Mary and Peter, Please keep my friend Libby Hankins in your prayers. She is 23 and has CF and had a double lung transplant about 10 months ago. She recently went into antibody mediated rejection AND developed a virus that is attacking her new lungs. She is in ICU at Duke currently. She's making very slow progress but things are still scary. She's an amazing, inspiring person just like you, Mary. You can ready more about her story on the Lungs for Libby Facebook page!

@Emshep64

7 жыл бұрын

I'll pray for her. :)

As a fellow New Englander we try to visit warmer weather at least once a winter. We call it "trading our pine trees for Palm trees". So glad you were able to trade your pines for palms!

And now you're getting over a foot of snow with the cold. Stay warm with Peter and Ollie Boy. ❄❄☃⛄⛄

I'm glad you guys identified a potential problem early and can now look towards another option! Nice to see Ollie again and you guys settling back in :)

We will be praying for you and your doctors as decisions are being made! God bless!

Hang in there, Mary! Plans fall through for a reason. God's got this and you! ((Hugs))

Glad you got groceries-saw the weather is going to be brutal! I just love your little family and pray for you daily!!

Glad peter is better and you Mary are also getting things done! ❤❤

Praying for wisdom for your medical team, Mary! Ollie is sooooooooooooooooooooooo cute!!!!!!!

I can't imagine an incision into your abdomen and coughing during healing... I had an appendectomy last year and coughing and sneezing hurt like crazy. Prayers for your team to make the best decisions for you. Sending my love

Glad that your reaction cleared up, Peter! Mary- hope that they can get you on the OR schedule ASAP...but you're right, it's funny how quickly medical plans can and do change! Stay warm guys the snows are coming! 💜❄️❄️❄️❄️❄️

That my friend, is called a stress dream. I get them every once on a while too. ☺ Just keep on breathing!

So happy you had a dream vacation ! Sorry to hear your feeding tube replacement is further delayed. Love sonia

Good to hear your better now peter. Sorry to to hear about the new complications but I'm sure it'll all work out. Stay strong!

My son had an enlarged liver and spleen. We faced the same problems but thankfully we had a very skilled surgeon who able to fit in a pej. Hope it all goes well sweetie. I'll be praying for you.. xoxoox

Mary, check out the G-Tube called "Mickey Button" it's not a long tube, it's a short peg that is more secured because of the shape.

The Frey Life just makes my day!

I can't wait to see the surprise for the store! :)

you are awesome Mary! I am praying for you!

That stinks that the GJ won't work out as well as expected, but I'm glad your surgeon identified that before putting it in! Praying that the J tube is effective and that you're able to get it in soon! :)

you both inspire me by your positivity

it was actually warm and sunny today in Ireland a mini miracle!

@vidsfromluna

7 жыл бұрын

Ann marie White it's been so wonderful to have blue skies for a change!

I hope everybody stays warm becasue I live on the east coast and where I live we are getting a blizzard.

I told my students today that I watch you guys and surprisingly I had a student that watches y'all too! We bonded over it and talked about how your vlogs are uplifting. 🙂

the ever changing plan, Mary is amazing positive no matter what curve she encounters.

I started watching you guys recently and my boyfriend has gotten emotionally invested in your channel like I have. When I start watching a video he always pops up and asks how yall are doing. Good vibes and prayers for health your way

good luck tomorrow guys hopefully the snows not to bad here in new England

Have a nice day frey life!😍

Stay warm though the blizzard!!⛄💚

Hey Mary! My GJ does get displaced often because I throw it up BUT I have never had it replaced endoscopically🙅🏼 Getting the GJ replaced is easier than an NJ replacement!! Just a simple 15 minute procedure in IR!👍🏻 I really hope you don't have to get a J tube, that surgery is so much more invasive and a more difficult recovery😢💔🙏🏻 Prayers coming your way!

"It will all be what it needs to be." I like that. You should make that into one of your wall decal quotes.

