Stuck in the Hospital Infusion Center | Port Problems + Vyepti
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- Опубліковано 2 жов 2024
- [Vlog 6.2.22] - It was a long day in the hospital infusion center...
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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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Elijah's sweet smiles could cure just about anything that ails a person. He's so amazingly cute.
Baby boy smiled a full smile on camera for my first sighting. So sweet!
Mary may you be blessed with less headaches and less port problems. Dad I think Elijah enjoyed his little walk around the garden. Your a good daddy god bless.
I hope your port gets sorted out. I agree about the hospital snacks. Some foods always remind me of being in the hospital. Such as, diet lemon lime Shasta, turkey sandwiches, and little juice containers.
Yes! Apple juice with a straw and LornaDoone cookies are nostalgic
I get triggered when I see the small lemon-lime soda. I was given that so many times after I was taken off of Ventilator for days after open-heart surgery and it burned to swallow and it left a metallic taste in my mouth 😳🤢I laughed when you mentioned the Turkey Sandwich I had those at 3 or 4 in the morning I was awake and it was a 🩸 draw and I would be hungry and my nurse’s saved me a sandwich 🥪 I actually liked that better that the lunches
I can't eat graham crackers and peanut butter without thinking about the hospital
Hi my name is Taniyah Thompson
Long-time subscriber here. Mad props for this video. Love the cut aways from infusion center to Duke garden discovery. Watching Peter and Elijah explore the gardens as you narrate the realities of an infusion so clearly documents the miraculous journey you all have made. Great instructional video both on port issues and what it's like to "reenter" the hospital even though it's OP Infusion center. One suggestion: have lights turned off, helping both the headache and that low-frequency hum. Hope your CF team got you scheduled w/IR ASAP.
You said it! I agree, GOD IS GOOD! 🙏
Also long term subscriber
Love the filming .. I would love to move there for my rare immune deficiency..
Getting ready for monthly trips to get
IVIG INFUSION OF ANTIBODIES from Hizentra or Gamma-guard.
Mary is so strong..I watch these videos several times and I am Grateful for their dedication and kindness.
“As always..see you tomorrow “
Very grateful for the indoor and the outdoor clips Peter.
Definitely sounds like a fibrin sheath to me. The portagram will show if it is, and hopefully the interventional radiologist can strip the fibrin sheath with a wire via the femoral vein without having to remove the port. I just had that done about 2 months ago and (touch wood) it's been working fantastically since. I agree, nothing more annoying than a finicky port!
Hope all gets better for you 🤗💕
Elijah is growing so much and fast. He's quite adorable too and getting cuter all the time. I hope all goes well with the CF progress and possible lung transplant. Haven't heard much about that and that's okay. You've got a lot going on with a little one to enjoy. God bless you all real good today and in the days ahead.
Sweet family❤️ God Bless each of you🙏🏼❤️
While walking in the hallway at the hospital when Peter said how the wing was closed for a couple of years and mentioned it still wraps up memories of the transplant and the way he turned and looked at Mary. The love he continues to have for her. One: it’s good you guys are close to the hospital if Peter had to leave and two: Eli will grow up knowing the best way to handle situations the good and the bad.
That garden is stunning!😍
I'm so sorry that the port isn't functioning. Hopefully the CF team can get you in quickly to assess what's going on.
Elijah is growing so fast! He's so adorable! ❤️
Big hug from the Netherlands. 🤗
Duke Garden's are absolutely beautiful. What a great place for family to be able to clear their minds or just hang out while waiting for a loved one to get treatments.
Hopefully you get the port figured out before you have to use it again!
Elijah trying to turn and look for Mary is so cute. 😊 Elijah loves you both very much. You can tell.
I had my first Vyepti infusion last month, so far so good. Good luck hope it works for you.
My brain is the same way when I get worried about something being done to my body. I sometimes do breathing exercises. Good luck!
Its good to hear you say outloud that you have an issue with directions 😉. I've always had issues with driving to an unfamiliar destination! I ALMOST ALWAYS GET LOST!! I'm not alone...lol lol.
