IV pharmacy here in the U.S. We’re closed door so everything pertaining to setting up deliveries is done over the phone. We send out antibiotics, chemo, etc, but the patients I am responsible for are all on TPN. I knew nothing about it before starting this job and of course I don’t get to see any of my patients in person. I’m not even sure how I came across your channel, but it is so informative! It’s very cool to me that I am actually getting a true visual of what my patients do everyday! Talking about it, seeing the bags and supplies and all is good, but nothing like seeing it in action. Thank you so much for making these videos!
Whitney Lambert your so welcome! Thank you for doing what you do! Because without you, people like me would be alive! So thanks ❤️❤️❤️
Amy Lee Fisher you mean wouldn’t be alive!
I know you were really nervous about filming this, but you guys did such a great job! The fact that you and Tom have taken it on yourselves to learn all this and be responsible for your own care is so impressive to me. Proud of you both!
DarkBlue Matter thank you ❤️❤️
Amy, I just wanted to give you a quick tip. I’m an EMT in the states. We use the same TB wipes you use. Just be careful since you use these daily. I’ve been told that touching them often can be harmful to your liver because of the chemicals in them. It would be a good idea to just use a glove when handling them since you use them so often. It’s not something that’s bad short term to touch, but over time it can damage your liver.
I hope this isn’t taken as me trying to tell you what to do, I just wanted to let you know! :) love your videos!
Mia thanks so much for letting me know! I will be sure to wear gloves from now on! ❤️🙏🏼
@@amyleefisher52 hello amy I love seeing your videos and this is great information to know in the future and question do you text people on their Instagram? I wanted to ask you something idk if you reply back?
Agreed!
Samantha Guerra & Miranda Nicholls if you on her instagram profile you’ll find that she does say she won’t answer personal messages.
@Phil & Claire Sandercock Maybe look into Vecttor Therapy System with Dr. Rhodes in Woodlands TX to see if his machine can help your nerve. Google it and call him for consult.
“You’d think I owned an animal but it’s just TOM” 😂😂😂 I love you guys 😆
Michaela C nothing has ever summed up having a partner more tbh. My partner asks for attention sometimes the same way his dog does, by hitting you and then pushing you until you pet them. Adults are just large children especially when in love 😂
😂😂😂😂😂
"Gotta maintain sterile field"
"Touches tweezers with hands and puts it back down on the sterile field, ruining the sterile field" lol
Tom: *plops supplies on sterile counter*
Amy: We carefully kind of put it on there.
Girl, I laughed so hard 😂 I don’t why I thought that was so funny.
Hah, yes, it looks funny when we just throw things into a sterile field, but it is the most efficient way to avoid contamination. :)
It is really concerning the lack of proper knowledge/guidance that is exhibited in this video. Central venous access should not be utilized by improperly taught amateurs. You explained that the inside of the sterile field should not be touched, but then 30 seconds later Tom drops the contaminated yellow forceps he just handled directly onto the sterile field, therefor breaking the sterility barrier. You are also narrating loudly to the camera without any kind of surgical mask on while standing right over the open sterile field. In a proper Emergency Department room/operating theatre you are technically not supposed to enter without a surgical mask after the sterile field has been opened, much less TALK right over it! Sorry if I come off rude, it’s not your fault, it is the fault of your so called TPN team, any infectious disease physician consulting on your case, and ultimately the fault of your attending gastroenterologist.
@@DaddieofTwins The outer 1 inch to 1.5 inches of a sterile field is considered dirty and is a place where outside items can be placed. She is also not talking directly over the sterile field, and some talking is allowed. What's more, home care is different than a hospital (I am a nurse working in home care). Her technique is excellent and better than even I can achieve in a home setting. Leave her alone.
veevee306 she’s also done this a million times and hasn’t had an infection yet. She must be doing something right. Homecare nurse here too and it’s definitely different from a hospital. Most houses are a lot cleaner than the average emergency room.