I'm glad I caught the live stream! I LOVE it when you do it early.

Feeding tubes are amazing but frustrating. My GJ flipped around from all of my coughing, and we didn't know when it happened. My feeds backed up in my gi tract, and I ended up aspirating feeds into my lungs. So a J tube may be the best option for you at the moment! Good luck, Mary!!

Change is tricky for sure! I was scheduled for an NG tube, and it was cancelled. I found out last week that they want me to have a GJ tube instead. So now just waiting for insurance paperwork to clear so I can be put on the schedule. Crazy, but amazing how more information can change your perspective about the procedure. I feel a lot better about the new plan and less anxious then the original plan. I hope your plan gets sorted out for the best option!

Mary, as someone who has two chronic illnesses I know it sucks when treatment plans change. I will keep you & Peter in my prayers and ask God to wrap you in his majestic arms. Love you guys & Oliver too. 💑🐩🐶 I know the poodle is shaved all wrong. Ollie is much better looking.

I am glad peter looks better and Mary good luck stay strong xoxo 🙂❤

It's cold and snowy here 🙃 I was enjoying the warm weather a couple weeks ago and was hoping to have a warm spring break...But this might be my last snowy winter for a while depending on my next step with college/vet school so I'm just going to enjoy it while I can!

That makes sense what the dr is saying. It's so good they are really thinking this through for you. Our sons GJ came out 6 times in two weeks and he was not sedated when they tried to replace it. He is back to the g tube but if he ever needs a GJ it will have to be surgically placed g and a j.

Two things that are forever. Struggles and Hope. Struggles will come and go but Hope is Like Love ( in my Mind ) a bottomless bucket to which you can pull as much as you need. In this you can never run out. In the Frey home hope will always spring Eternal.

So relieved Peter's hives went away. Answer to prayer. Praying for wisdom for the surgeon and specialists in relation to Mary's J Tube placement. As always you guys are amazing! 🙏❤

I really need that sizzle sizzle frey frey cookbook

Mary and Peter I did read when someone comes from a warm place back into the cold your body can have a allergic reaction with your body. So that may have been what it was.

happy that the rashes are gone. Can't wait to see the new storeupdates 🌹🌷💖

With chronic pain (EDS) I find if I have somethings to get thru I can suppress the pain for a time, but the hours or day(s) after the pain comes roaring back from suppression. I'm used to it, I just have to plan for recovery time.

@peachi3sweeti3

7 жыл бұрын

Karin Ross exactly, that happens to me too!

@IMChrysalis

7 жыл бұрын

Fibromyalgia. Same idea, dealing with pain every day you just sort of adjust or suppress it when you need to but there's always a payback... and when you do have a good day, it's very hard not to do too much and end up paying a price for it that too.

programmable thermostats aren't overly expensive depending on which one you get. We love them. They even set for different times depending on the day so it can be earlier on Sunday for when you need to be up getting ready for church. You can still adjust it on the off chance something needs changed for a day or like long hospital stays where you can lower it and use hold to keep it down despite the program. Takes a lot of thought out of timing and waiting for the house to warm up for us.

I'm sorry your plans got changed, that has to be quite stressful!! I'm praying hard things work out great for you and you can get your j-tube this week hopefully?

Praying that everything works out.

Sending you warm good vibes from sunny California! Love your vids.

Mary! :) adrenaline AKA epinephrine does cause bronchodilation and vasoconstriction! So you are right, it probably does make breathing easier. That's why people with anaphylactic allergies carry an epiPen :) (so they can breathe easier during an allergic reaction)

Bless this channel 💕💗

I was on the live stream last night. It was a lot of fun!

I think the surgical plan even though riskier sounds logically the best solution..

yay re launching the store

I thought it was going to be a postponement because of the weather....... stay warm up there, guys! Southern CT is looking at 12-14 inches of snow tomorrow!

