Good afternoon, everyone. I see we have a few people getting logged on. We'll be getting started here in just a couple minutes. In the meantime, if you're getting logged on and you are having any trouble at all, please reach out to us at info@covalon.com, and we have a team monitoring that inbox. They'll be able to help you with any technical difficulties you might be experiencing. In the meantime, just sit tight, and we'll get started here in just a couple minutes. If you're logged on and everything looks ready to go, you should see a chat icon at the top right-hand side of your screen. If you click on that, you'll bring up the group chat, which we plan to use throughout today's presentation. Try it out, just make sure it's working.
Maybe drop a note in, let us know who you are, where you're joining from. It's always fun to see the distribution of attendees from across the country and across the world sometimes. Okay, so I'll be right back to kick us off. Okay, we have 1:00 P.M. on the clock, everyone. Welcome and good afternoon. I want to thank everyone for taking the time to join our webinar today. We have a great session for you today with two very special guests, who I'll get to introducing here in just a moment. First, a couple housekeeping things. If you're getting logged on, there is a chat button at the top right-hand side. Be sure to pull up that chat, and we're going to try to use that throughout the webinar to interact and ask questions.
If you're having any issue at all, getting logged on or hearing from someone else who is, please reach out to us at info, I-N-F-O, @Covalon, C-O-V-A-L-O-N, .com. The team can help you through any technical difficulties. Okay, so here we go. We have two guests with us here today, and they're going to be sharing with us their perspectives and experiences on vascular access, device maintenance and care, and device selection. Our special guests today are Jessica and Chalice, and it is really my pleasure to introduce them to you today. We had the pleasure of meeting Jessica and Chalice this spring at a conference and are so grateful that they have agreed to join us today to share their experiences and perspectives on life with a central vascular access device. A little bit about them before we dive in.
Originally from Arkansas, Jessica resides in Cleveland, Ohio, close by the Cleveland Clinic, where she works closely with her care team. In her spare time, Jessica is a digital artist. She also enjoys cosplay and attends anime conferences regularly with friends. She is also a lover of nature and has professional training as a firefighter and in emergency medical services. Chalice Richard is originally from Colorado and now resides with her partner in New Jersey. Chalice is a science geek, and her love for material sciences has come in handy as she navigates selection of various medical devices. Chalice loves going to concerts and travels to various concert venues. She is a lover of nature as well, and recently spent time exploring Canada's west coast. Chalice also has a medical background, with training as an EMT and medical assistant. Today's webinar isn't for one particular group of people.
It is for anyone involved with placement or care and maintenance of central venous access devices, or concerned about those relying on central venous access devices. This webinar is for the entire care team. That can be patients themselves, parents, partners, caregivers, supporters, healthcare professionals, and manufacturers and medical supply companies as well, like the team here at Covalon. At Covalon, patient feedback is an essential part of our process, and we hope that everyone, regardless of which group you fit into, will take away important and useful information from today's session. Let's just quickly review the focus areas and really the goals for today's session. The number one goal is to share and learn from patient experiences and perspectives. We want to highlight the importance of patient-centered device selection, and give an overview of some special considerations for long-term IV access.
You'll hear from Jessica and Chalice about how important it is to find the right device for you, your loved one, or your patient, and also about speaking up, even when it's tough. They'll go over some best practices for engaging with your care team or involving patients in clinical decision-making if you're on the medical profession side. Most importantly, we want everyone to learn, share, discuss, and interact, an open discussion. So we really encourage you to use that chat function. For those of you just getting logged on, the chat should be available on the top right-hand side of your screen. There is an icon there. If you click that chat button, it should pull up a chat there where you can write in, and everyone who's online today will be able to see that and interact.
We'll also make use of a polling function, and that polling function, we'll just test it out here on the next slide, but it will be quick and easy. As soon as I start the poll, a banner will come up and prompt you to answer the question, and that'll help us get a feel for who's online and who's here contributing. So that brings us to our first poll, a quick and easy one to get us started. And this is just, again, to give us an idea of who's online. And the question: what best describes your role? So, you know, if you fit into one of these options describes you, that's great, select that. If not, select other and write into the chat to let us know what motivated you to join today.
So I'm gonna hit start here, and you'll have 20 seconds to answer our poll. We have healthcare professionals on the line, patients, caregivers and supporters, several industry professionals as well. A couple more seconds, get your answers in. Awesome! Okay, so the distribution is: we've got 29% patients, we have a parent, 2% of the answers accounted for as parents, 12% caregivers and supporters, 57% healthcare professionals, which is awesome to see, and 17% industry professionals. So it really is a little bit of everybody on the care team, which is fantastic. It's exactly what we're going for and hoping for. So I think, you know, there should be useful information for all groups in this, in this presentation, and we hope that everyone comes away with information that they can take back to their practice, whatever it is.
