The Day After Surgery | Port-a-Cath Recovery
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- Опубліковано 6 вер 2023
- Day 1 after Mary's port surgery, sharing her experience of pain and recovery.
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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 12 year old daughter was in bed for a week after she got her port. She has it to get IVIG. I was surprised at how long it took her to recover, but once she did, she was great. Praying for you!
I got my port and was told the pain was going to be minimal. I was completely blindsided by the recovery pain! I have a very high pain tolerance too, and it was awful.
Six months out and it still throbs, but it makes it so much easier for those of us who have long term chronic illness.
Praying for a smooth recovery!
It took about a year to really settle down for me after port placement but every week that passes it gets better
I love the way her husband loves her,she is so loved by him,and yes she loves him as well,Elijah is going to know what love is
If only we could clone Peter, this world would be a better place! He’s a great husband, father, and Pastor!
Mary I’m sure you’re feeling much better now. It’s hard with a toddler and a baby right after surgery I’m so glad Peter can be with you through this.
You are correct, Mary. Air under the skin is called subcutaneous emphysema and symptoms are edema and crepitus (the popping feeling under the skin). Working in ER vet med, we see it most often in patients that were HBC (hit by car)
I love the unrealistic measure of discomfort surgical staff is famous for. Dont tell me I might experience "some discomfort" when its likly going to hurt like a SOB!😂 Give it to me straight...I'd rather expect the worst and not have it be so bad, than not expect problems and be down for the count! 😝 Happy healing, Mary, you're a champ!💜
Yes Peter that's true ! My old left side port was in for 12 years. Scar tissue forms. The surgeon said he could remove the port itself but he can't remove the line as he'd have to break my collar bone. So they just trimmed it off. They put another on the right side. It took weeks for the pain to go away and I had to do stretches.
Mary you are incredibly brave to have a port removed and another placed the same day ! I don't know of anyone who would do that !
Love from Sydney, Australia
I had a pacemaker placed a few years back. Everything I'd heard or read said it was a simple procedure and, other than normal soreness, should not be very painful. Well, I was almost in tears for the first couple of days after the procedure, with pain, swelling and difficulty moving. I thought maybe I was a bigger baby than most people, but I've since heard from others who agree that the pain seemed to be down-played. That is a nasty trick I think! Thank you for being honest about your pain levels.
You said Elijah was sleeping. Do you still have the other sweet baby in the Frey house? I talk about your story all the time. I think that you are both amazing. What you have created in your life is just so beautiful. My cup runneth over. In peace and love. God bless you!
Sending love Mary. My port was super painful at the start. The neck catheter was the worst. Now I’m super grateful for it. I call “her” Portabella and it helps me lol. I have her for my many genetic and life long conditions that require ivig, iv antibiotics,, iv fluids, and other things. I hope “she” lasts a LONG time! You definitely are an experienced with this. My port also goes over my collar bone. That way actually is better in terms of issue because when it goes under it can easily be pinched off. ( according to my research and doc) the swelling for me lasted awhile and I couldn’t tell how I’d feel until it was down. I Hope you feel better soon.
Just got my second Port today. This time via local anesthesia. I was indeed a bit afraid of it but I knew it was way better for my body than getting knocked out. There are things more comfortable but I think it is absolutely managable. So don't be afraid. :)
Had mine done under local anaesthetic too and it was definitely manageable.
Mary you are such an inspiration to me. I have a different disorder but I get down and then I watch your video and realize I can do anything through God who gives me strength.. your such a good mom and I’m so happy your fostering a little one who needs a family… he is blessed to have you. Is the adoption set in stone or is there a chance he will go to family. If I’m being to personal I apologize… much love and prayers to you, hubby and the kids❤❤❤❤
I hope you heal quickly Mary. I remember when I had mine placed like 6 years ago it bruised up really bad and was real sore for close to a week or so. Thank you for doing this Vlog. I know you don’t feel well and going through a lot, I am facing getting a new port as well before long. I am so nervous about going through what you just did, but you bring me peace of mind. It’s nice to know that I am not alone and others are facing this as well. I wish we didn’t have to, but that’s just the way our story goes. Thank you Mary, this meant a lot to me. We are truly never alone.❤
Hi guys long time no see.. !!
