This is Frustrating!!! 🏥
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- čas přidán 31. 07. 2023
- [Vlog 6.20.23] - Mary ends up with an IV in the infusion center with unknowns about the future of her port-a-cath.
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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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I've been following you for like 5 or 6 years now and I'm so happy to see you're not caughing so much anymore and how your medication changed your life for the better 💜 (I'm not the type of person to write commentaries on videos but I'm just so happy for you)
I can not get a line at all anymore even with their sonogram machines over 34 years of IV treatments and 26 surgerys. Unfortunately hospice comes to my house Friday I'm only 54 and I've been homebound 11 years. I pray you get nothing else with CF because I did ok in my early 30s but then got 6 more immune disease list my large intestines in 2012. My RA is stage 4 in my organs. My wrist are held together by 7 inch plates and my feet. I'm in severe chronic pain 24/7 with no pain. My husband and I have been together since age 15 married 35 years together 38 but the lady 9 years I feel like I'm just a patient it sucks. We have 3 hairless cats a Sheepadoodle 😊❤
God bless you sweetie! Amen..... He always has us! 🙌
Mary you inspire me so much . Im a severe asthmatic and i struggle so much and im always feeling down .
youre always upbeat and positive and it makes me so happy to see someone with chronic illness actually happy and not letting it get to them !!!! ❤❤❤❤
This !! Same here!! 😭
Glad to have all of you all back. Hope nothing was wrong
I have MS and have to go every 36 days for my infusion. My little private room is a stall with a curtain. Thank goodness has a tv. 2 hrs is so boring. Keep healthy.
It’s so good to see you driving more! ❤️
Glad You guys are ok have a good Tuesday
Hi Mary, I’m so hopeful that the CF team are going to sort this for you. I’ll be keeping you in my prayers xxxxx
Youre so brave and strong, you have the patience of a saint.
You are such an inspiration! Sending lots of love and prayers.
Thanks for the message, one day at a time!
Yay! It sounds like you guys got the IVIG situation figured out. I hope your port doesn’t give you too much grief Mary 😬. Hope the family is going well ☺️.
Glad to see you 😊
Love to just sit and listen to the rain. We get so very little, but when we do it's usually torrential here in Mesa, AZ. I've followed you for years and think back to so many months that you had to be in hospital and how well you are doing now. Such a blessing for you and Peter.
One day at a time❤
Bless your heart
Oh sweetie. 😢😢 I'm sorry.
Hi Mary and Peter, I've been watching you for a couple of years now. Started watching due to the topic of cystic fibrosis... (I had two cousins who also lived with cystic fibrosis). I have learned so much by watching you both. First I gained a better understanding of what my cousins really dealt with regarding CF. I grew up in the 70's -80's and just thought of them as my cousins. My parents shielded me from a lot of what was happening with them. I am thrilled with the advances in CF and so elated how this has completely changed your life, Mary, and everyone in the CF community. My faith in God has also been strengthened by watching you both. God and your love comes through in all your videos, even in the smallest ways. It's very uplifting and a good guide in how to live with God in your life. Thank you both. Peter... I know you have some sermons and podcasts on here. Do you post any of your weekly sermons? I have started to watch what I am able to find, but they seem to be from years ago. I don't have a church I attend, but have really connected to your sermons I have seen and would like to be able to watch them weekly if you do post them somewhere. Thanks for all you two do. You are making a huge impact in all you do. God bless you and your growing family.
Prayers.
Prayers 🙏 🙏 🙏❤ yahoo
Im glad everyones safe despite there has been some violent weather happening last week or two with tornado outbreak in the eastern part of the state not far from the rocky mount area of state one of those was a
Major EF3 one in vicenty of interstate 95 corridor.. I guess this is another port checkup appointment you were going through .. Thankfully
Its not your treatment medication wearing off or being rejected..
