Infusion Frustrations + Port Study at Interventional Radiology 🏥
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- Опубліковано 3 жов 2024
- [Vlog 7.18.22] - Getting IVIG at an infusion center & an update on Mary's port problems.
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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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The way your son takes notice of the camera and looks at it, it's really adorable. He
sure is a clever little boy.
Had Omnicron recently diagnosed by doctor. Took the medicine for it, and tested negative in 7 days. One week later I got a cough and allergy symptoms. Went back to doctor and tested positive again. Had been quarantined the entire time. Doctor was not surprised, and said she is seeing reinfection frequently. I'm back on meds again. You might consider testing again. ❤️
The anti viral drug has been known to have rebound.
It would have been kind if you both wore masks when out, you could be reinfected, it happens alot. And, Peter doesn't sound very well.
I work for an insurance company if your going to a provider who is out of network you could be responsible for out of pocket costs, I would have definitely called and asked the provider. I hope you got that covered.
Dealing with insurance companies is a real pain. Especially when you get the bill and then later find out that charges was not covered.
So glad you’re done with the port study. I know I hate having that kind of stuff hanging out in the future. The anticipation is almost worse than the test. I just want to get it over. That Elijah is just so cute in his cowboy pjs! He’s such a cuddly baby! He caught a glimpse of the camera out of the corner of his eye and turned around immediately. It’s like he knows there’s a whole world ‘inside’ the camera. 😆 Love to all!❤️
Elijah’s cheeks!! They’re so kissable and cute! Look forward to your vlogs each time. ❤️
Managing chronic illness is such a pain! It is a full time job managing appointments, infusions, labs, insurance. Not one person knows what the other is doing. Transferred over and over. I want private practices back.
Mary, its amazing how you take these insurance mix ups in stride. I got stressed out just listening to your experiences with it. Its like being in a medical no man's land.
Yessssss! Exactly! Me too! I have such a hard time dealing with insurance companies!!
Hope you got your insurance stuff figured out soon. As an european it's always very confusing to me how this works in the us and a lot of work. Love you
Happy you had the port check and look well.
Keep reminding yourself that you have made it to the other side thousands of times and even though it is beyond frustrating, you’ll always have comfort knowing who is beside you through all this. Blessings to you all. ❤️
Mary, as I often say some days it’s tough to be me. CF like MS can wear us down lower than most people couldn’t dream of. Thank goodness you’re still smiling.
Lupus is Autoimmune I Can Relate wear us Down like no other, like most Don't understand what we Handle each Day, Being Grateful For the little Things 🥲
Insurance issues can be a real pain sometimes! Especially if you need these services to improve your health. I hope you get everything worked out!
I don't know how you cope with being on the wrong end of administration! I am going to pray and really hope that things are already clearer! God bless you all
Hi guys! I’m so glad the port study went well xxxx
I can tell Peter is feeling off a little with his cough
this is so difficult. I know for my elderly friends, it is almost impossible for them to keep up with things. I know my insurance phone reps are all over the world.
I had my port placed with general anesthesia but when it was removed, it was done under light sedation in interventional radiology. I had to have it removed because of infection but it was not the cause of the infection. I think that I preferred being under general anesthesia. It went okay with the removal under light sedation. It stressed me out a little. I don’t know if that helps you or not.
Had my port placed under light sedation. Doctor said I was not cooperative. No kidding!!!
Had port taken out under local anesthesia in Doctor’s office. Never ever again. Most horrible experience. General is way to go!!!
I’m glad your port decided to work again Mary it’s so frustrating when they won’t work. I recently had a port study done as well in IR. I had a fibrin sheath and cathflo seems to have gotten it working ok again every once in a while its finicky tho unlike my first one 🤷🏻♀️
I hope you’re all doing well 😊
My Husband has the same "allergy type" of cough which he developed AFTER we both had Covid back in January...😒 Takin his allergy meds everyday helps calm it ( before Covid he only needed seasonal allergy meds)
I hope u'all were able to get the Insurance all sorted. God Bless
I have had covid 3 times. I have after effects like a chronic cough, high heart rate, and breathing issues (even on inhalers). So I totally understand the cough after covid.
Do you still use your feeding tube? Once I was capable of eating oral again I stopped using mine and had it removed. It was such a pain dealing with insurance. Thankful for my surgeon who saved my digestive system and made it possible for me to eat orally again
I am the exact same boat right now!!!! I hate it.
In the Asheville area my home care company stopped doing any infusions period. They said they didn't have staff anymore to offer that service.
That's the biggest problem, it's lack of staff. So, as with everything. Medical care has had to adjust and change. Many places work with a very small, overworked, overwhelmed staff.