@Kestramoon

7 жыл бұрын

Annie the majority of MA is due for 12-18 (few 24+ and coastal differences and I'm in Springfield) 😖 stay safe!

16 liked in 4 minutes! That means people love you guys and the vlog even without needing to finish it!

My sister had both a G-tube and a J-tube not combined a number of years ago. She now only needs her G-tube, she can't eat by mouth (profound CP). She was uncomfortable at times, but it worked.Sometimes it would fall out since they could only use a silicone catheter which had no anchor due to her severe latex allergy. I hope this brings some peace. Please give Ollie some snuggled for me. I will keep you in my prayers. xoxo

You guys are so great at going with the flow! It's definitely an acquired skill strengthen by chronic illness hahaha! I was concerned about that with the GJ tube too! I don't have CF but mine continually misplaced and I just switched to a surgical J :). If you have any questions, feel free to ask! I vlogged my recovery experience too :). P.S. I actually audibly said awe at that clip of Ollie!

Yes, Mary, there is truth to that. I have chronic post nasal drip. I cough ALL. THE. TIME. Especially directly after I wake up (gotta clear those lungs) and when the sun goes down. And living in Kansas doesn't help the allergies. I've noticed that on days when I wanna take the grands to the zoo or where ever, my sinus allergies & post nasal drip doesn't really bother me but the days following? OMGosh. It's awful. I cough so much it makes me throw up too. And it will be bad for 2 or 3 days following the out door event, and then I'm back to normal with the worse of the coughing being morning & evening.

Sending prayers y'all's way.

If you have amazon prime, see if prime now is available! Everything you can think of they will deliver to your house in 2 hours! So much easier when you don't have the energy to go out or you just don't want to.

That kinda makes sense with the adrenaline thing Mary... When I got asthma attacks when I was little part of my emergency treatment plan was nebulised adrenaline... I'm not 100% of how it works in that situation but it can defs help!

I learned from a heat and air repair man it is more cost effective to keep your unit at a comfortable level, then leave it alone. It takes more energy to bring the temperature up or down than it takes to just leave it set. I know all the conservationist say to turn it down or up at night but this guy is an expert. He works on these units every day.

love you guys. I'll be praying for you guys and God's guidance on the best option for your health and feeding tube. Hope you guys are doing well! xoxo

The awesome thing is that even if they for sure decide that they want to do a single J tube, they can always add a separate G tube for venting and meds if needed in the future. So it's not like if you get the sole J, now you can't ever get another type of tube in the future if need be! I know exactly what the recovery time period is like and how frustrating it is. I'm still recovering from my trip from Tennessee to Illinois a few weeks ago! I'm just so unbelievably happy that you got to live your dreams with some of your favorite people by your side. When I watched the discovery cove vlog I cried because Not only did I know how much that meant to you but because I know what an amazing opportunity was like and to just be so thankful that God put the plans in motion for your dreams to come true. I hope my body cooperates when we are supposed to go on my dream vacation in may and I don't have to pay too much for it afterwards. Ps, You guys should think about making a printerpix photo album with your favorite pictures from your trip!!!

get ready for the snow!!!!

LEGGINGS!! Yesssss! 😻

looks like you'll both be stuck in the house for a day or so with the storm approaching Stella! good you went shopping.

May God's will be done, we'll see what the week brings up ahead. Peter it was so funny how you said "Mary tends to gravitate towards leggings" Mary you are in my prayers every day and every day I light up a candle thinking of you. Love you both❣

The whole state has been put on a blizzard warning, stay safe eastern MA friends.

You always remind me to take my meds when you shake those Comblers Thanks! 💁

Think positive!

I kinda hope you got the rose pants, Mary!

I had a GJ for two years before going to a g tube and a j tube. IR replacements of the GJ aren't that bad. That said I still went with seperate tubes because I had the GJ displace all the time and formula would back up into my stomach even when in place.