Todays EPISODE IS RELEASED on AUGUST 1st which is MARYS FREYS
34th BIRTHDAY MONTH is Starting already it will be here in about 17 days away. Which will be followed by YEAR 10 of the frey series on AUGUST 23rd.. two key dates coming up in AUGUST!!! ❤❤🎂👍
Hi just found you guys (in the last couple of weeks I think) I have been binge watching a lot of your videos. I am from the UK 🇬🇧 near the south cost. I have Cerebral Palsy and enjoy watching how others with conditions and disabilities navigate life. Love your family xx
Wow. So I’ve been navigating the crummy world of medical unknowns too and feeling a little discouraged. Our church did Ready Set Move for VBS too and hearing you sing that song felt like a sign that it’s all going to be okay. Thanks for being an encouragement when life feels a little darker than usual 💛
So true God’s with us always ❤
I'm sorry your port isn't working maybe it's for a new one. I'm excited to hear about the vacation Bible school. I work at a preschool and last week the preschoolers had there's. I had never been to vacation Bible school and it was wonderful for these little preschool kids. All activities were set for them they even gave the kids special snacks.
I wish you well, and hopefully, you will get a good solution. Either a fix or a new port.
Ugh. I had my port removed while awake. It had been in 4 1/2 years. Not another port for awhile for me thanks to Trikafta. Good luck. It will all work out.
The port was a life saver for me.
Hi!! Missed you all!
Praying everything goes well for you. And congrats on the "babies"
I understand the frustration. Mine is mostly on the insurance side. As in insurance deciding that a hysterectomy wasn’t something I needed a few years ago. I’m FINALLY going to get it next month. I’m thankful I’ve found a doctor that was willing to go to bat for me to get it approved.
Oh I know that pain! I had a nurse put my infusion needle in my wrist one time instead of the top of my hand and it was hitting the nerve or against bone or something and every time I moved or they moved the tubes I jumped from the pain shooting up my arm. They finally had to take it out and move it. Hope they can get your port sorted out soon.
One day at a time, Sweet Jesus!! id lvoe to hear you sing that
I think we are doing the same VBS next week as you. Ready, Set, Move! I don't know what I will be doing at VBS, but it's most likely sound and then jump in where is needed.
Hey Peter , Mary , Elijah , baby girl ,Ollie & Harry❤❤❤❤❤❤
the baby is a boy
There 2 boys at the house..
Have you done the Cath-flo again? You could try doing the saline and heprin flush two times a day. Push the syringe with a pumping action. Maybe this will help? Could it be a port that is being finicky about needle placement? Sure hope your port is not failing and can be sorted out. Port removal and replacement is not fun. 😢
But the first thing you do, is tell us how nice that lil place is! Because that’s you and its why you lift others. You’re serving all the time. ❤
One day at a time , that’s how i live to I have many medical issues all my life I am 42 years old, & God gets me though one day at a time. Mary and Peter glad you’re back been missing you all found your channel 4 years ago your such a blessing in my prayers always beautiful family.
My son has done 3 VBS sessions with different churches this summer. It is so fun to watch him dance and sing to the songs. We have found most of them on CZcams so he loved to watch them too..also on Alexa too..being 5 he puts the songs on repeat 😳😉😍
❤ Mary, i hope everything works out the way you want it to as far as the plan goes for your port. Just in case something changes I just want to say I've had multiple ports placed and removed in IR with local and light sedation and felt nothing. One of my ports was in 8 years and still it was painless during. They gave me anxiety and pain meds through IV as well as numbed the skin. So if this is why you're avoiding it just know it's not painful at all, you don't feel it and they will give you some form of sedation. Best wishes
hi guys! 🙂happy tuesday
My friend is getting a port put in right now for chemotherapy. 😿😿😿😿😿 please pray for him. 💛💛💛💛💛💛💛💛💛🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🕯🕯🕯🕯🕯🕯🕯🕯🕯🕯
Sweet JESUS AMEN❤❤❤❤❤
Your right Gods got our backs always
5:30 A friend of mine who had a lot of procedures as a child feels pain more than other people because they say his body over adapted for pain somehow. So you’re a soldier, Mary! 💛💛💛💛
Yes, that's what happens to us but eventually we do break. I have not had any pain meds due to having no large intestines my small gets blocked with oral pain meds. So at only 54 I'm in severe pain and pretty much bed ridden.
The thing about pain is that it demands to be felt.
When people with chronic pain are asked how they handle being in pain, they often say things like "Eh, you get used to it"
You don't. You never get used to the pain. Ever. You simply get used to being in pain.