I see that this episode is a follow up from that port surgery a few days ago.. At least everything is working now and that event is behind us now.. Im sure the boys are glad to see you home as well as your Former
Service DOG OLIVER JAMES. And your kitty cat HARRY.. In addition a HAPPY BELATED 34th BIRTHDAY MARY BACK ON AUGUST 18th...
Today episode is released on SEPTEMBER 7th 3 days after LABOR DAY..
I cant believe its almost FALL Already on september 23rd .. And elijahs
2nd birthday in 3 months.. On winter solstice day...❤❤😊😊
I pray God will let you heal fast .
And give you relief from your pain.
GOD BLESS YOU AND YOUR FAMILY
I PRAY FOR A FAST RECOVERY
AMEN to that !!
That is normal placement over tthe coller bone where your new port is. They did mine the same way when placed in about the same spot as yours. I thing that was the best spot for me it's a little wried at first with that line ruining to the neck. Other wise that spot was great for mine with no problems. The neck pain will go away after the swelling goes down.
Glad you are healing. Take your time, be careful and rest. A lot of us are waiting on your vlogs, so thank you from your followers.
right now your health is more important than episode releases whether
It happens once a month or two . will be standing by...👍👍
Love you two! Thanks for keeping us updated. Hope all is well and feeling all healed. ❤🙏☺️
I was surprised when the port was placed under General anesthesia in the morning and used the same afternoon for chemo for Stage IV Rectal Cancer.
It will heal fast 💙
My port was placed just like your new one. The recovery was ROUGH. But they gave me no pain meds. Just advised me to take tylenol. Constant cold packs helped some. But it has been so worth it for me. Making my weekly infusions much easier.
So sorry you are having such pain & soreness. Bless your heart. hoping the recovery will be short & the new port works great!! ❤🌹🙏
I'm glad that your ports figured out! yay!
My current port line is over my clavical, and my port is placed on the left side, I never really thought about the line being anywhere else. Thank you for helping me through my journey with my illnesses and getting my port and feeding tube.
Oh Mary. The drama. Peter's covert eye-rolls. heh.
Much love to your family. I am so sorry you have to go through this.
I'm so happy you're feeling better now I know it's been quite a while since you had this happened but I'm glad to actually see your blog for the next day and I pray that you and your family are doing well God bless you
So happy you have your new port and are recuperating well. Great to see your vlog today. I’m sure having your new port is like a big weight off your shoulders 👍❤️🙏
Good to see you, thanks for sharing Mary❤
My husband has a port for cancer treatments. The surgeon explained to us that they would be going up over his collarbone. To achieve a large artery. His line however is not visible. But he's a big muscled of a man. At least your not going to have this one in your arm pit. God bless y'all 🙌 🙏 ❤️
Veterinarian here!! We definitely use the term crepitus to describe the feeling of air under the skin… the “grating sensation” is probably referring to the use of the same word to describe the “crunchy” feeling of joints with arthritis
Yes, that placement over the collar bone is normal on the right side. That is also where mine is.
I hope and pray that this new port has healed nicely xxxxxx
So glad you are feeling better. I hope the new port is way better for you, in its placement.
I love these two, theyre such good people.
Worried about the FREY FAM. I am hoping that all is well. You keep me going. I am amazed at your love, resilience and how humble you both are. I know you are not vlogging as much, but I really hope Mary and the little ones are doing well. And of course Peter, Hairy and Oliver.
It would be great if you could tell your fans why you’re not filming anymore 🥰
Oh I miss you guys! Glad you're doing better Mary! 💕
To answer some of your questions related to your new port location… I had mine done the same way. It goes into your jugular vein instead of the subclavian. My doctors told me that the jugular vein ports tend to have less issues than subclavian veins because they don’t risk getting “pinched off” by your collarbone. The recovery was SO incredibly brutal though - I could hardly move that side for a week and I wasn’t given any pain relief, other than being told to ice and take Tylenol 😅 I pretty much camped out on the sofa propped up by pillows for a week.
A few months later, I developed a blood clot where the catheter inserted into my jugular and eventually ended up getting the port removed because of the risk of blood clots and my insurance no longer covering the blood thinner I was prescribed. Removal was a lot easier of a recovery.
So❤happy to hear you are doing better! Sure have missed ya’ll♥️
I’m glad the surgery went well Mary and I hope the recovery hasn’t been to bad 🙂.
Thank you for sharing!
Good to see you doing better, I missed you
I can’t believe it had been six years already!
