🏥 MY PORT STOPPED WORKING! 😱 (10.13.17)

[@thefreylife]

Sometimes days don’t go quite as we had planned or imagined...sometimes for the better and sometimes for the worse. Let’s share a time when our day ended up BETTER than we had imagined...like when you find an awesome deal at the store, or you get a super refreshing nap, or you meet a sweet dear and feed them corn. Cant wait to hear about a day that turned out really happy!

[@artastic_23]

The Frey Life You guys are so cool! I have Asthma, which is a lung disease but I don't go on IV antibiotics. One time I did because I had pneumonia which was awful. I felt horrible. It was probably also the pneumonia, flu, and fever. Do you feel absolutely awful while on IV antibiotics or do you just feel slightly worse than usual? Just curious. Hope these IV antibiotics help you.

[@LansdowneLady]

Glad you are feeling a bit better now Mary. Please God...let that be the last port-prob that she has over the next few weeks! Hope you don't fall out bed now that you can sleep at the edge! Haha just kidding!😁

[@katierippon9387]

My day turned out happy when your video came up! And yesterday turned out happy when I felt good when I was running (I'm run XC and hurt my hip about a week ago and it finally is feeling better). I am 15 and have CF, and I am finding you guys so inspirational!

[@keric3673]

I love and I’m praying so hard for you guys!! A day when I ended up better than I imagined was in April when I was able to go to an Orioles game by myself on the light rail. Only game I was able to get to this season, but it was a huge thing to go alone.

[@keric3673]

Omg Ollie speaks! 😂

[@deannaa2297]

Peter should totally become a nurse some day, he'd be great with all this experience and his kind nature!

[@lindamarshbts-army774]

I think he us one seeing previous vlogs

[@Jane_Snow_]

Mary, I love how calm you remain, I am a bit hyper with anything medical related, when I'm about ready to freak out, I just think Mary. Mary. Mary. Lol.

[@darkbluematter1753]

Phew! That was a close one! BTW, you guys freak out so calmly, LOL 😊

[@brendabrierebriere9406]

Peter is such a wonderful husband, Thank God for him, I have tears because your such a committed couple...Blessings to you both and the pup

[@rockingmybestlife4192]

When I first started watching you I would have never thought years later I would have a port and be going through Chemotherapy. You have taught me so much about living a positive life through everything we are faced with. I have learned so much through your attitude. You are truly an inspiration. People ask me everyday how I am still smiling and functioning at basically my normal self. Truth is because I have learned we are all going through something. Thank you!

[@sboyd1711]

Do they have a video on cost management of chronic disease? Think it would be really interesting to see what sort of costs are involved in just the every day life

[@allisonward958]

You all are so brave! I would’ve freaked out for sure!

[@bobbypreston1476]

Both of you are amazing people, the love you have for each other brings me close to tears whenever I watch your KZbin. Thank you for proving to me that no matter what life is worth it. Love from Canada. Hi Ollie, you pretty boy.

[@threwupsanddownswchronicil3357]

My win for the day was my nurse came an accessed me for saline infusion spent morning sick having IBS an tummy trouble but it has passed for now God is good!

[@Joy.Elizabeth]

Jessie Williamson amen! Praying it continues to stay away!! I'm dealing w that now(ibs-c plus stage 4 endometriosis on colon n bladder :( ) it's horrible so I knw what it's like when u get a reprieve! Really hope it lasts for awhile!

[@raeward8092]

My triumph is that after a week of depression and anxiety I was able to cope with some housework and some cooking today.

[@kellilarson6128]

Good for you!

[@nualagood2105]

Proud of you!

[@samarie7176]

Good job! You're awesome!

[@peaceandharmony7117]

Rachel Ward I have anxiety and depression too! Stay strong sweetie!! 💖💖💖

[@charmedirish1]

Rachel Ward Good job just keep doing what you can do I deal with ptsd and anxiety issues as well so I know the feeling.

[@lydiabrewer1053]

I’m sure you have your method worked out, but as a nurse I find it so easy if the patient lays down! Sitting unsupported makes it harder.