So you have to humor me with one more poll, and we felt this would be an important one to survey because we often hear about long-term central vascular access devices or central venous access. But it's unclear what timeframe is really considered long term by definition. So I'll run this quick poll really quickly, and then we'll discuss that briefly and move on. So another poll starting now. And again, we'll have 20 seconds to answer, so try to get your answers in pretty quick. 10 seconds left. Honestly, about an equal distribution between all responses right now. So it ended up as almost an equal distribution between A, B, and C, which is really interesting, and I think kinda highlights the point we're trying to make here.
If we talk to the experts and look into the literature and, you know, come up with a number, if we must come up with a number, the answer is probably somewhere between A and B, weeks to months. And this may be true if we look at all central lines placed, but for certain groups, this simply doesn't apply. For individuals like Jessica and Chalice, C is the answer, and much of what will be discussed today will be in that context. It isn't a short chapter or just, you know, a couple of days or weeks or even months. It's a major part of their life long term and something that they incorporate into their routines on a day-to-day basis.
So now, without any further delay, I'm going to turn it over to our guests, and they're going to take you through a little bit about their medical journeys. So we'll start with you, Chalice.
Hi. This is the condensed story as to what brought me to need a central line, and I just wanna say that this is simply that story, and I have a life outside this, as do all those with medical issues. Our lives are affected differently and to varying degrees by these issues, but to really just put it simply, we're patients, but we're also people. Now, in the beginning of 2019, my preexisting GI issues worsened significantly, and that year, I also had a lung surgery as my overall health declined. This time always sticks in my mind, as that lung surgery really made it clear just how severe my health issues were and how every part of me was being affected. By summer of that year, 2019, my weight loss was severe enough to require hospitalization.
The hospital decided I was too underweight to safely perform surgery to place a GJ tube, and it took two months in the hospital on TPN. But eventually, they placed the tube with the expectation that I'd be able to get all my hydration and nutrition through that tube. And remember, TPN is getting all your nutrition through a central line. So I was essentially put on TPN as a way to get me to a feeding tube to get hydration and nutrition. But unfortunately, I couldn't tolerate the volume to support both my hydration and nutrition through that GJ tube. So a tunneled central line was placed to manage my hydration status at home, as I'd be relying on daily fluids run through that central line. And this hospital discharge marked the beginning of my life with a central line.
But then by December 2019, my feeding intolerance had worsened, and I was put back on TPN. This time, however, TPN was to be long term. Again, previously, I had it in the hospital simply as a means to an end. So being put on TPN long term was night and day to what I had in the hospital, and it was really the true start of my life on TPN. Which means just as my life with a central line started in August, by December of that same year, I was starting life on TPN. And in the following year, 2020, I had an open abdominal surgery to place a J tube. That tube I used to administer my medications, and my G tube has to drain 24/7 to manage my nausea and prevent vomiting.
Since that first central line was placed in 2019, I've unfortunately gone through a number of them, and my lines have required removal and then subsequent replacement for a variety of different issues. I will just end this with that. I discovered IV Clear dressings in the summer of 2020, and that eliminated at least the skin issues I was struggling with. Yeah, that's just the brief way I got my line.
Thank you, Chalice. We'll go to you now, Jessica.
Hi, my name's Jessica. Thank you, Kathryn, for the introduction. I am a former firefighter and worked in the emergency medical services. I was really healthy all the way up until about 2020. I became severely malnourished after a bowel obstruction I had, and then I started having small bowel obstructions, like, every other month. It was really, really hard. Then I was referred to the Cleveland Clinic from my primary care doctor down in Arkansas and had a lot of testing done up in Cleveland, to try to see what was going on, 'cause no one at home could figure out what was going on. So then I wound up receiving my first central line in September of 2020. It was a port mainly for treatment of POTS initially.
I wasn't on TPN yet because they placed an NJ tube Corpak to try to get feedings that way. Unfortunately, that failed, and I had to start TPN in October 2020. I've had a few bouts of sepsis with my ports, unfortunately, and I've had them replaced four different times for multiple reasons up to May 2021. I've had kinks, and I've had blood clots, unfortunately. But anyways, after seeing the gastroenterologist at Cleveland Clinic, I was diagnosed with chronic intestinal pseudo-obstruction. I was referred to the transplant team, and they gave me an option between going forth with a multivisceral transplant or getting a procedure called the trifecta procedure. So I chose the trifecta procedure to attempt getting off TPN, and I had that done March 2021.
And that involved getting my large intestine removed, creating an ileostomy, and had a pyloroplasty done on my stomach. And yeah, I was doing really good after May of 2021. I was off TPN, and then this year, in May, I had to be put back on TPN because my disease is progressing a lot quicker than we thought it would be. I had a horrible allergic reaction to my Hickman that lasted between May and July. And it says I'm awaiting patch testing. I actually just got the results back from that and found out I was allergic to a few things that are in medical supplies and stuff, so forth like that. One of those is rosin, which is found in many medical adhesives and certain IV dressings even.
