Port-A-Cath Failure | Tears in the Parking Lot 🏥

[Vlog 6.6.23] - A frustrating day at the infusion center ends in tears in the parking lot.
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Welcome to The Frey Life daily vlogs! We are Peter & Mary, a married couple in our early 30's, showing the ups and downs of everyday life with #CysticFibrosis, a genetic lung disease that Mary was born with. In August 2019, Mary started a new CF medication that changed the trajectory of our future, and life has changed dramatically - including our son, Elijah, joining our family in December 2021. We also have an adorable standard poodle, Oliver, and a hairless sphynx cat, Harry. It's our hope that these videos can be an encouragement to to celebrate the little things in life and find joy amidst a world full of hard realities!
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[@ruthannolp8760]

It’s ok to cry especially when it’s frustrating. Yes, give yourself grace.

[@allisonlacey9964]

Oh Mary, I hear you. I am a clinical nurse in a large hospital. I just really wish the “management” could or would see the effect our “policies” etc, have on the individual patients (people, humans) we treat everyday. God bless your understanding and I really wish things would change for our patients. As a nurse, we hear you and we feel your frustration. Sending love from Australia 🇦🇺 ❤

[@natysm25]

That was probably difficult to film while processing your frustration and sadness, but know you made people like me feel less alone who are going through the same thing. As someone with a chronic illness trying to take care of my self to be able to take care of others can be challenging and when something halts you from doing that it’s the most hopeless feeling❤️🥹thank you for being vulnerable with us and so relatable Mary. Tomorrow will be a better day ! Hope everyone has a beautiful and peaceful weekend!

[@_ohley]

People are more important than policies. It’s a shame it’s not recognized that way in our health care system.

[@vanessachristopher1515]

Girl, I have cried in the car in the parking lot SO. MANY. TIMES. It's the most therapeutic place to cry-sing at the top of your lungs, or cry while having music up trally loud that helps you cry MORE. Do it, girl! 🎶All the pretty gurls cry like this...🎶

[@JonesHonestly]

Me too! Singing,,,🎼

[@susanboatman7913]

Mary, give yourself a break. You really busy. I'm amazed at energy you have.

[@imogenoliver]

Oh Mary I’m sorry you have to deal with crappy health stuff on top of everything else. You’ve been doing so much for everyone in your family and your family has had a long time of transitions but I’m glad you could alert still get the infusion and that you can step in and figure out this port stuff before it can get any worse. You got this, you’ve got a strong support network with you and I hope your port is getting better now ☺️.

[@unicorngurl89]

While I have totally different health problems, mine are chronic as well. I cried in the clinic parking lot 4 days ago. It's OK but it feels overwhelming in the moment. Hugs

[@caseyyaw886]

Yes! Yes yes yes yes! Policies are important but people are important! I think there's a lot of medical professionals who need to have training on that. My port likes to be a drama Queen too. Nothing about my chronically ill life is normal. It's ok to cry because being chronically ill is a full time job and you never truly get a break. ❤

[@eileenmcdonald1599]

policies ended up in place because so many people do not do as they are instructed than blame others for negative outcomes. If all are given the same policies than no one can say they were treated differently.

[@lenac7655]

Buck up Sweet Mary...God's blessing you with strength continually. ☺🙏🏼💕

[@claudiaholland2603]

Mary, you are so strong; hats off to you. Your tears are one of the best tools in your toolbox.

[@kristi1894]

Tears are tools in our toolbox. What a great perspective. I really needed this. Thank you for sharing!

[@bgmaple47232]

We love you Mary. Tears are therapeutic. It is okay to give yourself permission to cry. You and Peter are doing a great job as parents. Trust in the Lord. He is in control.

[@zezella03zezzie57]

I feel so sorry for you. I get IV Infusions once a month and have never had them dig so much that it hurt .... as soon as it starts to hurt they stop and try a different spot and get it done.

[@JonesHonestly]

❤ Dear Mary, We all seem to be saying the same sentiment here! We are grateful for you sharing with us your journey and your heart! You’re a beautiful person who shows strength and weakness.. you’re relatable.. and genuine. We pray for your continued strength and success, and give God the Glory! YOU GOT THIS!

[@snetterpie]

Mary when I got my port I had to have it flushed and heparin iced every week for two years. Now it works like a dream and only gets that door hinge clot when I’m dehydrated. I’ve had the same,port for 9 years and it was the best decision I ever made. They were digging in my feet for veins at the end. It was an easy decision to get it by then. Hope you have better luck and don’t worry, we all forget things sometimes.

