Fort Lauderdale, FL | Minneapolis, MN | Chigago, IL | Boston, MA| California | Cleveland, OH |Read More
Fort Lauderdale, FL | Minneapolis, MN | Chigago, IL | Boston, MA| California | Cleveland, OH |Read More
"One thing I noticed along the way was that the oncologist was doing his job in his swim lane, the dermatologist in his swim lane, the rheumatologist in his swim lane and nobody was really talking to each other. There's those areas of care coordination that to me seemed a bit lacking" Michael Joseph, PMP.
It goes back to January of 2010, the most devastating news was a diagnosis of leukemia in early January of 2010. At the time my wife was six weeks pregnant and I was not rather young at that point. I thought I waited this long to have a kid and now this happens. It was quite devastating to the family, to my existence as a father to be etc.
I can go into a very long story about that whole ordeal from January through August of 2010 but I'll spare your viewers because I don’t want to go into details. Suffice to say, it was pretty bad from a physical and emotional standpoint. Psychologically thinking that I'm not going to be around to raise my unborn child.
It really became obvious with then an onset of sepsis in June of 2010 on Father's Day weekend no less, Where at that point I'm thinking that this is not going to end well. Not an easy path to get through that even that one incident nine days in the I.C.U and many more months of recovery after that, plus another round of chemo. My daughter was born and I was there for delivery a week after chemo ended. During that time I'm thrilled but I've been looking at my newborn daughter, with the relapse equation and I couldn't get it out of my head.
To have to deal with this “what if” I relapse to go through all kinds of crazy types of procedures again, treatment plan etc. and maybe not make it. With the relapse it's harder to make it, so there's a lot of emotions with the diagnosis of leukemia, under these conditions. For that matter, any diagnosis of leukemia cancer is not a good day for anybody, but it happens to many.
The good news is that there's therapy and new ways to treat cancers today, For my condition in 2010 there was not. It was the normal 1980’s cocktail of chemo that---again eventually led to sepsis later on. I was told I wouldn’t survive without a bone marrow transplant. At that point a bone marrow transplant was on the horizon, no questions asked and that's going to be my path to cure.
One thing I noticed along the way was that the oncologist was doing his job in his swim lane, the dermatologist in his swim lane, the rheumatologist in his swim lane, and nobody was really talking to each other. There's those areas of care coordination that to me seemed a bit lacking. What meds to use, how often do you take them, stop them, don't stop them etc., not a lot of clarity there.
That was challenging, although I eventually got to the right answer it wasn't as easy. I didn't know if they were coordinating properly. Then coordinating with the transplant folks up at Hopkins from Georgetown that was another aspect of care coordination. The transplant never happened just for various reasons. Clinically, determination wise there was no perfect match. It was risky, maybe you'll survive, can wait, which I did, so the right decision was made.
One thing that was missing from the experience in my mind, was looking at the impact this has on the whole family. My wife, our unborn daughter and who was looking at that aspect of care from a broader empathetic perspective than just each person----Again just like my swim lane with different diagnoses, the OB-GYN wasn't really looking at how to treat the whole person---or how my wife should deal with the emotional trauma of a husband who has cancer and likewise nobody is doing that. I guess or our system in the U.S is designed to go find that practitioner who would do that.
Get a psychologist if you need it, but nobody really offered to us. It's kind of trying to of course be your own navigator, which for some people is easy for others it’s not. We’re in the middle there, we thought about it but we had so much going on that we figured emotionally, I guess, we could handle it ourselves. It would've been nice to have more navigation in that context of what's going on with the family, aside from was going on with each of us individually, so that was a critical aspect to it.
Fast-forward a couple years I did not relapse and that is the good news, but the bad news is that I had to lose a lot of weight because I thought I would relapse and die, that didn't happen. I figured well if I’m not going to be around much longer I might as well enjoy food. Am I right? That's the opposite of eating healthy, but that’s my mind.
I did all that and didn't relapse and was thrilled. I mean, the two year mark was really the good news. At 2010 being in remission holding my newborn daughter, minutes old was a great moment. Fast forward two years later was a better moment because at that point I’m pretty confident that the chances of relapse are in the single digits. That was a great day probably around August of 2012.
When you get a diagnosis with cancer there's always going to be a risk of the treatment that's just the way it is. Maybe there's less risk for some cancers today with the immunotherapy and different pathways for bone marrow transplants for different patients to qualify and how are they to perform a transplant.
There's a lot of medical science to make that journey better and have a better outcome and a better overall experience with the outcome. There could be a day that people just live with a certain diagnosis of cancer take the drugs and they have a mostly normal life, but they just have a new normal because that's the new normal.
My new normal post that event is different. I come out of it a little bit of a different person, a changed person and maybe more urgency to get things done because life is short. Now, when I feel like there are things, obstacles in my way holding me back,
I get frustrated even more than I used to. You would think you'd be the opposite, i.e I'm happy to be alive, just chill, but that's not the way that I've internalized that experience of since recovery. I feel like things should fall into place faster but that's not the way things go. The past doesn't dictate the future but at least it shapes who you are. Your experiences shape who you are.
If you think in terms of a really simple way to think about this, medical science was pretty safe, pretty specific on post chemo immune suppressant. While there are genomic pathways for patients today, that wasn’t an option for me. However, there was evidence, clear evidence to know after chemo that I was receiving when my blood counts would be low enough to have no immune system.
In that scenario you wouldn’t need a digital health solution to guide that. I had a phone, all you need is text messages or a phone call saying just to be careful. I never really got that and so after the first, second, third or first and second round of chemo I got a false sense of security that despite the fact that I'm immune deficient I guess I should just go by my business.
That's the bad way to behave when you have no immune system. I should have inoculated myself, so I can take part of the responsibility, but I think I should of been reminded to inoculate myself. And,-----it's not business as usual when you have zero immune system, any little thing you can go outside and pick up.