Then a big one was, Diphenyl Guanidine, which is a rubber accelerator, which can also be used in some silicone products. So I'm currently awaiting to get my Hickman replaced. And also, I'm currently awaiting G-tube placement to help with venting of my stomach and a spinal cord stimulator to help with my chronic pain.
Thank you both for sharing your personal medical journeys, giving everyone logged on today the background understanding of where your unique perspectives and experiences that you've kindly, so kindly agreed to share with us today are coming from. So before we get into to more detailed discussion with our guests, we just wanted to take a moment and highlight why patient-centered care and product selection is so important. First, it accounts for medical history. So, you know, Jessica's referenced allergies with certain devices, and, you know, having, you know, taking these types of things into consideration when selecting a device has the potential to avoid adverse reactions and improve outcomes overall. It promotes independence and autonomy, and this is something that you will hear, I think, as a theme throughout the discussion today, it...
which is critically important for patients who will be caring for the line at home by themselves, or, you know, maybe not by themselves, but in a large way, very independently. It also takes lifestyle and preferences into consideration, which can help improve quality of life. Lastly, we know that shared decision-making in medicine is an approach that leads to patients being more informed and involved in their healthcare decisions. Now, moving on, we have a series of questions that we're going to raise and hear from our speakers on, and we wanted to start with this one kind of at the beginning. It's not the beginning of their medical journey, but the beginning of their journey with a central line, and that typically for folks who are getting a central line, it starts at placement.
So the first question is: What was it like to have your first PICC or central line placed, and then to go home with it? And the second part to that is: Did you feel prepared with the information you needed to care for it and prevent complications, keep it safe? So let's start with you, Chalice.
So two firsts actually come to mind with this question, as there's the first time I went home with a central line and the first time I went home on TPN. These firsts were experienced by different home infusion companies, and I was being discharged from two completely different hospitals, yet neither time did I feel anywhere close to ready. The education was minimal at best, and the education I did receive turned out to be far from best practices. I was discharged without anything more than just a clinical assessment to determine if I was ready to go home. While that makes perfect sense from a hospital's point of view, I did end up experiencing a number of physical and mental health consequences as a result of being so unprepared to deal with everything.
I just really want to remind everyone that it can take time to physically and mentally adjust to your new normal. For me, I would say it took at least a year until I felt I had a handle on everything, which I know can sound like a long time, especially as many people... when you're talking a year-plus as a central line, that kind of blows some people's minds. But I really would like to see more education and training provided to those going home on TPN or just with a central line.
But until that, like, dream, I guess, is realized, I think it's really important to remember that every little bit of education and awareness makes a difference, like, from patients to medical supply companies, doctors, infusion companies, and beyond, can really make an impact by listening to patients, extending compassion, and providing education wherever possible. And I'll just end this off with, like, a little story about my first time going home on TPN, and I went home on TPN just before Christmas. I believe it was the day before Christmas, and I don't really believe anything is really going to happen until I see it. Same with everyone in the hospital, they tell you a discharge date, and it's never quite right.
But I was indeed discharged in time before Christmas, and I was over the moon about it until I got home, and my TPN delivery was there, and they did not send the correct prescription when I left the hospital. And at this time, and to this day, I get all my nutrition and also hydration from my TPN. So these bags were severely short of fluids, to the point where it was going to be a medical emergency in a matter of possibly as little as a day. And I was supposed to now try to get an emergency appointment with a brand-new doctor who I'd never met before, who's gonna be apparently doing my TPN, and all of a sudden realizing that Christmas might not actually be at home. But... and that was obviously incredibly difficult, being the first experience home with TPN.
But also, that doctor did make a difference because he found a way, in this Christmas time, to get me in for that emergency appointment, fix the TPN prescription, and keep me out of the hospital. So that's kind of my little story about that.
Thanks, Chalice. We'll go over to you, Jessica.
So, like I mentioned earlier, I got my first central line back in 2020. It was mainly at first, before I was on TPN, it was for hydration purposes due to my POTS, postural orthostatic tachycardia syndrome. So I got the surgery done. It was a quick outpatient surgery, but they did not educate me on how to access the port, all of that good stuff that goes along with it. Thankfully, my mom is a nurse practitioner and former nurse, so she worked in critical care and has experience with ports. And I also talked to one of my friends who has cystic fibrosis, who has a port for their infusions. So, with that and a lot of research, we figured out how to safely do it, and so forth.
It was really hard to get an infusion company, too, because of insurance problems, so that wasn't set up immediately afterwards. So it was pretty hectic, to go home with a central line and not know how to manage it very well. But we got through it, and thankfully it got better, and I've learned from my new care team at my hospital I'm at right now, and doing really good with all of that. So yeah, it was pretty hard.