Plopping is definitely interesting to see, but it is the is the best method to get sterile material out of non sterile packaging. The packaging is exposed to the outside world, but the material inside is not and by “plopping” you are getting the material out of the packaging without allowing the materials to be contaminated (hope that makes sense). I worked at a veterinary technician for two years and frequently did shifts in our surgery suite. It’s just the best way to get everything needed for procedure out and ready for your doctors, or in this case Amy and Tom, before you get started.
Love your videos, I am a nurse and I work in neurology, we use those same wipes and I would recommend wearing gloves before using them, they have some pretty irritating chemical in them. Your procedure for starting youTPN was sooooo clean, some people do not take such care to do all that is needed. Thank you for the videos!!
I’m a student MA & watching your videos has helped me so much! You do a fantastic job maintaining sterile procedure in a home environment.
So happy to see you where you are now after so many trials to find what works for you & your health. Thanks for sharing, Amy. ♥️
Our TPN comes unmixed, as in the lipids are still separated from the vitamin/mineral section and we undo this part on the bag to mix them. As some days we don’t use the lipids. And ours aren’t protected from light. Interesting to see the differences. Great video!
I have SO much respect for you guys. I know this isn't even a fraction of what you deal with on a daily basis, but you handle it like a champ.
Wow as a registered nurse myself.... I'm so so so impressed with everything you just did.
“I’m not lying to you guys” I wish you were cause it would mean you are healthy! You hang in there darling ❤️
You guys did a great job showing and explaining everything...
Thank you you for sharing this with all of us. You guys do it exactly how I do mine but I have a port... I am so happy that you are doing so amazing on TPN you are definitely thriving a lot more now that you are getting the proper amount of nutrition... Can't wait to see more videos of your medical storage and whatever else you and Tom want to share. I love being able to see how other people do all the home medical stuff. I always get great ideas on how to organize... It also makes me feel more normal and like I'm not the only person having to do all of this to keep my body going!!! Love your channel sending you lots of hugs and love from Oregon!!!
HAHAHA! I accidently snorted when you said the meowing was tom
I'm not quite sure why I was recommended her videos but I love her energy. Bless her beautiful soul for showing her life. May she rest in peace beautiful sweet girl. 💕
This is not an easy life you live everyday . But you are lucky in so many ways. Not only are you living in a time when there are treatments for your conditions, but you have also found someone who is willing to go through everything with you. This is not a life that anyone should have to live, but from the few videos I have watched you seem to have a great attitude about you condition. And I think that helps a lot. I look forward to watching more of your medical journey.
Thank you for sharing this! I have been an RN for only a year, and I find this SO helpful, since TPN is something we don't see a lot of on our floor.
I honestly think you're amazingly strong. I have EDS though im on the milder side, its more pain & subluxations than anything. I couldn't imagine having a main line, I have panic attacks over a basic IV setup, the idea that there is direct access to my veins isnt something i can handle personally. I really respect you and think your openness is amazing and incredibly helpful to people. Sending lots of love your way.
Thank you so much for sharing Amy!!! I know you were afraid to show you setting up your TPN, but it’s so incredibly interesting and I really love these almost “behind the scenes” style videos. Love you girl!!!
I do housekeeping at a hospital, we use the Oxyvir TB wipes to clean everything(except C. diff) since it has a very fast kill time and kills pretty much anything- bacteria, viruses, fungus, etc.
Why not c diff? Please explain. I am interested in medical stuff!
Hi All, I came across this as I have had a Central Line fitted this week. So sorry to hear of Amy's loss. This video has really helped me though. My sister has a paralysed stomach and now I have had a peek into her daily life. Love to Tom and you all.
I've been watching your videos for a while as someone with chronic illness but I'm also a nursing student, and I've just started my module on nutrition. So of course we look at parenteral and enteral nutrition and I've never so quickly known what two medical words meant. I'm so glad you allow your followers, including me, to follow your journey and become educated on something I quite frankly had no idea about before watching your videos. I am grateful to learn from the people dealing with these illnesses personally rather than just a textbook definition, so thank you. ❤
I thank CZcams for showing you on my recommended list. ❤ I love how positive you are .
Modern medicine is so amazing , I love learning about all this and of course your the best teacher I love watching you, I could watch you explain anything and be happy listening.
