♡ Tom Experiences P.O.T.S for the FIRST TIME! 😂😂 + Gastro Appt (07.01.19) | Amy's Life ♡
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- Опубліковано 8 січ 2019
- ♡ Tom Experiences P.O.T.S for the FIRST TIME! 😂😂 + Gastro Appt (07.01.19) ♡
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♡ MORE INFO ABOUT MY HEALTH ♡
• HKPP: medlineplus.gov/ency/article/...
• POTS: www.nhs.uk/conditions/postural...
• M.E/CFS: www.nhs.uk/conditions/Chronic-...
• FIBRO: www.nhs.uk/Conditions/ Fibromyalgia/Pages/Introduction.aspx
• EDS: www.nhs.uk/Conditions/ehlers-d...
• GASTROPARESIS: www.nhs.uk/conditions/gastropa...
• MCAD: www.ukmasto.org/ukmasto-medica...
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We will miss you Amy ❤️
❤
My boyfriend wanted to understand my POTS better, so he went up and down stairs and got his heart rate similar to mine and just laid in bed saying, "how can you do this, this feels awful". We feel awful and tired but we push through it. We are warriors 💕
It stinks that your period started again, but it’s a great sign the tpn is doing its job. It can be so hard to decide what to do, but if mine returned at this point, I’d go onto birth control to stop it. The thing on the end of your line is a clave. You’ve done amazing with your line, but I’ve got a couple of suggestions. Here we always use a biopatch no matter how long you’ve had your line. It’s one of the best first line of defense options to prevent infection. I’d ask to continue using them when the 6months is up. They make some alcohol filled caps called scrub caps to put on the end of your line when you are not using it. I’d ask about getting them. The place just above the white clamp on your line where the bigger tubing turns into the smaller one is the weakest place on Hickmans and broviacs. I’ve noticed that spot is right where your line hangs over your shirt. Over time, that will cause it to break. Some surgeons will repair the lines when they break and others insist on putting a new one in. I’d recommend you tape your line shirt or coiling it one more time so your shirt doesn’t cause the line to break over time.
Poor Tom, He already knows what you feel! I loved to listened to you laugh so hard because of him!
That little snore in her laugh at 12:27 is just so cute
Your outfit was so cute!! Good call picking up the trousers, they suit you well!
Amyyyyy you are lovely!! Keep rockin’ gal!! And get Tom to keep pushing out those lunge and jump squats and laps round the garden because it’s pure entertainment gold haha 😂 xx
I remember being excited about my first period after being sick for so long. That excitement disappeared after realizing how painful it was. I since have been diagnosed with endometriosis, adenomyosis, and fibroids. I’m having a partial hysterectomy on Friday 😱
Kim Daniels good luck! I hope all goes well! Xx
How did they do a endometriosis diagnosis? Did you have to have a surgery to see?
I love the way you are uploading!
I love the outfit before you went out. Looks really good and really suits you.
You and Tom are cute as a button..Tom is so funny.. I look forward every morning watching your videos before waking kids up for school.. your so amazing amy. Sending love from New York and god bless
You both make me laugh so much. Thank you
Amy, I've been iron deficient for most of my adult life. Recently they checked my copper level and found it to be very low. Copper is necessary for iron absorption. I take it orally now, but I have gotten infusions of copper, in addition to iron, to bump it up. I don't know if they checked your levels but that is something easily overlooked. Good luck, feel better.
Poor tom 🤣🤣🤣🤣 he did not see that coming 🤣🤣🤣🤣 Amy you are as usual an inspiration girl. Be well
You look so beautiful today! As always but your hair looks so good slicked back. You are such a strong person.
I literally watch all your videos and I’m so glad you saw this! Just so you know that you have so many people that support you and care about you!!
I am so happy that your body is coming back around. I love how you cheered Tom on to exercise. So sweet. Don't forget your new camera when you go out and about. Please thank your parents for ALL the things they do for you (encouragement, guidance, love). Pet those amazing pets once for me when you see them again.
your outfit is so cute! x poor Tom though! 💓
So sorry you go through all this. Your such a good nice person, life has no right to be making your life so difficult compared to my own.