Thank you both. So just a quick comment. I'm going to try hard here to keep us on time. But a quick comment before we go, we continue on, and try to transition a little bit more into the care and maintenance aspects, because, you know, insertion is a big thing, a big deal. But after insertion happens, people go home, and that's when kind of a lot of learning begins. And you're really working to adapt your routines. And during that care and maintenance, we always acknowledge that there's a bit of a balancing act happening. You want to do your very best to make sure that the clinical performance and function of these devices is adequate and working as well as possible.
While also, you know, they're providing the defense against complications and infections that is needed to keep patients safe and to maintain that access. But this is a bit of a balancing act at times with patient comfort and quality of life, and I think this is something that does shine through in some of the next parts of this presentation. So very briefly, before we move on to the next question we have for Jessica and Chalice, together with the help of Jessica and Chalice, we drafted this quick kind of best practices list of preparing for placement of a CVAD and to... and then to go home with a central vascular access device. So the first thing they both highlighted when we got to brainstorming this list was the importance of a personalized approach that promotes independence.
This was extremely important, and I would say almost, I think, the first thing that came to mind for both of you. The placement location, you both mentioned, I think we'll get into some material on that. Line type, material, number of lumens. You've already heard Jessica mention some of the allergies. Dressing change, supplies, and procedure, which become a really important part of the routines moving forward. What to watch for, and when to seek medical attention. This is really monitoring for those complications at home. And one thing you guys brought up, that I think is maybe not obvious to some individuals, that it's a service that's available, but many hospitals have a department of social work, and that team can help a whole lot to evaluate home life and a support plan.
Work out a support plan for folks who are transitioning from a hospital environment into the home environment with a new central vascular access device. Another important thing you mentioned was to review medical terminology and equipment supplies. It's almost, for many, like a new language. You're learning about all these different devices, different terminology, and making sure you're comfortable with those, with your care team before you move home and maybe transition with, to a care team in the home environment, can help with communication, I think, moving forward. Another important thing, logistically, you both pointed out, was thinking about how you will get delivery of supplies and organize those supplies in your home environment.
And then one that might not be so clinical in nature, but was, I think, but critical for both of you, was that you should always plan something to look forward to, and I thought this was a fantastic addition to this list. You know, I think it connects back to the first point on this list as well. Independence can be different for different people. That personalized approach is so critical to make sure that you have the freedom and the independence you need to make sure you're able to plan those things to look forward to and continue on with achieving life goals in addition to your medical goals. Okay. Oh, I'm sorry. I'm jumping ahead. I just wanted to pass it back to Jessica and Chalice to see if they have any additional comments with that.
I went through pretty quickly, and I know they have a wealth of information and expertise to offer on this topic. So we'll go with you, Jessica, first. If you can just... any additional comments you wanted to add?
Yes. So a good thing to remember is that you need to be patient with yourself and the people around you. It's a whole new learning experience for everyone, and most importantly, when starting up and establishing a new routine, it can be pretty hectic. It is a big change, and time will help you become more comfortable with it all. Some other good things to be prepared for is also having your infusion backpack, or you having that stocked and organized, because you never know when an emergency could happen or your line could break. I know I like to keep a line repair kit on me at all times. I also have information on who to contact if these things happen, or if, say, my infusion bag has got messed up or broken in delivery...
Also another good thing to remember is emergency preparedness. Say, if there's, like, a natural disaster or there's a big snowstorm, which we get frequently up here in the winter, from the lake, I like to have an extra IV pump charged and ready to go in case the power goes out, until I can get to a safe place where I can charge that has electricity. So preparing for emergencies like that and making sure you have ice packs in the freezer for those fluids or TPN that you need to have refrigerated. So I always have a stack of ice packs in my freezer ready to go. Another little thing that's really good to have prepared is, a hospital go bag.
So if you have a complication arise, you don't have time to get, like, your phone charger or other stuff like that. You have that ready to go, and you can just grab that bag and get out the door and get to where you need to go to get that fixed. But that's just some little comments I'd like to add onto this.
Awesome. Thank you. Chalice, anything from you?
Yeah. Like you said, the point at the end is not very clinical. I just wanna really emphasize that it truly got me through some very difficult times, and to this day, I always make sure I have something planned to look forward to. And I just wanna say that everyone's life with a central line is a little different, and it's similar in many ways, yes, but it's important to figure out what your own personal priorities are. And I recommend speaking to your doctor or your home infusion company, your care team, whatever is applicable, about your priorities and how to balance them, your clinical needs.
Like, just as an example, if you're stable for a few days, you can see if a plan can be set up in regards to your central line breaking, where you can stay entirely outpatient with, like, an emergency scheduled appointment rather than sitting in the hospital waiting for that same spot to open up. Essentially, just try to get your care as centered around your life as possible. While your clinical needs will dictate whether certain adjustments are even possible, I really want to emphasize that it doesn't hurt to ask. The worst thing anybody can say is no. And just a couple of things I can think of, and some apply just to those on TPN, but again, remember, it's all about making it work for your life, so just think about what you would want.