There's no guarantee, you can still get sepsis without that, because you have no immune system, something can get you, but at least take every precaution you can to avoid that outcome and that didn't happen. Sure, I should have read more, should have been more informed and more careful but I think the whole care team should have navigated that better.
I mean I'm not a psychologist, I’m not an M.D. I've been a patient though and I know I know it when I see it. I can just tell you that I know when somebody’s sincere, compassionate, etc. It’s all synonym, sincerity, compassion, mindfulness but it really means going beyond, "If there's anything you need just let me know", I got that a lot.
I think it’s a well-intended statement, but people need to put themselves in your shoes, and just kind of figure out what you might need and just do it instead of asking, "if you need something just let me know". I think to show up with something you think I might need its a gesture that “you're not alone, we're thinking about you and here this might be helpful to you” instead of asking that open ended question.
I can answer,“you know what this would be nice”, and If they don't deliver its really bad because there’s no sincerity about their statement of “if you need something just let me know”. Then if you ask me and you don't do it there's a problem. The sincerity aspect is critical in showing how they feel your pain.
There are moments through my journey especially during sepsis where people just did not understand the severity of what I was going through because it was just hard to explain how bad this is and that with a child two months away, this is going on. It was really hard for people to put themselves in my situation and understand.
I had an empathy void, aside from really close knit, very few people, an empathy void from a lot of folks. I'm hoping that changes. Sometimes people feel that you don't want to be remind of your illness, and talk about something else. It's on your mind. It's the only thing on my mind, if you talk about the weather or traffic, the ball game etc., you might be thinking you're changing the subject but you’re not.
It’s not going away, just address the elephant in the room. Some people just don't want to do that, they think changing the subject is good. I guess it’s a balance, you don't want to be always dwelling on it but it's not going away in my mind or it didn't go away for two/three years and I still have these sort of PTSD moments of that sepsis battle.
I thought in May of 2010 they called off the bone marrow transplant, smooth sailing chemo. The relapse equation is still there but at least you know I'm not dealing with a transplant which is more traumatic to my body and then of course I get sepsis. Don't ever say things can’t get any worse because that might not be true.
All you can do is take one day at a time and don't speculate about the future too much. As a bit of advice for people going through these kinds of journeys just take everyday you get up is another day that you're still here to win the battle.
What I can do overall to contribute to the patient journey, patient’s experience---which is the impetus for empathy.health, part of that was influenced by what's going on here at the conference, Patient Experience Conference. Dr Adrienne Boissy, MD, MA who has been preaching this for quite some time long before empathy.Health came along. Curating content from that site into ours would be great.
In addition to other industry leaders and folks on Twitter that have really contributed to the dialogue as well. There’s Empathy Princess on Twitter, Merriam. There’s so many people on Twitter even today, the whole #pinksocks movement and tweet chats (#HCLDR) about this. It's a great platform for people to voice their opinions, their frustrations and best practices. Maybe, we can grab some of that and put that collectively on Empathy.Help as a resource.
Sharing stories with people are great. I get involved in legal help and through Empathy. Help. I hoping to engage patients like me or patients that maybe just have chronic illness too. So, from severe to chronic to everything in between, I’m just trying to be that advocate for empathy and best patient experience.
I could be found on Twitter @healthdata4All. Empathy.Health is also something that I'm involved in as the executive director. If you go to Empathy.Help you can find my blog post about empathy and health care, some other information about our site and how you can get involved.
Then there is also Prime Dimensions which is my technology focusing on healthcare data, analytics and merging solutions from population healthcare management to patient engagement to have a seamless experience. There are numerous ways to find me online and I hope to engage with folks on Twitter or elsewhere.
I have been living with systemic juvenile idiopathic arthritis SJA since I was eleven. I’m also one of the lucky few that has a positive rheumatoid factor, which means I have rheumatoid arthritis too. I have both auto inflammatory and autoimmune arthritis. I started becoming symptomatic when I was eight with mostly knee pain that was like my initial complaint. My knees hurt, I was a really active kids, climbing trees, running, riding my bike everywhere.Our pediatrician at the time just basically said “This is probably growing pains, take some children's Tylenol and keep an eye on things”. Over the course of the next few years it went from just knee pain to sort of all over joint pain, body aches, fevers, nausea , headaches , fatigue, and excessive bruising. I remember getting hit during a basketball game, like somebody just hit my arm and the next they had this massive bruise, massive swelling. Then finally I started getting rashes that would sort of cover my neck all the way down to my belly.
When I was in sixth grade I was eleven years old, I played the clarinet, I was very cool. I was ready for Christmas time and we had a big rehearsal for the holiday concert. We'd been sitting for a few hours and when we went to stand when we were done I just collapsed at that point. It was really just that for those three years I had been sick and my disease was advancing but we didn't know. My mom was already on the way to school to pick me up. I was admitted directly to the hospital, tested for childhood leukemia and cancers and it just took a while of ruling things out before somebody said “let's start to look at autoimmune disease, auto-inflammatory disease”. I was 11, it was December 21st, days before Christmas and that was when I got the initial SJA diagnosis. A few weeks later I found myself with really intense chest pain. The thing about SJA that's different than a lot of childhood arthritis is that it can cause inflammation in the liver or spleen, and enlargement of lymph nodes which is why they actually were looking at childhood cancer, leukemia, anemia as well as inflammation in the lungs and the heart. Here I am having this chest pain at the age 11 and by the time everything sort of transpired figuring out how do you treat an eleven year old with chest pain we found ourselves in the local ER.