So nice to hear you laugh😂😂😂
Y’all are so sweet & funny ♥️
Oh thank you for the laugh Tom!!! 😂
For what it's worth, I use a fit bit and was wearing it during a cardiac stress test a few months ago. When the EKG said my heart rate was 184 my Fitbit was measuring about 150. So take them as more of an approximation than anything reliable
So after watching tom do burpees I got my bf to do it and check his heart rate his was 122 after 20, I have tachycardia so I did 10 and mine was 174😂😂 so joys of having a fast heart rate just sitting😂
lol same!!! Mine high heart rate has never been able to be diagnosed or explained other than high sress and anxiety. I finally started a regimen of Beta Blockers and that has kept my heart rate from 100 bpm to 115 bpm instead of at rest 120 bpm to upwards of 180 bpm. My husband thinks I'm just gonna stroke out one day lol...I feel fine when it gets high, but I am more naturally tired and fatigued than your average 30 year old.
🤣 Tom 🤣 lol, he’s so funny
earliest ive ever been on your vid omg
Hi Amy i recently started to watch your vids as i was recently diagnosed with intestinal failure after 14yrs of not being able to keep down food and not absorbing enough jejujal feed. This last year has proven that. I weigh 32kg now. I am awaiting my hospital admission to start tpn. Ive had this twice before but only as sn impatient and its worked before but theyve never stuck to it beacsuse i got sepsis from my lines ss they werent looked after before by hospital stsff so this time round i insisted on being trained. Anyway once tpn starts i will get my life back. I had to stop wrking znd the only thing keeping me alive is 3x weeklu potassium, vitamins and fluids and its still nt enough. Im nearly homeless because of all of this as i have no family. Wish meuck. Youre lucky to have the support u do. I wish u luck in your on going treatment. Youre bery brave.
Oh p.s. the blue thing is called a "bung" not just a connector. I have them too as well as a green cap which youre supposed to have for hickman lines. I have s dual line so not sure if 7 need it for songle. I can have tpn snd other things running at the same time as well as blood when i need it as they run independent of each other until gjeyre hit my insides.
B x
Things that make you go hmmmm 🤔-
On a related note, did you know that the tune for Twinkle Twinkle/ABC/Baa Baa is based on a song composed by Mozart, called 'Ah! vous dirai-je, Maman', which loosely translates to 'Ah!
I know those “blue thugs” as a line cap 😉
Thanks for sharing today
You and Tom make me actually lol your too funny 😂 x
The blue thing on the end of the Hickmans Line is called a Bung!
It is called bio connector or connecteur hihi 😁 it was easier if they keep it simpel haha
Amy please be careful! Your house number shows in the video when you are getting into the car in the beginning :( i don’t know if you are aware or if you care but I just wanted to let you know! Be safe! Lots of weirdos on the internet! :/
😯
This is probably completely useless to you as you haven’t been having periods, but I have EDS and I had really heavy periods which I eventually found out were due to endometriosis - so my stupidly stretchy collagen went and misbehaved by growing where it could there too :)
(I’m only saying because I’ve met quite a few other people with both conditions too)
I can’t believe that you’ve been on TPN three months already, look how much energy and fun you’re having now compared to where you were, with complete intestinal failure and no energy, even to having to use your wheelchair to get to the toilet...
Purrrrlllleesseeeeeeee can we have “things that make you go... ummmmmm!” ....?
Pretty please 🙏
The blue caps on the ends are called "hub caps" in the US. (nurse here!)
What does the bio patch do? Is it just to protect your skin from bodily fluids/medications?
That bag of ends is called claves😉
You are looking so good😍😍😍😍🔥🔥🔥🔥
You rock girl
Someone below commented a different name, but I’m an RN and in Canada we call the IV connectors “luer locks” (pronounced “loo-er”).
A friend of mine was struggling because his pulse was at 100, and hanging out around it, and I couldn't contain the smile when I asked, "Now, would you go to the gym?" Under 100 is a good day for me. I really need a smart watch to keep track, my fitness tracker wasn't all that comfortable.
Love you
Can you absorb iron from an iron infusion? I am an EDSer with multiple vitamin deficiencies and malabsorption from a short gut. EDS "ate" my small bowel by way of adhesions. Now, about every 3 years or so, I have been becoming severely anemic. I got a transfusion once and then the hematologist gave me Injectafer iron infusions. I was able to absorb it, even though it doesn't keep building. I just use it up and then need more in a few years. Being 64, I don't lose as much blood as a young woman would -- so there's that.
💜
Poor Tom😂😂
I suspect that I have POTS, my resting heart rate is ok, but when i get out of bed, it goes from 60bpm to 120bpm in only a minute or two, i feel faint and dizzy when this happens.