I'm to the point with my port that i need a new one....ir gets it to work....the nurses at the cancer center can't ....it's frustrating
Homecare nursing has changed a lot since Covid hit. I had an abscess in 2016 requiring daily bandage changes. I was living in PA at the time and a nurse came every day to do the bandage changes. Got the abscess again in Dec 2021 which required 5 surgeries and being hospitalized for 6 weeks which included Physical therapy. Once released I required daily bandage changes this time I am back in MD staying with my Mom. Mind you I could not do the changes due to not being able to see the area and it needing special packing. Homecare informed us that they only come a few times a week and that we needed to find someone to do the other days. My 92 yr old mother could not do them. We ended up finding a nurse to pay out of pocket on the days homecare didn't come. They ended up only coming 1 day a week and half the time they would forget about me. They kept telling us that they were waiting for approval from my insurance but I got letters from my insurance stating they approved but their approval was not needed. It was horrible to say the least..
The company who was supplies my IV and TPN supplies “changed the direction of the company” I was given notice from them when they sent everything else and was like “well this will be your last delivery” 🤦🏼♀️🤦🏼♀️
Please talk to the billing department at your provider office about the NO Suprises Act. It is Federal law that went into effect 1/1/22. This law limits cost responsibility for the patient and prohibits surprise medical bills for individuals covered under group or individual health plans when they receive NON emergency services from an out of network provider at an IN network facility. This law also requires them to give you a good faith estimate of expected charges prior to receiving non emergency, scheduled services.
This law covers a lot of other areas too, but I mention it to you now so you can ask pertinent questions and know your rights. Good kuck! Fyi. If the actual charges are more than 350.00 than the estimate you can contestant and you have the possibility of not having to pay for ANY of the charges. We now have more rights as medical consumers. Try to research this!
I’m getting a port next week and I’m having so much trouble getting home health set up
Take NAC supplement for cough it really helps your lungs. I have IPF and could not believe how much it helped me.
Made a staffing issue. Could be there short on infusion nurses that are comfortable with the protocol.
Just had mine done today and they don’t even give you anything in IR! They only do very light conscious sedation. It was traumatizing and I never want to do that ever again. I just don’t understand.. they said it’s because they can have patients out the door in less than an hour. I’m shocked that they’re treating people like an assembly line! Sorry but if you have to be there for a port you most likely have health issues that you don’t typically can just be in and out like “normal” people. I’m seriously so glad that I don’t have hear, smell, or see what’s all going on usually! I’m 12 hrs out. Icing my chest like crazy because it’s my first one and I don’t like this clogged feeling or major pressure. They said it will go away but my veins and arteries are really small so I it feels like someone had their thumb on a blood vessel in my neck right now but the clogged feeling is all over my chest. Also I felt every time they ran the wire down into my heart and then I would get really hard palpitations. They don’t even use an anesthesiologist which is a HUGE one for me to have there. So they decided it was better to give me less medicine so I was awake so I didn’t have any anesthesia issues. I’m in pure shock this just all happened. They’re like we do ports, central lines, Hickman lines, all kinds of stuff this way. I get some people can’t even have anesthesia and my heart is with them as that’s an experience I don’t ever want to have again! I hope you can review this with someone new about going through IR or maybe this is the new way because I went to a HUGE hospital and this was my only option. They’re moving on to this new method and I don’t care for it at ALL!
Insurance can be awful ! So glad everything went well.
I try very hard to learn from you Mary how to remain as calm as possible and keep a good attitude about whatever it is that is going on in life. You just take situations as they come and I so admire your positive attitude and you always look on the brighter side. I totally get myself so upset and become so negative with insurance or any medical setbacks I may go through. Thank you for sharing your experiences both good and not so good. You are helping so many!!!! Of course, love seeing Elijah’s precious face always 💙 love to all
💙💗💙💙💙
My husband had an annoying lingering cough long after out of COVID
Hello from Scotland I live about an hour away from Edinburgh…. Scottish people pride themselves on great hospitality, glad yous felt welcomed when yous were over here when Peter was in university x
Mary, I’m sorry you’re having so much difficulty with your home care company. I can commiserate with you. I had a medical equipment company accuse me of stealing portable oxygen tanks. They refused to bring me any until my doctor called them. Earlier this year, The same company messed up three orders for nebulizer supplies. I finally got the supplies after two months.
hey i had the rona alkso around 4th of july so glad ive been over it for a month now
Peter you sound worse today than when you had covid. Get some rest!
Long Covid is real. Peter looks sick.