[@janicehellzen8765]

I’m sure I speak for everyone when I say all I wanted to do is reach out and give you a huge hug while watching this. The only thing I hope is that since this video was filmed a while ago that when you got home and ate and loved on those babies and Peter that you found clarity. You are a problem solver and I know you decided on the best route forward. Hugs from MD ❤️

[@laurmichelle9560]

I haven’t caught up with your channel in a while and I realized as I started this video I’m wearing my “Chronic Overcomer” shirt today 💜

[@Tiffanyshantay]

I've been on a medical journey with my mom for nearly the last year and I totally understand the medical frustrations that come with it.

[@melissa-Ann]

Take allllllll the grace you need Mary. When you started to cry, I just wanted to reach thru the screen and give you a big old hug!!! 💙 Since its not possible, sending virtual (((((hugs))))) to you ((((((Mary))))). You're braver than you think!!!! Skip the one moment at a time, its more of one breath at a time. ((no pun intended)) As much as its frustrating, you got this!!! It's OKAY to cry. You're human, not a robot. (((((Mary)))))

[@ginamcknight8115]

Ditto

[@traceykinter4899]

Thank you for being so real. I’m sorry you have to go through this. I’m sure your going to go home and get lots of hugs from the boys.

[@first2121]

I havent closely followed you guys in a couple years and it's wonderful how healthy you look and sound

[@norajung4513]

I am so sorry you are stuggling with you port. Dont you ever feel bad for crying, you needed to. You are doing so much in this season of life. I am so proud of you for doing everything you do. You are so strong and resilient. Take all this one second at a time if you need to. Sending lots of hugs and prayers for you.

[@marypennington6519]

God bless you Mary blessing God above ❤❤

[@donnaj.1634]

((((Mary)))) this virtual hug will have to do …. You are an inspiration to so many. We love you and want you to know you make a difference in our lives. ❤

[@jeangreco9561]

Oh Mary !! Feel free to vent to us anytime you wish! Also please give yourself grace, you have a lot on your plate with Peters new job, and the little ones. I have been a nurse for 17 years, the last 2 as an Infusion RN, and I feel your pain & yes, people are more than “policies”, and we wish we could do more all the time… I hope you get things resolved and your port starts working with some tPA , I will be praying for you!! Love & hugs from WI ❤️🥰

[@annaquirion9073]

I am a nurse and have always struggled with rules/policy versus humanity. It is very difficult to follow protocols that don't appear to be patient-centered or just don't make sense. I'm sorry you had such a hard day. ❤

[@tellem372]

I often say that we have to know the protocol and understand why it’s there and then understand when we should break it. (This is both a clinician and patient perspective!) Really glad you actually care!!!

[@eileenmcdonald1599]

I know you have been very diligent with that port. So you are not to blame. So give yourself a lot more grace. I never wait more than 3 days to hear from any supply or med company. Just because I do not want them to forget it in a pile of other stuff. I always apologize when calling. I just tell them I'm afraid I missed their call or have had trouble with my phone.

[@penelopepolinsneemeyer4757]

Oh Mary-girl. What a nuisance. I pray that the port can either be repaired or replaced very soon. ((((((Cwtch)))))) xxxxxxx

[@alleedanells6343]

Sometimes smiling through the frustration isn't what you need, cry if you need to. Remember you are a light to this world so, take a deep breath, thank God for you beautiful family, and keep moving forward. Sending you love and prayers

[@alexandrak3847]

Thanks for being so real and honest about the struggles. It’s okay to cry and feel sad sometimes. You need to take care of yourself to take care of your sweet little ones. Praying for you!

[@debbiefilbrun2508]

You are the epitome of grace! It is perfectly okay to cry. I do the same sometimes when I am angry or frustrated.

[@barbhelle5481]

It is ok to cry. Sending prayers 🙏

[@carolynlong9148]

Faith will be with you and you will prevail God bless.