Amy, I always say this but I really appreciate you sharing what you do with us. I’m sorry to here you’ve been experiencing additional complications but hope if they do the scopes they find and eliminate the problem. It’s awesome you can now do your own dressing changes and don’t have to sit around waiting on a nurse to show up. I can’t believe you have been on TPN for 3 months either, but you look so good!!!
Alyson Jade Thank you so much! ❤️❤️
The tips are called claves. I always use a biopatch because it helps prevent infection and any little thing to help prevent infection im all for.
I always use a bio patch with my 3PICC lines and now my port. Always use the green alcohol scrub caps. Never had any infections!!!.
@@lizwoppman5106 yes i use curos caps as well. "Green means clean"
Yep, claves! Also, I get orange alcohol caps...nobody seems to have seen them!?
My green caps are alcohol, also
Aww Amy I loved your outfit! They trousers look so good on you. I can relate to your period news. I suffer from PCOS so yeah I can have heavy bleeds and lose iron it sucks. Sending you love and it's totally ok that your not vlogging all the time. Take time and rest when you can!
How long do you have to be on tpn for hun? Xx
Blue thing is an Ultra site (that's what we call it in the US)
Hi amy, how are you?? X
I have an iron deficiency too.
Love the outfit it is cute. Good and bad that you have you period. In the US the doctors suggest that women that are of child bearing age or having periods should take in extra iron to help keep iron levels up. Tom was so funny when he was trying to do the burpies. Take care.
The blue things are called lumens
Hugged your awsome
They're called hubs!
The blue thing is called a bung
Tom that was nothing I have crew for two hours five days of the week
Anemic with sucky iron absorption here too! I have to take a kid’s multivitamin with extra iron in it a few days before I start my period and throughout my period because I worry about my levels getting too low again and starting my heart palpitations up again. 🙄
I always thought everyone's heart rate went super high on standing before I was diagnosed with POTS😂 I remember one time we were in Science and we had to check our heart rate and I got 128 but everyone else was getting 90 at the highest so when it was my turn to say what I got i lied and said 82😂😂
JessTheHorse I’ve done similar stuff. I’ve also got POTS, before I was diagnosed I was talking with a bunch of friends and we talked about like head rush and I was like wait you guys don’t lose your vision every time you stand up 😂 🤦🏼♀️
Take the bone of the cow bone Take water Put spices and salt. Wash the bone thoroughly well well. And put it boil between medium fire and quiet .
Gelatin will be released in water like gel This material strengthens Cartilage body and bone food integrated into bones .
Let this cool Medium-sized dishes and put them In plastic bags and keep
And every time you cook Add this jelly in food too .
Lol Have a rest then do ten more lol poor Tom
hi amy
That stinks that your period is back but it’s a good thing to. I feel like you go through so much and have your period has to be annoying. Can they you iron to take
Hugges I mean darn auto correct
You look so much better and appear to have gained weight !! I’m anemic from auto immune deficiency I take iron all the time and birth control to control the amount I lose so every three months instead of one it’s been helpful
Just wondering I'm just about to start iron for anemia does it make you gain weight or lose weight?
Hanny Smiles it’s does not much effect weight for me that is
Lol Tom, every person starting out exercising, yea I can do this, pfffttttt no I cant Im dying. Haha Amy snorting
MysteriousNightLife1 ahaha so true 😂😂😂
Have you always lived in Australia? You sound so British
With an Australian twang
How cold does it get in Australia in the winter?
Tee Smith it can get in to the minuses but only just 😅
@@amyslife4457 a bit different form the uk that you where used to 😂
Tee Smith and right now it’s summer there! I wish it was summer, minus humidity right now where I am lol.
@@marieked it's summer where I am in NZ, and I so wish it was winter 😂 I'm pregnant so the heat is so much worse now, and I got so burnt at the zoo yesterday 😂
Depends on where you live in Australia, I feel like in NSW on the coast we barely get below 10-8°C in winter
They are Claves, needleless connectors, micro claves, they have a bunch of names....
That was so funny Tom. Hope you’re heart rate is back to normal now!!
