My daughter ended up with 3 different ports by time she was done with t-cell lymphatic leukemia treatment, septic did first port in, second one which was clogged, but third time the charm and she is still in remission, best wishes for ur treatment
Long day. Wish you didn’t need a port at all. Sometimes after losing my husband to cancer, having CF and surviving chemo and radiation myself, I look in the mirror, and pound through all of it. Port surgery will go fine. Rest up and rejuvenate.
As a pediatric oncology nurse who deals with ports all day long, it’s so helpful for me to see and hear your raw experience dealing with people messing with port and the frustrations that come along with it. So sorry this port is a goner, hope the new one will be a stress reliever once it’s all in and settled ❤️
Mary as someone who is a nurse and worked in operating rooms over 20 yrs, it’s also cautionary to have sterile instruments available if that very slight chance, something particular should go wrong. Mary 🤗 ❤️🙏
as soon as I saw the title and thumbnail I cheered out loud I hate that Mary had to deal with that port being an issue for so long since it's been trouble since Day 1 but I am glad it's getting replaced
I think once you have your new port Mary you will be so relieved and a weight will be off your shoulders. It’s been giving you problems for quite a while. Praying you can have it done soon 🙏🙏
I have a Hickman central line and originally had a general surgeon put it in and replace it. After the surgeon stopped listening to me and just placing it where ever he wanted, I decided to try IR and amazingly went so much better than the OR. they were able to sedate me like the OR (with anesthesia present) and it went flawlessly and the central line is actually In a good place! Don’t count IR out ever, just ask for anesthesia to be present to sedate you. They should oblige.
Makes total sense, thank you for the insight! My Dad was a respiratory therapist for 40 years and he always said to never let a doctor stick you because they haven't had the practice. It's also just like a doc to think that they know whats best for YOUR body. I mean, just think if he were in your shoes, i highly doubt he would accept that attitude from HIS doctor. Drives me batty! We shouldn't have to fight so hard. Now I'm mad lol, sorry. Hope you have an awesome, joyful, doctorless weekend 💖🙏🕊
@sonia15702 Australian medicine has really been on the cutting edge as of late, whereas US medicine has declined. Between our tanking education system, overbearing and choking new legislation allowing the government and insurance companies to have one foot between patient and doctor, and this martial law attitude doctors have over their patients autonomy... Well, it's just an infuriating and scary state. I'm so happy you guys are carrying the torch, though, and are receiving such great care! 💖🙏🕊
Sorry to hear that about your port, and I know from experience that is a bit of a pain to have to go through the port removal/port placement again, but I'm glad that you won't have to deal with your problem port any more.
I just got my port removed! We were in the testing phase of seeing if my body could maintain itself without any intervention and aside from an infusion here and there we haven't had to do anything drastic of reason to put the port back in so... Hope all goes well with your port! 😊
0:08 I can see "viable" as a medical term, but "a goner"...? 10:24 Those are the best! You remind me of when I had to get blood drawn. I was convinced she still needed to do it, when she was already finished. 13:18 You make that sound so funny! 🙂
That port never looked right from the very beginning. Compared to the first one you had it just seemed very oddly placed. Blessings to you to get a new port that works properly!❤❤❤
I'm on my 3rd port in almost 2 years. IR has placed all mine, but im very skeptical and very protective over my port when anyone but my home health nurse manages it.
I wish you could use my surgeon that is up here close to where you used to live. The man is so incredibly good that I had no pain and absolute zero discomfort after! If I hadn’t known that it was just done, I would never had suspected that it was! I pray it goes this well for you as well 🙏🏼🙏🏼🙏🏼
I’m praying for u that you get new port.. Mary I’m so proud of you that u did.also I went camp I climb a towner I was high and then I zip line down it lot of fun but I got hurt bruised on my leg .. enjoy you and Peter enjoy and kids to family
"We have a plan in case it doesn't work." As someone with a chronic illness that needs management, I need a PLAN. One medication has stopped working and part of me is in flux as we haven't figured out a plan yet. I have several doctors involved, and they are great people. But as the patient, I WANT A PLAN! So thank you Peter!
I agree with you as far as the port. Being lower being in a better position. Because Ray's port was in a lower position and it lasted over 10 years. And they put it up higher. We had several problems, and we are on our Lake fourth port. And they said it's better if it's up higher. So maybe for them, it's better. But I think for the patient's better if it's lower. Well, I wish you a lot of luck I don't know how many of them you have had.
I’m having migraine surgery (Reed Procedure) and I’m nervous but happy too! Having a battery similar to a Pacemaker battery in my chest is a crazy thought!
When I had childhood Leukemia in the early 90s I started with a Broviac central line which got infected so then they took that out and gave me a Metaport that never gave me any problems and got taken out when I didn’t need it… Now just have a 1.5 inch battle scar
I feel like the childrens Hospital in Boston seemed to be able to handle your port issues way better. And you had alot less issues with the Boston Hospital. Hopefully this new Hospital can get their act together.
I have a port, too. I only got one because I ran out of veins and I need to get poked fairly often, so that was basically the only option. I’ve had mine for 3.5 years and it’s working great. Good luck with your next replacement surgery. I’m nervous about mine not working someday, too. Is it dangerous when it stops, or you just can’t use it?