[@tammyrockhold6111]

I’ll be praying for u sweet Mary! ❤️🤗🙏

[@user-gq4xw3fe2s]

So sorry for such a frustrating day Mary. You are such a strong young woman and have faced this disease your whole life. You will work it all out with your Peter by your side. Take some calming breaths and remember the One who loves you so much and will never let you down. I think you are amazing taking care of two babies, a dog and a hairless cat , the house work, cooking meals and being a supportive and caring wife to the man you love. Give yourself some love! I think you’re doing great. Cry sometimes. It makes you feel better and helps the stress to go away. I care about you and am saying some prayers now for you! Hugs, Grandma Debbie on my hubby’s iPad ❤

[@janvan4424]

Sending hugs, Mary❤

[@mvjkk79]

Prayers, love and PEACE! Blessings

[@kimduncan427]

I completely understand… You have so much stuff that you don’t have control of and it hard when you do have some control that it goes wrong. You’re the strongest person I know!! Thank you for you’re testimony walking in faith

[@janetdamboise6225]

Awe I'm so sorry that you're having to go through all of this Mary! All you can do is give it to God and he'll be there for you. Remember Do What You Think You Can't Do! Love you bunches!!

[@klutzykate123]

Absolute Grace 🙏🏼‼️

[@robzieg5544]

You are just amazing. I love your attitude towards life. Stay strong!!

[@CWengrovius1420]

You did an amazing job of deciding what is best to do at your infusion center or what to do at a later time for your body! I’m keeping you in my prayers!

[@williamsfamily7024]

Give yourself grace..... every day!!!!!! You are amazing and a great momma.... you need a new port sweetie...see what options are ...one day at a time... keep on going beautiful for YOU and your family....love you all

[@tonyab.2822]

Sending you strength and love.

[@christinareents9321]

I'm 4 mins into the video and all I can think about is.. "New Season" also could mean health being better so you can focus on the kiddos and then with your self "Grace" you definitely deserve that! However this may mean it's time to really look into a new port for preventative measures in the future and making it easier for you in the future for your new season of life with 2 kiddos!! I know it's so much to think about but prayer works and you all know this so much more than a lot of others!! Love you Mary you got this woman!!

[@stephanieburrell4200]

Prayers for you and your family 🙏 ❤️

[@VMeral]

Take care Mary, it’s okay to feel sad and frustrated at times. You’ve got so much on your on your plate right now. It’s okay it’s okay, you are doing so well

[@Jen-zz7nv]

Sweet Mary. I'm so sorry that you are having to walk through this. I totally relate to your tears and frustration because its hard getting through it this time and having to deal with it again next time because it never gets resolved. I just had this happen again this past week. The light in it is this, the Lord doesn't waste our pain, he's showing me areas where he is at work in me and it brought so much peace. I pray that he pours his peace over you and this situation gets resolved. ❤

[@jdhenk]

Prayers Mary🙏🙏🙏🙏

[@Renee445]

Just wanted to give hugs! I know how difficult it is when you have health issues going on and you have two littles at home that still need a lot of love. It can get overwhelming for anyone! Hang in there, Mama. It's okay to cry. I'm crying just thinking about what you're going through!

[@kathyking8675]

Thanks for sharing I'm sure it encourages people who are going through the same thing I love how you share your faith

[@marilyndekker1541]

I remember when you got this current port in Boston. Celebrate the little things. I need that tonight

[@maddieadams75]

You’ll figure it all out, no one knows Mary better than Mary.❤

[@tdecker2937]

Bless you!! 💕

[@biddiemutter3481]

I hope baby hugs helped. Lots of love

[@deborahmundt5140]

Hi Mary you going to be ok. Try not to stress to much. I will be praying for you. ❤😊🙏

[@mikegainer8288]

Praying for you Mary!!! Also for your family!! Love from Kris and Mike

[@karenpope118]

You really need to just focus on your health-baby-hubby-not take on this fostering -it’s too much with all plus now Peter having a full-time job -and let’s remember your one fur baby and no fur baby -you cannot do it all -take slow -slow down -prayers-love-caring thoughts -💗🙏🥰💐🫶🏻😃

[@user-pp8ic9jo7n]

I agree she ill and taking on another child is shocking

[@openlybookish]

Honestly I agree Karen. I know Mary and Peter have big hearts and love to give to children, but I agree with you.

[@openlybookish]

@@user-pp8ic9jo7nI was shocked as well. 😢

[@michaezell4607]

I've been hospitalized so frequently since November of 21 that they can't even get an IV or blood draw on my left arm....even when trying with the dreaded ultrasound device. I had a laparascopic right hemicolectomy back in October and I'm now wishing I'd had a colostomy instead because I'm having such a hard time with my bowel movements being essentially water since they removed my entire ascending colon. A few months ago I was in the hospital for my COPD related issues and this time had to get a central line put into my neck....i swear i can still feel the sutures on my skin even though they were removed once it was determined that the line was no longer necessary.

