The hole in my heart

A new malady has joined the ranks of things that I will be managing in our house. I found myself in the ER on Friday night with some mild symptoms - lightheaded, short of breath, fluttery heart. After two days and a bunch of tests it was determined that I had a mini-stroke caused by a hole that was discovered in my heart. This type of congenital heart defect, called a PFO, isn't uncommon. Everyone is born with this hole, but most close shortly after birth. For the 25% of people whose don't, most don't have any problem. I, however, am lucky enough to also have an arrhythmia, which creates a somewhat significant stroke risk. After 3 days in the hospital, I was sent home on a bunch of new medication with really no restrictions and told to follow up with a cardiologist. I have an appointment scheduled for next week. While I am very outspoken and opinionated on most things related to Drew's health, I have found myself a bit lost in this new world of cardiology. I will tell you everything that I know about my heart.

1. I have a heart

When I met with a cardiologist while I was in the hospital, I found myself wowed by his knowledge and simply "taking doctors orders". He told me that we needed to get a better record of my arrhythmia so they would implant a device in my chest called a loop recorder to track my heart rhythms ongoing. At the same time, they would do some sort of internal echo where I swallow an ultrasound wand and they take a closer look at my heart and measure the size of the hole to determine how concerning it should be and what we need to do to treat it. My understanding is that if there is a significant arrhythmia, we will need to address that prior to addressing the hole, because if we do close the hole there will be no way to get to the side of the heart to fix the arrhythmia. I'm sure anyone from the heart community reading this is cringing at my lack of knowledge on the subject and the probable inaccuracy of what I'm saying. I think that's probably the part that's most terrifying; not that I have the problem (it's actually a really good thing that they found it and sounds relatively straightforward to fix it), but rather that I understand so little about it and feel so helpless, asking questions about stuff I don't know, putting my trust in doctors who I don't know. I don't know if I have a good doctor or a bad doctor, and I don't know how to tell the difference. Is there a protocol for dealing with this sort of thing? How do I find a good center and someone who I can trust?

This adult world of medicine is new to me. These doctors aren't accustomed to answering all of my questions and exploring all of the alternative options that I want to check out and I don't like that. They don't appreciate that I have knowledge and skills and that I've been searching online and scouring social media for any and all options - a 50yr old proven effective fix and a 2yr old new, novel approach - I need to know all the options. I like being in control, and when it comes to my life and my health I deserve to be in control.

I've used most connections that I have in the healthcare world to figure out where I should and shouldn't go, and how I can figure out who will be the best doctor for me to see. I've gotten input from 4 cardiologist, directly and indirectly, in the past two days since being discharged, and the fact that they are all seeming to agree with one another leads me to believe that there is a somewhat straightforward path for dealing with this (protocol vs preference). I have some appointments next week to meet some of these doctors and will figure out who I'm best suited to partner with. Until then, I will continue to take my new meds and keep on keepin' on.

Tomorrow I am off to DC and then to NY to make sure that the patient/caregiver perspective is heard and appreciated in all aspects of clinical care. Maybe I can focus in and grab some tips to apply to my new situation!

My perspective

This is my perspective on our life, as described perfectly by blogger Kelle Hampton. I'm sure many mamas (and papas) living in the "chronic condition" world will be able to relate to these words. 

"Being sad and venting is important in acknowledging our feelings, but it’s a very unproductive place for me to stay. I want to focus on solution-based thinking—transforming round holes to square ones when we can. Using resources to change the outcome. Looking around and ripping things off walls, if necessary, to build what we need. We’ll do it because we have to. Because we love our kids, and when you love your kid, there’s no square peg you won’t take on.

And as if fitting a square peg into a round hole wasn’t problem enough, you know what else happened on Apollo 13? They had to conserve power on the shuttle to get it home, so they cut all their resources down. No cabin heaters, no instrument display, no guidance computer, no ground control. No map of where to go and no one to tell them how to do it. Sound familiar? It’s called parenting." 