[@cassielynne2001]

I love the ending of this blog where you guys are just sitting and talking about your day together.

[@Brooke52528]

Peter definitely wins Best husband on the internet. What an amazing guy! Love you too Mary!! 🖤🖤

[@georgiawalton690]

How do you guys stay so positive in such trying times ?

[@leeleah8167]

Georgia Walton that's my question too

[@joet5839]

I was thinking of you guys last night as I was at Portillo’s slamming down a cheeseburger, fries and a chocolate cake shake!❤️

[@JennCampbell]

Sending you guys prayers and happy thoughts. Be well! 🙏

[@imacrafty1]

Feel better Mary. Bless you Peter for being her rock. I am sending you both love and prayers.

[@Kimmeranne]

So glad you didn’t have to go to the ER. I am still coughing from Acute Bronchitis. Mary, I give you props for dealing with this on a daily basis. You are such a ROCK STAR!! Prayers for you all and hope that this will get you to feeling a little better. Xoxo

[@Silv1a]

Peter is such a beautiful husband. The way he looks at Mary, you can really see the love he has for her. It’s so nice to see. A real man of God.

[@ooXChrissieXoo]

aww Peter is so sweet!

[@beccachambers4007]

Peter is brilliant. He’s so good at helping with you at all your medical stuff. Love your channel so much, it helps me get through the hard days so much, especially when I’m in hospital!💕💕💕

[@kellyb228]

Peter you're just amazing!

[@MadamePopova]

Your love and teamwork is beautiful to see.

[@alishawoods4374]

You 2 make me smile through the whole video on every video. Your love for one another is amazing. Both of you are so strong!

[@pattymullin8515]

Rough day, beautifully handled. You both are such an inspiration...and Ollie too!

[@sarahbender9548]

I thank God that you married Peter. He is not just a great husband but a great nurse. He sure loves you, because he new that when he married you that he would have to help you with your CF and he did not mind helping you. What a good christisn man. Love you Peter and Mary. Sarah Bender NM

[@brendabaum6442]

My win...I deal with chronic pain and was able to go for a drive with my hubby to see the fall leaves. So beautiful! And we went to a small grocery store for some essentials. Best of all...pain free! Thank the Lord for today!

[@wietskevaatstra9847]

Bless you Peter for all you do for Mary! 👍

[@katrinamoore1221]

Hi Frey Life, Mary you have an AWESOME husband!!!! My husband would be terrified!!!!! What a Blessing he is!!!! Prayers to the three of you!!!

[@johannachalk2532]

My nephew had to have surgery to fix his port. Hang in there prayers always.

[@hannahberger4784]

Mary, you are a strong amazing woman who faces life's ups and downs with a smile on her face ilysm!!!!!! You are amazing person! Love u

[@janetsutter5430]

Hey....no kissing your nurse!😁

[@dianeluke1746]

You guys remind me of me and my hubby and when we do IV's at home and need to problem solve. We often say, "You have to laugh, or you will cry!" We use laughter to get through painful wound care dressings amongst other things. I'm very thankful for my Dave, my love, who is amazing!

[@natobxo]

girl you are SO strong!!! team work at its finest! hope the home treatment thingy goes well♡

[@TheOLC123]

Mary I applaud you and your strength through this journey I totally do and I can never totally understand your struggle. But I also want to applaud Peter! As a spouse with a newly chronically ill spouse seeing your daily life gives me strength! Seeing how you, Mary and Peter live your life with a chronic illness gives me hope for life for myself and my new husband

[@MsRespect247]

that’s my favorite saying when the going gets tough, peter! “If your not laughing, you’re crying”! I tend to hide my frustration through humor and anxiety laughing!

[@SenecaRed]

Man, when I saw the title of this I freaked out!! I'm so glad all is well. Praying for a better nights rest for you, and no more port issues

[@TheBeesKnees1993]

You guys are just incredible! I love watching your vlogs. The amount Peter does and is willing to do to help blows my mind too. Sending lots of love and hoping the IVs make you better.