I think when you have an implanted device of any kind, its easier for your mind to cope with either yourself or a trusted caregiver touching the area; those that don't know how it sits in your particular body can maneuver in such a way that makes you uncomfortable, just because its really not a "one size fits all (or sits in everyone's chest) the same way. Every body is different, so the way you feel [the medical device] in your body is unique. Stay strong, Mary, you're a warrior!💜
That goes with any implant devices that run on internal battery power like pace makers or implants for kidneys for urineating implants The batterys probably die at some point.. Need replacing..
@@ivark56ofPA Check, I have a biventricular pacer with a defibrillator, but battery replacement isn't as frequent as one might think...average replacement time is once every few years. I don't think anyone wants to adjust to an internal device, but if it improves quality of life...
@@ivark56ofPAportacaths don’t run on battery like the other devices you mentioned. The reason why portacaths need replacing is totally different and different causes. Like if the catheter moves out of place or gets a kink or something.
Oh Mary so sorry your port isn't working. I just had mine accessed today for my immunotherapy so I know how it feels and to keep getting it accessed and not having it work i can't even imagine, I am frustrated for you.
I need to tell you the date in description box is wrong this video episode Was recorded on JUNE 23rd not july as of yet.. This is still about a 6 weeks behind than the current date which today episode is released On AUGUST 8th which is t minus 10 days until MARYS BIRTHDAY Turning 34 years very soon.. So dont forget viewers to send BIRTHDAY Greetings to mary on AUGUST 18th her official big day..🎂🎂❤❤
I know the feeling of the unsettling when you know nothing is about to happen but you feel like it is. I have spina bifida so I have had many medical procedures done over the yrs .
Hi Mary! I end up in IR at least 4 times a year because they do IR guided spinal taps on me regularly. (I have intracranial hypertension) so it doesn’t bother me anymore. I also have a port, that was put in in IR three years ago I think. My new doctor, the first time I saw him was like “we need to get rid of the port”, and I was like “um, let’s table that for now.” I understood what he meant. I’m immune compromised and he was switching me from infusions to injections to treat my disease. But I started the injections, and he figured out that I’m highly allergic to that med. so now I’m going to be having infusions again soon, this time of a newer drug. So I’m glad I made it clear to him that I wanted to wait on that. I’m guessing he’s never been a patient with a port. If he had been, he would know that having one put in is very painful after the local wears off. I don’t want to chance having to do it all over again this soon. Also, I’m finding out next week when I’m going to have a shunt put into my spinal canal by a neurosurgeon. I don’t want to be in the hospital, having major surgery, with no port. My infusion nurse said that since I’ve lost 80 lbs in the last 18 months, it looks like it’s going to be easy to just put in a regular IV. But then she said “if we can’t, you don’t have to go as far as to get another port. They can just put in a picc line or a central line. In my mind I was like “excuse me, what???” The infusions I receive make me immune suppressed. Isn’t having a picc line or central line a bigger infection risk than having a port? Unfortunately I’ve moved much further from the hospital that has treated me up until now. (It was too much money to live closer. We had to give up our apartment. I’m hoping to move out of state sometime in 2024-2025 and NC is at the top of my list of places to move to). But I’ve been warned by my doctors in Los Angeles that being treated out here in the boonies (the high desert, in this case) can be dangerous. So I have to stay alert, and not allow them to do anything I know they’ve not shown me that they have A LOT of experience doing.
Mary, remember those toys mine was a yellow horse, you pushed the bottom and the horse would collapse and kinda jerks around. We got them in the 80s at Easter. Was it like that?
My comment is a lot longer than I was going to say, but, I got off topic. I hope you read it still. I'm on my 4th port and this port has been a big issue since they put it in lower since all of my ports are on my right side because my pacemaker is on the left side. Since this is the 4th one and it's in some of the breast tissue, it's deeper down, plus a lot of scar tissue. I have to use my port everyday for my meds. I do worry about when I have to have mammograms. That's because they always have to do a second or third one because of the scar tissue. After the last time, they will be doing ultrasounds of the breast now on. My first port and second one was because I ended up with an infection and I had sepsis 2 times and c-diff. So they had to remove all foreign bodies. They said that when it comes to those kinds of infections and infections in the blood that all foreign body things like the port had to be removed. They put the pacemaker in after the second one. On the third one which was 2 1/2 years ago, they had to remove it again because I ended up with a staff infection on the leads of the pacemaker which had to be removed also. My cardiologist and the hospital in Southern Utah couldn't remove the pacemaker since they had to put in a special pacemaker that's a leadless one. When they found out that I qualified for the new leadless Medtronic Leadless Pacemaker they had to transfer me to the Heart and Lung Institute in Salt Lake City. I was the first person in Southern Utah to have this kind of pacemaker that is the size of a tablet and it goes directly into one of the heart chambers. Once the cardiologist and a lot of doctors in Salt Lake was notified that I was qualified to get it, they were much more excited than I was. They even had to send a separate technician to my cardiologists office just to get the readings for it and the technician had to train my team about how to adjust my pacemaker and to read it correctly. It was pretty cool to learn the difference. Anyhow, since they had to removed my port in Southern Utah. They had to put a piccline in until I could get the new port about 4 months later. When they put the new one in, they tried to clean up the scar tissue from the other ports, it helped somewhat for a while. About 6-8 weeks later more scar tissue started to built up again and has started causing more problems. Now, I've had to go and have radiology look at my port a number of times because they couldn't access it. They tried to start regular IV lines and they can't unless they put them in my feet or legs. Since I have a lot of nerve pain since the covering (Mylene Sheaths) that protect the nerves have never repaired themselves because of me having Guillian Barre Syndrome. So, it's extremely painful. So, we don't do that if we can find another way. Since the scar tissue is pretty bad now and the port is in the top of the breast tissue, they have to use a 1 inch needle to access it. Port problems are no fun at all. I will be for sure keeping you in my thoughts and prayers for sure.