I’m 10 and I have pots it is harder than you think I Pass out about 10 times a day it life for me but other are scared of it and scream 😱😀😃
I have a habit of losing my appointment letters so I take a photo of them and favourite them on my phone. Means they’re easy to find when needed and I don’t get lost or turn up at the wrong time.. not that I’ve done that....... 😂😂 oops
Omg such a good idea! Thank you ❤️❤️
It works really well. We always have our phones. I try add them to my calendar on my phone too and set alarms for the day before, then when I have to leave but I always forget to add where I’m going or why and for who.
Swab caps
hi why does the bag say bio hassard
Erin Whiteway its the only bag my nurse had available to put all the ends in! Don’t worry it’s not actually bio hazard stuff 😅
I swear every time my doctor/nurse send me home with all of my stuff it is in a bio hazard bag. But at least nobody ever wants to mess with the bag of stuff so I do that have to worry about someone trying to steal it.. LOL
Can someone explain, is POTS basically very high heart rate? If so, then I experience it daily during my workouts when I push my body to reach above 180 beats to high 80’s i.e. 187
Bless Tom. He’s such a good bf. I’m the same with anaemia too. I just don’t absorb it properly but urgh it sucks x
The little end bit is called a clave, but some people call it a cap. Hugs & love ❤️😊
I do not understand docs who when the symptoms are putting life at risk say we may do this or that it should be yes we need see whats going on inside because its not normal i'm iron deficiency too i get ill if i take iron tabs so have to get injecs in bum lol im sorry people feel need to be know it all's in comments as though you don't know anything about your own medical issues and all you do proves you know more than most and as for the trolls or negative parade ignore them a view is money for you
I'm sure you have covered this but you know better than anyone how complicated your health is it's hard to keep up with everything. My question is how long will you be on TPN and what are the deciding factors that will let you get off?
I'm thinking maybe getting to my goal weight is number 1 and secondly I need to get my feed rate back up again 😅
Got it. Thanks for taking the time to answer and probably having to repeat yourself.
Haha bless Tom POTS really isn't fun!!!
I have tachycardia all the time, my mom didn’t believe me when I told her I felt to sick to help her carry something, I took my pulse and it was 185. I was just laying in bed before I took my pulse. Yet my mom and my doctors still think I’m fine. I don’t know how to convince them to test me for pots. I have video evidence of these attacks as well.
Immortal Velociraptor record your pulse when it’s happening with a camera or mobile and try to collate several attacks to provide an accurate insight to the issue. If you’re lying in your bed and you get tachycardia, record for several minutes with a pulse oxymeter on and hopefully they can see it’s real
I just got back from the dr. And my heart rate was 149 and I said oh ok that's normal. He said no no no it's not. I told him it's normal for me. I should have kept my mouth shut because now he has me going for a huge range of tests. I hate tests. I hate doctors and hospitals. I'm the worst patient. I feel so bad for all of you that have the same issues as Amy. I don't know how you guys do it everyday. You're all truly incredible people.
Go see a different doctor
@@imthinkingmaybe2615
The same with me. I just wanted to go to school and that's why I even broke down and then directly to the doctor and the doctor prescribed me first very crammed doses of tablets and a referral to the cardiologist. So I go first to the cardiologist and get an appointment quickly. The appointment comes out that everything is OK and I should still take half of the high-dose tablet. My question was: "what half tablet if all is well", her simple answer was: "So that does not happen again". Do not take the tablets and do not go to school and feel completely misunderstood.
My english is bad and I did this with Google ☺️
@@alicejarosch6637 If you still don't feel well and you feel misunderstood please see another doctor for a second opinion. If English is not your first language find an interpreter or ask if the hospital has one. You deserve to have a full understanding of your health issues. Good luck to you and I hope you feel better.
Welcome to Australia! Everyone complains about the weather
What's pots
Postural orthostatic tachychardia syndrome . Basically your blood pressure will spike or drop really fast when you change positions . I have it as well
They are needleless ports or needle free injection sites
Tom 😂😂😂
In us the blue thingys are,called,caps
Sorry...what POTS is? What it means??
asaf povo postural orthostatic tachycardia syndrome. It means that when you stand (or in some cases, even sit up) your heart rate goes up 30bpm or above 120bpm. It’s the autonomic nervous system malfunctioning. Symptoms include dizziness, weakness, tachycardia, nausea, tremors, pre-syncope or syncope, etc. Bad cases are thought to be as disabling as having COPD.
You don’t have to share . Just show what comfortable with.
Make love instead Tom 😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂much better your hart rate will not matter 😄😄😄😄
u complain about everything all the time. how the hell does tom put up with you