Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD and mom to Hazel, age 8, and Rain, age 6. Rain has Duchenne muscular dystrophy. Follow Ivy at her blog, Living Duchenne.


How I Wish

We step off the elevator and take just a minute to say hello to the shiny purple cow statue, gently touching her painted flowers, quietly sneaking around to the other side to see her mirror mosaics. We always take a minute to see the shiny purple cow because she is really the best part. Then we check in with the friendly receptionist at the front desk. Maybe she asks us to wait for a couple of minutes. That's ok; it gives us a chance to collect our thoughts before going in to see the doctor.

When our turn comes, the receptionist leads us to the consultation room and for a few moments we are alone, getting settled. I appreciate the pacing which allows us just enough time. The room is a comfortable one, a place you wouldn't mind spending a little time in. Maybe it has a window, or maybe it hasn't. What it certainly has is a nice couch on which to sit, room to park Rain's wheelchair off to the side, a desk with its chair and computer. Maybe there is another small table and chairs for children to sit at. Their little table has some books to read or maybe a pull out drawer of toys, or maybe, if the space is a little too tight for those options, there is one of those funny wall mounted mazes for the kids to play with. Maybe there is a larger-than-life, color-coded medical model of a human heart on the desk to help clinicians explain things to the families.

And then into the room comes Our Person. This is the kind and knowledgable Heart Person we see at Muscle Clinic every six months. This is the Person with whom we have built a relationship since diagnosis, the Person with whom we all, parents and patients, feel comfortable and familiar. Perhaps she is a Physician Assistant. Perhaps he is a Nurse Practitioner. In any case, he is Our Heart Person. He is the one we spend so much time with just talking. She is the one who comes into clinic with a stethoscope and a smile, listening for murmurs or rhythm changes, asking about subtle signs of cardiomyopathy: is your son feeling light headed or dizzy? does he complain of tummy aches or feeling ill? is he losing weight? This is the Person who always asks us if we have any concerns, then listens calmly and patiently, offering sympathy whether or not there is an appropriate drug or treatment at this time.

We have already spent a lot of time discussing things with Our Person at Muscle Clinic. When we saw him that first day, that horrible diagnosis day, he offered us his kindest smiles along with his personal direct phone number and email address. Our Person spent a long time with us during the first year after diagnosis talking about current standards of care, our treatment options, timing, steroids, upcoming clinical trials, the differences between an echocardiogram and an MRI. She was the first person who mentioned to us such foreign words as ACE inhibitors, sildenafil, beta blockers, diuretics. Us being us and looking at the very long term, we've even already talked about LVADs and transplants. Our Person recommended to us, as he does to all families he sees, that we look up PPMD's Cardiac Webinar Series

Our Person also reminded us that carriers need cardiac monitoring; she was the one who fought hardest with us to have our young daughter tested, and when her carrier status was confirmed, Our Person got her an appointment in the cardiac clinic within six weeks. It was Our Person, too, who helped me find my cardiologist at the adult hospital across the street. In fact, it was easy since Our Person had handed me a short list on the very first day, with complete and up to date contact information, of good adult cardiologists who are familiar with Duchenne.

But I'm getting sidetracked from our current visit to the cardiology clinic by our long and helpful history with Our Person.

Today, we are sitting in the comfortable cardiology clinic consulting room, waiting to see the doctor, when Our Person steps in the door. He has a wonderful dual bedside manner-- fun and loving with the kids, serious and considerate with the adults. As we discussed last time at Muscle Clinic, Our Person reminds us that now that Rain is six, he is ready to step up from the less-sensitive-more-wiggle-friendly echocardiogram to the more-sensitive-more-responsibility-required-of-the-patient cardiac MRI. Our cardiologist doesn't usually recommend an MRI for kids under age eight who have not yet shown areas of concern during an echo, but Our Person talked with our pediatrician back home and since both had heard an increase in noise from Rain's Still's Murmur, and since I was a bit worried, Our Person helped us talk the cardiologist into starting with MRIs a bit early. Besides, we said, if Rain messes up the MRI results, we'll just do another echo instead and try again next time, no big deal.

