Will It Work Again?!? | Port-A-Cath Update
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- Опубликовано: 19 окт 2024
- [Vlog 6.8.23] - A little bit of hope amidst Mary's stressful port-a-cath situation!
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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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My junior year of high school we had to design and build a Rube Goldberg machine. Being cheeky high schoolers, we made a mixed drink maker, and my group won! It was such a fun group project!!
I also have a port. Mine is a dual power port. I periodically have to tpa it. My doctor just sends the prescription to my infusion pharmacy and they send me the drug and supplies. Port problems are so frustrating and always seem to happen when you need them the most. Your video on how to self access is the reason I found your channel. Still following many many years later. Thanks for continuing to share your journey. It is so easy to get very discouraged and to feel alone in your chronic illness journey. Even though we have different conditions, the emotions are shared emotions.
I love how positive you guys are when you guys are having medical issues or whatever your dealing with. I mean i know you guys have your moments off camera but just wanted to say thank you. Your channel has helped me for the last 6 ish years. Whenever I have a bad day I always ask myself “what would Mary do or say”. So thank you so much 🫶❤️
So relieved for you Mary. I think many of us were really concerned for you after your last video.
I have watched you since your 2nd year doing this….,…and I cannot express to you how deliriously happy I feel seeing you live your lives and expanding your family - the fact that you are posting fewer vlogs /posts / etc….is AWESOME 😘because you are too busy living life ,because you are so busy being a fabulous Momma and Dadda ….💟✨🙏💖🙏☺️💟 Many blessings to your family. -Sonia NS 🇨🇦
I miss ur OG songs. U got through my sickest moments of like. It's nice to see u doing so well. (As am i) u guys rock
I miss them too! Both the ones they made up, and the ones that were their theme songs. I found myself singing along with “Better Together” yesterday in my car!
Where did people go out on informal dates before malls were invented? Makes me sad that they’re disappearing. Not enough for me to willingly pay retail, though.
The song!! "We think the same things..." Love it!
I love your little songs 😊
Peter looks fed up 😂
So happy to see you smiling again Mary and getting your port issues taken care of one step at a time 😊
I wish you were still in New England. My surgeon that took my port out and put in my new one was amazing!! I didn’t even have discomfort! I couldn’t believe it. There was zero pain zero discomfort for taking the old one out, and new one!
Thanks for updates
We flush with heparin, then wait a while before doing the saline flush when the port is sluggish or not working. Works like a charm.
Praise God
I love how you just burst into song 😂😂
Go Team Frey!!!💜💜💜 Love from CT! Whenever you find yourself doubting how far you can go just remember how far you have come...”
This is great! I am working on recovering from total knee replacement along with a rod removed from my femur from an accident 10 years ago, and I am 2 weeks post op. Everyone is telling me I am exceeding expected recovery markers, but there are always doubts in the back of my brain. Each day is a new day with new highs and new challenges to be met. But someday I will actually be able to walk without contemplating every step!!
love that your fridge looks like my fridge!! Hugs and step by step!
After your Rx treatment, do your saline flush first, then do the heparin flush and you're done.
Love your family
Your prayers are answered again, just stay calm.
God bless you all
Flushing With straight heparin makes total sense. When I worked in dialysis that is how we flushed the lines in the patient’s cath.
Love from a port-less fan! I can’t get them, because they get infected. So I gotta get poked at the infusion center weekly. I feel ya! Yay for working ports. 😊
I am so happy! Thank God! ❤
❤love you all❤
I wonder, Mary, if you have PTSD after all of your health/medical issues? You have so many tough hospital experiences in the past and that is where your mind goes. Praying that you have an easier time for the rest of the week. (Note: I didn’t say easy because having 2 young boys is not easy!) Thank God for Peter who is so supportive and understanding. ❤️🇨🇦🙏
I had to see your old intro. 3 years ago. All you got to do is breathe. Likes it.
SO happy your worked out your port! QUESTION: Did I miss an announcement? Have you switched to one episode a week? Completely understandable if you have, but your "about" says you do a daily vlog and it.s not. Otherwise, hope everything is okay.
I’m so grateful that you managed to get the port working again xxxxx
Woohoo 🎉
Praise the Lord for Trikafta giving you the time and space to manage your port.
Thank you for sharing!!
Are you guys going to adopt the little baby or are you just fostering? If m so happy your port is working it’s got to be a big stress reliever….love you guys I think your one of the best vloggers on RUclips ❤❤❤❤❤
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I guess you guys are releasing 2 video episodes as the current pattern
Stands right now with the current work schedule at the church.. I guess
This port is stiill in your body despite the it was the feeding port that was taken out earlier in the year that was no longer needed.. Thank god the test you had passed with flying colors.. Despite of happy tears and not pain tears in the car the other day.. Im sure elijah is getting along with his
Unnamed foster brother as of now.. Todays episode release comes on
JULY 12th which is t--minus 37 days until MARYS 34th BIRTHDAY!! It
Will be here before you know it and i think time flies when you get older..
❤❤😃 til next time. GOD BLESS and PEACE!!👍
Ports are so finicky ! Hang in there ! ❤️
So happy for you!!!
Did you adopted your new baby so happy for the lord has blessed your growing family
Where do you get the lidocaine for your port? Do you need a prescription? Thank you. The boys are beautiful! God bless. Thank you for your help!
They say many people are having port issues.
Most of the time the port is the problem.
My husband right now is getting ready to have his taken out because his body is rejecting it.