I was in acute congestive heart failure because of such a massive buildup of fluid around my heart. We were airlifted to Boston Children's Hospital and was put in a medically induced coma for about six weeks really to protect other organs from failing as well. That was just a byproduct again of that the three years it took to get a diagnosis of my disease, as it kept advancing unchecked and we had no idea. SJA is a fairly rare diagnosis, so even after getting the diagnosis in the hospital people didn't really know what to do with it.Nobody thought well maybe you should have a chest X. Ray real quick on the kid before we send her home. I found a little bit of sort of stability for the next few years. Then at 14 I had both my hips replaced and at 15 I had surgery. So 14 was freshman year in high school; Both my hips replaced as a freshman in high school which still is a very strange thing to sort of think about that that actually happened to me. I would have had knee surgery on my left knee when I was a sophomore in high school. I had knee surgery on my right knee you know as a junior in high school. During that time it was actually when the first biologic drugs hit the market for rheumatoid arthritis.
I remember my pediatric rheumatologist wanted to prescribe one of those drugs, she was so excited. They first hit the market and they were F.D.A. approved for adults and I think in two years they got pediatric approval for them. We really finally thought we had some hope on the horizon for treatment, but unfortunately because this was sort of I don’t want to say experimental, but, new this is really the first time we had any of these biological agents. Our insurance company at the time wouldn’t pay for them. They said you know if there is not enough data in the pediatric population from a safety standpoint so no to those. I graduate from high school, I was eighteen years old and as soon as the calendar---it was literally just the calendar flipped and I was eighteen we could go ahead and re-submit the approval for those drugs and get started. Finally, around eighteen I had a little bit of sort of treatment stability in my life. We finally had something that was actually targeting the progression of the disease and not just symptom management, which is really what everything else is, whether it's steroids or NSAIDS. All they’re aimed at is managing the symptoms of the disease not its actual progression.
Things are looking up, I go to college and I was still really healthy---well not healthy, but still a really active kid once I got my hands replaced. By the time I was twenty my right hip replacement failed for the first time. So I had surgery, had hip surgery again as a sophomore in college. I think I was twenty and then and from twenty to twenty six was really sort of chaotic both in my own life and my family's life. My mom was at the end of a terminal illness at that point and I was back and forth from school with her, my sister, my own doctors and sort of trying only keep my head above water at that point. My mom died when I was 22 and I came home from school permanently at that point to help take care of my younger sisters. I had quit my job and I didn't have any health insurance. So I was really self-managing my arthritis through those very palliative NSAIDS and steroids just with my primary care physician, because at that point I didn’t really feel like I could make my own health a priority. I really need to be there to take care of my family.
For a few years of me trying to re-enter the workforce and finish school and all that stuff. I finally had health insurance again and went to my doctor and started with new doctors. I was 26 and I found a new rheumatologist, a new orthopedic surgeon. My old surgeon had unfortunately retired. And the first time I met my new surgeon what was said was “I hate to be the one to tell you this but your hip replacements has failed catastrophically. There is absolutely no medical explanation for the fact that you're walking around. We need to get you in the you know OR A.S.A.P.”.I was back in school at the time like, wait a second. I need to finish spring semester and then I want to take a six week summer class that goes from June into July”. I was like “Let me finish that class and then we'll do surgery”. So I had a bilateral revision of my hip replacements when I was 26. I didn't really understand about that surgery before I've done it is you're going to be 100% non weight bearing on both sides to protect both knee joints.
I needed to go to a rehabilitate hospital for several months after surgery. I had to relearn how to walk I don’t think people really think of that being an experience for somebody who has arthritis. I was discharged and me being who I am full steam ahead and back to work, back to school and my six month checkup which would have been in January the bone graft of my right hip had failed again and so I needed to have that right hip operated on for a fourth time. At this point I was overwhelmed. Just very mentally overwhelmed by what was happening and I remember asking my surgeon “What would happen if we didn't do surgery like next week? Can I do like an additional long term damage?” He said “You're really not going to do long term damage, you're going to be an increasing amount of pain. Think about the socket where your hip goes into and this last line that they put the end it had separated and it was on a single screw and it was rocking back and forth. It was just the eroding one side of the joint and it just rocked back and forth”.
I just said you want to just push this out a year like really since I was eleven years old I had no normalcy in my life. I just want to work, go to school, hang out with my friends and go to Red Sox games with my boyfriend. Like I don't--you know what- pause, we’re just going to press pause on all of this. And so that's what we did and I had the surgery the following January 2011. That was my last hip surgery, almost seven years ago, which for a long time I wouldn’t even say that. I was afraid that if I said its seven years I was tempting the universe and I would bring this more pain and suffering upon myself.
It’s taken me a really long time to let go of that and just appreciate that I didn't do anything wrong. This is just the nature of this disease, because even after you have a joint replaced you still have active disease in that joint and it still attacks the replacement in the same way that it attacks bone. I've had some complications too that made that bone graft failed. So that was my last hip surgery which is very exciting. Then it was kind of a period of status quo for about five years and sort of cycling on and off different biologic drugs as we tried them and they failed and in 2016 I was really starting to have a lot of trouble with my left wrist, like gripping things specifically.
I remember trying to hold water glass in my kitchen and I dropped it and it shattered. My boyfriend Ken was running in from the other room he was like “What happened?” I’m like “I don't even like know, I just can't hold things”. Really what it is, I have just such extensive damage in the left joint--out the left wrist joint that there's compression of the nerves. There’s all sorts of just not happy things going on in there. But despite all of this I’ve really liked clung to being active as much as possible. So it wasn't just like grip strength at home. I couldn't put pressure on it, like downward pressure to do yoga which is something I love. I Couldn't even lift weights even -- a 5 pound dumbbell, I couldn’t grip to hold it.
So I went to my surgeon fully expecting him to say you know we just need to replace the joint or we need to fuse it. I told him that I didn’t want to do either of those things because more or less I will lose all range of motion in the joint. His idea I which is a little bit--- I'm going to say unconventional, but basically what he did is, he went in and severed five major nerves in the joint. What that does is it cuts off the pain pathway from the damage in the joint to the brain and it also cuts off some of the nerves that were misfiring. It’s only has about a 70% success rate which is why this is not the first line of defense that they go with. But one of the ways they do identify if you're a good candidate is that they go in and they inject the nerves with that they're going to sever with light-a-cane beforehand and if you get pretty instant release--relief rather you're a good candidate.