Oh that’s sounds painful. I know what nerve pain feels like from MS, especially in the feet. Jesus took it from me a couple years ago. I still have muscle pain but nothing is as painful as nerve pain. I really hope the new pacemaker works for you for a long time and I hope they get your port issues resolved so they don’t have to poke where you have nerve pain. I’ve used a 1” port needle because a nurse would say my port is deep. I no longer see that nurse. I access my own port now and she’s not happy with that. So I told her I’m not coming back and went elsewhere for my MS infusions. Best decision ever! The new nurse is on board. Unfortunately I did have to have my port replaced because she could get blood return from it either but my port would receive medication so we still used my port for the infusion. I have #2 in my chest now. The other one, the catheter moved from where it was originally. I got to keep my first port. It looks so much tinier in hand than under the skin. No one will be touching this port but me and anyone I may choose to trust. I’m protective of this one.
Do you record with your phone? You guys are inspirational, I am terminal, I have had a very hard past 3 years & you are what keeps me going because, no matter what, you push through & you get out the other side, I dont know whether it's like it for you guys, but I feel people & couples become stronger through these issues, am I right? Xxxx, Hope you're all doing well. & Elijah.
I got my first port inserted in mid-June and have had issues with it since the end of June, not being able to get blood drawback. I finally found out last week that the catheter was encased in fibrin sheath and on Friday I had to have a procedure to remove the fibrin sheath
Those are some aces horror stories. The chemo nurses in the infusion room at the Stanford Cancer Center are amazing. Personally I don’t have any horror stories. I have been fortunate to get people in all the hospitals that I’ve been in. My port is on the right side of my chest. The chest is the best placement from what I’ve heard. At least the status has been confirmed. When recovery is over you may wonder why you waited so long. It’s not productive to think of the what if. Everything will work out in the end.
Mary, I have a question, what's the difference between an "I.R" & an "O.R"? You see, I too had a port-cath fitted, but because I was so young, I was sedated under general anaesthetic/anaesthesia, whatever you wanna call it, because I was only 11 months, I had mine for cancer not CF but it had the same sort of use, it was so I didnt have to be prodded with a needle all the time, being so young it would be scary, so that was the easiest route for them, so they didnt have to pin me down for my medication regularly, as it'd be traumatic for me too, so that's all I wanted to ask, I couldn't find any info about it on google, I thought you're the pro, you'd know all the medical gadgets & terms.
I have a Port as well! It's miserable at time. Yes I think they push to hard. I just had my 3 exchange, I so over it but need it for my MS treatment. I feel you hugs to a good one.
I use my port for my ocrevus infusion for MS. So much easier than them using veins. A nurse has never used my veins for ocrevus infusions. Ever! And I changed to a new clinic because I accessed my own port and the nurse called and said it’s my vein or nothing and I said no and never came back. The new place, I love the nurse and I have a tv to watch with movies and my mom can come in with me. I love the new place. The best decision ever! The nurse is supportive of me accessing my own because I know my own port and it would be faster if it’s already accessed and they can just start with premeds. But, she couldn’t get blood return either but able to use my port because I could feel the effects of the medicine and I could taste the saline. I had to have my port replaced after that. I didn’t go under general anesthesia, I had local anesthesia in an outpatient clinic. I could feel what was going on and I got light sedation but didn’t fall asleep. It wasn’t too bad. Now I have port #2. Fully functioning. The Cather moved out of place and the top was clogged so I could receive medicine but not get blood. Oh well. The part that is just really annoying, is in nm, everyone is weird about people taking care of their own ports. They’re like you can get infection or sepsis. It’s like, that’s only if I don’t do it sterile which I know how to do it sterile. Hello people, medical professionals mess up too but they don’t suffer the consequences. So, this port, I feel protective of and like only I will take care of it and no one else. I’m a hard stick so having a port is easier getting lab draws and anything else a line is used. Sorry for the long reply. I’ve had my challenges too
Omg I can’t stand when they push super hard :/ it’s actually painful! I also can’t stand when they don’t anchor it when they deaccess you! That’s also extremely painful. I’m sorry you’re going through this, I hope things get better!
i,m going to have to have intravenous antibiotics,they told me that i could not have a port,they told me that i have to have a picline.i,m surprised that they are going to let you have another port,i bet they say that you have to have a picline.
I have had 2 ports and I am currently on my 4th Hickman. I literally drew lines with marker where my bra straps are so they would put the line in a comfortable place. That has always helped with placement. Interventional Radiologists do ports and lines all day long. In my opinion they are far more experienced than general surgeons..