[@elainehardy3502]

Mary, when a person say has the flu. They start feeling better and they get up overdo it and crash back to bed. It's wonderful you're much better than before trikafta. If Peter hadn't went back to work outside the home a foster baby be fine but with you taking care of the babies mostly yourself isn't letting you get the rest you need. I'm just worried about you getting sick.

[@SweetThing]

I think, with Peter going back to work, Mary has taken on too much. She already had Elijah to take care of. Prayers for the family.

[@gloriouslyimperfect]

I think only she can determine what is and isnt too much for her, not some stranger only seeing parts of her life on the internet.

[@maryjaneferguson2711]

​@gloriouslyimperfect I agree with two comments above. She's taken on more than she can handle. Regardless, of Tricafta....she still has CF...she's breathless alot anymore (respiratory people can tell that in anyone). She's got alot of phlegm. She had her hands full. She didn't need to add.

[@gloriouslyimperfect]

@@maryjaneferguson2711 No one asked you for your opinion and she’s an adult who can make her own choices and decisions.

[@maryjaneferguson2711]

​@gloriouslyimperfect and was yours requested? A cut and paste of a much repeated comment. We are concerned with Mary and her health and mental well being. Alot goes into having a lung disease that is unknown by most. You choose me out of comments which I agreed with, not cool. Bullying?

[@ritahall8653]

Bless your heart

[@nikkirichards6050]

I hope you feel better soon

[@charleneb5361]

So relatable and true. This makes me feel better about the meltdown I had last night when I realized the bedsheets were still in the dryer when I went to go to bed at night. I was crying not because of the sheets but it was a buildup of a frustrating day. ❤ I hope you got to spend the rest of the day after this with the babies and had lots of smiles.

[@susanharris1285]

Love and hugs for you

[@thegatesofdawn...1386]

❤ God bless you Mary.

[@debbielopez6593]

Sweetheart it is ok to cry and frustration and sorry you are struggling I validate you. Yes God is by your side .

[@prickleecactus23]

Phew! You've got alot on your plate! Health challenges, toddler, fostering baby with medical needs, hubby with a new job... You're doing well 👌🏼

[@8SmileyLady]

Hugs Sweetie. I am praying for you. I get infusions but don't have a port. It's hard to take care of littles and let yourself get the care you need. You must though! You have a lot on your shoulders. God will keep His hand on you.

[@suzannehasser9020]

We’re with you, even from a distance.

[@gloriouslyimperfect]

I’m years into my port journey and I wanted to just reach out and hug you so tight when I saw what you were going through with yours. Mines been a trooper but we’ve definitely had some arguments! Hang in there!

[@peppermintwoman2049]

Strength!!!! Big Hug and wow you are so brave! Thank you for being vulnerable and sharing your true thoughts, crying is healthy and actually necessary for the body, so you cry as much as you need to! xoxox

[@ToLoveIsToLive89]

I can sooooo relate Mary! Having one of those days myself 💗

[@kathrynmarano8102]

I had my port replaced once due to pain and swelling from the port up into my neck. I feel for you.

[@johnsonfamilyvidsvlogs3745]

Prayers v hun

[@elainemilligan6477]

I know you know this. You are so blessed to be born at this time. There are so many advances in medicine that you are even alive and able to have the port and the miracles that it allows you to receive. May God help you and your family at this time.❤❤

[@franistone8252]

Give yourself a break...you are amazing. You're right, we can't do everything.

[@nikkihigham5051]

The mantra I go by now is (which seems to lessen the stress & anxiety) "It is what it is" xx

[@KirstyM100]

I remember when you had to get the "new" port and you were so bummed cause you're original had been so good. Oh and the demo's you and Peter did so we could understand accessing it. Wow how far you've come.

[@EscapeReality94]

Hey, sometimes you need a good cry! About once a week i will intentionally watch something on youtube or tv to actually get myself to cry. It feels soooo good!! I then feel nice and refreshed for the week ahead! ❤

[@flygirlhandm]

this is so relatable

[@user-dt1uh5dv5y]

You are so amazing! Love your faith in God! He has got you!

[@elizasteere6315]

I had a fibrin sheathing done to fix my port! It sucks to go in for a procedure but it helped with the issues I had with my port

[@jessicajarsak7812]

How did that work? How did they do that procedure to fix your port?

