Port-A-Cath Failure | Tears in the Parking Lot 🏥
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- เผยแพร่เมื่อ 14 ต.ค. 2024
- [Vlog 6.6.23] - A frustrating day at the infusion center ends in tears in the parking lot.
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It’s ok to cry especially when it’s frustrating. Yes, give yourself grace.
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 🇦🇺 ❤
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...🎶
Me too! Singing,,,🎼
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!
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.
People are more important than policies. It’s a shame it’s not recognized that way in our health care system.
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 💜
I havent closely followed you guys in a couple years and it's wonderful how healthy you look and sound
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
Mary, give yourself a break. You really busy. I'm amazed at energy you have.
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.
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.
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 ☺️.
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. ❤
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.
🙏🏼💞
Buck up Sweet Mary...God's blessing you with strength continually. ☺🙏🏼💕
God bless you Mary blessing God above ❤❤
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!!
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.
❤ 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!
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.
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)))))
Ditto
Mary, you are so strong; hats off to you. Your tears are one of the best tools in your toolbox.
Tears are tools in our toolbox. What a great perspective. I really needed this. Thank you for sharing!
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.
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 ❤️
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.
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. ❤
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!!!
((((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. ❤
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 ❤️🥰
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.
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.
Ugh digging is the worst and hurts so bad.
I’m supposed to get my port taken out. I’ve had it for 10 years and have had no problems. This is my first port and hopefully my last. Im scared, my port feels like a comfort object. It was with me for the scary touch and go years of my cancer. Since my cancer reoccurred 3 times I’ll be monitored for the rest of my life. This going to hurt. Ten years is a long time. Im sure my body has grown around it. Im sure I’ll be sedated for the procedure. This won’t be easy, right?
Faith will be with you and you will prevail God bless.
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
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!!
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
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.
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.
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.
@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.
@@maryjaneferguson2711 No one asked you for your opinion and she’s an adult who can make her own choices and decisions.
@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?
You are the epitome of grace! It is perfectly okay to cry. I do the same sometimes when I am angry or frustrated.
I hope you feel better soon
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 ❤
Sweetheart it is ok to cry and frustration and sorry you are struggling I validate you. Yes God is by your side .
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!
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!
I’ll be praying for u sweet Mary! ❤️🤗🙏
Mine got infected. I miss it! Hope to get it again soon
Ouch. I hope you can get another one too. And be very careful with everything to be as sterile as possible. I’ve never had an infection with mine. I have a great surgeon that put mine in. I’m not sure how others get infections when every to inch was done sterile unless the product or catheter was sterile properly in the package. I’m glad you’re ok though. That had to be scary. What were the signs you had an infection?
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!
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. ❤
Prayers, love and PEACE! Blessings
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
How did that work? How did they do that procedure to fix your port?
Give yourself a break...you are amazing. You're right, we can't do everything.
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!
It is ok to cry. Sending prayers 🙏
Oh Mary-girl. What a nuisance. I pray that the port can either be repaired or replaced very soon. ((((((Cwtch)))))) xxxxxxx
You are so amazing! Love your faith in God! He has got you!
Absolute Grace 🙏🏼‼️
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
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
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.❤❤
You’ll figure it all out, no one knows Mary better than Mary.❤
Hi Mary you going to be ok. Try not to stress to much. I will be praying for you. ❤😊🙏
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
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.❤
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 👌🏼
Prayers for you and your family 🙏 ❤️
I recently had issues with my port. The nurse practitioner used a altaplase infusion I heard one woman who hadn't used her port in six years had two of these and it unblocked the line. Injected altaplase (not sure of the drug name) then waited three to four days, and went back , they sucked the altaplase out, and locked it with hypersal maybe different in the USA compared to Australia, but there is a way around every problem even policy and procedure. Your CF clinic nurse should be able to guide you further. Have you had a X ray to see the position of the port ? Your line may be kincked or the line may have been moved somehow. I also find mine is positional and have to lie at a angle to access it. One final thing they can do is "strip" the line, I've had this done before where they take you to theatre and go up through the groin (they give you a twilight drug) but I believe this is no longer "best practice". You should discuss your issues with your surgeon and CF team.