Sweet boy 👦 loves liking at his self in the camera 🎥
I'm Aussie and grew up with the "very hungry caterpillar book!" Elijah will love it when he's older ! I have a port because I had brain surgery, and I had a infusion of "altaplase aka TPA" infusion, then in interventional radiology they "plucked" the small clot out through the groin. I know it sounds gross but was only a day procedure. Here we have to let the nurse flush our port I get mine done every four weeks in a 50:5 ratio of heparin, with two flushes. I wish they let us do it ourselves! What brand needle do you use ? So sorry to hear your port is playing up. Why did the surgeon put it so close to your arm pit ???
Amen to these wheels not those wheels pre transplant !!! And amen for trikafta !! It's now been approved here in Australia for DF508 mutations at a cost of $40 AUD if you work and if you can't work on disability pension $7 !!! GOD IS GOOD!!!!
Elijah now knows your face and names. I'm astounded your hospital has such beautiful gardens. Amazing. Rest up after your big hospital day !!! What will you do now about your port ?
Love Sonia, Sydney Australia
Prayers for you and your port and cold!
I'm glad you were able to have the injection.
I'm not sure when this was, but I hope you got an appointment fairly quickly
Hope your port gets "put in its place" soon. Thank you for sharing your journey with us..Elijah is just Magic!!! xo
Mary, suggest if you have sensitive eyes, that you wear sunglasses while in the clinic under those fluorescent overhead lights. Might help.
I got prescription sunglasses one of my best purchases ever. However when doing physical therapy while wearing a mask I just did my exercises with my eyes closed.
Prayers Going Up 🙏
I love how hospital snacks are always like kindergarten snack time 😂 I always get Lorna Dunes cookies (like shortbread cookies) when I wake up from surgery. My mom now brings them to me.
Absolutely agree on the “brain tricking you into thinking you feel bad” while getting meds infused - I literally watched myself have a chemo-induced hot flash and convinced myself it was me having a stroke 🤦♀️🤣 Hope your port gets itself together soon!
There is no baby more loved in the world than Elijah!
Nice lunchbox school bus
Fluorescent lights give me migraines. So does my cycle. Idk if you have a period, Mary but if you do, try cycle tracking and see if your migraines are related to hormones
You communicate with more respect than any other person on this channel. No faces about the smells. Nice to see
I have had TPA a ton of times in my port, it’s fine. I think in people who are having strokes and getting large doses, that is where they may have a cause for concern. The amount we get in the port is so small, it’s not even an issue.
That's exactly it. TPA for a port is injected directly into the port and dwells there until flushed. The amount flushed is sub-therapeutic for systemic concern. TPA for thrombotic medical events is given in higher doses and acts systemically. In the event of preexisting bleeding or overdose, the concern is hemorrhage.
Wouldn't it better to keep the little one home away from the hospital and being out of the heat?
Yes, away from the germs..
I hope they can get your port figured out. I'm terrible with directions too! Don't give me road names, tell me to turn by the McDonald's or by that weird looking tree...lol. I don't enjoy driving anymore either because it absolutely kills my back to stay in the same position more than about 30 minutes. So I always have to get my parents or a friend to take me to my dr apts (2ish hrs away) every month.
Oh My Elijah Is Growing up So fast!!
Your baby is so adorable
Fingers crossed for your port getting itself sorted!!! They are incredible things…when they behave!!!
Interesting fact: navigation & following directions from A to B well isn’t a female trait-we are generally terrible at it-it apparently goes back to caveman times when we had no need for the skill-we stayed at camp, cooked & looked after children. It was the guys that needed navigation skills for going out hunting, then finding their way home. I thought that was interesting! I joke that if you blindfold me & spin me round 10 times, I’ll get lost for sure!!🤣
Hes a patient baby. You took his book out of reach, yanked the blanket he was playing with out of his hands, and left him with nothing to play with he could reach.
Oh dear, that port just doesn’t want to play the game 🙄. At least you were FINALLY able to get the migraine infusion so that’s something. Love you guys 🥰.