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I love this place

I hate this place. Coming into the hospital with a "healthy" kid in the middle of cold and flu season seems so counter intuitive. Add to that taking a kid with CF, whose only restriction in life is being around other kids with CF, into a clinic full of other people with CF. The anxiety almost put me over the edge today. We usually schedule our appointments for 8am on Monday mornings when no one is at clinic yet and hasn't been in a few days. The office is clean and the air is fresh. We still wear a mask from the car, up the elevator, through registration and into the waiting room. Once we are back in our own private space I allow him to remove it. Today we could only get in at 8:30, and by the time we had arrived the registration line was full of kids, some in masks, some coughing, some looking less than well. We waiting in line and then waited in the waiting room, as far away from everyone else as we could. I wouldn't let him touch an elevator button or even sit on a chair, fearing that he would pick up a bacteria similar to those he has caught in the past, or maybe worse. The anxiety almost took me today. This is not right!  I kept thinking to myself that this is so not right. And i'm the empowered mom who knows the dangers of patient to patient spread of bacteria. What about the other kids whose parents are less engaged, for whatever reason? Are they just out of luck? No one told them to wear a mask or to not sit next to another patient with CF. How do we even know who all in that waiting room has CF? Maybe some are siblings, who knows!
I've long had a suspicion and fear that the clinic could be the place where Drew is getting some of these bugs, but I've also always had strong faith in the recommendations put forth by the CFF, and they include seeing your care team quarterly. Then last year when all of these new infection control guidelines came out and there was all sorts of data shared on the prevalence of patient to patient transmission, I knew that I was on to something. I freaked out and decided that we weren't going back, but we went back. I am overcome by anxiety and fear when we visit clinic, to the point where my worry makes me nauseous, but we return. This time, my "mother bear" instincts kept telling me that this just isn't right, and I'm determined to find an alternative.
You see, there is very little that happens at a clinic visit that a person can't do remotely, removing the possibility for them to come in contact with a contaminated surface and potentially harmful bacteria in the clinic. There is portable spirometry equipment. People have scales in their homes, and tape measures. We happen to have a PulseOx and an electronic stethoscope, though we don't use the stethoscope. And most of us these days have a cell phone or a computer that they communicate with. I want the opportunity to have a virtual visit. I want the doctors to trust the data that I'm recording, and to consult with them on my sons health. They can offer great insights into why things may or may not be going a certain way and provide me with tips and suggestions on how to make improvements. Regular consults to stay connected without having to be put at risk. How we bill that type of visit or consultation seems to be the issue.
What I love about Cincinnati Childrens is their willingness to embrace this type of idea. They say we understand your concerns, let's explore the options. I've taken them 10,000 thoughts and ideas and suggestions and concerns and not one has been dismissed without hearing me out and trying to find a solution. I hope that we can work together to make something like this work, the virtual visit. It will be hard for places like the CFF to embrace, as it's hard to measure the effect of something that's sort of abstract. I don't know what information they will want and need to feel comfortable and confident that my son is doing well despite not seeing them in real life, but I will work to find out.
Drew got two thumbs up today for his health. He is doing really well right now. He started to feel better about a week into his second course of IV's. The IV's ended on January 28th and we switched right onto his cycled Ceftazadime. Our test of how effective the IVs were will start on Wednesday when he will be off of any kind of antibiotic for the first time since November. The goal of the IV treatment was to extend the period of time that his cough is at its baseline (which is no cough). Prior to the IVs, he couldn't make it from one 15day on-cycle through the off-cycle to the next without being symptomatic and needing another type of intervention (oral abx or a steroid). Hopefully, the IVs suppressed his bacteria enough to allow him to carry on symptom free for nice long stretches. We did discuss the "what-if" plan, as in "what-if the cough returns sooner then we want it to?".  If he ends his inhaled therapy on Wednesday and develops a cough before his two week off-cycle is up, we will start cycling two inhaled antibiotics and not have an "off" period (so two weeks on Ceftaz, two weeks on Tobi, and so on). We both hate that he will be on inhaled antibiotics all of time at such a young age, though antibiotic resistance apparently grows incredibly slow on inhaled medications (often times it takes years). We know that he can get to a baseline of cough free and feel that whatever if takes to maintain that is ultimately whats best for him in the long run. So starting in two days, we will regain another hour and a half our our day, taking our total treatment time down to just 1.5hrs daily, and wait to see what happens. What will we do with all of our free time? Probably worry, it's what I do best. Fingers crossed for a nice long stretch of health, and more to come on a fabulous new tool for patients!