I am 11 1/2 and I have certistic lung disease and I got Covid in the beginning of the year and sense I ah e been going down hill I also have a feeding tube so I know when you can’t get something it’s hard
Good news about the port. ♥️
Many that have a run of covid due have an allergy sounding type of cough on and off after they are once again testing negative. Many often compare it to a cough like one gets with a sinus infection and/or post nasal drip. It actually can be a hint that you're actually dealing with "long covid" which is more of less a collection respiratory and metabolism symptoms that take turns coming and going alternately giving you a few days of not feeling well, or being tired, or coughing. Many think this is actually the result of body fighting off a flare up of the residual virus still in your system or a reaction to another exposure while still having a strong immune response sit up by having just recovered from covid or a late effect from the vaccination sending up a response to the antibodies your body manufactured to the the last remains of the active virus.
Just because your in home services are not in network, does not always mean that the infusion center, which could actually be a separate company that is in network or the infusion center is in network while the insurance company does not see the home health side as in network - but that should be the insurance company saying that not the center or home health saying that. There is absolutely no real reason that, insist you access yourself you even need the infusion to be given by a nurse or a center and that may actually be your problem. We had a great deal of issues all over from him health and so on after a run of port infections cause by things I was able as an RN able to document both with in home and infusion center procedures. Once we changed up all her orders to where all her port care and access was done by me we have gone many years with an infection but after the first 6 months of me doing the care and the service just providing supplies when something was needed that a nurse would do such as an infusion we hit more and more problems with who and what was covered and started hearing about in and out of network problems. Our PCP basically was able to determine that insurance was not willing to pay the amounts the services wanted to charge that they could when they were accessing the port - and petty much what they were paid, beside the medication cost did not even cover the time it took someone to drive out to our house. At that point, our physicians just started writing the orders to have the medication and supplies provided through the pharmacy service and wrote the order to be delivered by me. All the cost issues disappeared. Except for whole blood or platelets, all other products can either be delivered by the in home pharmacy service, our regular local pharmacy or now and then picked up from the hospital without any insurance coverage problems.
One reason we finally settled on the health service we have is that while they are almost every where in the US but the office that cares for you is very local which means the only time we change offices to talk to someone is if we relocate.
As for a port that tends to be positional or draws back sometimes and does not again 15 minutes later and the port study shows no problems and no sheath is seen - couple of tips. Things like dye studies usually go in pretty fast and under pressure and if you have a part of a fibrin sheath building up, just that may well be enough to move it out of the way so its not seen and maybe its loose enough that a push of hyperin of saline will knock it aside long enough to get blood back and then it can settle back and block if a follow up pull back is done. If I know for sure that I an in the as I have been able touch the wall this the needle but do not get a blood pull back this can either be because I am too close to the wall, or the sheath or part of a sheath is blocking the end of the tube. If confidence is high that I have the needle where it should be I will slowly inject a few cc's info the port to test for any pain that says I am not where I should be and if there is 0 discomfort, not even a bit of discomfort, I will pull back and then try a push of 5cc's of saline which should bump the fibryn out of the way to get some blood return. If that works then a 100cc flush of saline or a 5 cc flush of hyperin followed by 10 cc of saline should keep it clear for a few hours especially if there is an infusion running. After that, even just after an infusion stops, a partial shealth can settle back petty quick, and often after disconnecting the IV tubing, if you need to draw blood again or check to a patient access, it could take a push of 5-10cc under pressure to get things working right again. If you have a port acting up like this it often better to use a power port needle instead of something like a safety step or mini lck as they will not allow flush under the pressure you may even need to do manually to move a sheath that is either partly or fully formed. Often just being able to us a power port huber needle will save you that issue of having to instill cath-flo to clear out a port line,, but using cath-flo with a power port needle gets much better results that using a mini-lok or safety step or other low pressure nedele. I know that some places have moved away from instilling heparin under pressure per a hep-lock when a post is not going to be used for a few hours or more or when de-accessing, and have started recommending just saline flush and saline lock. 90% of the time that new standard does work well unless you have a port that that has on again off again blood pull backs for whatever reason - and it maybe simple because your someone that builds up fibrin sheaths that do not totally block but flutter around like curtains, sometime blocking opens and sometimes not. Those, because they are small and not attached all around can be impossible to see with dye, and won't even be a diagnosis of why your post is having issues until the tubing is pulled to get a port replaced, and either the radiologist will see a piece or two for fibrin hanging on when he pulls out the tube or when its sent to the lab for its normal post removal study they will see where there are intermittent places where fibrin was attached.
post covid bronchitis is serious. plz go to urgent care and get an x-ray Peter.
on the whole port goes. I have had both surgery do it and IR. I was so nervous about being awake. I have a connective tissue disease and so the Numbing takes a ton of it. But IR was so much easier. I didnt have to recover from the anesthesia and got to talk to them more about placement and such. My third port has been the best one so far. No issues with it and such. So if you can handle the IR one I highly recommend it.