She will be pergant when she is 25 year old❤ and her baby is named Savannah
She is getting a hospital bed and hospital beeping machine 🎉
I’m glad y’all are feeling better. I have Addison’s disease and on life long steroids so I too have a port. The port study is exactly what you said. I have to laugh but I lost a good amount of weight and somehow it flipped over….
You are always in your my prayers Mary and Peter your baby boy is so beautiful praying for your port Mary God bless you all never miss a video ✝️🙏🏻❤️💙💗
When I got my eye surgery da da IV pole so heavy that I couldn’t not carrying
Peter is just really amazing, so patient!!
Why do you give a larger breastfeeding when you have a port
I hope they get your port fixed or moved soon. I know you've had difficulties with it since they put it in. 😁👋🧡
Hope you all are having a good 4th of July. Can Elijah get any cuter????🥰
I’m so thankful that your cold wasn’t too much of an ordeal for you, Mary xxxxxx
My port line coiled in my subclavian found out by X-ray. Got replaced but too tight so kept ripping. So ended up with a blood clot. Had to wait for it to dissolve with meds and 1.5 weeks out from new port. This one is under seat belt. Ouch.
I know what you mean about the clinic headache. I don't have CF, but I do have auto immune issues going on and I spend a lot of time at hospitals. I always come home with a headache. I think it is stress myself and on occasion hunger.
I noticed long Clinic days, we don't drink enough water either.
Sending love from a fellow# port problems member
Does it hurt
How old is your port? Would they consider placing a new one? I know that would be a pain but it would eliminate the problems with this port.
Mary you are a rock star. Love your video's . The baby is getting so cute. Sending hugs and prayers your way ❤
Happy 4th of July!
That face on Elijah us too much😍. God bless you all
I'm getting a port placed mid August (at duke) and I'm kinda freaking out and your videos help me see that this isn't a bad thing
I just had a port placed 2.5 weeks ago and it has been a breeze. The swelling was real and I am going to be getting my first round of constant infusions starting Monday but the recovery was a breeze!
Watching your video I was wondering why is your video on today? Then I remember, it’s Monday! Don’t feel like a it.
That little guy was sent from heaven I have no doubt what a sweet little guy ❤ I struggle will health and palative but old enough to be your mom and saying thst im so proud of you 2 to live life to the fullest great strength within forsure love your fam
I’m on Vyepti too! It’s so much better than the horrible Emgality jabs IMO.
I loved the garden that Peter an Elijah went to absolutely beautiful!
I wish Vyepti was available in the UK. It would be great for my daughter who has had migraines since she was a child.
You can develop a sense of direction but it takes practice. When I’m the passenger I don’t pay any attention but as the driver I know my way to a destination after one trip. I don’t have any sort of direction device in my car. I notice they are often wrong. I plan my route with google maps. Mary, you can get more independent if you try.
When you guys were moving to NC, and then after you first got here, 3x I posted you HAD to visit Duke Gardens as it's an awesome, beautiful, amazing place. I'm about 30 min away from the gardens, but you're only 10 or 15 min away. Isn't it great? (I'm guessing you don't read the comments, so I'm probably talking to myself).
Where is Elijah, I see a head with chubby cheeks, but the rest of him sank into the sling. LOL 😁👋🧡
Happy 4th 🇺🇸♥️
Sorry your port is being finicky Mary. I'm sure that is frustrating. I know what you mean about certain medical/health experiences make you overthink your symptoms and can be disconcerting. Glad your infusion went smoothly though, minus the port issues. 🙃
I have a Hickman and I have similar problems using TPA. I wonder when after using so much TPA is it time to change. I have TPN and hole punch of IV. Can I ask what you use IVIG for, they're thinking of starting that on me and what infusion are you doing for migraines? I use a shot but not working
So glad your body mary is stronger ihope you get your port sorted out soon and you hve no more problems once your infusion is done elijah growing up,so fast
Hope the infusion works with your migraines! Sorry your port is being difficult and not working very well hopefully they can fix it! I’m horrible with directions and do not like to drive because of it! I can still get lost using waze!!
