Traveling with Pulmonary Hypertension, my oxygen & meds + Packing tips & tricks
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- Опубликовано: 16 сен 2019
- In today's vlog I go over my "traveling tips" - I hope you all enjoy my DIY Pulmonary Hypertension travel tips. Pack with me!
#pulmonaryhypertension #music #vlog
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Thank you so much for tuning in! I was diagnosed with severe Pulmonary Hypertension 6 years ago, after having been misdiagnosed for 5 years. When I was finally diagnosed, I was in heart failure (the right side of my heart was three times its normal size), I was told that I may not have much time left to live, that I may never leave the hospital again and that if I did, I would have to be on oxygen for the rest of my life! (Not the best news!)
I had just booked a tour and was about to release my new album when everything just broke loose. Here I am, 6 years later feeling a zillion times better. I am so incredibly grateful to be alive! It is my hope that some of the things I've done may be of value to YOU.
For the past 6 years, I have utilized five key elements that I believe have played a huge role in my improvement. They are Nutritional Lifestyle, Exercise, Mindset, Creative expression and Quality time with Family and friends. I believe that these key elements have not only allowed for the medication to work when I was told that it most likely wouldn’t (because my Pulmonary Hypertension was so severe- pulmonary pressures were at 180) but that they have also allowed me to drastically reduce my meds. I am currently on very low doses of medication and I really don't experience any side effects.
I get so many emails from people asking about nutrition, exercise, how to stay positive when things get difficult...basically wanting to find out what I’m doing.
As I always say, I have no idea what could happen to me tomorrow, but I do know that today, I’m so much better than I was.
It's my sincere hope that some of the things that have helped me may be of help to you, too.
Thanks!
Chloe Temtchine
Thanks for watching Traveling with Pulmonary Hypertension, my oxygen & meds + Packing tips & tricks
![Sean Rii, Karyon, Sharzkii - Taungule [My Love] (Official Music Video)](http://i.ytimg.com/vi/eJoMuypbSzQ/mqdefault.jpg)
honestly I've been looking for a RUclips channel to make me laugh through chronic illness and your just amazing, I so glad I came across you. I don't have pulmonary hypertension but I do understand as I have Cystic fibrosis. keep it up x
Just seeing this comment now. Thanks so much, Daniel. Hope you're doing well! 💜
I feel you on the heart thing ,Just when you are really to go to bed its wants to start dancing around...Glad you had a great trip ..Have all the fun you can have and stay safe and thanks for the info :)
💜
TheMetz2020 try watching ASMR videos when your heart starts acting crazy. I used to have SVTs which gave me anxiety attacks, until i found ASMR on RUclips
Congratulations to you my friend. I admire your getting and doing things.
I relate to and completely understand everything you are dealing with. My heart goes crazy everyday, I cant breath, I have no energy... ect ect ect. And the fear, oh the daily 24/7 fear. I found your videos today and I have binge watched several of them because it is so refreshing to hear someone else explain exactly how you feel. I feel so alone sometimes because it feels like people play down the severity of how you feel, and not to mention how terribly I just want to be free from this and live a normal life. I just want to say thank you for putting your self out there and sharing your perspective of chronic illness. It is people like you who are a bright light for others struggling to cope with lifes cuve balls... or (flaming demon curve balls from heck)...
I am tremendously thankful that you are bringing awareness to this rare disease. We need a cure now and that will happen faster with more knowledge of the disease being spread out into the world. You are more than doing your part in this and I am so greatful. I am in this with you, I am fighting with you and we will continue to fight. I am praying for your health, happiness, and family. I find alot of comfort in God and I pray he brings you peace and comfort. Thank you so much for everything you do!!!❤❤❤
I just found this page, very happy to see that there's other people dealing with the same disease. Reading this can help me get out of the house and not be afraid.
@@ramonapatterson1082 It is easy to be scared and it's ok, but we have to find our strength and hold on to it. As time goes on treatments only improve and we get ever closer to finding a solution to this disease. In the mean time we have to do everything within our control to be our best selves physically and mentally. I am praying for your strength and well being. I am with you. God is with you. ❤
Kerry, thank you so much for your kind words and for sharing all of this 💜 You are most definitely not alone. Please keep in touch. Sending you a big hug 🤗💜
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Hi chole! You are a ray of hope.
I’m on oxygen in the hospital right now and was wondering what home life might be like so I found this really helpful to see what sort of things are available for people with low o2 saturation.. Really appreciate the detailed look at the condensers and other stuff. Thank you so much!!!
Thank you for the baby stroller idea . Mine is too heavy to carry
Thank you for sharing.
love your personality and I love the way you edit your videos. I subscribed for more videos!
Thanks! 🤗
love your positive attitude , I also suffer from pulmonary hypertension , I was wondering how to travel on airlines and came across your video . thanks so much for posting your video.
This is very helpful. Thank you for sharing.