My heart breaks a little every time I see your Ollie. I had to say goodbye to my Buddy last Monday. He was a mini version of Ollie. I miss him terribly.

@MandieZangora

7 жыл бұрын

Angela Beasley I'm so sorry for your loss 💖

@angelabeasley865

7 жыл бұрын

Mandie Zangora thank you.

@natalieh5843

7 жыл бұрын

Angela Beasley I'm so sorry! I'll be thinking about you. Stay strong!!! 💪🏼🐶💚

not just with cf it's with any chronic health conditions. I'm constantly changing plans, schedule, etc due to how many dislocations I have through the previous night. or how much pain/fatigue, I can fight through, how many braces are needed or if it's that important to keep everything on the plan for the day. if my pots systems are really bad thatday, how much salt is enough, how hard do I really want to fight through. etc. and yes cf is also a factor in my schedule. it's really hard to schedule anything and plan it in concert stone for it to happen. haha.

I have the same reaction Peter had from shellfish - iodine. If I go to a seafood restaurant my mouth swells on the inside!

Good thing you bought groceries. Big snowstorm tomorrow!

My husband and I just had that exact same conversation about those exact same noodles at Target!

what's up with the pregnancy questions she's been sick for so long that it's just amazing how they can be so upbeat about such a progressive disease and that it is shortening her life everyone should be praying for her well being instead of wondering if she's pregnant

@junbh2

7 жыл бұрын

I know, it's kind of tiring how strong the pressure is on couples to get pregnant, and how much people try to bring it into almost any conversation. Even when she has such a serious disease, people _still_ constantly ask her if she's pregnant and wonder every time she has anything to say if that's it. It's really depressing. It's also a little mean if they actually may be sad they aren't having kids.

@laurahoward7126

7 жыл бұрын

I agree it's sad that such a beautiful couple has to struggle with cystic fibrosis but they both have such beautiful optimism it makes you feel like your life is so much easier because they show you how not to take the little things for granted and everything happens for a reason

@laurapiacentini9431

7 жыл бұрын

Laura Howard such a good point!

@station51kmg365

7 жыл бұрын

Laura Howard Maybe a few newbies have joined and probably don't know these things. just a thought.

Hey Mary, I have been taking care of someone with a G-J, and I think you might actually like having just a J instead because there is only one port on the end instead of 2, making it less bulky :) either way, I just hope you get something that works for you and helps you fuel you fight! Love ya babes!😘

rest up, eat good and relax.

There's probably an Asian grocery in your area - near Boston at least. Pad Thai noodles, Jasmine rice, sucked, etc, are super cheap and authentic. Pad Thai noodles are usually $1-$2. Fresh herbs are great too - i always get my basil from the Asian grocer when I make pesto - it cost me less than $1!

Hello there, I started watching your videos about a year ago and it's been great to see other people who are chronically sick focus on the positives, and make sure to get in a good laugh everyday. I think that's some of the best medicine. I have a feeding tube because of gastroparesis and nervous system disorders that cause me to be a barfatron. I started with a J-tube (and named it Jerome. Cause a new body part needs a name) and have ended up with a g-tube. I had the first one placed in IR with light sedation ( cause it doesn't do much for me but helps with the nerves) and a lot of local anesthetics as they did the procedure. With the Jtube I had problems with " migration" from barfing so much and nothing stayed down anyway. I don't know if anyone has suggested using a tube with a balloon as an anchor to avoid the migration type stuff, and if you can handle a gtube then you won't have to worry about funky anatomy getting in your way. You might want to check out Mic-key buttons which are fantastic tubes that can be replaced at home and at most require a trip to IR without sedation or anesthesia. They usually recommend getting a button after the original tube site has healed (3mos-ish). I know anesthetics among other things are concerning, so I just wanted to let you know it's totally possible to get tube procedures done in IR without meds. My tube changes are 5 mins from start to finish, with just a little discomfort sometimes, I'm also the winner of the genetic lottery and have a very complex medical issues, so I kinda understand where you're coming from. The one thing to keep in mind is I'm Canadian and our healthcare differs with quite a lot, but tube procedures seem to be very similar. I only have a few videos posted, but I hope they give you a laugh and lift your spirits. You guys are a fabulous little family, wishing you lots of love,positive thoughts and sunshiny days with a cherry on top. Just keep swimming! Sorry about the novel...