@justcallmejessz3712 Unfortunately, eventually, you're body and brain will say f*** this I'm done. I've made it 54 years in pain. 26 surgery's and many many illnesses. 10 years behind 4 walls missing my sons school and sports, your heart breaks 1st. I think like my Dr. said for me it was losing organs and now slowly starving to death because I can't eat 97.lbs at 5/8. I was 80.lbs when they removed my intestines. In my 54 years of pain the last 11 with my hands wrist having plates and having a ileostomy excruciating pain when you have a ostomy pouch and hands that feel crushed and wrist that do not bend. One day on FB my friends took a weekend and duck taped a hard board from the palm of their hand to the wrist area where my plates are. ONLY ONE HAND I HAVE BOTH DONE. They challenged others to do it only one person made it the whole weekend, and they said it was impossible to do anything yep,it hurts like he**. Having breathing problems,and high heart rate because I'm always dehydrated from the ileostomy. I do breathing treatments but they don't help much anymore. Huggss
Amen 🙏 ❤
I had to get a new port in March, after having my previous one for 6 years. I had it done in IR and they put me completely under. They said they had a hard time getting my old port out…they really had to pull.
Sooooo happy ya’ll are back! Missed you soooooo much!♥️👨👩👦👦
I can relate. In June / July I was in the hospital. I have a port but they didn’t want to use it because of infection risks. (What about the risk of infection from poked holes in my arms??) But eventually what few veins I had ran out & they broke down & finally used it. My arms are just now healed up.
If I ever have to get a port, I definitely want to be all the way under during it - I found out last month that I metabolize local anesthetic faster than usual (EDS life), so I don't even want to risk it with twilight sedation, and, for all I know, I metabolize general faster than usual as well (only had it once and that was back before this all started), so definitely don't want to risk it.
Sorry to hear about your port. I have IVIG therapy but now do it subcutaneously weekly. It allows me to do it at home once a week with 3 small needles in my belly. Takes about 1 1/2 hours. Game changer!
She has been doing her IVIG at home for many years. Before moving down south. Peter has cared for her port.
I think she tried sub q also. I did sub q but it was not a great fit for me as reacted at each site that lasted the week until next infusion. Also didn’t cover brain as well as Ivig. Glad sub q works for you.
You rock!!! You give us guidance and strength!!!! Thank you for being you!!!
Elijah is 18 months.....OMG!!! I was in your area last weekend, my sister lives in Greensboro
I’m not a fan of doing everything in IR awake. All my central lines -Awake. All my NJ’s -Awake! It’s pure torture and I’m not a fan of the tests and procedures I used to sedated are now awake and it’s pretty traumatizing to be honest. I’m so sorry about your port! You’re doing amazing!! He does have us! 🙏🏼
Keep going 💪
Been watching for awhile, miss the better together song. But I feel the sign off now should be, “as always, stay blessed or grateful” love the positivity in the mundane and the tiring moments.
(Room tour) Sometimes I think hospital rooms would be an interesting studio apartment, if it was an apartment building instead of a hospital.
Agreed. I would not want to be awake either
Agghhh, you mean the port finally kicked it?
I understand the frustration - I’ve had a PICC, I’ve had a CVC (my doc will not do the port-a-cath, which….blargh), and about 6700 peripheral IVs (and I have difficult/wiggly veins, so you can pretty much multiply that by 3, as to how many times I’ve been poked to start an IV, in 38 years). I’m about a week and a half out from another PICC line, because I’m losing weight, can’t eat enough, and enteral nutrition isn’t going well. So, we all know what that means, right? I’m about to be back on TPN (last time was 2015-2016, while I was pregnant with my son).
It’s lovely to see you alive, thriving, and happy with your little family - when I feel upset and alone or scared, I dig back into your backlog (thank you for having so many videos - it means there’s always something to watch to not feel so alone).
🎉
Sasha
💟
Hope, you made it home ok, driving in such a heavy rain storm is dangerous
That time when the episode was flimmed and recorded that day there was flash flooding and a tornado threat happening in triad area of the state at that time in Durham NC ..
You have probably explained what ivig is and how it works before, but could you explain again please
I remember when Mary didn't like driving. I hope you can get your port working.
That's thanks to her trikafta treatment for the past 3 years which has made her condition stable enough that she can drive by herself. Otherwise Peter or someone else will have to take her to appointments..
@@ivark56ofPA I remember I've watched Mary for many years. I'm happy she is stable enough to be independent ☺️
Been missing y'all, sorry you got port trouble again. Hope all goes well during the study. God Bless!!!