That's things like adjusting how long your infusion runs for, seeing if you can use shelf-stable bags, whether for travel or every day, to simplify things. Doing things like doing your care yourself, like your dressing changes and stuff, whether you'd rather do that by yourself or with a home nurse, and so many other things. You can ask direct questions about these things, or you can say something along the lines of, "It's really important I'm disconnected during the workday. How can we make that work?" So it can be direct, "This is what I want," or, "How can we get to this goal?" Finally, I'll say that over time, you may pick up on your own or from others little tips, tricks, and products that might make your life easier.
I, for one, have made a DIY IV pole that works much better than what I was given. Just little things like that, you can learn a lot from other people to make your life easier.
Okay, so we're gonna move into our next little series of questions for Jessica and Chalice. This one is transitioning away from insertion and thinking about the long term, the care and maintenance aspect and life day-to-day with your line. And specifically, we wanted to ask: Have you faced complications related to your PICC or central line, and what has been the hardest to deal with or find a solution for? And we can start with you, Chalice.
Okay, so I've had a lot of complications, but the one that was definitely the hardest, it came from a home nurse, and one lumen in my line wasn't flushing, and it hadn't been successfully flushed in almost a month at that point. And you're never supposed to forcefully try and flush a line, as if there's a clot in that line and you try to force it through rather than trying to break it up with antithrombotics, which are blood thinners, you're pushing that clot to the bloodstream, and it could go anywhere, do anything, which can be very dangerous. And this was at a time that I didn't have a lot of confidence with standing up to nurses if they were doing something wrong.
So when she went down the path of very forcefully trying to get this thing to flush, I didn't say much or stop her in any way, and eventually, she succeeded, which was immediately followed by this horrendous chest pain. I felt like I couldn't breathe. It was, like, this really eerie sense that something was wrong. I wholeheartedly thought I was going to die. It's like a sense of impending doom, and it was genuinely one of the scariest moments of my life to this day. I thought I should go to the ER, but the nurse brushed me off, so I just convinced myself that I was being dramatic and overreacting. I didn't end up going to the ER until a week later, and mind you, I was still experiencing chest pain and shortness of breath that whole week.
When I went to the ER, they did a CT scan that showed that I had a pulmonary effusion, which is an accumulation of fluid surrounding the lungs. This isn't always caused by pulmonary embolisms, but it frequently can be. The thing was, there was no emboli or clot seen, and I was told by a doctor that clots, especially ones that are relatively small, are not gonna show up on a CT scan if you take them a week after the fact. I said I picked this complication because it's the one that was by far the hardest to deal with and find a solution for, because I ended up blaming myself a lot. "Why didn't I say something, stop her? I knew that you weren't supposed to do that." I didn't push back about going to the ER.
I waited a week, which meant it's impossible to conclusively prove what happened and deal with it. It was, "How do I get a home infusion company where I can do my own nursing care?" That took a very long time and a lot of finagling with insurance and all kinds of stuff. Really, like, the biggest thing is, remember that you can say sorry to a nurse for being rude, but that nurse can't take back things like flushing a blood clot into your veins or give you an infection because they didn't swab with alcohol. Just, it's very difficult, and I, again, struggle with this to this day, but you just really have to remember that you can say sorry for being rude, but again, you can't take back what they've done, so.
Thanks for sharing, Chalice. We're gonna go to you, Jessica.
So I've had a little list of complications with my port. My ports, I frequently had blood clots that would happen. I've also had infections that led to sepsis about 3 times. It was really scary. I've also had kinks from my port. I have Ehlers-Danlos syndrome, so that would cause my... Where it was placed, it would cause it to kink based off of how my joints and my tissue would move around. I'd say the hardest one I have dealt with in finding a solution for is recently, here in May, I just got my Hickman, and I had a very horrible allergic reaction. You'll see pictures for that coming up. It was not fun at all. We still think I'm allergic to the line, based off of the skin patch testing results.
I'd say it was really hard to get like, find a solution for what, why I was having this allergic reaction, as getting into dermatology and getting that patch testing done is a long time to wait where I'm at. So I had to wait a good... Let's see, I just got my patch testing done, and I had my allergic reaction back in June, so it's been a few months. So that was definitely really hard to find a solution and get solid answers for. So I've been dealing with that for a while.
Okay. Thank you both. We're gonna move on to talking a little bit about the skin and some of the complications that can arise with different materials that are in contact with it. You know, it can be catheters, it can be dressings, different antimicrobial agents. But Jessica and Chalice have both had their fair share of, you know, issues with maintaining skin integrity, and they've actually documented a lot of this in images and have kindly offered to display and share their story of finding a solution that works for their skin. So Jessica, we'll start with you, and I think this is timely, considering that you've just received the results of your dermatology patch testing.