So, we head over to the MRI room and exchange a few pleasantries with Our Person while Rain changes into his hospital gown and the nurse gets his IV ready. This is pretty scary for a little kid, so Our Person stays close by and distracts Rain with some questions about the video we've prepared for Rain to watch on his iPad while he does the MRI. It turns out that Our Person is a big Winnie the Pooh fan too (of course). Our Person sees that Rain is ready to get started so she leaves us for a little while to briefly tell our cardiologist our updates and concerns before she goes to greet her next Duchenne patient.

After the MRI, our nurse takes us back to the consultation room. We don't mind hanging out for a little while so the cardiology team can consult for a few minutes. It is so much better to get our results on the same day as the testing, saving us a lot of worry, another missed day of school, and a four hour drive to the hospital and back for a return visit. 

Our Person and the cardiologist enter the room together. From here on out, our cardiologist is in the lead, explaining the test results and offering us some options on what to do about it. I don't mind that her style is on the conservative side; obviously we don't want to do any harm to our child by being too aggressive with unproven drugs and supplements. On the other hand, doing too little is doing harm in Duchenne. Our kids don't have healthy hearts even when they are "pre-symptomatic." Duchenne is doing its silent work all the time, tearing apart the heart's muscle just as it rips and ruins skeletal muscles, whether we are watching and paying attention or not. That's part of why I am so glad that Our Person is with us here too. Our Person is a Duchenne expert, first and foremost; she's a forward thinker, eager to try novel approaches because she understands that that is how treatment moves forward in Duchenne. Our Person understands our urgency because he knows our community well; he is a full time member of the interdisciplinary neuromuscular clinic team, he goes to the PPMD conference every year; he even comes to our FACES events from time to time.

When our visit is wrapping up and our cardiologist has explained our treatment plan and answered all of our questions, he moves on to his next patient. Our Person, however, stays with us for just a few more minutes. It is Our Person's responsibility to make sure we have our after-visit summary in hand. She has highlighted the numbers we need to input into our son's DuchenneConnect profile; she reminds me to update it as soon as possible and promises to send me an email in a couple of days just in case I forget. She'll be in touch with our Muscle Clinic coordinator this afternoon about adjustments to Rain's steroid dose and the new prescriptions that our cardiologist is recommending.

On our way out, we stop in at the front desk to make our next appointment. Things are looking good, so we are not planning to come back until the year after next, but we're not worried about enormous potential changes to Rain's heart condition during that time because we'll be seeing Our Person at least four times between now and then.

We wave goodbye to the shiny purple cow, descend on the elevator and hit the road. It's been a good visit and we're feeling secure about our treatment plan. You know, usually I hate going to hospitals but really, this hospital is awesome. I love having such a great, collaborative, caring team providing my family the very best care that can be had, right here in my own home state.

That's how I wish that our visit had gone.

Luckily, I have the support of our amazing Duchenne community. We know that we don't have to just sit around and wish for better things. We are some of the best educated, most active parents-of-kids-with-rare-diseases that I have ever seen. With PPMD and DuchenneConnect disseminating the latest information about research innovations through webinars and conferences, we really do know what the best care practices look like. We have also seen the amazing impact that dedicated, well informed parents can have on the medical providers who care for kids with Duchenne: a certain famous multidisciplinary Duchenne clinic in Ohio wasn't all that celebrated until a certain famous Duchenne parent started seeing what she could do to improve her local care options. In any case, I've got a meeting with the heads of my local interdisciplinary neuromuscular clinic at the end of the month. Wish me luck!

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Comment by Andrea Cleary on September 6, 2013 at 11:29pm

Luck, and hard work ;)

Comment by Donna Cicardo on September 6, 2013 at 10:59am

Amazing!  I wish we had one of those clinics in Texas!

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