Firstly, can't you just deal with the CF clinic nurse ? And do your infusions there ? Even if it's annoying ?
Second, I also have a port. I don't have CF.
But I've had two issues where I've needed infusions to break up mini clots and one time they went up through my groin to physically pluck it out.
Can't you ask your CF team for a full sedation, and just get it replaced anyway ? As it's hit or miss? I would never except it to be done in radiology due to severe anxiety, PTSD, and severe claustraphobia.
I usually need a few valium for a M.r..i
Or something that close to my face
So glad the port study is done! Seems like they were willing and able to listen to what you were telling them during it, too.
A month ago I had a study dry port, they say that everything is fine! but i still have pain.
I had a lingering cough for months! After I had covid both times
Glad Your port seems to be working so far
My niece age 8 has ChILDs( childhood interstitial lung disease) she is on 24hr o2, bipap, and g tube. She has beat COVID 4 times and hospitalized over 50 times in her life for almost dieing multiple times. She also gets ivig in Boston children's
I had supplies but no nurse for a long time. It was horrible. It still is. I'm still trucking along. Keep moving forward. Now, with nursing and pharmacy shortages, I have called so many people for help and I didn't get anywhere. I miss when it was easier to do. Anyway, hopefully everything will go better for us all!
there is such a disconnect in the medical field. sure would be easier if it was simpler. (hugs)
Sometimes insurance will say the provider is in network and it turns out they aren't. And sometimes they actually are in network but the provider doesn't want to accept patients from that insurance. Usually it's because they do not get paid well for the services patients received. And some services will ONLY be covered in a clinic or hospital setting. I know this from working with inurance. I think you should speak to the providers billing department and go from there. Or is it possible to do a 3 way call with your insurance and provider?
And if you have a doubt, you should ALWAYS call to confirm if your services are covered. Depending on your insurance, you could be financially responsible for it.
Stanford also only does it at IR, but they do deep sedation with me, where Anesnteiologist comes but doesn’t put me fully under, but I am out. Ask about that. It was a game changer.
I hear you about the insurance and all the technical issues. I'm cronicly I'll I have medi cal I went to see a plumonoligist and the doctor charged me a thousand dollars. I'm so skeptical about seeing all these specialist now. Even though I'm concerned about my health. Thanks for sharing your medical day Mary and thanks for listening to mine. Hugs and kisses little one God bless.
Hey guys. I know you’re getting a lot of advice but what we learned was the Inflammatory response comes after about day 10. And it settled behind the sinuses by the brain but causes that stuffy nose sound that Peter has, even though your nose is clear. It also causes the cough due to inflammation. Our doc gave us a Medrol pack of prednisolone, and NAC and it was a miracle combo. Back to total normal. No cough. No long covid. No taste or smell loss. Highly recommend.
I'm 48 on my third port. If you are a life long port wearer and I would insist on a vascular surgeon. Interventional radiology is done where you got the port study and so the surgery. It's sterile but not operating room quality and you will get lidocaine, versed and fentanoly.
home care companies are so confusing!! if you're with coram then most branches closed or really downgraded! my branch closed last month so now I'm with paragon and they're okay lol
Do you have an advocacy company as a go between health insurance company and that company saying no?
Girl,sorry your port is still not being nice.🙁 Please,please use your words with your CF team that you wish to see a surgeon and not mess around with radiology if you want a new port placed and want to be knocked out with general anesthesia and not with subconscious sedation. They will listen and if they don't,you can threaten to sue them.😁👍
Love sweet little baby feet, is there anything cuter? I like getting ice cream after a medical day. Sending hugs and prayers.
Do you have Coram? They recently started minimizing branches and each one only has a couple nurses.
And my IVIG is 100k less at home than a center. I do it 5 consecutive days then 2 week break then 5 more days, and repeat, lol
My roommate has been same way. I got bronchitis during but she got a cough weeks after.
I’m a year out from surviving Covid. I still have that stinking cough.
I have also had numerous problems with insurance coverage this year and another of phone calls.
💟
Boy the baby seems so good. I hardly ever even hear him cry . He's just precious.
And - I am so thankful for our home care company - they really are great! It's like finding a needle in a haystack though!
I am in the same mess. CVS / Coram closed local branch and my infusion is coming hopefully this week from somewhere but have no numbers so a little panicky.