Hi Mary and Peter,been awhile since I watched a video of you guys (content lately has been sort of not peeking my interest now a days) but this one caught my interest because I too have been suffering with my port this year more than ever. My port has had its ups and downs like your's working and soon I'm hoping to get into IR to have it replaced but have procrastinated to schedule it all Summer because it's been working ok. Will see next week when my mom accesses it at home if it's time to call IR and get a consultation scheduled before the procedure and also going to tell them to put in an IV and knock me out with anesthesia so I can't feel any pain (make sure the tell your IR team that too Mary). Pray you can get it replaced with success and recover quickly.
Yes this also happened with my first port, it was used so often that the skin over it become necrotic and one needle change after the port popped out through skin. That was removed and temporary central line used until I had a new port, that was 17yrs ago and this one is still going strong, I have been really lucky with it.
The nurse that was changing the needle at the time (in my home) went pale when the post came out with the needle… and all I was thinking was Oh great this means a hospital stay! Hope you are doing ok @thebooknerd145
The entire family is going to be missed with they decided to Quit the FREYLIFE SERIES FOR GOOD AFTER 9 years and today august 24th would have been the start of YEAR 10 for them if they stayed!!🤘🤘😃❤❤👍
Mary do you even NEED it at this point? Could you just get it completely removed and not have it re-installed? If you ever need it again, it can be reinstalled at that time. Its just ONE LESS thing to worry about.
That was probably might thought as well now with your trikafta medication working well almost 4 years already and your already Had your feeding tube taken out and your body is currently stable with Trikafta medication that I think that port is really not necessary that I Think is form of rejection from the body it basic rejecting it is what Symptoms of pain that you're going through right now..
Veins collapsed and don’t work anymore is a issue I have that issue I think Mary has that issue. Even a central line in hand even last time she had that had issues she gets blood work and infusion several times a month it better to have the port it more risky but better
@@TechGirl84 I mean I have one but I also am illegible for Trikafta still, so I still use mine quite a bit, so I get it. But even infusions at this point might be unnecessary. Most of my CF friends on Trikafta were able to stop all of that stuff.
GUESS WHAT DAY IS TODAY ITS MARY FREYS BIRTHDAY !! So everyone should send her birthday greetings today she was born On AUGUST 18th 1989 turning 34 years old !!!🎂🎂🎂🌋🌋🎉
Tomorrow August 18th is MARY FREYS BIRTHDAY don't forget viewers to send her birthday greetings and wishes!! She will be officially turning 34 years old!!🎂🎂🌋🌋❤
My daughter ended up with 3 different ports by time she was done with t-cell lymphatic leukemia treatment, septic did first port in, second one which was clogged, but third time the charm and she is still in remission, best wishes for ur treatment
Long day. Wish you didn’t need a port at all. Sometimes after losing my husband to cancer, having CF and surviving chemo and radiation myself, I look in the mirror, and pound through all of it. Port surgery will go fine. Rest up and rejuvenate.
As a pediatric oncology nurse who deals with ports all day long, it’s so helpful for me to see and hear your raw experience dealing with people messing with port and the frustrations that come along with it. So sorry this port is a goner, hope the new one will be a stress reliever once it’s all in and settled ❤️
Mary as someone who is a nurse and worked in operating rooms over 20 yrs, it’s also cautionary to have sterile instruments available if that very slight chance, something particular should go wrong.
Mary 🤗 ❤️🙏
Mary I am wishing that you and your husband and family are allsafe they are showing where trees are toppling praying that y'all are okay
I’m on my second port. I know how I felt when my first one quit working.
as soon as I saw the title and thumbnail I cheered out loud I hate that Mary had to deal with that port being an issue for so long since it's been trouble since Day 1 but I am glad it's getting replaced
second comment PETER, I'm proud of you for telling Mary she did a good job and you are proud of her. We're all proud of her.
I think once you have your new port Mary you will be so relieved and a weight will be off your shoulders. It’s been giving you problems for quite a while. Praying you can have it done soon
🙏🙏
Hope you all are ok!
I have a Hickman central line and originally had a general surgeon put it in and replace it. After the surgeon stopped listening to me and just placing it where ever he wanted, I decided to try IR and amazingly went so much better than the OR. they were able to sedate me like the OR (with anesthesia present) and it went flawlessly and the central line is actually In a good place! Don’t count IR out ever, just ask for anesthesia to be present to sedate you. They should oblige.
I agree. interventional radiologists do this all day everyday and they are far superior!
Makes total sense, thank you for the insight! My Dad was a respiratory therapist for 40 years and he always said to never let a doctor stick you because they haven't had the practice. It's also just like a doc to think that they know whats best for YOUR body. I mean, just think if he were in your shoes, i highly doubt he would accept that attitude from HIS doctor. Drives me batty! We shouldn't have to fight so hard. Now I'm mad lol, sorry. Hope you have an awesome, joyful, doctorless weekend 💖🙏🕊
@@MayimHastingsI had an IV done by radiology once and was totally flabbergasted at how well it went. I am a hard stick...
They refuse to sedate me even tho I have MASSIVE medical PTSD and they know and my heart rate is always in the 200s when im there
@sonia15702 Australian medicine has really been on the cutting edge as of late, whereas US medicine has declined. Between our tanking education system, overbearing and choking new legislation allowing the government and insurance companies to have one foot between patient and doctor, and this martial law attitude doctors have over their patients autonomy... Well, it's just an infuriating and scary state. I'm so happy you guys are carrying the torch, though, and are receiving such great care! 💖🙏🕊
Sorry to hear that about your port, and I know from experience that is a bit of a pain to have to go through the port removal/port placement again, but I'm glad that you won't have to deal with your problem port any more.