[@terristhriftyfinds]

Such a great husband you are Peter, and Mary you are such a trooper, glad everything worked out! For me, the day I thought that I was totally broke, a single Mom with two kids, I was crying in my car, but then I checked my bank balance, and my child support finally came through!! It was a hard time, but we survived by God's grace. 👍🏽👊🏽

[@DanaCook60]

My win is your port started working! My daughter had a Power Port and Had multiple difficulties to overcome with it. She no longer has one at All so that’s another win for me. ❤️

[@tashainjena]

I wear an insulin pump and stick myself every three days or so, but seeing what you go thru makes me nauseous. Having to access that port just gives me the shivers. Thinking and praying for you constantly. Love you guys.

[@BrownEyedBeauty2008]

I'm pretty new to your channel but I just wanted to say that I love you two. You can tell you love each other just by watching you watch each other talk. It's truly beautiful and rare these days. You have been in my prayers since the first time I saw you guys and you will continue to be. Stay strong. ❤️

[@SummersPlace]

Glad y'all got your port working Mary. Sending hugs and prayers. Love you guys. ❤❤❤❤❤

[@Livingtheinvisiblelife]

Ooh when Peter said when you don't laugh you cry. That would make a Great decal

[@2listening1]

Oh you guys I'm so glad you got it working again!

[@toshatockwhissel1293]

My mom had a pic line and I remember when she had the antibiotic balls. Brings back memories. She passed away July 2015. 😢

[@puggle3217]

Tocko Licious I'm sorry 😔

[@toshatockwhissel1293]

luna1002: Thank you.

[@Idellle]

😢

[@jenesimar]

Oh no Mary!!

[@Katie_Jo_21]

Can I just say? Mary has some high pain tolerance. That had to be painful over night. You poor gal. Sending you love and hugs. 🤗❤

[@irelandmccormick8650]

To answer the question in the begging of the vlog, My win for today is that I was able to begin to start some of my missing work....putting emphasis on some. Some background story on this is that I have been absent from school for about a month now because of some health issues that have come up...that no one has been able to figure out...so now I have to go to a couple of specialist (allergist and Pulmonologist)....but i am also waiting for insurance to come in sadly so now i just get to wait and watch my health and stuff slowly decrease until this comes up.... On that note my insurance comes in about 2-4 work days....they say....I'll be ok though.......I have my faith in the lord that he is watching over me every step of the way... I also just wanted to thank ya'll for all the hard work ya'll always put into the vlogs and stuff. These vlogs have been keeping my spirits high and just keeping me on a good note on a daily basis so thank you...so...so...so much

[@irelandmccormick8650]

recycleonwednesdays thank you...

[@lagomaster111]

So very thankful that you both figured out the port malfunction! I have had two power ports and needle placement is definitely key as you both know now. I am so thankful I don't have to do accessing, flushing, and deaccessing this month. I have all day appointments and iv treatments on Halloween at Mayo Clinic. I like occasionally not having to do the dirty work. Lol! Way to go! You both are a great team.

[@makeupgirl2253]

Love you guys. Love watching these videos. Hope your doing ok

[@cathyford6385]

I so appreciate you guy's sharing your life!

[@gillianjames3558]

Hi Mary & Peter!! It’s been awhile since I’ve been on your channel! I started watching at about 500 and was here with you when you hit 100,000!! I love to see that you guys are doing well. going to start watching you guys again because Mary is so so inspirational.

[@sicknote4557]

Hey guys, I always watch your vlogs before I go to bed.(it's 2:15am over here in the UK now) I just wanted to thank you for helping me always end my day with a smile. My achivment for the day is that after having a stomach virus for a week,and having a SERIOUS battle with my mental health( depression, anxiety and schizophrenia) I was able to muster up the energy/will power and take enough medications to go back to wheelchair tennis training. I'm wheelchair bound due to Spina Bifida and playing wheelchair tennis is a sport where I'm equal to others. I have been finding it really tough recently as with my long list of medical "issues"( I have Spina Bifida, hydrocephalus, epilepsy, IBS, a Really poor immune system and MH stuff and ASD) I've been thinking that God has forgotten me and he's not hearing my cries. I'm seriously struggling to figure out what I need to pray cos I feel lost. But wen I see wot Mary has to battle everyday I'm reminded that others have it harder than I do. Keep up the great work. Sending you, Peter and obviously Ollie boy LOADS of love hugs and prayers from over here in England 💜💜🙏🏼

[@dizzycowuk]

I'm glad you got your port to work again

[@brandyhagler3138]

Mary and peter you guys are so adorable together

[@sophieleanna9391]

I always freak out over medical stuff; but since I became a fry life member I'm picking up on being more calm and positive and doing what you think you can't do. Glad you didn't have to go to the ER!