Covid Cough, should get an XRAY! lung effusions?
Happy Birthday week in real time Mary 😀.
Love Elijah's horse onesie at 13:02
Keep[ up the great videos
Are you working with option care? I recognize the issues. Same here
Players 🙏 for you= medical fo workout
Hi Mary in September I need to get an iron infusion done
Hi Mary and Peter can you please be praying for my new baby neice she's in the NICU and she was born 8/13/2022 shes 3pds,7ozs and beautiful. Love Rachel
Since you are doing so well, in the future if your port no longer works, would you have to have the port replaced right away or could you wait until the need came up?
we all have a virus with a dry cough and digestive symptoms and we tested negative for covid. could be something else? 🤔
Me having CF n my hubby got covid N HE NOW HAS A COUGH ALL THE TIME NOW...WHAT DO YOU GET IV INFUSION FOR?
I HAVE MS TOO N I GO N GET IV INFUSION EVERY 6 MONTHS ..AT A HOSPITAL ..
Love hate insurance and love hate home care companies. I’m only with my home care company because of my nurse as well. Now that I need PT and OT, I have to go with this company (otherwise I would have to be discharged from the nurse). I wanted a different one that’s currently working with my mom.
I’m going to go with it was bought out my CVS- they drive me nutsssss
IVIG is so expensive! I would be scared to go for an infusion without verifying the insurance and center are squared away first.
You aren't kidding about insurance.
I got employer insurance on August 1st. It is an HMO. Oh, the phone calls. It took the company 2 weeks to get the card and the information to arrive which was a week after the start date.
I had good and bad customer service advisors. I was told I could keep my PCP and Endo specialist since they signed a deal as of Jan 1st. Found out yesterday, that my plan isn't included in the deal, and they just assigned a clinic and PCP that isn't remotely close to my home or work. I had one person tell me they don't cover a service when their website clearly shows they do. They also have several different provider lists and you can't figure out which one to use without calling them. So I think I've finally got it figured out. I hope. Now I have to start figuring out new providers and get appointments made. It will be interestiing.
Not sure what strain I got, but got covid mid June. Thankfully really mild but I def coughed more after testing negative than with a positive test.
Best wishes to you and your family
So, I had the same issue with my insurance and home nursing. It turns out that the issue was that the medication was covered by my pharmacy benefits and home nursing was covered by my medical benefits. However, my medical benefits only covers one home health company and my pharmacy benefits only covers an entirely different home health company. It took me 3 months of literal daily calling to figure it all out.
I know it's all overwhelming right now, but it will work out for you. Just put it in God's hands and He's got your back. .❤️💖🙏🙏
I take care of someone in a PVS in his home. He has to have his suprapubic cath changed every 2 weeks. As part of that, he has to have a medication mixed and inserted through the cath. Home health does this. We have gone through so many home health companies with so many problems. They don't understand that it has to be an RN, not an LPN because of the mixing of meds.
We have a great nurse now but if he is out, no one shows. It's rediculous.
I've been wondering how you are doing on the Vyepti. I hope you are getting as good of results as I am. I'll tell you, Vyepti has saved my life. Also, when I had my port placed it was in Interventional Radiology, they numbed the area and I felt nothing. There was some tugging, but nothing hurt and the recovery was super fast.
Do you still tube feed
I am so happy to see you doing pretty well lattly.I hope Peter feels better soon. But I love seeing you and your family along with the transition from b4 trifexis and Ivig and after.I am glad you are able to enjoy being parents not have to worry about the hospital all the time like in past(not that you don't have alot to still deal with I know you have Alot to still do to mange your post trifexis baseline! As i know as someone chronically I'll I know their is still alot to maintaine though but I am glad to see your family you and Peter be so happy
This sounds like the same issue I've had since Coram completely closed. Trying to find a new home care company that can send me port supplies, meds, and fluids, and is accepting new patients, and works with my insurance feels impossible
Happy Birthday Mary
Peter does sound riddled with a cold.
Long Covid, or reinfection...
Yeah I was just praying for you guys the other day and there was word of an insurance issue it wasn’t specifically what you talked about but it was like something about insurance and maybe you guys want to pray about maybe what insurance company you want to be with in the future
Love to you 💛🕯🕊
How is baby
🌞💖💖💞💖💖🌝
thats what happened with my covid, i have asthma and i didnt get a cough until after i was done with covid...
Be careful as far as insurance stuff goes because I have a heart doctor and they said he was covered and he wasn't and then they tried to Bill me so please please be careful
Me too Peter for almost two weeks a cough and mucus I had covid a few days after July 4