I just got my port removed! We were in the testing phase of seeing if my body could maintain itself without any intervention and aside from an infusion here and there we haven't had to do anything drastic of reason to put the port back in so... Hope all goes well with your port! 😊
I wish you well, Mary on getting a new port. God is carrying you through this. Warm hugs & love sent. ♥️🙏🏻🙏🏻🙏🏻
0:08 I can see "viable" as a medical term, but "a goner"...?
10:24 Those are the best! You remind me of when I had to get blood drawn. I was convinced she still needed to do it, when she was already finished.
13:18 You make that sound so funny! 🙂
That port never looked right from the very beginning. Compared to the first one you had it just seemed very oddly placed. Blessings to you to get a new port that works properly!❤❤❤
Agree. Awful placement!
Happy Birthday Mary, hope everything is ok. Sending love from Jacqui Perth, Western Australia.
I'm on my 3rd port in almost 2 years. IR has placed all mine, but im very skeptical and very protective over my port when anyone but my home health nurse manages it.
IR is the way to go. I’ve had all my central lines done in IR, they know what they’re doing!
Hoping the Frey's are doing well.
Prayers up.
I m praying that the next port will be as good as your first one. You got this!
Amen
I wondering how the port replacement went this is probably contributing
Your guys absence right now .. I hope nothing bad as happened..
@@ivark56ofPA you were thinking of them and they posted
Wow peter be safe ,you looked so tired.❤
I think that job is making him exhausted with those long hours
Im afraid of his drivng skills I really don't want to see him in
A wreck one day..
@@ivark56ofPADistracted driving … so dangerous. Exhausted distracted driving … worse. : (
@@zuzuspetals8323 i know zuzu ..
Can't believe I've managed to watch a video as its been uploaded. There's a 1st for everything
I wish you could use my surgeon that is up here close to where you used to live. The man is so incredibly good that I had no pain and absolute zero discomfort after! If I hadn’t known that it was just done, I would never had suspected that it was!
I pray it goes this well for you as well 🙏🏼🙏🏼🙏🏼
I’m so sorry port 2.0 has given up. Here’s to your new version xxxxx
Love y'all MARY
Poor Mary. Good job. Its good. You will get through this and be on the other side soon!
I’m praying for u that you get new port.. Mary I’m so proud of you that u did.also I went camp I climb a towner I was high and then I zip line down it lot of fun but I got hurt bruised on my leg .. enjoy you and Peter enjoy and kids to family
Good luck with your port I hope everything work out OK for you God bless.
I love your perspective on this: have to do the hard adulting stuff to be able to do the good stuff ❤
"We have a plan in case it doesn't work." As someone with a chronic illness that needs management, I need a PLAN. One medication has stopped working and part of me is in flux as we haven't figured out a plan yet. I have several doctors involved, and they are great people. But as the patient, I WANT A PLAN! So thank you Peter!
I agree with you as far as the port. Being lower being in a better position. Because Ray's port was in a lower position and it lasted over 10 years. And they put it up higher. We had several problems, and we are on our Lake fourth port. And they said it's better if it's up higher. So maybe for them, it's better. But I think for the patient's better if it's lower. Well, I wish you a lot of luck I don't know how many of them you have had.
Ports can be so finicky! Hope your new one is light years better!
I’m having migraine surgery (Reed Procedure) and I’m nervous but happy too! Having a battery similar to a Pacemaker battery in my chest is a crazy thought!
When I had childhood Leukemia in the early 90s I started with a Broviac central line which got infected so then they took that out and gave me a Metaport that never gave me any problems and got taken out when I didn’t need it… Now just have a 1.5 inch battle scar
I feel like the childrens Hospital in Boston seemed to be able to handle your port issues way better. And you had alot less issues with the Boston Hospital. Hopefully this new Hospital can get their act together.
Just because a hospital does things differently doesnt mean they are doing it wrong or badly.
I have a hickman central line after 2 dozen failed ports best decision I ever made
I have a port, too. I only got one because I ran out of veins and I need to get poked fairly often, so that was basically the only option. I’ve had mine for 3.5 years and it’s working great. Good luck with your next replacement surgery. I’m nervous about mine not working someday, too. Is it dangerous when it stops, or you just can’t use it?
I’ll try to have a relationship like the one that you and Peter have!. Relationship goals!!!! Im a old follower from you guys.
Prayers & Hugs
I have my port for 7 years. I guess I have been lucky, only one time it wouldn’t work but they put something in it and it cleared.
Buy the time this video is uploaded Mary probably already have her new port since they upload x amount of weeks ahead of time
I’m a student at UNC Chapel Hill… so I’m literally RIGHT DOWN THE ROAD FROM YALL! I would love to meet you guys sooo much!
I have a shunt which causes my to have headaches when it breaks. Be thankful your migraine is not a warning sign that your port is not working.
Prayers 🙏 sis
Miss you guy's
Patients everywhere: I feel uncomfortable
IR docs: *gaslights*
Miss you guys
Never thought of making an ornament from my port.