[@toshatockwhissel1293]

I *love* how calm you guys remained. Most people would be panicking & frantic. I am like you, and remain calm, and everyone is always shocked LoL. No matter the situation. Rather it was me cutting my thumb all the way down to the bone, having a 9mm kidney stone, my appendix rupturing, etc. I'm always calm & remain collective. And when I go to the hospital they're all "she's fine. There is probably nothing wrong" because of how I am, then they find out what's wrong and are "OMG!" and panicking for me LoL.

[@misay472]

this morning I just woke up feeling good. it's rare for me because I have PTSD along with other conditions that make life difficult to handle. but today I'm going to get a visitor, a dear friend, and I can't wait to see him! :)

[@vanessamaya5464]

So glad you got to fix the problem. Er is never a good trip. Iam so amused with how you all know all those big words and define them so cool. Love watching you guys.

[@deecates7715]

Mary and Peter I just wanted to say I am so glad you were able to figure out how to fix things today and didn't have to go to the er. And also Ollie is just so adorable. I am also trying to not have to go to the er today/night. I have been having very severe abdominal pain and nausea/vomiting today and my headache is getting very bad too. But it's now 8:30 pm here and normally I stay up all night but I feel exhausted so I am going to bed. Goodnight

[@kevinphair8299]

Take care guys. Praying for you guys

[@abbyshow9948]

I did ballet with Mary's sister for 7 year! A few years ago I helped Rachel move and I played with Mary.

[@MinecraftMama]

Your husband is remarkable - and so r u Mary

[@dxshnn1]

I thought of you in church this morning when Our Pastor played the song By Mercy ME "Even If" When I listened to the song and then Bart's testimony of writing the song, it really brought the meaning to life. Even IF........ God is able and can speak the word to heal CF but Even if he doesn't, He is still worthy!!!!

[@bettyarmontrout3218]

I am so fearful of hypodermic needles I have to turn my head every time Peter accesses your port. Just knowing you have to live at times with a needle in your chest proves just how strong you are. 😊

[@FunsizedStyle]

Whew, I’m glad you were able to avoid a trip to the ER!!

[@karenthompson895]

So glad things turned out well. I'm so happy you have the Lord to lean on. God bless you both. 😃💖

[@expression3639]

Mary, sometimes those positive pressure caps can be faulty and prevent flow from going through. I've had a few of them.

[@NinjaJoanie]

Glad your port is working again! I occasionally have to use activase for mine to get blood return. Some medications can promote clotting and such, so you push in the activase, wait 30 min, then pull it all back out. Works like a charm!

[@ObsidianVormund]

I hate when tings don't go as planned. I hope things keep going smoothly for you.❤️

[@allyandkaena1282]

U guys are the best

[@MandieZangora]

I’ve been having that problem lately and sometimes it means the needle is too long and it’s pushing up against back or wall of the port or it’s too short and it’s not staying in the silicone. You guys definitely did all the right things including putting all that gauze up under the wings cause hopefully that’ll keep it from pushing in too far and causing any funny business 😂💖 also, I totally was confused when you were explaining the occlusion alarms too since I’m hooked up to Iv fluids almost 24/7 and I always get the air/up occlusion when there’s a problem above the pump and air filter and and down occlusion when I forget to unclamp my line 😂😂😂 but you’re right, it’s hard to keep all of this stuff in our brains with so many accoutrements and so many symptoms/changes/meds/diagnoses/doctors to keep straight and remember!

[@alexandriablock152]

I love Mary ❤️ I wish I was as tough as her 😊 keep going girlie!