I have my new one going into my neck and I prefer it. My line isn’t as prominent but I think it was when it was first done. The swelling goes down and probably won’t be so prominent
My port does the same thing with the line going over the collar bone. I have had 2 chest ports. I was grateful for being asleep for my second port placement because being awake for so much stuff was bad.
Mary I'm so glad you are feeling better just take one day at a time hi Peter
❤❤❤❤❤
Praying for you all.
A week mine was 1 day and have had mine 5 years due for a replacement. Can't wait . 😊
There used to be one big patch that had EKG pads built into it and it was placed on the back. That way it generally didn’t get gooped up from whatever they used to scrub the site with! Much easier than putting on the forehead!
..If you should happen to be nauseated , just down a chocolate bar. 😂 That was really funny.
I am sorry you have to suffer having an old port taken and a new port placed. That's a lot to go through. I am glad the procedure is over and hope you heal well. God bless you all. ❤
Looks like the surgeon placed the line on the right into the IJ (internal jugular) not the subclavian vein like the left side was. Most surgeons prefer to place it via the IJ so you don’t really have the risk of pinched off syndrome like you do with a subclavian line.
I was just about to comment the same thing! Mary looks amazing! With my last port placement, (I had it placed in my IJ as well) my doctor said I honestly looked like I had just gotten out of a bad car accident. There was black and blue bruising on both sides across my whole chest. Crazy.
Yep, mine is in my right internal jugular. (RIJV)
I have mine on the right side and they went over my collarbone too. And I had a stiff neck and was super sore for about a week. I hope you are feeling better by now
Me too. Same, on the right side and it hurt so much to move the first week. My new one, my second was placed a little higher on the same side as the old one. I got to keep my old one. So cool. It was so tiny. The new one is a smart plastic that’s the size of a quarter. Recovery hurts. Mine is just now scarring. But it’s on the bra line and so itchy while scarring so I’ve been using cortisone cream and scar stuff. I’ve flushed my new one for the first time last week and so happy it works and I have blood return. I love my port, Joy#2 lol. I hope you enjoy yours too. No poking of veins
Feel better!!
I miss you guys so much are you guys guiting UA-cam 😢 I'm glad you are good 🎉
I hope not if they did were definitely going be missed for sure..
I think they just don’t vlog as often as they used to with the babies. So I think it’s like twice a week or something. Just less than before they had babies.
Praying this port works well
I'm glade all is well God bless.
I'm having my 2nd port placed later this month as out patient. Sounds crazy to me. First time was about eleven years ago and was not fun, but I chalked it up to gravity's constant pull. I've had two open-abdominal surgeries as well, and still count my port implant as the most painful. Kind of nice hearing that I wasn't just imagining it. Glad of your reminder, as I will cook ahead and make other preparations so I can be kind to myself after. Hope you are feeling much better by now, Mary.
Hope you're OK xxx
I hope you get better soon god bless
Another great informative video
Hi there I love watching y’all videos so much even port videos and treatment I have Gastroparesis and I have a MEDI port myself I had it for about 10 months it will be a year in December 5th I always had multiple scared because of it I have my port on my right side of the chest for daily iv fuild hydration and iv medication for my nausea and your videos make me happy and inspired I never had a port removal even when I first got it I wasn’t in pain mostly discomfort and pain later since got it access afterwards no pain I access my own port myself or my mom dose it I also am 21 year old living with 1 lung,Gastroparesis I see my lung doctor to do my IPV vest and other love I can relate to your videos a bit ❤❤
Feel better Mary! rice crispies in the skin is subcutaneous emphysema! I hope this port is so much better than the last one. Can't wait to see your new Christmas ornament 😂
Never seen a tube like that under the skin. It looks like it would be annoying. As long as it doesn’t hurt. Missed you guys!
They did my subclavian port with the line over my collarbone too. We’re port twins. And yes mine hurt sooo bad for days
I've had 6 groshong catheters in my chest. It feels like I was kicked by a mule when I wake up. But I had to have them to live. Blessings to you❤
I'm sorry it hurts... not sure how long ago... (Nice hair, Peter!) Mary's early note taking is like mine... a bit of guesswork is needed 😂
Your port is IJ (internal jugular) vs subclavian that’s why they went above the clavicle. IJ decreases the risk of pneumothorax (collapse lung) which is why they likely went that route.