You are amazing!!! Thank you for sharing even when your stressed!!
I had to go to the o.r. to have my port removed so my hubby wasnt allowed
Even with Trikafta, still all of the hospital visits. I'm sorry you have to live life going to the hospital occasionally.
I think when you have an implanted device of any kind, its easier for your mind to cope with either yourself or a trusted caregiver touching the area; those that don't know how it sits in your particular body can maneuver in such a way that makes you uncomfortable, just because its really not a "one size fits all (or sits in everyone's chest) the same way. Every body is different, so the way you feel [the medical device] in your body is unique. Stay strong, Mary, you're a warrior!💜
That goes with any implant devices that run on internal battery power like pace makers or implants for kidneys for urineating implants
The batterys probably die at some point.. Need replacing..
@@ivark56ofPA Check, I have a biventricular pacer with a defibrillator, but battery replacement isn't as frequent as one might think...average replacement time is once every few years. I don't think anyone wants to adjust to an internal device, but if it improves quality of life...
@@ivark56ofPAportacaths don’t run on battery like the other devices you mentioned. The reason why portacaths need replacing is totally different and different causes. Like if the catheter moves out of place or gets a kink or something.
@@jessicajarsak7812 ok is that what you read on line OK .
Thanks for the info..
Oh Mary so sorry your port isn't working. I just had mine accessed today for my immunotherapy so I know how it feels and to keep getting it accessed and not having it work i can't even imagine, I am frustrated for you.
I need to tell you the date in description box is wrong this video episode
Was recorded on JUNE 23rd not july as of yet.. This is still about a 6 weeks behind than the current date which today episode is released
On AUGUST 8th which is t minus 10 days until MARYS BIRTHDAY
Turning 34 years very soon.. So dont forget viewers to send BIRTHDAY
Greetings to mary on AUGUST 18th her official big day..🎂🎂❤❤
Can't you ask the to let y'all access the port even if you have to do it where they can see you access it?
I know the feeling of the unsettling when you know nothing is about to happen but you feel like it is. I have spina bifida so I have had many medical procedures done over the yrs .
Happy Birthdayyyy Mary 🎉❤
Here’s to getting the new port not basically in your armpit Mary ☺️.
Hi Mary! I end up in IR at least 4 times a year because they do IR guided spinal taps on me regularly. (I have intracranial hypertension) so it doesn’t bother me anymore. I also have a port, that was put in in IR three years ago I think. My new doctor, the first time I saw him was like “we need to get rid of the port”, and I was like “um, let’s table that for now.” I understood what he meant. I’m immune compromised and he was switching me from infusions to injections to treat my disease. But I started the injections, and he figured out that I’m highly allergic to that med. so now I’m going to be having infusions again soon, this time of a newer drug. So I’m glad I made it clear to him that I wanted to wait on that. I’m guessing he’s never been a patient with a port. If he had been, he would know that having one put in is very painful after the local wears off. I don’t want to chance having to do it all over again this soon. Also, I’m finding out next week when I’m going to have a shunt put into my spinal canal by a neurosurgeon. I don’t want to be in the hospital, having major surgery, with no port. My infusion nurse said that since I’ve lost 80 lbs in the last 18 months, it looks like it’s going to be easy to just put in a regular IV. But then she said “if we can’t, you don’t have to go as far as to get another port. They can just put in a picc line or a central line. In my mind I was like “excuse me, what???” The infusions I receive make me immune suppressed. Isn’t having a picc line or central line a bigger infection risk than having a port? Unfortunately I’ve moved much further from the hospital that has treated me up until now. (It was too much money to live closer. We had to give up our apartment. I’m hoping to move out of state sometime in 2024-2025 and NC is at the top of my list of places to move to). But I’ve been warned by my doctors in Los Angeles that being treated out here in the boonies (the high desert, in this case) can be dangerous. So I have to stay alert, and not allow them to do anything I know they’ve not shown me that they have A LOT of experience doing.
Yeah, nothing prepares you for that local wearing off.
Hi Frey family!! Love your videos!
Mary, remember those toys mine was a yellow horse, you pushed the bottom and the horse would collapse and kinda jerks around. We got them in the 80s at Easter. Was it like that?
Are they in process for adopting the younger baby? 💛💛
Good luck
When I saw the title I thought that's not gonna be an ornament 😊
Good luck with the new one.
My comment is a lot longer than I was going to say, but, I got off topic. I hope you read it still.