He’s a whole damn nurse GO TOM!!! And GO YOU of course!!!
My little sister is seven and she has had a feeding tube her whole life and I have never watched a CZcamsr with one you are. amazing!!
@Elizabeth Michaels does she have one that goes into her stomach which is called a peg because if so my little sister has one as well
If you have a garden the left over TPN is wonderful for helping you garden grow
Thank you for sharing such personal parts of your life with the world. This will inspire and educate so many people. Keep on smiling!
I’m living for this new content. I know you’ve always done videos like this but your so good at explaining things. I’ve learnt so many medical things from you. My medical condition is completely different then mine but I still like to be aware of all other situations etc but I’m really looking forward to your content maturing.
I still watch all Amy’s videos , I always loved her and found these videos very relaxing . When I watch them I feel sad .
I will never not watch your videos in complete awe of you. I know you are only doing what you are used to and what you know but damn it I have to say that you are absolutely amazing! XOXO from Newtown, CT.
I legit just love you hahaha. I can't stop watching your vlogs and main channel videos because they literally just interest me so much on a topic I had no idea about! I love your personality and seeing what you get up to in your daily life! xx
You are such an amazing young lady!! You inspire me every time I watch your videos!! You’re in my prayers daily love 💕
You know now I understand why people get ill when they get weary of all this work or cant afford the supplies. I hope you keep your positive attitude
Thank you so much for this video! I am working in TPN for almost 1,5 year and I feel that my job really makes a difference. Really good aseptic technique 🤗
Watching your videos make me feel so guilty about complaining that I have to take medication, when I take them I will think of you, you’re such a strong girl 🥰
My daughter was asking about someone with a tpn, this was super helpful in educating both of us on how to works. Shes 8 and this made it alot easier for her to visualize what her grandma was telling her. Thanks! Be well!
Im so proud of youuu, you are really brave and intelligent!
Mavlo thank you ❤️❤️
This has been a great help Amy. I’m learning home TPN for my mum at Fiona Stanley and it’s been nerve racking. I’ve followed you a while now and watched this video ages ago so it was great to remember and go back to it. I feel a little more confident now. Thank you x
I am living in germany and this is so insane for me to watch how you are doing so much stuff at home where I was thinking you can only do it in a hospital. You are such a strong woman!!!! I cant imagen how expensiv a life like this must be. Wish you all the luck of the world! ♥
Amy such an informative video! So interesting. I can't believe how much preparation is needed. You and Tom work so well together. Good team!
The handwashing footage reminded me of how the show surgeons washing their hands on tv; don't know if surgeons really do i that way or not though. Also I really like videos like this; I have a lot of medical crap (although nothing resembling what you do) so I watching your channel and others like it makes me feel less alone. Sorry if I've said all that before; my memory sucks
Drew Harris this is the way nurses wash their hands. Surgeons do it very different.
That's a lot like the port a cath they use for cancer. It goes in the biggest vein under the shoulder directly to the heart. Mine hung out like that but, there are ones that are up under the skin.
I was on TPN for about 6 weeks and I called it Totally Posh Nosh! 😂
I had a mid line in my arm because having been fed through my wrist was absolute agony.
Now am back to peg feeding and eating small amounts.
Whenever i see you at you home it makes me so happy because it means you’re doing great xx love you lots
I came across your channel and wanted to let you know that I admire you for being such a strong positive beautiful young lady.
I pray that God may give you the strength you need to overcome anything because in your videos I've seen its not easy. You will be in my prayers
God bless you beautiful 😊😇❤
I love that you are using your illness to educate people and show people that it doesn’t define you.
I don’t really have much of a reason for this, but Amy’s channel and this video in particular have always been one of my go tos on CZcams. I’ve loved being able to watch any though her journey, and I hope that she is able to rest easy knowing she impacted so many lives. Rest In Peace Amy
I feel so bad for you girl, you have to do so much just to survive 😭 definitely not taking my luck for granted. God bless you ❤️
When Tom yawned behind the camera 🤣🤣
You are so strong! And doing such a great service to others who may be going through something similar. Glad to have run across your channel.