Hey Mary this is one of my favorite songs to sing it reminded me what you're talkin about One Day at a Time Sweet Jesus look it up you might not be familiar with it because I'm much older than you it gets me through the hard days I love to sing it to myself and I know you got a beautiful voice
I recently had surgery and the anesthesiologist required all IVs to be put in the patient's wrist. The phlebotomist injected my wrist with lidocaine prior to inserting the IV and what a difference it made. My wrist was numb and comfortable for hours.
Hi Mary and peter
Oh my goodness! My port was occluded when they tried to flush it last week. That was my first time. They tried it again 30 minutes later, and I guess a little bit of heparin had gotten in there, because they were able to get the rest of the heparin in, but they didn’t get any blood return. I guess we’ll see what happens next time. I tried to get them to teach me to flush it myself, but they wouldn’t do it! I don’t know if that’s a California law thing or a new doctor who I don’t know, who’s maybe a crap head thing. We’ll see!
They put my port in in IR at a major medical center in LA, and they did the local so well I felt NOTHING. I didn’t even think they’d started, and they were already finished. Unfortunately they didn’t worry about prescribing anything for pain, and when the local wore off, I was in excruciating pain. And it was two days before Christmas. Happened to be my doctor’s birthday, which they mentioned because my birthday was the next day (I’m a Christmas Eve baby. I roughed it out until Christmas morning. Then I found an urgent care that was open, and I went. And they treated me like I was a drug seeker! I was SO mad! So my choices were either to spend Christmas in the ER, or go home and continue toughing it out. I touched it out, as the only way they can get me to stay in the ER for more than 30 is to drug me…and if I’d mentioned then maybe THEY would have thought I was a drug seeker too! That was not a Merry Christmas. Anyway, IR port placement was a piece of cake. It was a few hours later that the problems started. Ugh. 🙄.
I had a sub nurse last week for Ivig and she was surprised I use heparin. I guess the new protocol does not use heparin. Not ready to change as it has been working for me for years.
Hey Mary & Peter!! I have watched you guys for a long time but never commented until now I guess haha! I have loved watching you both through the years, and admire you both as a couple and family who pursue Christ and a relationship with Him. I'm just wondering what Mary uses for devotionals in the morning? I have seen her talk about it before but can't remember what she said. Thank you!!
Great vlog as always! Medical stuff is so frustrating, especially with unknowns in the mix.
Story about that. My cat is in hospice care and I'm not Abrahamic religious in your sense, Mary, but I asked for a sign today that I was doing the right thing for her. Aside from a Star Trek Discovery character saying to let him go, and another from the same show saying that the agony of the unknown is the hardest agony of all (and also that life's greatest mysteries come in threes), your video was also pretty impactful--one day at a time. So, I'm taking that form the message I need. Agony is what you make of it and sometimes the only way to get thru it is one second, minute, hour, day at a time. One day at a time to get thru the unknown is all you need to agonize about.
Hope they can find out whats going on with your port
The same thing happened with mine, esceot i couldn't get blood return from it. The day of my port study, the nurse accessed me, no blood return, my surgeon gets me back in the room to do the study, and he got blood return, so frustrating! So then i had to be put to sleep to fix my groshong cebtral line, so while under, he looked at my port again, and still said nothing was wrong, but it had a hard time flushing and no blood return. I just got a new one, but its side by side with my groshong now 😭😭
I have been avoiding the hospital since the last time I went. I am usually admitted right a way by my Cardiologist, but it was during major Covid and even though I arrived by ambulance I was literally in a longe chair for hours, then finally on a gurney in another hallway with doctors and nurses in white suits oxygen pack and completely cover head hoods with tubes connected to the oxygen packs. The rooms were cover into individual rooms and a long zipper o go in and out. My anxiety was hitting hard I actually tried to sneak out but I’m a fall risk and the alarm went off on my bed when I tried getting up. Then, finally got a room and felt better after one whole day being moved around hallways. And, of course, I got the crazy room mate. She looked at me and said,”you know you only got a empty bed and room because the last person sleeping there died.” Hello PANIC ATTACK & OCD ATTACK. And, then she called me a fat one, and I’m not event that big she weighed at least 70 pounds more than me. Worst hospital stay ever I lost a whole week of my life with the crazy lady. I’m triggered just thinking about it😳🤯😵💫
Your Port would be well and truly tissue encrusted. Just having drains removed after a few days, hurt. I hate drain removals.