[@ashleymo793]

I love u guys! Stay strong and positive!!!

[@ailanisd8594]

I used to have the worst time with the mini loc huber needles. I use the gripper micro now and have no problems. The mini loc stuck out soooo far and hurt. The gripper micro leaves a blunt tip cannula inside and the needle itself is removed, so when your roll over on it, it actually doesn't hurt at all. The only thing that takes getting used to is that until the needle is removed you can't try to flush. The only time I have issues now with flushing is if I'm getting a fibrin build up.

[@BeciaIrene]

Hi Peter and Mary! When I saw the title of this video, I knew it was fate... I, too, have a port and it, too, likes to misbehave! I have Postural Orthostatic Tachycardia Syndrome (POTS for short), and I run IV saline every other day to help maintain my blood pressure, help regulate my heart rate, and help with my constant passing out. There was so much in todays video that I can relate to... From needles not being in position, to ports not flushing, I have the same pump as you even. I've made two ER visits in the last three weeks because my nursing staff hasn't been able to properly access my port (it's a tricky one apparently), and the first thing that went through my head this week was your saying of "Do what you think you can't do". I even said it to my nurse, and guess what.. she accessed it perfectly on the second stick. Ya'll are so positive in the eyes of things that try to intimidate. I've watched many of your videos, and each time I sit back and pray that I someday can see the world through the same eyes, and have the heart of compassion. Thank you so much for your story here on KZbin, and keeping us in it. I need to do what I think I can't do, and just try living each day as I can. Thank you, thank you, thank you.

[@TammyGrosso]

I totally agree with your comment that they need to get in between needle. I’ve had a PowerPort a few times over the past seven years. and currently have one right now for the past year and a half. Although I do think There might be something different with this PowerPort than the one I had seven years ago. I have had the issue you’re having, few times. and I swear, we were joking around one time, and I was flipping my body upside down saying maybe I should stand on my head. And it worked. When I turn back around actually started to work. So whenever it happened since I’ve actually laid all the way down straight down and then the nurse played with it a little bit and it finally worked. I think it had something to do with my repositioning of my body and repositioning the needle itself. But I totally agree that they need to have in between sizes of needles. That discussion has come up a few times between me and my nurses. And I’ve heard nurses talk about the same topic with other patients at my infusion center.

[@rentechpad]

Power ports allow you to put things in under greater pressure then conventional ports - they are built to withstand the pressure without popping the diaphragm but they don't need higher pressure to stay open or anything like that, Power ports hand long term slow keep-open rate infusions just fine. Also, to dispel Peter's concern - slow infusion does not increase the chance something will clog up vs faster infusion. Actually as long as something is moving through the tubing you will not clot up. That is probably the though behind them giving Mary an infusion to keep open between antibiotic infusion as the alternative is to clap after heparin flush solution is used (different then the heparin you de-access the port with). There is some thoughts that heparin flush on a regular basis is not good for the patient long term especially if its more then 1-2 times a day. My daughter gets her antibiotic infusion once a day so is flushed afterward with heparin flush and locked until the next antibiotic. When they step up her antibiotic to more then once a day then we use saline as a keep open instead of hep-locking the line. Now while Bard Power Ports are not going to clog up unless things are under pressure they can be sensitive to a couple of things and one of those things is not being accessed dead-center. If you get too close to the wall the port can act like its not functioning and will not return blood and will not flush. I know you are hoping that pressure on the flush will get the port working but if there is a clot blocking you constantly trying to force flush in there could be dangerous as you don't want the clot to be forced loose and into you - which is why you should be pulling back to test whether it patent or not not trying to force fluid in. Huber needles, especially as they are horizontal needles can slip out of place, especially if not placed well to start with, much easier then your normal IV needle and while a de-accessed port can be treated almost like its not there you really need to be much more careful once a port is accessed and be checking it for needle malposition or movement regularly. I actually use steri-strips over the needle in a X to help hold it in place before putting on the dressing if the port is going to stay accessed for the week. This will help keep the needle from movement or backing out of the port due to just everyday activity. I notice Mary is not wearing a mask while you are accessing, and de-accessing her port. I know she thinks she is not breathing in that direction but if you watch your video you will see that she is actually breathing on the skin once you prep it. I know many patients don't like a mask but its just a short time inconvenience and it really does protect against an infection that you really don't want. And Mary should actually be a good example and wear one as her videos are shown in many children's hospitals to kids getting/having ports - and they notice she is not wearing a mask and ask why they have to :)