I think Mary was dreaming she was Alice in Wonderland, going through the lil door lol

I was watching a program on CF patients live 10 years longer in Canada than the USA.

Our snow is starting g!!!

Peter, you can get hives from cold weather. Used to happen to my grandfather all the time. 70 in Florida to 7 in Massachusetts???

Good job guys!! Stay strong 💪 I will never know how you guys stay so positive, but I makes me laugh everyday😊

@jennaracine1653

7 жыл бұрын

Mia Folwell amen

God has a plan. stay faithful and we are praying

Hi I love your channel good luck Mary

I always am freezing when I return home from being in Florida or a warmer climate, even if it's not that cold outside! It doesn't help when the weather is really cold either! It's like our bodies get used to the cold as winter progresses but then being thrown into warm weather and coming back to cold weather, our bodies are protesting. lol Sending prayers your team comes up with the best plan for you.

@jaytee2642

7 жыл бұрын

Yeah, you definitely build up a resistance of sorts, to tempuratures I live in L.A. and when it gets down to the 50's, I'm really cold. Down to the 40's? I'm freeeeeeezing. LOL But I know that for people who live where it snows, 40 would be a heat wave.

@pianiannie4224

7 жыл бұрын

That's funny because the coldest I ever was in my life was in San Diego and it was 40 degrees! Seriously, in WV we have had 20 below in the past and I swear I wasn't as cold as I was when I visited San Diego! That was a very strange experience! We dodged a bullet this snow storm. The Frey Life is getting plummeted, so far we have had about an inch. Actually, I'm kinda sad. I would have liked a huge snow storm before spring hits because we know it won't last for months.

ask about a MIC-key Button Mary! my son's liver is outside of his body, he has an omphalecele, he also has his spleen in an odd position but his MIC-KEY is like a gas cap attached to your outer belly and a balloon holds it in place in your stomach. changed pain free every 3 to 6 months. I really think you would Benefit and it can be done laproscopic. usually out patient and only 20 to 40 mins

I need to get a combler but I always forget when I actually get to the store because I'm so easily distracted lol

Coughing up properly is very important to get the sputum out. This is why mornings are hard for you. Have doctors every discussed "cough assist" with you? To have when youre asleep?

the cold ALWAYS exarcibates my coughing. Using a scarf helps a lot.

Yay hay mary I found out I had asthma during the summer and it been really hard not having energy I love your video

I have vocal cord dysfunction and most likely copd so I cough a ton too! My body does the same thing when I am excited about something. My husband and I moved last Saturday and I was able to do stairs and help bring things and run around like a kinda normal person which like never happens and then I was in bed almost constantly until Friday.

You must have been sweating with both coats on in the warm car! I hope the doctors will figure out a safe way to have the surgery:) if not, I hope you still will have a great appitite!

I'm keeping you guys in my prayers...whatever happens I know you will get through it, but I hope you have answers and a solid plan in place soon! Mary, did you get the rose leggings? they were cute and I think they'd be the perfect addition to your legging ensemble!

@thefreylife

7 жыл бұрын

I was recently given a pair of rose leggings, so I'm set, but I thought it was cool that they were similar to my new ones :)

Epinephrine or (Adrenaline) is a vase-dilator. It enhances the vessels capacity to hold blood, while increasing flow through increased HR, and BP. It's certain that one's lungs would have similar effects while on either an Epi drip (IV), or taking it in pill form.