There’s a class action lawsuit on those ports
Mary, just a thought? Since you have been notably stable health wise, would it be a remote possibility that MAYBE you for now would not need a new port? I was just thinking, after seeing how you were receiving IVIG, they might be able to do it this way in stead? Only a thought and hope to hear your thoughts. Hi Peter and kiddos. ❤❤
If you don’t mind me asking how long did you have to stay in hospital for
I’ve been on IVIG for 18 months. I tried IVIG treatments in 2005. It didn’t work. 18 months ago my last immune suppressant began to fail. We were at a dead end……excuse the pun. Lol. My Rheumy Doc encouraged me to try IVIGagain. It took 7 months to begin to make things better. I don’t know anyone else who uses this treatment. 💟☮️☯️
Mary, I know your frustration with implanted medical devices. I’m glad you are comfortable the person that wants to do it. PS, this vlog is missing Mr. Elijah. Hope he is having a good day.
If you try to flush it at home, doesn't that just prolong the port when you actually WANT it to do what it wants to do, which is to fail the next port study so you can get a new one?
You must be very new here. She and Peter have cared for her port and have done her IVIG at home for many years. If it is determined that the port is not functioning then yes it would be replaced if that's what her medical team feels is needed
You got mommybrain❤
Are you fostering the baby or waiting for adoption papers to be approved? Either way I'm so happy for all of you 🥰🥰😊❤
Elijah is adopted. The new baby is a foster.
Get a new port.....totally not worth the hassle of iv's. My IVIG doc doesn't believe patients with immune problems should have ports but I would totally do it if I could.
Mine didn’t either but could be 2 hrs to get an iv and over 8 tries and sub q didn’t work so let me and it has been fine for over 12 years as I watch the nurses like a hawk
my port tubing was shark finned on my chest bone ...they replaced it...works perfectly now ...if your port is giving you trouble every single time its used....why aren't they replacing it? just because IR can't find out the problem with it doesn't mean there isnt a problem....if it walks like a duck and quacks like a duck ...it's a DUCK! If every single member of the medical staff tries to use your port & fails...there IS a problem...Quack,quack it's a duck 🦆🦆🦆.
You must be new here. She is well aware of what is and maybe needed for her port.she has had a port for many years now.
@@eileenmcdonald1599 nope,im not ...
As you know it isn't a fun procedure. I try to make every line last as long as possible so I get it. I've had my Hickman stop giving blood for 3 weeks. We did everything..cathflo ECT. Then it randomly started working again and I have had zero probs for 18 months. I think some ppl, like myself, try to hold onto hope.
A new port maybe? What does the port do for you?
Here I am asking questions, I'll just pray for you my dear.
I lost my subscription, just noticed it. I was looking for Ollie. Where is he?
I saw the thumbnail and immediately thought oh no, more port troubles! :(
Sorry your port is not behaving!! Hope you can get it replaced by the surgeon you wanted!
Luh-who-zuh-her port.
Thank you for the reminder at the end that God is in control. I just found out our eighteen-year-old cat has a cancerous mass on his tail. We have to decide next steps and it seems really overwhelming right now. But God already knows.❤
Why can't they just remove it permanently like they did your feeding tube? I have to get IVIG every month from a double lung transplant I had 4 1/2 years ago. They took my ports out and never put them back. They just give it intravenously; it does sometimes hurt but that's just the way it is. Just wondering.
I’m assuming after years of being in and out of the hospital and needing IVs since she was a child, her veins probably aren’t great. I go through that too. My veins are shot. I have a port for fluids, labs; etc.
I understand if you guys can't answer this but how old is the little baby ?❤
Brought home from hospital so I think newborn
So why are you asking a question you know they are unable to answer?
Elijah will be 2 in December and sweetie is a couple of months!!
Coffee coffee coffee is girlmore girls thing
LORD please help Mary.. in JESUS Name.. Amen
A rare occurrence - Mary driving
Do u still go to children hospital ?
Mary nerves run alongside vessels, it possible that they were rubbing across a nerve. Ports can be done under sedation. Majority of Doctors prefer to have a patient as comfortable as possible. Having conversations with your Doctor ahead of time will always ensure you will be trauma free. ❤
OMG.....I'm sorry....I can't even watch these reactions anymore. For being a patient with a port for as long as you have...especially with the problematic port that you've had....I just don't understand your very dramatic catastrophic response. Just wow.....🙄 I understand first hand the frustrations involved with chronic illness, but I also understand the 'big picture of life'... and... this truly is a small thing.