We did that, I was a good candidate. I did the surgery, I was back in the gym 10 days later with this big funky wrist brace on. And then four months to the day after that surgery I had my third knee surgery on my left knee. I had injured my knee running, but I also knew that there was a lot of other things going on in the joint. I went in, had arthroscopy surgery. They fixed the meniscus tear which is what I had hurt and they also just went and scraped out everything else. More or less bone in the joint, ready for a new replacement as soon as I say go. Some days I feel like go time is like tomorrow and other days I feel like let's put this off as long as possible.
I see this now as an adult and being really lucky to have nieces, nephews and all sorts of wonderful little’s in my life. Kids are so unbelievably resilient, it's just amazing to me. Kids don’t question certain things that we do as adults. Because I got sick at such a young age I didn't really have a normal that other kids did. So I knew that I was going through other things that other kids weren't but I didn't really question it. There was just here it was, much like well this is what I have to do. I have to take this medication or I can't get out of bed. I have to have this surgery so I can get off crutches and walk again. I was on really high dose steroids. Of course my face swelled up, I was easy target I was an easy target for a lot of teasing, a lot of bullying. I think a lot of times kids bully kids when they're sort of afraid of what's happening and I think a lot of my peers saw a very pretty popular healthy athlete one day and somebody who was very very sick the next day. I think that even at a young age my peers probably in the back of their head appreciated that that could happen to them too.
The mind goes to a great length to protect itself and to sort of protect us as we navigate this world. I have been a patient the same hospital for 23 years now, I also work at that hospital now which is wonderful. But there are times when I am running to meetings and I cut through a different clinical part of the hospital and it might be somewhere that I haven't walked through in ten years. Very recently I was---I need to have an M.R.I. and so I went to radiology and they're like “Anna you know better. You know that M.R.I. has moved over here, you need to go here”. I was like “Oh right”. So I as running and I went down this flight of stairs and the flight of stairs was in the pediatric wing of our hospital and I was overwhelmed by this memory of when you're on crutches as a kid-----They probably do this to adults also, but I wasn't allowed to go home until I could navigate as many flights of stairs as I have to get home. so at my house growing up there is the front entry stairs and I lived in a split ranch, so once you came in there was the stairs to go up to the main living level.
I had to be able to successfully navigate two flights of stairs and this stairwell. I hadn’t thought of that in so long and all of a sudden I’m in this stairwell almost 35 years old and I was shaky and I had to sit down on the ground and sort of collect myself and just acknowledge that trauma of everything that I had gone through associated with that surgery and sort of like find a way to manage and let it go and get to an appointment and on time. But it's such a wide spectrum of how I feel about being sick as a kid. Some of it is like a very neatly packaged up into these sort of boxes, very compartmentalize. And even as somebody who goes to therapy religiously and is not embarrassed at all to say so, there are some boxes that we've just not unpacked and I'm not in any big rush because they’re so big to try to take on.
Then other days certain memories or traumas from being sick as a kid just come back and they hit me so hard and it's just so intense to try to weave those into the narrative of my adult life, because now I have an appreciation of really how intense that I had to go through all of this as a kid. How do you think that as a young adult and even to a certain extent as an adult now I am fueled by a good amount of anger and frustration with some of this and it’s taken me a really long time to get comfortable with acknowledging anger. I am like a very non-confrontational person. Confrontation makes me really, really uncomfortable, I don't like being angry, I don't like having fights, I don't like witnessing other exchanges.
It has taken me a really long time to just accept that it's okay to be angry about a lot of these things that have happened to me. And some days I’ll joke with friends and be like how are you doing and I’m just like “Well I'm just a little fireball of rage”. What I've been able to do I think, to a certain extent is acknowledge that anger and then always try to find an outlet for it. so on good days it's you know where I'm very active, it's going to the gym I'll go to the gym for two hours and it's like I don't want to talk to anybody else. I just want to go there and work through my own stuff and just deal with it that way. On my bad days it's just acknowledging that it's okay.
If you mire in that for a day it's not the end of the world and you’re not a bad person and you're not mentally weak. But as a kid I also had parents--I came for a feelings family. My mother's father was a psychiatrist. Being able to express and articulate emotions colorfully is accepted to my family. So I was given space to be angry, what I was never given space to feel was pity for myself. I was never allowed to feel bad for myself. I was expected to go to school when I was able to go to school, I went to school. When I was doing well enough to play sports or go to gym class that's what I did. I was expected to do chores and participate in my family. My mom would bring in laundry baskets and put them next to me and be like “Okay well you can’t vacuum, you can't set the tale but you can sit here and fold laundry”. My parents really tried to give me as much as much normalcy as they could but also still that space to be angry or upset or frustrated because I'm sure as parents they felt it too.
It’s so hard to give other patients advice, even if we have the same diagnosis right, because a lot of the stuff that I've gone through for me sometimes feels like it pales in comparison to what other people have gone through. Then other times and I'm just going to say this and not feel bad about it, sometimes as the other patients I’m like “Can you just like get it together” and that's not very generous of me and I shouldn't do that because I don't know anything that's going on in their life, that there's just such a like wide spectrum of pain and disease progression. I think the biggest thing is finding an outlet that feels good for you. I strive to be super athletic and super active because that is such a core part of who I was as a kid. That sort of anger and that rage that I talk about, a lot of that stems from being a kid who was on the trajectory to be a state if not nationally ranked runner to being a kid in a hospital bed. So every time that I can fight and claw and take even like a little piece of that back, that sort of what helps me keep it together is feeling like I'm not losing ground and I still have part of that as my identity.