I love your videos! I have also had a Gastric tube before when I was a baby till junior high school. Watching your videos bring back memories of me putting my pedicure together before going to bed with pedicure running through the night, and with changing my dressing pad around the G-tube button. Love your videos:) love from the states ❤️💙
I'm so glad youtube put this in my suggested videos.I've binged watch some of her vids.I've had Crohns for just under 30 years and it's gotten pretty bad at times over the years.Watching this woman with such a pleasant And self depricading at times is awesome.Ms Fisher you are great and remind me alot of people deal with such worse things than I do.You are an incredible woman.Thank you for sharing your life.
I have had a g-tube for almost my entire childhood, It's probably one of the worst things that I was required to have, I can't believe you have 2 tubes going into your body, you are an incredibly strong person.I hate to see good people go through all this suffering, I hope life gets better for you I really do.
Since the start of 2021 i've been living on TPN myself. Watching this video made me feel less alone in this world.
When I realised she passed away, my heart got broken..
I hope she is in a good place, and does not have to suffer anymore.
You could be a nurse lmao
love you Amy. you're literally an angel 👼🏻
Hey! I've just found your channel and I think you're amazing! I have had a heart transplant and used to be on TPN when I was waiting for my heart. I also had a NG and NJ tubes and what not so I recognise the struggle haha. Luckily I don't have to use them anymore but I think you're amazing for carrying on so well despite having to use them still. I also have a channel documenting my life as a double transplant patient! Anyway, just wanted to say I think you're gorgeous, determined and an absolute star! I'm subscribed! xxx
As someone who has suffered from OCD this would be a nightmare for me honestly. Everything needs to be sterile, every time you touch something outside of the field you're now contaminated and need to use hand sanitizer, if everything isn't 100% sterile you're going to get an infection and die, it's literally all of my worst fears made a reality.
You're looking so good lately. Glad to see it. Your videos are so informative and interesting. Keep smiling!
For some reason I thought the TPN would be clear liquid ,. Not sure why ??
Emma breen The tpn itself is clear. The lipids(fats) are milky white and the vitamins we add to the bag are yellow.
Some TPN is, they are fat free bags. It depends what regime a patient is on
Hi, Amy!
I know you’re very educated on hygiene and use gloves frequently. I would recommend using gloves when using the Sani-cloth wipes. In rare cases it does cause health problems with your liver and other things you could imagine. Just a safety tip! I always make sure I’m gloved up before touching them!
Amazing.. but if someone had this condition in my coutry, I doubt they'll
be able to survive unless they're super rich..I live in Indonesia
Same, i live in Brazil
Yes that's true the things she's using were so expensive . Rare people can provide it here in the Philippines
I was thinking the same... Public hospitals in Kenya barely have these things😨😣😣
Sounds like you all should move!
Move to the EU. It's free
I know that your trying to be very clean and all but tom emptied like a whole lake while washing his hands 😂
The cost of sterility I guess.😅
If we are talking about environmental impact the the plastic as well. But she needs to be this sterile, and she needs everything in plastic containers, and she neeeeds to empty a river to ensure she lives.
I used to do home TPN. Do you have the fats and lipids every night? I only did that a few nights a week and other nights I had clear bags with only vitamins and minerals. I used to have to inject some extra stuff into the lipid bags. Isn't your chest cold if you use it straight from the fridge, I used to leave mine for a couple of hours to take the chill off 😊 Really interesting to see how someone else does their home TPN, great video.
Oh my, I'm early! I love your channel and I feel so educated and blessed to have someone like you on CZcams to share your stories with us all. Thank you and blessings!
The more I rewatch these videos I just get so frustrated that she did not survive. She would have been a wonderful mother if given the chance, her and Tom deserved to have that life. I can’t even imagine what he and her family are going through. It’s an awful loss, she was so bright with so much to give the world. I complain when I have a headache, this girl made CZcams’s videos to educate others on EDS with tubes from top to bottom and barely complained.