"Not everything that is faced can be changed, but nothing can be changed until it is faced."

Tomorrow is our last day on IV's. Can I get a HELL YEAH!?! Our original 14-day plan didn't quite cut it, and with little improvement and a hospital stay under our belt we decided to forge ahead with another 14-days. I am happy to report that he is well. I will also hypothesize that by the end of the week he will no longer be well as the rest of this house is working on a nasty cold virus. We're washing hands, covering mouths, drinking our fluids and hoping for the best.
This month has been a blur. Between sick days, snow days, and school holidays, we've had our hands full. I've been doing a lot of work again on the C3N for CF. I've connected with a number of patients and families from other disease networks to see how we can work together to facilitate cross-disease learning; no need to recreate the wheel! I will soon need the help of a few CF patients or caregivers to participate in testing out a new learning network platform (think Facebook-esque but WAY better) that holds the opportunity  to connect patients and clinicians and share best practices and learn from one another. I know that these conversations are already happening on places like Facebook and Cystic Life, and I think the CFF is aware that they are happening, but I don't think they have any idea of how often or to what extent. While many of the conversations are useful, I think that we could make them more valuable by organizing them and using them to guide future discussion, or to teach others, patients or clinicians, about what's important to patients, and get feedback that includes recommendations from both physicians and even the CFF. Anyway, I have more info to share, but we're not totally ready to go 100% public with it yet, so if you're interested in learning more and possibly joining this little test group, shoot me an email - erin (dot) moore (at) cchmc (dot) org. You won't be disappointed!
I was invited by the Agency for Healthcare Research and Quality (AHRQ) and the Center for Education on Research and Therapeutics (CERT) to "share my unique perspective" at an upcoming conference that they are having, focused on Medication Management. I don't totally know what that means, and to be perfectly honest, I don't think they do either. If their goal is to improve medication adherence, they've got the wrong goal. If their goal is to use new and collaborative strategies to improve outcome for patients with chronic conditions, and finding ways to better medication management is identified as a part of that, then we're moving in the right direction. I feel like so many people are missing what their looking for on their road to improving "compliance" or "adherence" or whatever you want to call it. If you can find ways to meaningfully and appropriately engage patients in the creation and use of solutions that work for them, adherence will follow. As humans, we are so much more likely to continue doing something that we want to do, versus something that we have to do or are told to do. If all of these wonderful clinicians continue to put together ideas and papers on how patients can manage medication, at the end of the day they will have a stack of papers on how to manage medication and no one will be getting any healthier. Giving me more information to educate me on something indicates both that you don't believe that I know what I'm doing or don't understand and that by saying it another way will make me more likely to comply with your wishes. False. It is likely to annoy me and perhaps make me even less "compliant". If you ask me what I think, or how I would do it, or simply listen to me to gain a better understanding of what my barriers to adherence are, you will learn so much more. And the opportunity for us to work together on a solution that works for me will open doors for other patients to see that they too can participate in the design of a plan that works for them. It's quite simple really. A perspective to share I certainly do have, but I assure you that it is not unique. Ask most patients or caregivers living with a chronic condition and I think you will find a lot of similar thinking. I can't wait for the opportunity to share this perspective with ears who are looking for answers and willing to listen.
I need to put together a slide or two to tell people about myself and share my story. I want it to have an impact. I want them to really hear what I have to say. And I'm giving some thought into the best way to do that. I'll definitely be sharing it on here as well and welcome any thoughts on the best way to engage this influential audience of physicians, insurers, pharma reps, policy makers, and other thought leaders in the wonderful world of healthcare.
I just registered for this years March on the Hill, the CFF's advocacy campaign on Capitol Hill where State Advocacy Chairs meet with members of Congress on Capitol Hill to share the policy agenda of the Foundation. Last year's campaign happened during the "great snow-quester of '13", otherwise known as a warm and sunny afternoon in DC, so we were unable to meet with actual senators and congresspeople, but instead their staffers. Hopefully this year we will get the opportunity to share our stories directly with Ohio's decision makers! Following the March on the Hill is the CFF's annual Volunteer Leadership Conference. Talk about an amazing weekend, this event brings together the best of the best engaged and energetic advocates and fundraisers to share stories and encourage one another to continue to fight. Last year was our first time going, and I cannot wait to go back. 
We are also about to start our 2014 fundraising campaign for Great Strides. I need to put together a new video, but I'll leave you with last years. This has indeed been a long year for us health wise, but we will continue to hold onto hope.