That’s not for everybody, it's not appropriate for everybody. I see so many patients that are passionate about art work or they sing or garden or they cook. I know patients that train animals. I think that you can feel angry, you can feel pissed off about all of this. You can feel sad, you can feel like down in that dark place. Now the sunken place is a very popular thing thanks to Kanye on twitter yesterday. But you have to find something that you want to climb out of the hole for. Whatever that is, you want to have kids, if you want to work, if you don't want to work, if you want to volunteer or whatever it is helping find something that feels like a good place to take all of this and direct it at that. The worst times in my life right now even as an adult and being somewhat well adjusted with all this are periods of inactivity when I can't go to the gym.
I love my hospital but it's not perfect because no system is and I think for patients with chronic illnesses in the biggest places that the health systems fail us is by being so sort of like locked into lab reports and that's live and die by the lab report. Good labs mean you're doing well and bad labs mean you're doing poorly. But there is not necessarily but the holistic approach of what that all means. My disease is pretty stable right now and that’s great. So sometimes my labs look good, but what I feel in response to them feeling good there can be a big gap. So whenever I'm talking to new patients about; how do you get to know your providers, how you advocate for yourself etc. I think it's really important that doctors and providers are able to look at the patient as a whole person.
These fifteen minute encounters that we have with our doctors and then they have no idea of the last four to six months of our life depending on the specialists that happened outside of those fifteen minutes. So I worked really hard to get my doctors and my care team to understand what are my life goals because treatment goals really don't mean much if they aren't supporting life goals. When you've been sick for a long time you're able to normalize a lot of things, you're able to normalize a lot of pain, a lot of suffering. you're able to normalize not being able to do things. And when I really decided that I wanted to get more active, that I wanted to lose some weight and feel healthier and happier as a whole human being, person and somebody in a relationship, where there's intimacy and all these different things that make you a whole person.
I realized that I wasn't doing a good enough job saying “I don’t think this treatment is working anymore and we need to try something new”. And so that's kind of I'm always trying to get you know help patients with is “What are your life goals and what you want to do? Do you want to garden? Do you want to be able to pick up your grandkids and have that not be painful? Do you want to walk around the block with your dog? Like what is your big goal in life right now that your illness is an obstacle to? Okay well your doctors need to understand that anything short of that is a failure on their part, which is kind of a harsh black and white way to say it but I think doctors should be motivated to help their patients live really full happy lives outside of their office”.
We need transparency across every aspect of patient care right now. I know that it's very easy to like point our fingers at bag of pharma and drugs are so expensive and they are and they shouldn't be in many cases. The fact is, health care as a good or a service or a product is the only thing that you buy without knowing the price up front. The lack of transparency by providers whether it's hospital or doctor or whatever physical therapist doesn't matter, the lack of transparency on what you're actually paying for your care is galling and should be illegal.
It would be illegal for almost any other service. The lack of transparency on the insurance side of what informs their decisions. We really don't know and of course we saw and I don't necessarily like to name names, but we saw a major plan recently come out and say we didn't actually review any of the information in the period of peer medical review. We didn't do that, so there's no transparency and how coverage decisions are being formulated and then when you do get to pharma there's not a lot of transparency in how they price their drug. So this lack of transparency just to me is one of the biggest drivers of cost because--these three systems are not talking to one another. These three systems are entities have no incentive to work together. There’s so much tension that at the heart of it all is the patient and patients are suffering, but the lack of transparency at this point I just don't understand how much longer we can let this go on.
I was given a lot of agency in my care as even a very young child. I was always allowed to question things and to question decisions and ultimately if it did necessarily put my life at risk I was allowed to say no to things. I made judgment calls when I was in high school to come off certain drugs because for me a lifestyle standpoint I could not take the side effects anymore. So advocating for myself has always given me a sense of empowerment in my own illness. Really it was six or seven years ago I had sort of reengaged with different foundations and was back doing a lot of fundraising.
Fundraising is great and really necessary, but when I talk about things that fill you, fundraising is definitely not one of those things. And I was approached by an organization to attend their advocacy summit in D.C. and I just remember sitting in this room, like a hotel ballroom for a conference and I was like interim, was just like oh my gosh this is what I was supposed to be doing. I had no idea that I could take my story or what I wanted to do to advocate on behalf of myself and it can be powerful for other people.
I think “patent-centered” is a word that's getting used a little too loosely right now. I think that a lot of organizations set out to be patient centered and what I see is their biggest shortcoming, whether it's payers or drug companies, startups, hospitals, whatever is their design solutions for patients, whatever they might be within the healthcare system etc. They get down this process and they have version one and two and three and then they invite patients to the table to basically weigh in on whether this solution is valuable. It's such a waste of time to everybody and at this point I say no to these opportunities because I'm planting my flag on the fact that I want patients involved from the word go.
If you're calling something patient centered no matter what it is, whether it's on the state side or the federal side, F.D.A. The F.D.A. is always forming new patient groups, whether it's a payer, hospital or pharma company wanting to do some nice, happy feel good P.R. If patients aren't in the room from the jump then you've already failed. The other thing is that as we look to patients and we empower them to be a part of this and drive process and drive change---when I see patients paid I feel like the system just sort of continues to take from us and suck us up, chew us up and spit us back out. It's not really equitable to ask patients to help drive change without compensating them accordingly. So involve patients early and often and pay them and compensate them as the experts that they are.
A lot of people know me as Six Hips on Twitter which is sort of the condensed version of my blog, which is Six Hips and Counting which I can take no credit for. My best friend Jenny who's an English teacher and far more creative than I am came up with that. Hoping to stay at just six hips for a while, but on Instagram I’m Anna_Evangeline. I really put kind of my whole life out there for better or for worse. Always looking to connect with more patients and more projects like this!
I'm Kelsey Crowe and I am the founder of the social venture, Help Each Other Out and I also teach social work. Help Each Other Out is about giving people tools for human connection when it's really difficult to do. Often it's really difficult to do when someone is going through something really difficult that you don't understand. So, if you know someone going through illness, loss, miscarriage, infertility or depression you may not feel that you can fully relate to that experience and back away. Help Each Other Out is about making it easier to lean into somebody's difficult experience and not be afraid to actually find how much joy it gives you to have connection on deeper levels. It actually gives you more energy rather than less. I started this work because I was somebody who shied away from people in a difficult time.