[@tinmanlover1994]

Love you Mary hang in their I know it's hard it's scary and with a port not working it can be very hard. I'll be praying your port gets better and works

[@Nrsshel2]

I get cranky when I'm hungry. My sweet daughter looks just like you, she gets teary. Go home, eat, relax for a few. Snuggle those babies. Your perspective will shift ❤

[@nereidgreen6653]

Love the shirt, Mary. At least your chronic illness experience granted you the smarts to coordinate two concurrent IVs. Sorry it didn’t work out the way you needed it to.

[@marykowalski7349]

Oh, Mary. How I wish I were there to give you a hug, or fix you dinner, or feed Sweetie or take Ollie for a walk with Eli in the stroller - anything so you could sit with Peter and talk this over. What a LOT to have to handle when your life has been so blessed with your family growing and Peter working in a job he loves.... Please know we really appreciate your honesty in sharing the tears. It gives your Frey Life family the feeling of sweet connection to you all, through thick and thin. I'm sure it wasn't easy to vlog in the parking lot but we so appreciate the effort of you and Peter to keep us posted.

[@QueenNoTeetha151]

The worst thing for me about having many things wrong with me and having problems with procedures has always been the fact that it ruins my time with my children who rely on me so I could relate to you saying about the children at home. Ours have all grown now but they missed out on a lot due to my chronic illnesses and it still hurts me now tbh. It is what it is though I guess. Could have been better but could also have been worse. Hugs to all the parents out there struggling to maintain their health along with taking care of their families.

[@karbear26]

Sorry Mary how frustrating!

[@cheapthriftymom7284]

Mary you hubs and those sweet babies need a vacation! Lol ❤

[@sandracollins7938]

Sorry you had a hard time at the center but it's alright to cry......it helps release stress. You'll get it worked out because you are a strong person with God on your side.❤

[@Fizzypopization]

If you do go back to peripheral IVs tell your nurse you react badly to digging and have them promise to not dig or redirect if they fail it fails try another vein. As a medical professional myself who draws blood we were always told never to dig and only redirect once if it fails it fails. Redirection should be agreed upon by the patient. It's not as big of a deal to fail as it is for the patient to experience true pain.

[@jessicajarsak7812]

Ugh digging is the worst and hurts so bad.

[@stjernoga]

Good choice to give yourself grace and a good cry 💝🙏 lots of hugs from Sara

[@kimbo500]

Yep....policies are important, and people are important too. I happen to be a chronically ill/permanently disabled person who was a hospital RN. Part of my job was to write and update hospital policies monthly. I guarantee....a big part of that means each policy is evaluated and edited in the best interest of not only the hospital - but certainly the patient as well. It was an honor to be in such a committee. It's a shame that situations present themselves that lead to negative experiences like this port. In this instance, both hospital and patient contributed to the situation. At least that was pointed out within this video. I recently had a 30 min infusion; however, I was there 3 hrs. They didn't say anything about it, nor did I. I could see they were all working, not joking about. This normally doesn't happen, so I knew the staff literally was doing their best. I think Mary is learning a bit more about balancing one's life. It's not easy with chronic illness alone, but introduce the additional changes -- and anyone would be overwhelmed. Something has to give, priorities change, and life doesn't always cooperate with what we think our life plan is. 💕

[@jessicajarsak7812]

That 2nd port of hers was tricky from the beginning. She did get a replacement, a better functioning one.

[@victorialehman6604]

USUALLY WHAT MAKES ME STRESSED IS THE CHIP BAG WONT OPEN LMAO I PROMISE YOUR NORMAL 😂

[@lindaowens2966]

Yes grace for yourself ❤. God never gives us more than we can and He can handle. So many leave Him out of that . We can do nothing without Him and everything through Him. I love the faith you and Peter demonstrate every day.

[@dianabarrick4663]

God’s blessings upon you sweet girl.

[@eponamom1]

It's sooo frustrating. My daughter's port has been working beautifully for her IVIG Infusions, but it's still nerve-wracking!!! Praying for you!!

[@survivor2117]

The first thing I’m gonna say is when people compare my situation to their situation, it negates anything I’m going through. So I hope people don’t do that to you. ❤you’re an individual, what you feel is your own and your emotions are real! Please give yourself grace….😊❤ Thank you for sharing your journey. It truly helps others.

[@gloriouslyimperfect]

People do that often to share empathy and understanding - its not always meant with bad intention

[@maryjaneferguson2711]

Mary I suggest you speak to your team very soon, for a Arterial Blood Gas (ABG) a respiratory therapist or respiratory nurse can take it. Familiar...and i think it would be very wise. Proactive. Blessings

[@GoFishOffice]

🙏🏼💞