Mine is over the collar bone on both sides. (Had several on right and now one on left). Your bone will create a divet over the years possibly as mine has. I have had them too tight and pull on neck vein. I was never able to keep any of my old ports. Yes new area more painful for me too as they have to create a new pocket.
I was able to keep my first port. They put it in a baggy for me. I’m on my second port. When looking at it, it’s so tiny compared to how it felt in my chest lol. But I like my new one the size of a quarter.
Do they not normally go over the collar bone? I have a power port placed last December and my cord goes over my collar bone too and it’s on my right side too.
Congratulations on the baby!! Did they ask anything about the medical problems before you could adopt him?? Do they look at that???
I have only watched a few of your videos. Thank both of you for your videos. Why did you stop SQIG? Do you prefer IVIG? I have been doing IVIG for 13 years and have had all the issues with the port including occlusion. I am on my second port. My DOC. is talking about SQIG for me. Do you prefer one over the other? The IVIG works for me but is a pain with the issues. Nurse turn over and the mistakes that come with the inexperience. Home infusion is not a option now but I did that years ago with IVIG. SQIG would allow me to go back to home infusions if it works. Thanks for your videos.
Been missing your guys.
There last episode was released like 2 weeks ago a couple days after Mary turning 34 years..
Hi you 2, hope your doing better now, missed you guys 😢are you not posting alot anymore totally understand, just would love to know days your gonna try post so i can look for you love to you all and kids take care from uk 🇬🇧
I love there lives
I have been watching you for quite a while and who knew I would learn about a port on your channel and be walking into my 5 year old precious boy having surgery tomorrow for Leukemia. what side is best for a port? is one side more comfortable than the other? he is right handed.
I have had one power port n 1,year it went bad n I had to get another one but it is on the same side ...because they tried the other side. N could not use it, n they put it above the old one...I HAVE TO ALWAYS GETTING A POWER PORT BECAUSE MY VEINS ARE BAD BAD BAD N COULD NOT EVER BE USED I HAVE HAD 7 PICC LINES IN BOTH ARMS ON EACH SIDE N SO, THIS I EVER NEED ANOTHER PORT THEY TOLD ME THEY WOULD HAVE TO PUT IN MY STOMACHE I DONT WANT IT BUT I HAVE CF N MS N USE MY POWER PORT ALSO FOR MY MS TREATMENTS EVERY SIX MONTHS ..I TELL YA
N it hurt bad too
I’ve had port removal and insertion surgery and it HURTS. As does broviac insertion. Worth it though.
Could you inter change warm and cold towels to help with the soreness
I am not sure why either, but my port is also on the right side and the line goes up over my collar bone 🙂
💗
I'm sorry you're experiencing extra pain. I have a question though. Did y'all post on fb about cutting back on uploads? I know life gets more hectic with 2 children. I wasn't sure if I missed something or if something was wrong.
Crepitus is correct 😊❤ it can sound like crispies!
I'm also curious as to what kind you got? MY daughter has a Bard PowerPort.
My new one is a smart plastic port. So it doesn’t show on the X-ray. It’s the size of a quarter. It’s my second port. Just had the old one replaced with this one.
I am going throw surgery in few weeks I am having
sleeve gastrectomy surgery little scared
Your new port is probably in your internal jugular (IJ) instead of your subclavian. You’re IJ is at your neck and they run the tube over your collarbone. This placement decreases the chances of a clot forming. The subclavian runs below the collarbone and is more prone to clots.