I was often afraid that I would say or do something to make the situation worse. I reached kind of a dead end with that behavior when my friend was diagnosed with breast cancer and I didn't reach out and I could no longer console myself, but that was because I was doing her a favor. I realized it was because I was simply afraid. I had experiences in my own life growing up that was very isolating and filled with a lot of pain and suffering and others didn't reach out to me. I recognized that I was inflicting the same pain of isolation that had been afflicted upon me, I don't think it's because people don't care. I think, in fact, many of us do care. I think we just often don't feel equipped to do something with that care that can support somebody else.
It's funny, when I first did this work, I didn't expect it to infiltrate the medical community at all. I really was looking for your average person that's looking for a yoga class or an empathy class, and really wanting to take it out of the hands of professionals and put these kinds of skills into everyday skills like we have around how to eat at the dinner table. Just basic kind of regular etiquette practice. I started getting more calls from medical providers about doing my empathy bootcamps with them and I recognize that what is so valuable in that community are two things;
The very simple practical tips I give around communication that doesn't dismiss somebody else's experience that honors somebody else's experience, makes them feel respected, but doesn't have to add a whole lot of time to your encounter that many, as you know, medical professionals do not have. So how can we help people feel seen in their condition? By just the way we have presence with them, and not necessarily give them one more hour of our usual to do's business that we do by the computer. I guess this kind of practical approaches has appealed to medical providers.
Also, I talk a lot about how, what we can be, who we are and what we can do. How to help us see that as being so full and complete, and ultimately enough. I think it's in our striving to be perfect, that we wind up layering on a level of stress to connection that makes us resistant. So my goal in the medical community is that doctors feel empowered as human beings to be who they are and to offer their best self, but to not expect to be everybody to all things. Because, when we go that route of trying to please everybody all the time that's when we get to the burnout and fatigue, the resentment and the cynicism. So that is my goal, to help medical professionals really recognize who they are as natural empaths, identify ways to be that full self and to feel like it's a joyous thing.
I think we jeopardize it when we blame patients for their situation, which on the one hand can easily happen because we all have our traits that make us blameworthy. That can bring us into the hospital. I think we also need to see our patients for who they are, which are people with families or people without family, people with failed dreams and with dreams. People who bring a whole host of fears, denial, worry, and to not wall ourselves off from those because they get in the way of doing the medical work and in fact somehow figure out how to work with these aspects of human beings. That is part of the work, I think we'll all be so much better at it.
All Studies, on empathy have shown that people in power have less empathy for people not in power. That people who are more powerless tend to have more empathy for others because they've had to put themselves in the shoes of somebody else to sort of navigate and understand their treatment. Everything about a medical setting from it's unequal power relations, the racial makeup of who the doctors are, the gender makeup, everything about it suggests that there will be a lack of empathy for your very common patient. Even the research studies who's being studied are we studying different populations and genders for different impacts of drugs and on and on and treatment outcomes. So it's, it's inherently bias. And then also who comes into the system because of lack of access to preventive care.
Then the way that those patients are judged, "you've let this tooth decay this far. Why didn't you go for regular checkups? Do you not care about yourself ?". Lack of information that patients have about various medications and their side effects. Not everyone is easily going to turn to Google and look up web med, or have friends that they can talk to or to get referrals for the best practitioner. The networks that people move in and sort of the professionals within their social circle and family circle that they have access to. It's just so different. That really allows you to prepare for your calls and to field your providers. There's so much room for disparity, and it's a tremendous ask of doctors and nurses in there wanting counter to try to overcome that huge societal weight of disparities.
I think for a patient empathy feels like someone understanding your frustration form the minute you get into the door with how cold the reception area is. How uncomfortable the seats are, to how anxious you are about waiting and not understanding why you're there for two, three, or four hours. To getting into the doctor's office and not waiting in your gown for an hour, for shivering. To meeting your doctor and not have them immediately turned to their computer and start typing in notes. To having your doctor ask, how are you feeling about this today? And hearing your experience with what you're going through.
To then asking what do you already believe you know about this condition? And respecting the knowledge, what you believe to be knowledge that you bring to it, and to have open ended questions about any concerns that they have with coming home or with anyone in their community and genuinely wanting to know not just ticking it off of a form.And then the larger system in terms of its practice of sharing medical records and communication between medical providers that they try to facilitate a lot of communication around some basic data so that the patient doesn't have to keep repeating over and over again, some of their basic information, because it's really dehumanizing.
So many vulnerable populations, let's say call them vulnerable at the same time, sometimes act the toughest and it's because they're afraid to be vulnerable. They don't want to be victimized, they don't want to be disrespected. So they may not share all of their stuff, all of their worries. They may not actually and often do not have a lot of trust in their medical team.
I think that doctors need to build rapport with their patient that's based on trust. And Trust always, always begins with an interest in who somebody else is. If you don't have that interest, then you're just another doctor who doesn't care about me. So you, you have your own stereotype as a medical professional to overcome. Even if it's, Oh, I noticed your hair is different today. Anything special going on? Any way to sort of acknowledge or shared humanity.
What inspired me to write the book; There Is No Good Card For This is getting the hands of as many people as possible, some basic tools and practices that help people connect to others. It was rooted in a firm belief that, we so much lack compassion as we lock confidence in how to be compassionate. So the book provides real guidelines for what empathy and compassion can look like and feel like. And also illustrate ways in which what we see as benign comments can actually seem very hurtful to somebody else. So it kind of illuminates what caring connection looks like. It doesn't try to tell somebody to be somebody who they aren't by any means. It just helps round off the rough edges a little and I'm really pleased that It's gotten into a few people's hands for sure and may it get into more.
