Hey I’m Amber, I’m 20 and studying Medical Engineering at University. I have a number of chronic illnesses and wanted to make this channel to spread awareness and also have some fun documenting my life!
Diagnosed in Jan 2019: Dysautonomia, POTS, NCS, Gastroparesis, (PEG-J tube), BAV, Reactive Hypoglycaemia, CTD....
Hi may i ask since you use that machine for a long time. Have you encounter the warning sign "out of pump" but in manual it means the problem is from pump to patient but its not connected yet to the patient the milk in the tubings was not pass through smoothly its like there is some clogde inside the tube but the tube was clean and new. Hope you answer my concern i'm new in this machine😔
i just now found your channel and really resonate with your videos :) i hate seeing others suffering but it makes me feel less alone in my GP struggles too 💗
Hey Amber, thank you for this video; I just got a job as a pediatric nurse, and it's young people like you that made me want to do what I do! I love how innovative you were in modifying your backpack; you thought outside the box in order to get your needs met, but also to give you a sense of normalcy, and I think that we need more people who think like that creating products for those who have special medical needs. Hope you're having a lovely day in the UK, and thanks again! - xx, A
Would you be interested in doing a Zoom chat about living with tube feeding? I think it would be fun to discuss Tubie stuff. We could post it on our channels. ru-vid.com/show-UCGMNTQLnl4tTMHmVozQ1uwA
Unfortunately I can’t get a surgical tube for quite a few weeks due to processing and deciding on which tube which I was a bit upset about as I wanted it ASAP. But everything happens for a reason and it will allow me to go back to university whilst I wait :)
@@amberriggs4683 I'm sure it will happen and probably worth the wait to get the right choice. As you rightly say, everything happens for a reason and I am sure the reason here is that they want to get what is best for you in the longer term, not just the short term. Ask Grandad (Peter) yo let me know when you have heard anything, unless you post a video. Take care.
im struggling with my own health hope you feel better your not alone we love you my golden retriever is having puppies soon if you wanna watch on my channel might cheer you up i mean it actually. I really understand how hard it can be I hope your treatments help you
Welcome to the club! There’s loads of us and many Facebook groups that are fabulous too as well as some other YT channels and Insta’s keep up the good work I’m catching up lols as I only found you recently xx ps. Hypos suck! I lost 4 stone in 11 months before I had my tube it was bad..
What feed do they have you on I had issues till they found a more higher calorie feed for me as I wasn’t able to tolerate standard feeds, I have part elemental ones and peptide feeds mines 1.5cal/ml you can get some that are 2cal/ml fully elemental feeds can be super low cal/ml so I wasn’t able to gain weight with these very well. Tubie cheeks do lovely tapes, as well as Tubie Pads on Etsy and LoulaBellie by Ellie on Etsy does some wonderful port covers, pads, Tubie clips and pump stickers xx
I also have Gastroparesis I did have an NJ tube and now I have a Peg-j tube is it an NJ you have in? :) just found your channel & subbed. I hope you’re feeling a bit better? how are you getting on? I love my backpacks I got 2 Toki Doki backpacks and got them adapted by Tubiee Go. I’m J tube fed over 24 hours (feeds & fluids) x
Whoop Whoop! Great video ✨ keep it up little more kick and jump with the board and you got them ollies in the bag 💼 (p.s try practicing them off the grass because the pop is different and it doesn’t ruin your bearings but you probably know that )
Will check them out! I think I've bought some tape from them before :) This video just happened to be about tubielife because of the giveaway but theres load I love on etsy
Any advice for me I’ve been in the emergency room yesterday for gastroparesis and I’m still sick having to take medicine but still vomiting when eating soft foods and Liquids I’m wondering what I should say to my gastro doctor who I’m seeing in 7 days
Hey, I’m so sorry for the late reply! When it got to the point of throwing up my medication and everything else that’s when I was admitted for my nj tube. They look at 3 things, malnutrition in blood work, BMI, and medications (ie how you’re coping) to assess for one. I hope you’re being looked after well. And I’m sorry to hear you’re at this point xx
@@amberriggs4683 I didn’t get a feeding tube my gastro doctor says I’m still mild Gastroparesis but that was a horrible flare I’m still in the flare but at the end of it and my gastro gave me Medcine that is helping so yeah reglan and another one
@@alyssawssinging4039 glad you got medication unfortunately due to my heart I’m not allowed many meds that help so feeding tube was my only option when it got worse xxx