[@penelopepolinsneemeyer4757]

Thank G-d you were able to sort that pesky tube out xxxxxxx

[@lynnrose7562]

The both of you are amazing together. :)

[@MayimHastings]

We all need a Frey Life lifeline button for when we start to panic. Just beam in Peter or Mary (or Ollie).

[@LakeshiaShanielle]

My port does that all the time then I have to get it infused (cleaned) and that takes FOREVER!!!! And every time I get it flushed I have an allergic reaction and mines never give blood back. YALL ARE SO AWESOME

[@awinkie12]

OMG I was in the ER yesterday because my port stopped working!! I'm also starting IV abx on Monday...not for cf but for lyme disease

[@denisewright5650]

I just got out of ICU yesterday had surgery to remove a mass from my chest! So my chest is cut open 10 inches! The Dr. did not give me no pain pills! So feel sorry for you with poking a needle in your chest! Hope we both feel better real soon!

[@haleyrose_elm]

I feel like if and when my port is ever stopped working I would be so scared like what the heck, but I try to just remain positive knowing that they can take care of it

[@dinkfiorini]

Peter you are amazing! You guys are the best couple! I love you guys ❤️

[@Hanni49er]

Ollie barked..why...I wish I could have my own personal Ollie lol cute Bark Ollie...hugs Mary and Peter.

[@wolfsrule100]

Glad you got it working!

[@supermanfan2005]

Had my port replaced less than two weeks ago after having similar issues (port hurt, needle moved so much that it would stop flushing/infusing). My surgeon explained that a significant part of my problem was that placing it over soft tissue (chest wall muscle and breast tissue) allows it to move more. Your old port was in a more stable location over your sternum, which prevented this problem. Also why my new one is up against my clavicle, providing more stability (my old one was in a similar location as your new one). It was recommended that I use a slightly longer needle to allow for a little movement so that when the port sank down into the tissue, the needle would be long enough to still reach the back of the port. Which did prevent the needle from moving or coming out, but wasn't the most comfortable. Location, location, location.

[@sheenatozier8343]

Praying for you both

[@lentheschutten7949]

I totally understand! Heart rate of 140+ 😅😅😂❤ my NJ tube was plugged last week and I felt exactly the same!

[@lentheschutten7949]

I have a diffirent brand bit the sound of the pump is exactly the same! I wake up at night if I don't hear it!

[@chrissys8474]

team work!! you guys are amazing great vid!

[@oat_birdflash962]

Good job guys !!

[@kevinphair8299]

If it works do it. I hope you feel better soon

[@HorrorQueen96]

I’ll be getting a port probably this coming week I’m nervous and I’m getting married on Halloween

[@iamellie1175]

congrats hun!! thats so unique to get married on halloween (is it a coinsidence or does it have touches of halloween fun in it?)

[@gboneske]

ports are easy! feel free to message me

[@brendabrierebriere9406]

Wishing you and you soon to be the best...

[@xdronxdronx]

Hope your port placement goes well and congrats on getting married! Halloween is so fun!

[@HorrorQueen96]

Pammy M there is a story we got together on Halloween and our all time favorite movie is nightmare before Christmas it will be nightmare before Christmas themed wedding I make videos I uploaded one last night that shows what my dress looks like ❤️

[@jj4christ]

My port acts up sometimes too. This past week though my nurse got instant blood return. I now assume the position of course. I have a power port too.

[@cliffh5]

What I have seen is that sometimes the needle slips partially out of the port, which causes it to get plugged up. Pressing it in fixed my problems.

[@eej1983able]

Im not feeling well at all right now. My stomach is upset and my head hurts and I just want to cry I'm so fed up with this. I love watching The Frey Life though and my stuffed Ollie boy is so precious