Impacting Societal change through empathy
What I do is teach and help others teach each other some basic tips for having more effective communication and connection. My hope would be that people have the conversations that they want to have because they've learned these things. They don't want to have dead end conversations, where you don't get all the health data that you need to make your medical decisions. And you don't get all the feelings updates from your spouse or your family member that you need to be a good spouse, good parent, or good sibling. There are ways that we can practice talking to each other that bring out more and make our relationships really worth while. My hope would be that people learn these simple tools, and they have access to them, however is best for them whether it's in a book ,workshop or online.
I would like to see empathy education in every classroom, the way that you see sex education. I'd like to see it in every wellness studio in the way you would see yoga. I'd like to see it as just part of adulting, that we take relational health based classes. That would be my legacy that, that happened. That somebody would just join that course as freely as they would join any other course.
"I remember the day I was told in the doctor's office; obviously they tell you that you're at end stage cystic fibrosis, meaning without any treatment, you probably have a year to live and lung transplant doesn't cure it, but it can extend your life" Brigette Mckern.
My name's Bridget McKern, I'm 36, I'm right now. I'm mostly a professional patient and I do work part time as well in a library. Right now I am just maintaining my health and I hope to travel more. That's my plan. When we look with cystic fibrosis CF, that a genetic disease that affects the lungs and the digestive system. It's a genetic disease and basically the lungs filled up too much mucus. They produce too much mucus so a bacteria and illnesses can live in there.
Usually you get lung illnesses progressively, it's hard to get rid of them. So you do things like nebulizers, like asthma patients would do to break up that mucus, but just over time it takes over your lungs and you also built up cysts in your lungs. Transplants is needed at some point. When I was four years old I came down with pneumonia, I ended up in the hospital and that's when they diagnosed me.
I had symptoms that I was showing, they tested me and found that I had it. I was a pretty healthy child, I wasn't in the hospital again until I was an adult and then it kind of started. My disease progressed, my lungs get worse. When I was 30 I was listed to receive a double lung transplant. I waited two years on the waiting list and then received my transplant and that was three and a half years ago. So now I'm just trying to maintain my health.
I knew I was different from my friends, but again, I didn't grow up with other people who had CF. For me, I was luckily a to be a normal kid. I went to birthday parties, sleepovers and I went to school. I had friends, I don't think I really thought I was too different. I knew I had to do medications and my friends, I don't know, I think it was in a way kind of cool for them. They were like, oh, what's your nebulizer machine? Or what do you do?
Actually that was nice. Nobody picked on me or anything. So it wasn't bad. I think as my disease progressed, it got harder and I kind of wanted that outreach to reach out to other people who lived with my illness to understand it better. I noticed a lot when I graduated college and when I went out to get a job and to work, I didn't really want people to know about my illness. I was worried it would prevent me from getting a job if they knew that I would have to take days off, I would possibly have to be in the hospital at times and I thought it would be a barrier.So when I was a kid, it wasn't something that was very visible unless they saw me take medications or something like that.
As an adult and my disease progressed, I had a chronic cough and people especially working in an office, oh, are you sick, do you have a cold? I would just say, Oh yeah, allergies or you know, I didn't have anything contagious, but I knew it was pretty obvious that I had something wrong. I would miss days of work and things like that. But then sometimes I think it's easier when people can see it in a way that then they understood.
People tend to understand sickness, like when somebody has a visible cold or the flu, you know, and you, Oh, I'm so sorry. Um, and maybe if they can't see it, they think, oh, you know, you cancel these plans, you're flaky or you don't want to come to work. You're not a good worker. It's kind of that hard place of you want people to understand, but you don't because you don't know how it's going to jeopardize what they think of you or what that means to your professional life.
When I was listed for transplant, actually, it was a surprise to me that I needed transplant. You know, living with CFD you kind of know, oh, that could happen. When it did, it just seemed so foreign and I didn't have anybody to talk to who had been through it. I really used Facebook and social media to find other CF patients. Other patients who went through transplant and really seeing other people share their stories.
That's what made me want to share mine because I thought, okay, this person's story made a very big difference to me. If I could do that from one person who maybe was in my position and felt really lost and not sure what they were going to go through coming up and it would be worth it. I was much more open to sharing those experiences because I didn't feel I would have that stigma of thinking.
I don't want people too close for you to know too much. But now I just share it because just the reason that it meant so much to me that other people shared their stories and it makes it so much less scary. Just to have one person say to you, I know how you feel and know what you're going through, that makes a world of difference.
I remember the day I was told in the doctor's office; obviously they tell you that you're at end stage cystic fibrosis, meaning without any treatment, you probably have a year to live and lung transplant doesn't cure it, but it can extend your life. I remember crying because it's just very overwhelming. When you think, oh this means you know, I could possibly die very soon. Growing up, pretty healthy.
I didn't think my life would be to shorten. Then after that, there's about four months of testing and evaluation you have to go through just to see if you qualify. Because, even though you're at end stage, they want you to be as healthy as you can, to go through. Lung transplants are considered the hardest surgery that you can go through physically.
Each transplant center have an average waiting time. For my center it was four months, but because of my size and the fact that there aren't as many organ donors as we need. I ended up waiting 28 months and my disease progressed through that time as I spent more time in the hospital.
It's scary because you don't, you don't know what the outcome's going to be. I didn't know if I would get a transplant before I passed away. I didn't know how long. You know when you have a scheduled surgery you can think, okay, I just have to make it to this point and with that unknown, like I didn't know. Everything came down just day by day.
I just wanted to make it through and get to that point, so it's overwhelming. I actually was diagnosed with, major depressive disorder and anxiety during that time. I went through talk therapy and took antidepressants because it was like you said; it was just mentally tolling to take it day by day, not being able to make long term plans. To not to see an end to it coming.