That’s funny me and husband think the same things a lot. It’s crazy but I think pretty unique. God bless
I've been having a lot of problems accessing my port, well my home health nurse has been. I've had 3 of them in the same area and I have a lot of scar tissue build-up. I have a feeling since I will have to get a new one in a different area. Mine is very touching and I have to get TPN for the clots every so often. I've been surviving because I've been on IV meds for a little over 10 years and I'm shocked that my insurance keeps approving my home health services. I can't go without my IV meds because I can't function health wise and it's cheaper to do home health instead of being in the hospital for months every so often. But most of the time I'm in there for a couple weeks many times a year. I have Myasthenia Gravis which is a form of Muscular Dystrophy and I have the chronic variant of Guillian Barre Syndrome. Since I've been having such a hard time with it, it's going to be a matter of time before I need to get a new one. My muscles can't handle the heat and since we live in Southern Utah which is very hot. St. George is going to be over 110-115 degrees for over a month. So, my port and IV's is very important since I need those meds keeps my lungs and muscles from working. The high temps also affect the muscles for swallowing and the muscles around the heart and lungs. I would love it if you guys would pray for my port to work long enough to at least until it starts to cool down in October. I have very much been praying for your port to work and that you can continue to access it so you can get the IVIG and other meds if you need them. I've been on IVIG off and on depending on what's going on. I'm always accessed since I have to take my IV meds every day, I get my needled changed every week. I'm curious about how many times you've been accessed in your port? I think my nurse or doctor told me the average is around 2000 accesses. But, I'm not too sure. I don't know anyone personally that has a port, so I've been meaning to ask you. Anyhow, I will continue praying for you and your family.
I love you guys!I have MS which caused nerve damage in my stomach. I have the Mickey button now but spent a year and half with the bumper, thick tube, and hanging, yucky ports. I’m praying for you. do you have a Central line or picc line.
Love from Pennsylvania❤
Glad your port is working better Mary 😀.
I give you both a lot of credit. I’m blessed with two teenagers; 14 & 16. I still remember the challenges of baby years…couldn’t imagine managing your own health issues in addition. Mary, don’t feel guilty feeling you…I get it; I get it…but you can’t be at your best mom unless you are okay first and foremost.
I live in the OBX,NC. I get all my treatments at Duke,UNCH&Greenville. I need to move closer to my Drs&other specialists, regular Drs which has been a nightmare. I need to stay near my Mom. I can't be to far away as I'm caring for my Mom. Would love to find a church. As of this moment,I'm unable to drive. Please,if you know of any quiet areas where I might be able to live. Would prefer no apartments or condos. Thank you.
I’ve been having port issues lately too 😢
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I've never been the first, this is exciting 😄
Have you all decided how long you will be on utube? Will you be there for all time or are you thinking until your son is a teen? There is plenty of time to decide, I was just wondering if you all had a question answer time about this.
How did those egg bites turn out? I need to make some of those up and freeze. I hate getting up early and having to cook every day. somedays, I want a break.
May I am so happy that your Port is working thank you Jesus
Is there a chance they will get to adopt the new Sweetie ? 💛💛💛💛💛💛💛💛💛
That's what im wondering or what is sweeties real name reveal..
@@ivark56ofPAas long as they are only fostering this child, I’m pretty sure that rules prohibit them from revealing that on social media.
I didn’t think of baking egg bites. I’ve been putting them in the pressure cooker. Comes out light and not dense at all. I don’t know what kind of result I would get from the oven.
What amount of cottage cheese to egg do you use? You're the second person this week I've seen add cottage cheese to their eggs. 🙂
Is this the first time that this has happened to you for ray? It's happened many times his porch. Usually last about 7 to 10 yeand then we cha one that didn't last very long at all though, so hes had 5 of them.
i had a port crisis,the tubing had a shark fin in it...i had to have it replaced
I had to get mine replaced as it coiled in my vein. Looked like a roller coaster occurred.
When you are stressed out just stop whatever you are doing and breathe and relax
We with breathing (lung diseases) thats not really something we can do. Honestly. Not like a person who can breathe well.
@@maryjaneferguson2711 oh okay are.
Get rid of the port. If you really need it then you can have a new port put in a new one!
5:29 one either has no information or information × 3!
Did I miss something? Did you adopt another baby? You keep referring to “the four of us”?
They are fostering another baby.
Omg, a rheumatologist that I saw for the first time last week said that my port “needs to come out” since I haven’t been having my infusions and I’ll probably be switching to weekly self injections. I freaked! The recovery from my port placement was VERY HARD! So I told him that I’ll wait to make that decision until AFTER I have some minor neurosurgery sometime in the next few months. (Yes, there is minor neurosurgery…at least minor in light of the fact that, yes, it’s still NEUROSURGERY).
I hate these grifters ! I keep blocking them but this bullshit grifters keeps popping up . Christian ruing our country with there bullshit lies ! Stealing indigenous children.
Let us know how the egg things turn out
😊😅
Glad the port is doing okay, it really sounds like it’s positional, next time Peter accesses it, take a picture of yourself I’m what position you were in. Then you can mimic that position at the facility, ❤❤
Am I being rude asking were Peter works ? Just curious , so sorry if I'm being out of line . Genuinely curious .
Peter has recently become an Associate Pastor of Waypoint Church, Durham, North Carolina. It is a ‘full-time’ position. If you look the church up on Google there is a photo of him.
He was Pastor of a church in Grafton, Massachusetts for several years then took a break to deal with all the family goings-on I.e. Mary’s health, adoption etc. and they moved to where they are now to be nearer the hospital overseeing Mary.
Hope this helps and hope I’ve got the facts right!
@@angeladoggrell7531 thank you so much I was hoping someone from comments would tell me , I just felt kinda rude asking . I'm so happy he is a pastor full time now that awesome . Thanks again .
you should get a new one
Why she needs port now
Peter's facial expression. Over it.
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