I'm on my 4th port and this port has been a big issue since they put it in lower since all of my ports are on my right side because my pacemaker is on the left side. Since this is the 4th one and it's in some of the breast tissue, it's deeper down, plus a lot of scar tissue. I have to use my port everyday for my meds. I do worry about when I have to have mammograms. That's because they always have to do a second or third one because of the scar tissue. After the last time, they will be doing ultrasounds of the breast now on. My first port and second one was because I ended up with an infection and I had sepsis 2 times and c-diff. So they had to remove all foreign bodies. They said that when it comes to those kinds of infections and infections in the blood that all foreign body things like the port had to be removed. They put the pacemaker in after the second one. On the third one which was 2 1/2 years ago, they had to remove it again because I ended up with a staff infection on the leads of the pacemaker which had to be removed also. My cardiologist and the hospital in Southern Utah couldn't remove the pacemaker since they had to put in a special pacemaker that's a leadless one. When they found out that I qualified for the new leadless Medtronic Leadless Pacemaker they had to transfer me to the Heart and Lung Institute in Salt Lake City. I was the first person in Southern Utah to have this kind of pacemaker that is the size of a tablet and it goes directly into one of the heart chambers. Once the cardiologist and a lot of doctors in Salt Lake was notified that I was qualified to get it, they were much more excited than I was. They even had to send a separate technician to my cardiologists office just to get the readings for it and the technician had to train my team about how to adjust my pacemaker and to read it correctly. It was pretty cool to learn the difference. Anyhow, since they had to removed my port in Southern Utah. They had to put a piccline in until I could get the new port about 4 months later. When they put the new one in, they tried to clean up the scar tissue from the other ports, it helped somewhat for a while. About 6-8 weeks later more scar tissue started to built up again and has started causing more problems. Now, I've had to go and have radiology look at my port a number of times because they couldn't access it. They tried to start regular IV lines and they can't unless they put them in my feet or legs. Since I have a lot of nerve pain since the covering (Mylene Sheaths) that protect the nerves have never repaired themselves because of me having Guillian Barre Syndrome. So, it's extremely painful. So, we don't do that if we can find another way. Since the scar tissue is pretty bad now and the port is in the top of the breast tissue, they have to use a 1 inch needle to access it. Port problems are no fun at all. I will be for sure keeping you in my thoughts and prayers for sure.
Oh that’s sounds painful. I know what nerve pain feels like from MS, especially in the feet. Jesus took it from me a couple years ago. I still have muscle pain but nothing is as painful as nerve pain. I really hope the new pacemaker works for you for a long time and I hope they get your port issues resolved so they don’t have to poke where you have nerve pain. I’ve used a 1” port needle because a nurse would say my port is deep. I no longer see that nurse. I access my own port now and she’s not happy with that. So I told her I’m not coming back and went elsewhere for my MS infusions. Best decision ever! The new nurse is on board. Unfortunately I did have to have my port replaced because she could get blood return from it either but my port would receive medication so we still used my port for the infusion. I have #2 in my chest now. The other one, the catheter moved from where it was originally. I got to keep my first port. It looks so much tinier in hand than under the skin. No one will be touching this port but me and anyone I may choose to trust. I’m protective of this one.
Does the port interfere with holding the boys? Have you gotten your van yet?
Do you record with your phone? You guys are inspirational, I am terminal, I have had a very hard past 3 years & you are what keeps me going because, no matter what, you push through & you get out the other side, I dont know whether it's like it for you guys, but I feel people & couples become stronger through these issues, am I right? Xxxx, Hope you're all doing well. & Elijah.
My port-a-cath was blocked and eventually removed, tried everything to save it
❤❤❤
I got my first port inserted in mid-June and have had issues with it since the end of June, not being able to get blood drawback. I finally found out last week that the catheter was encased in fibrin sheath and on Friday I had to have a procedure to remove the fibrin sheath
Hope you are doing well now.. prayers
do you really need one right now? Try and manage without if possible XX
@@amandajones9309 not sure if you are replying to me or meant this for Mary? But for myself, yes I do.
@@amandajones9309that’s not a very good question. People get ports for a reason.
Those are some aces horror stories. The chemo nurses in the infusion room at the Stanford Cancer Center are amazing. Personally I don’t have any horror stories. I have been fortunate to get people in all the hospitals that I’ve been in. My port is on the right side of my chest. The chest is the best placement from what I’ve heard. At least the status has been confirmed. When recovery is over you may wonder why you waited so long. It’s not productive to think of the what if. Everything will work out in the end.
I don’t understand why they won’t let you access it in the study.
Im 12 and i have a Gtube a Central Line and a Ostomy i wish u well and how did u go through all of this?
Mary, I have a question, what's the difference between an "I.R" & an "O.R"?
You see, I too had a port-cath fitted, but because I was so young, I was sedated under general anaesthetic/anaesthesia, whatever you wanna call it, because I was only 11 months, I had mine for cancer not CF but it had the same sort of use, it was so I didnt have to be prodded with a needle all the time, being so young it would be scary, so that was the easiest route for them, so they didnt have to pin me down for my medication regularly, as it'd be traumatic for me too, so that's all I wanted to ask, I couldn't find any info about it on google, I thought you're the pro, you'd know all the medical gadgets & terms.
Missing you guys. I hope all is ok and well! ❤️💜
I hope there not planning to quit the UA-cam series for good..
If they did we will definitely miss them for sure ..❤❤😮😂😊
I have a Port as well! It's miserable at time. Yes I think they push to hard. I just had my 3 exchange, I so over it but need it for my MS treatment. I feel you hugs to a good one.
I use my port for my ocrevus infusion for MS. So much easier than them using veins. A nurse has never used my veins for ocrevus infusions. Ever! And I changed to a new clinic because I accessed my own port and the nurse called and said it’s my vein or nothing and I said no and never came back. The new place, I love the nurse and I have a tv to watch with movies and my mom can come in with me. I love the new place. The best decision ever! The nurse is supportive of me accessing my own because I know my own port and it would be faster if it’s already accessed and they can just start with premeds. But, she couldn’t get blood return either but able to use my port because I could feel the effects of the medicine and I could taste the saline.