I also went through it again after transplant and I felt, I'm not sure how common it is coming out of transplant. I felt really guilty. I felt guilty that I have this transplant and there's so many other people that need transplants. I didn't, you know, you can't guarantee anybody else is going to get a transplant or they're going to be successful.
Through social media I knew people who passed away either waiting for transplants or after they received them they didn't recover well. That's a hard thing to take too. Also looking at, you know, I have a donor, a person who had to pass away so I could have this chance. It's a lot of pressure on you, I want to be the best person that I can. I want to do everything I can now for my donor, for their family, for my family, because my family, my poor parents had to go through that with me as well.
I have friends and they actually live in Orlando, their about an hour and a half away and every time I was in the hospital they would come and visit me. My fiancee John, he was there as well. Every trip to the emergency room, he had to either drive you there, or call the ambulance. My parents actually live in Minnesota and they came down and especially during my recovery, I had to have full time care for about three months after my transplant.
My parents came down and did that. A lot of people sacrificed time from work, time from their social lives. I know mentally it was hard for them as well. But yeah, I wouldn't have gotten through without them helping me. Just not only physically because I couldn't breathe, I couldn't cook. When it came down to it, I needed help washing my hair, things like that. Then just mentally having them keep me up for every day and getting through really made a difference.
It's overwhelming to know that somebody I've never met and will never meet, literally saved my life. They made a selfless decision and their family did, before they passed away. I can't imagine during the time of losing a loved one making such a big decision. It's been almost four years, that's more holidays, I've had with my family, days I've had with my friends. I've volunteered and I'm just happy to wake up every day. It's a very overwhelming thing.
I think, I think people need more education, more facts about organ donation. I think there's a lot of false information or stigmas that are around it. People think if you went into a hospital, they want to save your life, if they knew you were at organ donor, which is completely false. They always do everything they possibly can and also that it's something that will come down to your family or your next of kin.
It's important to talk to people around you that want to be an organ donor because in that hard time it could be hard for them to make that decision. If they know your wishes it might be a little easier. It was great during translated really awesome nurses and they worked specifically with transplant patients so they knew the process and they knew how hard it was everyday, you know, just to eat, to get up and walk and all of that.
I actually had a really great nurses and especially because you don't spend a lot of time with your doctor, you spend more time with your nurses. They're there 24/7. I got to know them and their family stories and they got to know my family that would come to visit. I think that reaching out to the staff, to the health care provider, they were there when your family's not there and I just had really great nurses. I was very lucky. But again, their kind of that bridge between you and your doctor as well. So it's important for them to know everything you're going through and to voice when you have pain.
When you have problems with medications and things like that. Be your own advocate and be outspoken and don't be afraid that anybody's going to judge you or you know. I think I went through that, especially as the kid, I wanted to be the perfect patient, I wanted to come in and you know, I didn't want to complain and that. But, it gets you in more trouble when you don't because then you have problems that you're not taking care of. Don't be afraid to voice anything.
Very busy, very scheduled. A lot of the treatments that we do. The nebulizers, there's also a thing called a vest machine and it's literally you put on the vest, it hooks up to a machine and it shakes. It does percussions on your chest to also help break up that mucus and those treatments are done two to three times a day and it can take up to an hour each treatment so that along with pills two to three times a day. It's a very laboring process to take care of yourself. Also, frequent doctor appointments.
There are designated cystic fibrosis centers at certain hospitals and I've been seen at those, I've been seeing just at hospitals and I will say it's very different. The cystic fibrosis centers, they know about treatments, they know how the disease progresses and generally in a hospital it's not something that's seen commonly. It can be hard to be properly treated. The way you would treat infections would be different than with an average person. Sometimes there's a lot of confusion there. It is a very extensive disease, unfortunately. Medications and treatments.
The machine I was talking about, the vest machine, most families can't afford it. It's thousands of dollars and so things like the Cystic Fibrosis Foundation or you can find other areas that can help you. Sometimes people donate the machines when they don't need them anymore because they are such a high cost. Medications are expensive, my parents both had to work full time when I was growing up so I could have health insurance.
When I aged out of their insurance, I had to focus on getting a good job, getting something that I could support myself and get the insurance to pay for those medications. That's hard too because a lot of times when you get to adulthood, your disease is so progressive. It's hard to work full time, but you know, you have to choose what you're going to do. So I worked probably longer than I should have, they told me.
I needed that insurance, I needed that help. So I'm not sure what the answer is, but, somehow bringing down the cost of drugs would help, also, the amount of time before a drug can become generic. A lot of the drugs we take when they first come out, obviously they're patented and they're expensive. I think maybe shortening that amount of time and allowing other companies to produce, explaining things. It's kind of a monopoly with very few drug companies that produce the drugs needed.
I would like to tell my story more in person, maybe a volunteering. There are a lifelink Florida's organization that procured my donor lungs, so maybe working with them or somebody, just to share my story to raise more awareness about organ donation and what that can do. I've been keeping myself healthy and building up that stamina so I can do a little more physically. That's why social media's easier for me a lot of times.
I still have a lot of treatments, a lot of doctor's appointments and things. It's easier for me to get messages out that way. I think it's up to every patient because I know there was a time that I wasn't necessarily ready for everyone to know all those details and it can be very hard. I think if you feel you're ready and you can do it in small steps, even just talking to people in your life, your friends or people you work with and then kind of building up from there.
I wouldn't tell people yes or no. I think it beats a person's journey. But just for me it was very therapeutic, it helped me kind of process everything that was going on. Again, I moved down here from Minnesota with family and friends in other states. It was easy for me to update them on what was going on rather than having to call all of these people. I would just say if you want to do it, don't be afraid to take those first steps.
Even if they're little, take it day by day and know that you're strong and you're going to make it through and don't be so hard on yourself. Don't think you have to do everything yourself. Be okay to ask for help and reach out to people, because it can be isolating as well. Also, you don't want to feel like a burden on somebody else, but you're not. There's people around you for a reason and they want to help you out and take care of you.