Sonia, Sydney, Australia
My first port line moved out of place so it looked a little kinked and the end got clogged. I love my new port but it’s taken time to get used to since it doesn’t have any bumps to find the center. An OR surgical nurse showed me how to find the center. She was so nice but ugh it hurt when she put the needle in to check for blood return. Her method is painful. Mine and many nurses it doesn’t hurt. It’s so weird how the line in my first port moved out of place. I took a pic of the before and after X-rays they took. And I compared to the X-rays when they first put it in and it did move. So weird.
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
Sending hugs, Mary❤
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.
You have such an amazing strength and such grace! God bless!
Sending you strength and love.
I’ve had my port 3 years and grateful I haven’t had any problems with it . I gets used every 3 weeks for my immunotherapy so gets flushed every time. Hope it gets straightened out for you soon Mary.
I feel so bad Mary. Your port has been giving you problems on and off for awhile and I know you were not sure what to do. I really can understand your feeling of being overwhelmed right now so give yourself a break as you would for anyone else. You are doing so much as a new mom to two precious babies and doing such a fantastic job. As you always do you will talk with Peter and make the best decision that is right for you… you got this.. one day at a time. Sending you love extra prayers. 💗🙏💙
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 ❤
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.
Praying for you Mary!!! Also for your family!! Love from Kris and Mike
I understand the tears. It is okay to cry and let those feelings out. I empathize with you, I was crying since I was denied for a medication I have been trying to get compassionate release terms for the last five months. Tears sometimes just happen
Bless your heart
Thanks for sharing
I'm sure it encourages people who are going through the same thing
I love how you share your faith
Bless you!! 💕
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.
I’m m so sorry Mary. 😢
Let yourself cry. You are so strong but sometimes we need to let ourselves feel the feels and the frustration and let some tears flow
Hang in there kiddo, you're doing ok. Dealing with blood clots for whatever reason is no picnic. I'm stuck on thinners for life now due to them, but it is what it is. Just remember it's on God's time not ours. He will always take care of you. Love you and take care of those sweet little ones. ❤❤
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.
😢 oh sweetie God bless your sweet heart. Many are the afflictions of the righteous. 😊 I am praying giant prayers right now for you. God is so good. He knows every tear we shed . Sending the biggest hugs to you you're too sweet babies and your husband. May God bless and keep you always. ❤
Good choice to give yourself grace and a good cry 💝🙏 lots of hugs from Sara
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.
People do that often to share empathy and understanding - its not always meant with bad intention
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. 💕
That 2nd port of hers was tricky from the beginning. She did get a replacement, a better functioning one.
We aren’t alone in this crazy life. There are others going through it too. I have a hard time going to the doctor and waiting for long periods of time in a waiting room or in a room. If things go smoothly and in a timely manner I will have a panic attack. I don’t know why because others are there to see the doctor as well and I respect that. My anxiety will get so bad I’ll have a panic attack. It’s horrible
Prayers Mary🙏🙏🙏🙏
Love and hugs for you
It’s so sad to see you cry, but it’s understandable that you are crying,,,, can’t you have your port changed, you are having problems with this one for a long time
You got this Mary,,, let your husband hold you and cry on his shoulders ,,
If one have good veins it’s ok to get peripheral IVs, but very painful if one has to get stuck numerous times,,,
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 -💗🙏🥰💐🫶🏻😃
I agree she ill and taking on another child is shocking
Honestly I agree Karen. I know Mary and Peter have big hearts and love to give to children, but I agree with you.
@@AnnaWitte-f8fI was shocked as well. 😢
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.
I hope baby hugs helped. Lots of love
I remember when you got this current port in Boston. Celebrate the little things. I need that tonight
You are just amazing. I love your attitude towards life. Stay strong!!
We’re with you, even from a distance.
Sorry Mary how frustrating!
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.
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!!