I had to have my port replaced after that. I didn’t go under general anesthesia, I had local anesthesia in an outpatient clinic. I could feel what was going on and I got light sedation but didn’t fall asleep. It wasn’t too bad. Now I have port #2. Fully functioning. The Cather moved out of place and the top was clogged so I could receive medicine but not get blood. Oh well. The part that is just really annoying, is in nm, everyone is weird about people taking care of their own ports. They’re like you can get infection or sepsis. It’s like, that’s only if I don’t do it sterile which I know how to do it sterile. Hello people, medical professionals mess up too but they don’t suffer the consequences. So, this port, I feel protective of and like only I will take care of it and no one else. I’m a hard stick so having a port is easier getting lab draws and anything else a line is used. Sorry for the long reply. I’ve had my challenges too
Yay! You're doing so good you don't need a port anymore?
She literally talked about placement for the new/next one. So no, I think she's getting a new one.
Peter, put that coffee down and FOCUS on ur driving..🚗
Omg I can’t stand when they push super hard :/ it’s actually painful! I also can’t stand when they don’t anchor it when they deaccess you! That’s also extremely painful.
I’m sorry you’re going through this, I hope things get better!
🙏🏼🙏🏼🙏🏼
Yes earthly junk stuff dentists Dr's. Car stuff like inspections mamogranms etc etc
Well, I guess you stopped posting videos! I'm really sad about it!
i,m going to have to have intravenous antibiotics,they told me that i could not have a port,they told me that i have to have a picline.i,m surprised that they are going to let you have another port,i bet they say that you have to have a picline.
I have had 2 ports and I am currently on my 4th Hickman. I literally drew lines with marker where my bra straps are so they would put the line in a comfortable place. That has always helped with placement. Interventional Radiologists do ports and lines all day long. In my opinion they are far more experienced than general surgeons..
Hi Mary and Peter,been awhile since I watched a video of you guys (content lately has been sort of not peeking my interest now a days) but this one caught my interest because I too have been suffering with my port this year more than ever. My port has had its ups and downs like your's working and soon I'm hoping to get into IR to have it replaced but have procrastinated to schedule it all Summer because it's been working ok. Will see next week when my mom accesses it at home if it's time to call IR and get a consultation scheduled before the procedure and also going to tell them to put in an IV and knock me out with anesthesia so I can't feel any pain (make sure the tell your IR team that too Mary). Pray you can get it replaced with success and recover quickly.
Mary I am so glad it’s in and over with . I know how worried you have about it working . 😊❤
I just had to get my port-a-cath removed Thursday because it popped out of this skin! 😮
Yikes
How are you doing now? Hope you are well...
Yes this also happened with my first port, it was used so often that the skin over it become necrotic and one needle change after the port popped out through skin. That was removed and temporary central line used until I had a new port, that was 17yrs ago and this one is still going strong, I have been really lucky with it.
The nurse that was changing the needle at the time (in my home) went pale when the post came out with the needle… and all I was thinking was Oh great this means a hospital stay! Hope you are doing ok @thebooknerd145
they say that piclines are much easier,instead of having a port.
Let's hope with the new one no problems----we should claim it thru Jesus!
So sorry you have to go through this. The waiting is the worst sometimes. Just enjoy your babies and have a great day. It’s all in God’s plans. 💗 ❤️
You never show Ollie anymore. I miss him.
The entire family is going to be missed with they decided to
Quit the FREYLIFE SERIES FOR GOOD AFTER 9 years and today august
24th would have been the start of YEAR 10 for them if they stayed!!🤘🤘😃❤❤👍
I know she videos a month ago I wish we knew more now
💙
Who’s driving? It looks like it’s a driverless car. 😮
No there still in there old car that they have a Toyota..
Mary do you even NEED it at this point? Could you just get it completely removed and not have it re-installed? If you ever need it again, it can be reinstalled at that time. Its just ONE LESS thing to worry about.
That was probably might thought as well now with your trikafta medication working well almost 4 years already and your already
Had your feeding tube taken out and your body is currently stable with
Trikafta medication that I think that port is really not necessary that I
Think is form of rejection from the body it basic rejecting it is what
Symptoms of pain that you're going through right now..
I think it’s personal preference (she doesn’t actually NEED it), but it makes infusions a lot easier. She gets I think 2 a month.
Veins collapsed and don’t work anymore is a issue I have that issue I think Mary has that issue. Even a central line in hand even last time she had that had issues she gets blood work and infusion several times a month it better to have the port it more risky but better
@@TechGirl84 I mean I have one but I also am illegible for Trikafta still, so I still use mine quite a bit, so I get it. But even infusions at this point might be unnecessary. Most of my CF friends on Trikafta were able to stop all of that stuff.
Some of you people are so judgemental lol
GUESS WHAT DAY IS TODAY ITS MARY FREYS BIRTHDAY !!
So everyone should send her birthday greetings today she was born
On AUGUST 18th 1989 turning 34 years old !!!🎂🎂🎂🌋🌋🎉
Tomorrow August 18th is MARY FREYS BIRTHDAY don't forget viewers to send her birthday greetings and wishes!! She will be officially turning 34 years old!!🎂🎂🌋🌋❤
peter change the year not 24 its 23
What has happened to our favorite UA-cam family?