So glad it was helpful! 💜
VERY INFORMATIVE, CHLOE, HONEY..... I CAN'T HELP BUT SMILE, YOUR PERSONALITY SHINE'S THROUGH....
I FEEL BAD FOR MY HUBBY AND ALL THE STEPS TO GET MY GEAR TO AND FROM THE CAR.
SENDING YOU AND YOUR FAMILY LOTS OF AND RESPECT 🤗🤗🤗🤗
Thank you so much
Thanks Chloe I am on oxygen. I applaud your efforts. I would like to travel, but my oxygen flow is high. I Still am looking for ways to become more mobile.
Hi great information for people like us with lung disease.definitely a lifestyle change!!! Takes some getting used to, but you do , cause we hav no choice. So I take one day at a time, an try to get out at least 3 times a week. At home I’m on the big concentrator, an when I get out … I take my carry- shoulder bag concentrator. An I roll it out to the car on my walker- I put it in the basket… works out fine. But definitely a big change. Good luck with your travels. I’ll stay on the ground- don’t like flying 😊 take care . An I know it’s plenty of people, in our shoes… I pray for all of us continued health.
Definitely helpful!!! Thanks a lot for sharing all the tips and hacks 💙
Always love the authenticity of your videos 💙
I literally jumped with exhilaration when I saw that you also use a stroller for the Inogen G3 😂 Thought I was the only one who looked a little weird pushing a little machine in a stroller 😂😂😂 but it tends to get really heavy the longer you carry it. The stroller is a blessing. If I have my lightweight, travel, wheelchair with and I'm walking.. I put it in there and walk
Our "babies" 😉😂
Much love Chloe 💕
Keep shining 🤗🤗✨
❤️🤗❤️
Wow good to see someone else like me.. you gave some ideas that can work.. do you tolerate the portable puff of oxygen.. I struggle getting use to it
I'm also 24/7 on medical oxygen but I enjoy life do things go to places also take it off to wash my hair and shave and at the super tube. Use the portable at the swimming pool with a extended tube but yes I may not take it off then my reading is 75 but 99% of the time it's on. Thanks for how you handle your oxygen because I'm still learning
EXCELLENT video!! Boring ??? NO WAY! Very entertaining just watching your beautiful face alone!
That’s very sweet 🤗 Thank youuuu ❤️
Hello!! Thanks so much for sharing your life with us! I have a rare ILD and am on O2 as well. I LOVE your idea of the stroller! I have used a lightweight 2-wheeler cart in the past, but the stroller is truly a step up! I love to travel and I am going to try your stroller idea on my next trip overseas! I'm currently overseas and wishing I had a stroller - perhaps I'll go buy one! :-) Sure appreciate you girlfriend!
Kathi, I also have ILD and mine is from a connective tissue disorder. I use the two wheeled cart- the one with the wheels for stairs. Did you try the stroller? Do you prefer it?
@@bethmaccrindle220it is possible u live longer with ild
I have PH and COPD. Thank you. I'm flying for the first time in 3 months.
Thank you ❤ my daughter has oxygen and we have to fly for a surgery and i had no idea what to expect
Thanks Chloe!! I was just recently put on oxygen when I am outside the house. I had planned a trip to Dallas (from Kentucky) the end of October and would be driving. My oxygen supplier has given me nothing but trouble with my Respironics Simply Go. It is currently in the shop (at Lincare's Florida facility) with no idea of when it will be returned. I, too, get paranoid about the batteries and have purchased an extra one myself but I still am not comfortable enough to go out for long times. The battery is supposed to last 2.2 hours on 3L pulse so I figured I can get at least 6.6 hours in an outing. I know realistically that I won't have a problem if I run out of "juice"--after all I have been for about 10 years with no extra oxygen. Just need to realize it is not good for my system--everything else works harder. It turns out my Dallas trip got cancelled so I won't have that to worry about. I am back on tanks--mine is named BOG (Breath of God) for the time being. I loved your vlog about your trip to Hawaii--looks like you and your Mom had a great time. I would prefer to use the tanks around town and have the Simply Go for longer trips but Medicare will only pay for ONE of these. Did you purchase your Inogen youself? I guess that is always a possibility. I have researched all the POCs forward and backward and am not sure the Simply Go is the one I should have. I really had no choice from Lincare--just got that one because it DOES have continuous flow and thought I could probably use that for my Bi-Pap at night. It has never worked long enough for me to figure that out. Anyway-sorry for the long post but thanks so much for sharing with all of us your tips--the stroller is a genius idea!!!! Hugs!! Debi Huff
I love BOG! :-) It's true that good ol' fashioned tanks are the most reliable in the end💜.
And please, when you do travel always have tanks as backup. In my experience the machines are unreliable.
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Thank you so much for all your advice. Quick question, on my portable concentrator how long if a cord can be used (with the puffer) I want to get in the pool but so worried I'll get it wet.