Yes. So initially, we thought it may have been a chlorhexidine allergy, which I'm sure a lot of you have heard. It's pretty common, but it was not. So what you see here, I would get a lot of blisters around my site, blisters that would pop and just ooze, and it was really hard for me to keep a dressing on. So I had to go to tape and gauze, as you can see in the upper right-hand corner, and that's... I'd have to change that, my dressing, at least 4-5 times a day. I've had to be admitted for it, to get antihistamines and steroids to try to tone it down, and we still just could not figure out what the allergy was. We removed the chlorhexidine from the picture.
We changed from Tegaderm to IV3000, and I still was having problems. Eventually, it started to clear up a little bit better when I switched to IV Clear. It just happened to work out really well for me, so I was really excited to try that at the Oley Conference this year, where I got a free sample and tried it, so that gave me some nice relief. But not all dressings can work out. Some, they're all made of different types of materials and stuff like that. But like I mentioned earlier, I got my patch testing results, and we are good, and we figured out what we need to do from here.
But, all the way to the left is what it first started looking like, and then it progressed all the way to that bottom right picture. Definitely not fun.
We were very excited at the Oley Conference that Jessica was able to see us one day, try out a sample of IV Clear, and report back, towards the end of the conference that it had indeed worked for her and without any irritation, because-
... Looking at these images, it is very clear, how much you had, how much you had been through, up to that point to find something. And I'm glad now that you have the results of your dermatology testing, and that will hopefully help kind of get to the bottom of the line material as well. So I will pass it now over to Chalice, who also has experience with IV Clear, though a little bit longer term.
I actually had a relatively difficult time finding photos of my skin issues, as I discovered IV Clear relatively quickly, and thus, I was still very much in the haze of starting all of this, which meant I didn't take much photos of all the issues I was having. But when I kept having issues with dressings, I realized that almost all dressings on the market use acrylic adhesive, and I tried all kinds of acrylic adhesives until I eventually realized that there was never going to be an acrylic adhesive dressing that worked, as it was the problem. And dressing changes were incredibly painful, as every time my dressing was changed, it would tear open new spots and reopen existing ones, 'cause my skin was just too fragile to handle that adhesive.
It actually got to the point where it started to scar, so my skin was always, like, shiny, and you could see it from far away, which always bothered me. On top of that, I had incredibly severe itching, rashes, hives, and even skin ulcers, which much of that was due to Chlorhexidine. I started a search for a central line dressing that used silicone-based adhesives, and I discovered IV Clear. Of course, I was nervous, 'cause of, as I just mentioned, I have a problem with CHG. The CHG in IV Clear is a different type of CHG than what's in most dressings or other products. So obviously, you always patch test away from your line and speak to your doctors, but I wouldn't write off IV Clear just because of CHG issues. Honestly, this dressing, I can say, changed my life.
My skin is healthy and happy now. The antimicrobial features give me that extra layer of safety. That's always good with a central line. And now, I know a lot of people are unaware of what adhesive any given dressing uses, and many people are not specifically looking for a silicone-based dressing. I'm just kind of one of those fanatics about materials and stuff. A lot of people come to IV Clear simply 'cause it's a good dressing, and when people try IV Clear, they often just swap IV Clear in for their old dressing, without the awareness that they're not just switching dressings, but they're switching adhesive types. And it can be good to start somewhat new with a silicone-based adhesive, as what helps adhesion with acrylic dressing may prevent adhesion with a silicone-based one.
Like, I, for one, made it function better with a silicone skin protectant. But I know this might sound complex, and it might sound like you don't want to start new, especially when you're already experiencing plenty of skin issues. But I just want to say, my old dressing changes quite literally involved 10-plus minutes carefully taking off the old dressing, desperately trying to minimize how much my skin would tear, as it wasn't a question of if it would tear, but how much. And then sitting there, trying to, like, get the nerve up to now wipe the area with alcohol to cleanse it, which, as I'm sure anyone can imagine, cleansing open, torn skin with alcohol is incredibly painful. And now, when I go to take off my old dressing, I just peel it off. A few seconds, done. No pain, no tearing.
Just easy, simple, great. So seek out education when you're gonna go in and try something new, and it was a change, but for me, it was such an incredible change.
Thank you, guys, both for sharing. I mean, it is wonderful to hear that you both have solutions that are making the skin issues easier to deal with. I know, Jessica, your allergies extend past just dressing materials, but having, you know, your skin healed, it makes us happy to hear that. And we appreciate very much your willingness to tell your stories about that journey to finding a solution that worked for you. So a quick, just to wrap up that kind of section, with Jessica and Chalice, we put together a quick list. Just, you're at home, you're dealing with skin breakdown at a line site.