Make a video - it's fun, easy and free!
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An update from the homefront

We're home! We got discharged from the hospital Wednesday evening and made in home in time for evening breathing treatments and the chaos that typically ensues with bedtime. Everyone has been out of sorts for the past few days - not feeling well, not sleeping well, not knowing what's next - so it will be nice to rediscover our groove. All of the tests that they ran on Drew came back negative. Their first suspicion was that he had a bloodstream infection from his PICC. When he wasn't showing signs of sepsis, they started to test for the flu. When we went into the ER he only had a fever and had turned a pale-ish blue color, despite his oxygen saturation being at a totally reasonable level. He had no signs or symptoms of the flu, though I learned that sometimes symptoms follow. Regardless, the flu test came back negative as well. We spent most of our time in the hospital just waiting for results while hooked up to meds. Everyone suspected that he had some sort of viral infection, but when the viral panel that they ran came back negative and he got better, they decided that it would be okay to send him home. It probably was a virus that caused the fever, but not a typical one that shows up on the standard viral panel. Having a virus can cause the body to produce more mucus and inflammation, and in CF that can stir up bacteria and cause trouble. That is the best guess of what happened.

We are home now on two more weeks of IV med. Prior to this admission, we had spent the past two weeks on one IV antibiotic + an oral antibiotic + an inhaled antibiotic. That combo didn't seem to have any impact on his health, leaving him with the same lingering cough that we had been working so hard to suppress. This time we are trying two - IV ceftazadime and IV cipro. We were so ready to be done with IVs because they must be run every 8 hours around the clock for 2 weeks, but it's what he needs so we will do it.

A big thank you to everyone who brought us coffee, sent us dinner, drove our kids to or from school. We don't always know how to ask for help, but every kind gesture is greatly appreciated!

10pm Update

When I ranted and raved this afternoon about my frustration with Drew still needing 2 weeks on IVs, I had no idea what our evening held. Drew got home from school and was playing and having fun, acting just like he always does. Around dinner time he wasn't looking like himself - a little pale, tired, not at all interested in eating dinner. He felt warm to me so I took his temp and it was 102.1. When you have a PICC line and you get a fever you go to the ER as there could be a bloodstream infection.
So to the ER we headed where they began to treat him for sepsis. They also drew a lot of blood to run labs to see if there was an infection in his bloodstream or if he has a virus or what is going on. The tests thus far seem to indicate that he doesn't have sepsis or any blood stream infection though we will have final results tomorrow. They also did a viral panel to determine if he has the flu and have begun treating him with Tamiflu. We will know tomorrow if he has the flu and if we will continue that or figure out what is going on. He is sleeping now, finally, though they will wake him at some point soon for a dose of Tamiflu. The poor kid needs some sleep so that sucks. I will try to update the Doin' It For Drew Facebook page as I get any new info. We appreciate all the thoughts and prayers and hope to be out of here and well again soon!



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