You are lovely! I'm a nursing student and it was such an informative video💙 A tip: When you drop the utensils unto the sterile field make sure nothing is below your waist [Meaning the table, etc.] Because when it goes lower than your waist it is considered unsterile. I hope this helps💙😊
I am so amazed at how brave and confident you are ❤️
I enjoyed watching your video very much, I work for a home infusion closed door pharmacy. I am a certified infusion technician, I mix many TPNs daily as well as many other IVs and I love what I do. So glad to see your video help others to not feel so overwhelmed. God bless you and your health.
This is so interesting !You would both make amazing nurses (I have an unconditional love for nurses)
These videos are very educational and inspirational! You’re such a wonderful person, I would also love to see daily life vlogs or updated daily routines as well ❤️
"youd think i own an animal but its just tom" had my on the floor laughing
Amy thank you don’t know how your video came up. But your an inspiration I have an autoimmune disease I thank you so much for posting. My days can be tough but not like yours yours you might have saved someone’s life thank you so much
Have you heard of swab caps? I use them when my lines not in use. They are little caps that go on the end of your line. They are filled with alcohol swab to help keep the end of your line clean. If you had these you wouldn’t need to keep the end of your line outside you shirt.
Robin Lodge they don’t have them where I live! Otherwise I would use them and wouldn’t have to have my line out 😅
Bummer
Why would you have to keep the end of your line outside of your shirt though? I have a port and mine stays tucked under. My insurance doesn't pay for swab caps and I can't afford them just out of pocket. No issues keeping my line under my shirt lol I've had my port 2 years.
@@Snickerdoods.x that's what Amy was taught when she first got the line. She was taught that if she was keeping it inside her top it would attract more bacteria off her body such as from sweat. That's just what she was taught in the area she lives in. Every area teach different things.
I love your video's so much you are such an inspiring person I look forward to watching your videos every time you upload
Tom is a good man. I’m sorry you need to go through so much careful preparation just to feed yourself properly. I’m proud of your positive attitude and taking very good care of your health. You are an inspiration.
It must be really hard to be going through what you deal with everyday of your life. I honestly feel so bad for you. Being at a very young age, and dealing with your everyday situations, and routines must be difficult. You keep on fighting girl! you've got this!
That was an awesome video and I think you were really thorough and detailed in what you showed. I had to watch in two bit but only because I have like zip concentration, but I was able to remember what you'd shown first which demonstrates your thoroughness. xoxoxo
1:45 At the end of the ingredients we can read: "ADULT TRACE ELEMENTS"
I hope this is not what I think it is...
lol
Reth Tard lol those are just the minute amounts of other vitamins and minerals that an adult would need for a healthy life, like copper, manganese, zinc, etc. They’re only needed in such small amounts that they get grouped together at the end of the list.
@@Ctldchaotic
Thank you for this, I really didn't know what it was supposed to mean. So there is absolutely no trace of adults inside it, you are sure? :P
Reth Tard I am happy to report that TPN is completely adult-free 😂😋
I feel u girl I have ibs c and it's miserable most days I rather not eat . Drs can't figure it out
You are so incredibly strong!! Tom is so amazing to you! X
How is the grass that you have been putting the excess TPN in? Did it start growing again?
Mollie haha alittle but not much!
I live in an apartment and don’t have room for a large garden. Last spring, I planted 1 cucumber plant, 1 squash plant, some tomatoes, and and sunflowers. I poured left over tpn on it 2 times a week and Was shocked at how big everything grew!
Grass???????????????????????????
You two did an awesome job on this video. Very informative. Thanks for making it.
I am from the states. My set up is similar. The differences are - we use the sterile gloves that you mentioned and not the foam cleanser, I have to add additional vitamins and medications into my TPN bag, they didn’t teach us to pull back and get blood, I let mine sit at room temperature for 4 hours so it’s not so cold when going in, I don’t have a protective bag from the light, and lastly my TPN runs for 16 hours a day. Oh and I don’t have a pole. Mine stays in a backpack. It’s so interesting seeing all of the differences.
I’ve seen it mentioned before, but you don’t use a cap at the end of your Hickman line. Did they use them in the hospital and you just don’t have them at home or do y’all just not have them where you live? If all goes well I’ll be stopping my TPN in a couple of weeks. I could mail you all of my extras. They stay sterile until you pull a tab off so they would be safe.