Here are a couple of things that we've come up with as best practices, and I'm sure there's a lot that can be added to this list, so don't hesitate to share in the chat, 'cause there's probably a lot of people on today with experience in this area. Act quickly to notify the care team, of course. Document with images to monitor symptoms. It will be easier to relay that to your care team and also to track progression or spreading of a rash. Monitor for signs of infection. Consult product information for use and package inserts. And this goes back to what Chalice was saying about, you know, taking... making sure that when you do switch a product or you- or for any product you're using, to know what the materials are, 'cause that might actually-...
It may differ, however, may require you to make changes about how you use that product or other products that you use with it, for example, barrier products, if it's a dressing, say. Try to change, work with your care team to change only one variable at a time, so you can get a feel for what exactly might be causing it and narrowing it down. And then understand that, you know, maybe what you're using or struggling with isn't necessarily the only option. There are other options out there, and try to speak up and advocate for yourself or your loved one, to try to—for new options to be explored. Anything to add to this, guys?
I think one thing you'd mentioned, I think when we were reviewing, was dermatology consult, if available, and Jessica, I know, has a ton of experience with this. But, you know, if it is skin-related issue and is progressing, dermatology consult can really help. I think Jessica has now finally, after a long period, gotten to the bottom of many of her skin issues with that patch test that was ordered by a dermatologist. Okay, so that brings us to our last question, for Jessica and Chalice. And I know we're kind of getting towards the end here, but this is an important one, so we want to make sure we get it in. And then also we'd like to save a little bit of time for some question and answer at the end.
So, the last one here is: What are three things you would ask healthcare professionals to remember when treating patients with long-term central venous access devices? Let's start with you, Jessica.
So the first thing I would say is including your patient in the process of choosing a line, where it's going to be placed, how many lumens they'll need. Comfortability can affect a lot for your quality of life, so making sure the line is placed in a position that is going to work, but is also not uncomfortable. Like, say, for us women, we have problems with lines. I've had a line placed right underneath where my bra strap rests. I know Chalice has had this happen, too, and it was very uncomfortable and not great at all to deal with. It also caused my dressing to peel up a lot or would try to dislodge my port needle at the time. Even though they're in there really good, it would push against it. It was just not a good time.
So definitely include your patient in on the process of that or give options that are viable for that patient, depending on their circumstances, if possible. Also, not everything is a one-size-fits-all when it comes to products. As you can see, not everyone can use Tegaderm, not everyone can use IV Clear, not everyone can use IV3000. Allow your patients to safely try new products with your guidance if the current ones are not satisfactory to them or are causing issues. And then finally, one that's really important to me is try to have an understanding about your patient's life goals and not just focusing on their medical goals.
Say, like if I want to go back to college, if there's a way to work a line or infusion regimen that can allow me to go do things and move around freely in public versus having to haul around a TPN bag and have to deal with that, it can give that much more needed freedom in going out and doing the things you love still, without having to have the burden of carrying around your TPN or dealing or the risk of infection if you have to do something with your line out in public when you're switching infusions or taking it off. So those are three little things, I think is good to remember.
Great points. And Chalice?
But it won't be prevented from happening again because the endless cycle of you can't quite prove that, and the "No, I won't do it" without good reason. So obviously, patients are not providers, but keep in mind, we have experiences and a certain knowledge base that providers don't... and patients can sometimes feel and know something is off before they may show clinically, is another thing I wanna say. Which I know that personally, as I had a PICC line that was placed, and it hurt every single day. I knew something was wrong, and I kept pressuring on it, and I wasn't listened to until two months later, it swelled, the insertion site literally swelled up like a baseball size, and then I was listened.
That's a little ramble here, but I just wanna say that, like, patients really need to be listened to, and you can work with us about things, and we will obviously take your expertise and act as your doctor. I'm like, sorry, I'm like losing my train of thought here, but-
That's okay. No, it's, it's good.
But... That's how many things.
It's so important, I think, to reinforce that patients are as an essential part of the care team themselves, and like you say, have a sense sometimes before things show clinically that, you know, something is not quite right. Which kind of brings us to our next summary slide. So keep holding your thoughts 'cause I'll summarize quickly, and then I'll come back to you. But again, with Jessica and Chalice's help, we just came up with a few best practices for engaging and collaborating with the clinical care team and advocating for yourself, something that can be intimidating at times. But for a number of reasons, and you know, as many of the examples given today have illustrated very clearly, it's really important.
You know, and here are a couple of things that I think Jessica and Chalice thought were important to end off with. Remember that providing healthcare workers with more information about yourself and your symptoms helps them to provide the best care. So, you know, even if it might seem insignificant or it's just a feeling or, you know, not necessarily something you can prove, it's important to bring it up. You know, it can't be listened to if it's not brought up. Prepare questions and topics you'd like to discuss beforehand to make the most of appointment times. It can be really stressful times, really rushed through different providers during a series of appointments. And it's easy to forget in the moment about things that came up previously.
