I think most of you reading this blog know about my heart issues over the past year. If not, and if you are interested, feel free to catch up here. The Cliff Notes version goes like this: At 41, I had a massive heart attack, almost went into cardiac arrest [a few shocks from the defibrillator stopped this] and I had to have open heart surgery. It has been difficult, both physically and financially, to come back from this, but I have been very determined to do it. When I left the hospital, my team of doctors put me on a low sodium diet, fluid restriction and a ton of meds. As a matter of fact, before I could even leave the hospital, I had to watch several videos on how important it is for someone with congestive heart failure [my souvenir from all of this] to follow the low sodium and fluid restrictive diet. I also did 12 weeks of cardiac rehab to try to strengthen my heart. As I am not interested in finding out just how bad life with congestive heart failure [aka heart failure] can get, I have been trying to do my part and follow doctor’s orders to prevent that.
This weekend I am covering Epicenter Music Festival for my entertainment and music blog, EatPlayRock.com. Though I covered Merlefest, Hangout Fest and Carolina Country Music Fest last year, this will be my first music festival since my heart attack and I am both excited and nervous to see how this goes. I was sent my confirmation to be part of the media team for this event on 4/26. As I spent the next few days reading over the rules for media, as well as for those camping at Epicenter and the FAQs, I came across this:
Since I have to stay below 2000mg of sodium daily, and one typical fast food or food truck meal can easily have that, I knew that there was no way that I could comply with the doctor prescribed low sodium diet if I were to eat in the festival everyday. And since I am working at the festival, I really can’t just come and go as I please to the campground to grab a snack. So, I could either eat way over my sodium allotment for the day, for like 4 days in a row, or I could just not eat at all. Nice choices.
4/30 – So I decided to call my doctor to get a note to take to the festival with me. I have a general practitioner at Northern Family Medicine in Mount Airy, as well as a cardiologist at Wake Forest Baptist Health Cardiology in Winston Salem. Since I live in Mount Airy, and also feel this is the type of request your family doctor typically handles, I decided to call Northern Family Medicine to request my doctor’s note. I called, spoke to a nurse and gave her my request.
The nurse from Northern Family Medicine called me back later that afternoon to let me know that my doctor [or actually I think the man I typically see is a practitioner] would not be able to write the note because he was not the one who put me on that diet. She then instructed me to call my cardiologist for the note. Honestly, I found this confusing as he has had no problem refilling my prescription requests with my pharmacy and he is not the one who originally put me on those. He has also been the one handling my day to day heart failure and instructed me to let him know if I needed anything. But anyway….
5/1 – On 5/1 I called Wake Forest Baptist Health Cardiology and put in my request for the doctor’s note. I also told them that I had first made the request at my family doctor’s office and they refused to give me one. I made the nurse aware that it was a work event that would be coming up the following week and that it was urgent that I receive this note quickly. She took down my name, date of birth and other identifying information and assured me that she would get the note taken care of that day and that she would mail it to me as the doctor’s office is 45 minutes from my home. She also said that she would make sure I got a call back when the note was placed in the mail.
5/3 – I had not received that confirmation call by 5/3, so I decided to give Wake Forest Baptist Health Cardiology a call back. I informed the nurse that I spoke to of my previous call and request and that I had not received a call back so I was calling to check back on the status of the note. She checked the computer and told me that she could see the request ha been submitted but that no one had responded. She said that she would resubmit the request as “urgent” and I made sure that she was aware that I would need the note by the morning of Thursday, May 9, at the latest. Again I was told that I would receive a call as confirmation as soon as the note was placed in the mail.
5/6 – By 5/6 I had still received no confirmation phone call. I had started out with a week and a half to get this letter and now it was down to like 3 days and I was starting to panic. So I decided to try social media instead thinking if I talked to different people, there might be some action.
I called my @wakehealth cardiologist's office repeatedly last week about a doctor's note I need for any upcoming work trip. Nurses promise I'll get the note mailed to me and a callback and I never do. Please advise as to what I need to do as I need this asap.
— Dawn McAlexander (@TheNewClassy) May 6, 2019
And, amazingly, I got an answer within an hour.
I both replied to their tweet and emailed the address given within an hour.
And it’s been crickets ever since…
I am really at a loss here. It’s been beat into my head repeatedly about how important it is to stick to this low sodium diet if I want to have a good quality of life. Congestive heart failure is characterized by fluid overload, in my case, blood or fluid gets in my lungs and I have difficulty breathing. Too much sodium can also make my blood pressure increase or cause arrhythmias. And I am not trying to get defibrillated again.
I feel like I received really good care from my team during my hospital stay and for the first few months after my surgery. But I feel like this is not a request that should be so difficult to fulfill. How much trouble is it to get a receptionist, CNA or even a nurse to write this note up and have a doctor to sign it? How much more time, man power and labor hours is it taking to answer repeated calls and to submit repeated requests that go ignored?
This isn’t cost effective behavior nor is it in the patient’s best interest. I wonder how many patients don’t feel cared for, heard or that their needs are being met? How can we expect someone to put their full faith in a medical team that seems a bit disinterested in their well being? How can we ask a patient to put forth their full effort to heal if they feel that effort is not being appreciated or acknowledged and reciprocated by their care team?
That’s not my attitude, but I am certain it will be that for many. And how many people are not receiving the care they deserve, even if they are asking for it, only to end up back in the hospital where they are blamed and, dare I say it, victim shamed? Because you can trust that if I were to eat sodium laden food all weekend at the music festival and end up fluid overloaded in the hospital, or if I were to refuse to eat and end up hospitalized for that, we all know who will be blamed. Don’t we?
I wonder how many hospital stays and/or deaths are marked as “failure to comply” that really weren’t a failure on the part of the patient at all. They say patient care is a team effort. Well, if doctors are going to be paid to be part of a team, shouldn’t we expect them to actually be a part of that team, not passive benchwarmers, just waiting to jump in for the winning touchdown but otherwise not participating. I am still here and I still need care. Yes, I realize this all might seem a bit overly dramatic to those of you who have never gone through similar situations. But for those of us who have, it is so important to advocate. Don’t count on your doctor to advocate for you. At the end of the day, your health is yours and yours alone.
Be strong and say what you need. And keep saying it until someone listens.
5/7 UPDATE #1: [approximately 11am] I called the Patient and Family Relations number at Wake Forest Baptist Health and got a prompt to leave a message or to call and ask for the “Nursing House Supervisor” if urgent. I hung up, did as prompted in case of urgency and was instead transferred to a “Staffing Department” where the person seemed very disinterested in my problem and transferred me back to where I started to begin with. So I left a message. Still no email response to the place I was told to email on Twitter and no return call from Wake Forest Baptist Health Cardiology.
I also tried to call back once more to speak to the “Nursing House Supervisor” and the phone rang off the hook, giving me no option to leave a voicemail. I need the doctor’s note in less than 48 hours. If I do actually end up getting it at this point, I am certain I will have to make the 1.5 hour round trip to pick it up, something I would not have had to do had the note been mailed almost an entire week ago, as promised.