Maybe try googling extra long cannulas... Not totally sure but there has to be a way :-) Sending hugs
This was so informative, however, where do you get your extra long battery? I have had 4 different oxy2go's and all different sizes, I even bought a backpack and the new one does not work in it. I think you are so funny, keep making videos.
🦓 Since you wear your o2 cannula down your back, how did you put miniSteve in the stroller and push it? I always enjoy your videos. Never boring!
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The cable is long enough to fit around to the front☺️
I’m still learning everything there is to know about wearing oxygen 24/7. I was diagnosed last December or early January. I can’t wash my hair without getting weak or very sick. How do you manage to do it?
Definitely baths for me :-) So much easier. Sorry it took me like a year to respond. Just seeing this comment now. 😱
This is very informative! I got my diagnosis half a year ago by now, with too much movement or even simply walking my oxygen also goes down (depending on how fast i walk it can range from 88% to 80%) and during 6 minute walk test even goes towards 70% D: However during rest or standing completely still upright my saturation thankfully is still up to 99%. I was told I can do a flight simulation test to see if I can travel by plane, and wether or not i would need oxygen. I'm very curious as to wether I would need oxygen or not as it is 99% O2 when I sit still but in a plane up that high it would probably be different for sure but you gave some really awesome tips should I need to have oxygen for flying (im so praying that i can fly im only 22 i really dream of travelling since i never could as a child
So glad this was helpful! If it's at 99 right now, I would guess you wouldn't need it. But perhaps you could take a concentrator on the plane with you just in case it goes down :-)
@@chloetemtchine we will have to wait and see~!
someone did tell me that you should only fly for like 3 hours at a time at most because of the air pressure? But I don’t know if that’s true but it would be a bummer because a flight to japan is like 10 hours so we would need to land 2 more times and takeoff and landing is my least favorite parts because they hurt my ears :(
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Hey Chloe,
Do you know if the Eclipse 5 is the only portable that will allow the highest continuous flow? Also, did you purchase your own? I require a high flow and plan on travelling. This is all new to me. Thanks a bunch!
I actually have no idea 💜
I have a Respironics simply go and it goes up to 5l it is also much smaller than the eclipse and it can be plugged in and used at the same time.
Ok what was the name of the machine you bought you travel with again and WHERE did you get it? it is on Demand I see I have a hard time with on demand. I just RECENTLY was diagnosed with Emphysema and I do not feel like I have it at all but my oxygen just goes down to the low 80's and sometimes 70's. I LOVE that I see your video because I HATE that I have to wear this thing and seeing you, you still look so beautiful with it on even that maybe I should just embrace it. I AM getting ready to go do stem cell therapy to hope I can take it off. but we will see. I am on 2. so glad I found you.
You're good. I get discouraged when having to travel with all the equipment and meds and such, so I don't go anywhere any more. I used to go & stay a couple of days with my parents , they're just 20 minutes away, but I have to lug all that "STUFF" and it's just not worth it. As for the oxygen I am on 24/7, I can't wear it in the shower and was told not to wear it while cooking. Great videos and info, keep it up. Makes some of us feel less alone, I suppose.👌🏽
I totally understand. Leaving for an hour is like packing fr a year! I try to make myself do it despite the huge effort, but I totally get it 💜
Do u have a small portable carry like a bag.
Have you ever done a long haul flight? And also, have you felt differences in the planes while using your POC? I may be go on a long haul trip and was recommended to use oxygen to prevent any complications; I'm curious how it feels like to travel with oxygen pulse or continuous. I have muscular dystrophy with an average 95% o2, my doctor told me I can't travel and I need oxygen; do you feel your POC maintains your O2 levels steady while flying? does the cabin pressure affect you? Also last question, I am traveling a long-haul (US to Europe), do you have any experiences for long flights with a POC? I'm very scared because I have never used a POC, but I am willing to buy one for air travel. Thanks for sharing your experience!
What are your symptoms without your oxygen. I a have copd and they said I don't need oxygen because my level is reads above 90. It has to drop under 90 when walking.
I take mine off too. I dont feel any different unless I'm running a marathon lol jk
H I w long can u go without your tanks.
This woman is pretty fkin awesome
Thanks! 💜
@@ChloeTemtchineLife lol a year later reply?
Can you have ay type of surgery so u won't have to be on that all your life.
Yes, I had a double-lung transplant 💜
Looks like astronaut gear.
I love u bb
Lest make rings out of nickles of 5cents us
it's just a thought, but since you have mini steve and a baby stroller... could you call mini Steve
Baby Steve.
I’ll ask him what he thinks about that 😂
I hope I can buy portable oxygen. It’s too expensive 🥲. So no going outside and just stay home :(
Do you like to wear oxygen tank with a nasal cannula Chloe
I see u have a smaller tank to take out in public.
I have an everflo concentrator it’s a lot bulkier, what do you recommend when I travel on a plane.