That was another thing you guys pointed out is really critical to preparing for appointments. Ask questions about products and approaches to fully understand your options. Again, coming back to device selection and patient-centered device selection, you know, we've illustrated a few different ways, and especially with those images of your skin, why it's important to know that there are different options out there for you, and the impact that can have on quality of life. And sometimes, you know, to get that ball rolling, it's just a question: Is there something else? And is there something I could try? And then lastly, if something doesn't feel right, this might be repetitive, I think Chalice has really, really done a good job at making this point, but if something doesn't feel right, always say so.
So that, that kind of brings us to the end of our, question and answer part of the presentation. But if you guys have anything else you wanna comment on about, you know, the last slide or anything else, you feel free now. And I also want to open it up to the participants in today's webinar. If you have questions for Jessica and Chalice, please feel free to write into the chat now. And with the last few minutes here, I think we have, oh, gosh, just a couple minutes. We'll try to get one or two in. If there are more questions than we can answer, please still don't hesitate to write them in because we will find a way to get those answered.
We'll have them in the chat, and, you know, maybe we can hold another question and answer session with Jessica and Chalice, or we can always get back to you via email. All right. Okay, here's a great one from Rebecca to Jessica and Chalice: How did you build your confidence to stand up for yourself?
Honestly, it was time and just kinda a lot of work and having somebody supportive around me. This might seem kinda silly, but, like, I also had, like, self-image issues, and that took, you know, getting off social media, like, just so many different things. It's kind of a similar thing with building up confidence to say something. You can't just take it as one approach. You kind of have to come at it in all different ways. Trying to reinforce self that, like, if you're, let's say, feeling a certain symptom, that that symptom is real. 'Cause if you can start believing in yourself and feeling that what you're saying is actually happening, and that you're not just making it up or something, all of that builds towards it.
Yes, no, that was a really good question. Building confidence, I'm not gonna lie, there are some hard days, but it's really good to always remember, like: "Hey, this is my body. I know how my body works." So constantly reminding myself that and knowing that, "Hey, this isn't right. I'm not comfortable with this." I told myself, "I don't deserve to be uncomfortable, so I will speak up for myself." I also just, I come from a background where I'm pretty outspoken if I don't really agree with something. So I will always talk on that. But always reminding myself, and you need to remind yourself this, that you are worth it, and you are valid. How you feel and what you're going through is absolutely valid, and don't let anyone tell you otherwise.
Awesome. Thank you guys both for sharing so much today. You know, I know these webinars, they go by in a flash, and there are so many important topics that we can cover. So I'm looking forward to continuing to work with you guys, and I know we can dive more into detail on devices in subsequent sessions. But for now, that really brings us to the end of today's session. And just before we close out formally, you know, I wanna thank everyone who logged on today, taking time to join us, and for engaging with such great feedback and questions. I wish we had time to get to each and every one of them, but we will... We have them in the chat, and we'll find a way to follow up with you. We promise that.
You are always welcome to reach out to Covalon, again, at info@covalon.com. We would love to hear from you, and we'll pass on questions and comments to Jessica and Chalice as well. Please, keep an eye out for our emails, because we'll definitely be continuing our quarterly webinar series, and we welcome any and all feedback as we plan future sessions. Also, a huge thank you to both of you, Jessica and Chalice, for so generously sharing parts of your story, and to the Oley Foundation, who connected us with them. For those of you who are not familiar with the Oley Foundation, it is a fantastic organization, really a community and an advocacy group for people on nutrition therapy. There's more info here on the screen, if you're looking to reach out to them or learn more. That is it for today.
Unless you guys have any last comments, I think we will sign off there.
Can I just quickly say that I wanna say thank you again for coming to listen to us, and that I always hope people see patients like me and Jessica as whole people. I know I hope to go back to school and finish a degree, and I'm always trying to put as much life into my life as I can. And I wanna say to everybody that's adjusting to these kind of things, like, it's a different life than I had before, but I'm finding ways to adapt, like, the dreams, the work, and hobbies to suit the new life. And I'm trying to use the unique perspective and experience I've gained to help others with platforms that I've been given, like through Covalon, which I've really appreciated. So thank you again, and I really—the opportunity to work on this has been nothing short of incredible.
Exactly what Chalice said. Thank you so, so much for including us on this project. It's been absolutely wonderful, and I really hope you guys got something to take away from this. Thank you for attending the webinar and here listening to us. It's been an honor, and it's been a lot of fun to do this.
I will just say on behalf of the team at Covalon, the privilege has been ours. It has been a pleasure to get to know you both and to work with you. And, you know, I think I feel that everyone will walk away with really important information that they can use or help others with, and that is the goal of today's webinar. So thank you both very much for that. Okay, everyone, we're over time. I wanna thank everyone for their participation today. You'll be hearing from us, also with a link to the recording of the webinar and more information on sessions which are coming in subsequent quarters. Thank you, thank you again. Bye-bye!