I'm sorry you're having port issues. I just had mine evaluated. I thought I was going to need to be put on the radiology table or have it replaced the last time it was checked. When they do TPA at my clinic it's typically 2 hours then 2 more hours up to 6 hours before calling it. I've only had to go that long once. With my last evaluation I had a CT just prior to my appointment & they used it even without blood return so they didn't need to go to great lengths to poke me. So between the CT scan and the x ray they did they could tell everything was in working order. They also surprisingly was able to access their first try. My first one the tip broke off and that was pretty scary. I pray they are able to resolve yours.
I’m so glad you can get vyepti. My son has intractable migraines and vyepti allowed him two months of improvement out of 3 so he can walk outside, work on his vision and cognitive therapy to try to improve his migraine. After insurance covering his infusion for over a year they decided he does not get enough improvement. They will no longer pay. He is back to curtains drawn in a quiet room. Ugh
hi! i hope your port works well soon, i get ivig infusions once a month, and it always makes me feel sick for around a week… i was wondering if you feel sick after it too? i feel so alone with it😣
Could Peter and Elijah not wait in the building because of COVID.?!
All your videos overflow. With love and support, between you guys. And from the viewers, God bless and continue to get healthy.
💚
Hi Mary and peter
The close up on Elijah in the garden made me smile so big. ☺️ And as always y'all are such a gift from the Lord to me.
He loves you Mary. You can see it in his eyes! Mother child love. AWESOME
How did the vyepti end up going for you??? Was it easy to get it approved?? I'm working on getting it from my headache specialist. Hope your port got sorted out. I just got my port placed this month.
I just don't understand why your doctors won't just try to get to the bottom of the issue thats causing your migraines and address the issue instead of putting you on more meds. I just don't see how being on so much medication is great for your body and longevity.
Just wondering if for your endoscopy did you have any sedation or Anastasia
The park is very pretty. Yes you should do a family trip to that park. Hope your feeling better Mary soon.
Hospital lights give the worst headaches that usually become migraines
Peter is a saint. Killing time in the heat with a baby is not fun. I wonder if Mary drives? I know she said she doesn’t like to.
She does, just not very often
@@robinhutfilz5158 Peter likes to go along. Also, it helps to have an advocate when you go to appointments
Peter got sick and Mary drove once.
I don’t like hospitals they gave me a headache
Prayers for all things to be sorted out for you! Baby is soooo adorable!!!!
Hello to Mary, Peter and handsome Elijah
I wonder if marys sister takes trikafta
I’m sitting in my hospital’s infusion center watching this and I thought all the beeping in this video was happening here😂😂
How come sometimes your videos have captions some don’t? It’s really helpful for hard of hearing
this is hard as if I remember correctly, your old port had a chance to get "old". Also, just how happy your family is, with a son that knows he is LOVED so much.
I know how stressful it is to have problems with your port . Good luck with your infusion Mary ! I am so glad that your health is better and you don't have to be in the hospital so often , specially having a son now.
By the way, such a precious little boy. You two are the most wonderful loving parents (and best marriage/couple ever)
pray they can get your port working.
Good luck with your old faithful port.... You two are such great parents - a wonderful team. Elijah and you are very lucky to have each other.
Best of Luck Mary You shouldn't give a baby cold milk it upset the tummy
My port hasn’t been working right either.. I had a port dye study done in radiology a few weeks ago as well and they could see a slight fibrin sheath on the end so I had a tpa infusion which got rid of the stuff on the end but for some reason I’m still having troubles with flushing and blood return.. I hope your port can get to working like usual again! It’s a real bummer when they don’t work and ya need them
Good afternoon from San Antonio Tx. HAPPY FORTH OF JULY.
That Apple juice reminds me of hospital and that goldfish reminds me of hospital
What’s a TPA?
My port has been hard to access because I’ve gained weight so it’s hard to feel it. It only took 2 try’s tonight.