Marie Lau they don’t use the caps to protect the Hickman line where I live. I wish they did but they don’t 😩
Marie Lau the reason we are taught not to draw back for blood is that every time blood enters the line, it has the potential to cause nasty infections. It seems like everyone has different rules regarding this. I love that Amy just says this is what I was taught...it’s always best to follow our docs guidelines.
Thanks for showing a home TPN set up! I have given TPN in a hospital (I'm an RN) but have not seen it at home. It always looks scary at first because of the central line access and filters, but it is really just a more time-consuming infusion to set up. My TPN sets in the hospital have nutrients and lipids hung separately; many of my patients had midline access with multiple ports.
This was really neat to watch! Always wanted to learn more about TPN. Thank you for sharing🙂
I miss your videos Amy I don't comment much but I am so sorry to your family and friends you were an inspiration to everyone that seen your videos even though I don't have an illness like that I still was inspired by your videos rest in peace Amy
So cute how he helps
I have exactly the same! I’m in Liverpool but I’m not as open and visual with mine. I also the 2000ml bags of Hartman’s fluid!
U do know it’s not a great idea to have your Hickman/central line hanging out like that it’s more safe to keep it tucked away. U may catch it and risk tugging or it being dislodged! Don’t u have to hang your feed up? I was told to hang it 2 hrs before use to reduce air bubbles and allow it to reach a higher temp?!
I have 2 stomas rather than feeding tube. But it’s interesting to see how others are regarding their lines/feed etc.
Lisa Sallery regarding my line I’m only following protocol. I’m meant to have it hanging out rather than tucked away in my top (where it gets hot and sweaty, and that’s perfect breeding ground for bacteria) I know it’s different depending on where you live but I’m just doing things the way I was taught and via my hospitals protocol xxx
Amy Lee Fisher it’s weird seeing how different people do there line. I guess cos my line is used daily, here we think about risk of it pulling which mud me shudder at the thought. Wudnt it be more your site entrance that would get hot and sweat as u r constant flushing it? We wrap the ends here too with sterile gauze to prevent contamination. Well good luck xx
@@lisasallery7860 Mine is the same, We keep mine wrapped in sterile gauze and taped with Mefix to my chest. Im so worried about mine getting pulled out as it happened to my old one in October! It was an accident but I dont want to have to have it replaced again, it was not nice the first time I had mine placed =(
Thank you for showing us! I learn so much from your channel ♥️
She was soo pretty im sorry for the familys loss and i wish i could of met her once
I’m on it too woah finally something worth watching 👏🏻💕
“You’d think I owned an animal but it’s just TOM” Lol literally the same with my bf. The random noices he makes:Dd
Smart and beautiful! You are amazing in how you handle your extraordinary needs. Simply inspiring.
Love how informative your videos are, thanks!
Omg, i love the little zebra you have on your feed pole!
Rest In Peace Amy .❤️🙏🏻
wow! you do a really good job with making sure you are not getting germs in your central line, you do better than most nurses- cause i am one :)
the only thing i would suggest is putting gloves on your hands when touching the cavi wipes (purple wipes we call them at work). i worked with a girl who got cancer because she kept touching the things (purple wipes) with her bare hands (at least that is what they are suspecting). all the hospitals use them in the U.S. i would love to have you as a patient because you do all the work. :) blessings to you my friend!
errnac, that makes me so angry. More nurses NEED to treat all central lines like it is the patients life line that goes to their heart...cause it is & does! We had so many careless nurses in the hospital & he was one line infection after another, which nearly killed him. Fast forward to another hospital & eventually home where I did all his care. He didn’t have one single infection after leaving the first hospital.
I had to have tpn for a perforated colon. Was very sick. I HATED the stuff!!! It smelled like cotton candy..in my mouth, my hair..it seemed to be coming out my pores! I was very nauseated from about 3 iv antibiotics, which didn't help. Hope I never need it again. I was told it is "pre-digested protein"...yum