Can confirm, chocolate tastes the same going down or up 😂
Oh my goodness ypu got knocked out?! Im in Scotland and i got my old port out on monday as it stopped working (you got that port the same time as i got this one an then we both get them changed in the same week.....weird haha) anyway i went into hospital monday morning at 8am i got sedated but when i get sedation it doesnt kick in for ages but they just start cutting you up so the whole time im chatting away and then the surgeon was like ok so your port is encapsulated in scar tissue he said it was the worst hes ever seen he discovered the port and ttubing were all working fine outside my body but my body had made scar tissue wrap round the vein and tube like a tiny strong snake that it totally closed it lol he had never seen anything like it apparently but the actual removal of the port was horrendous they dont cut your neck when taking the port out cos all they do is pull it out.....unless your me and the port has become one with my body an was stuck to my ribs and the surgeon was determined he was going to wrestle it out with his hand 😮 i suggested he try an loosen it with a pair of scissors maybe but he just laughed an said he was fine and could get it out haha so he was planning on putting the new one in the other side but decided he didnt want o put my body through more trauma and ive to go back in 3weeks which is my birthday weeks so i think not hahaha i also got to take a port home so i can educate people how it works and stuff so since they broke my old port getting it out they gave me a new one i can use to educate the nurses an doctors and all my friends an family i love educating people i was at the vet the other day and a little girl came over an asked what happened to me pointing at my GJ tube an i felt happy to tell her all aboit it but her mum gave her into trouble so i had to say to the mum that kids need to ask questions cos when i was a kid i was a sick kid and had seizures but if there waa a person with one leg or something my mum would tell me not to look which is crazy cos it just makes scared adults who dont see disabled people as normal people its really not good kids need to ask questions or they dont learn.........anyway yeah the reason you dont have a neck cut on the old port side is cos they just whip it out but the new one needs guided into the heart so th cut in the neck is to help them navigate......❤❤
No more port-a-pitty 🎉🎉🎉
Peanut butter sandwich is the thing I tell everyone. It tastes the most similar, regardless of which way it's going.
I heard this is what pilots suggest to astronauts and other people when they have to do g-force type trainings. I have no idea if this is true, but it seems legit to me. 🤷🏼♀️
Peanut butter also doesn't suck to throw up.. just so you know 😅
So, they changed sides for your new port. My current is my second new port and I think it’s above the collarbone with the catheter too. The dr put my second one a little higher. A smart plastic one, the size of a quarter. He did one larger incision and pulled the old one out through that incision and put the new one from the same incision. It’s like amazing how he did that. And then a small tiny incision in the neck where the Cather went through to the heart. I don’t quite know the right words or anatomy lol but I flushed my new lift for the first time Sunday and oh my gosh! It works and it’s awesome! The incision is sort of on my bra line and still soooo itchy so I’ve been putting cortisone cream and scar stuff on it everyday. But it works so good! I asked the supply company to send me 22 gauge needles to make this one last longer. I flushed it myself. No infections. I am so happy with my new port. I really hope your new port works way better than the old one and lasts as long as your first one or way longer. I had my first for only 4 years but I love this new one. And the new position it’s in. I just wish the incision wasn’t so itchy 😂. It usually hurts the first week from the neck and chest muscles. And gets better. I always don’t look forward to the recovery but so happy with the result.
Your husband and you always make me laugh and made me laugh in this video even though it’s not funny but about the Lego in the chest was funny. God bless with your recovery. I’m glad you have pain meds. I def needed my regular pain med I already take but used it every 6 hours after the procedure. I wasn’t prescribed pain meds but I have one already anyways. Norco. So it definitely helped. And I definitely didn’t want to wear a bra for a couple weeks. You two are awesome! Thanks for the update and laughs.
When I got my G tube, I was told "a little sore for a few days, just take Tylenol.".
Um...no. I was taking max doses if hydrocodone evey 6 hours, and still in agony, for a week. Even went to the ER to get x ray because I was sure it had moved in a wrong place or something. Took another 2 weeks of feeling like I was bring ripped in half every time I coughed, sneezed, or even laughed.
Also, yes, you have a right subclavian artery. When I was a baby, they took mine from my arm, to re-route to my lungs. So now the blood pressure in my right arm is wrong (very low)
Where is the other baby you guys were fostering
It is indeed called crepitus Mary, you're right
The crunchy feeling is called surgical emphycema
They put it in your jugglervane I have mine like that
Yeah I miss yous so much why are yous not on as much now ❤❤❤
because she just had surgery and they have 2 little ones and are living life????!
@@kathrynaraguz4816 plus Peter now has a full time job away from
UA-cam however its involves the church businesses plus ministrys.. Therefore now episodes are coming on an ad Hoff basis.. Like every 2 weeks..
I know that av been watching them for 7 years I was only asking nicely that’s all
I miss seeing Elijah
So creptis is what you said rice crispy feeling and sounding not good!!! Hope your doing better
Crepitus is correct!!
Why did u have t get a new port
Yes there is a right subclavian.
I feel this experience was just a tad overly dramatized. I’m glad you got rid of that temperamental port, Mary, and are on to your third.
It really isn't , everyone's experience is difference. Because I was in Avastin when u got mine it took over 6 months to heal properly and was painful the entire time. I could barely move my neck certain ways. Laughing was horrible
Drama makes 💰 for family vloggers