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What is the Big Picture in Handling your Treatment?

Jul 6

Posted by: ACHA
7/6/2012 10:39 AM  RssIcon

By Ellen Greenberg

Two months ago, I witnessed unkind treatment by my team. I started to have strange symptoms at first; we thought they were side effects of Valtrex that was treating my shingles. When these symptoms worsened every day, they mimicked panic attacks. I could not breathe or walk up the stairs without stopping, and suddenly I napped in my bed every time I got to the top of the stairs.

I immediately wrote an e-mail to my doctors. Every doctor told me to do a pacemaker check. This is something I admittedly am negligent about, because it requires me to move furniture to get to the phone jack. After unsuccessful pacer checks even with the help of technical support, I changed the batteries in the device itself, and still nothing.

I rewrote my doctors and stated, “You don’t understand, I don’t feel good now. I am back in school and trying to get on with my life. I do not have another seven months for you to figure this out.” It took all of that just to get an appointment. Do not our cardiologists want us to thrive? My doctor who focuses on CHF never does an EKG but after I had listed my symptoms in the e-mail and on the phone, she finally did one and found an arrhythmia wave and that my BP and pulse ox were down. Not greatly—I run low BP levels but the pulse ox was a little off.

She immediately interrogated my pacemaker. My battery was dead! Three days later, I had a new pacemaker inserted into my abdomen.

My doctor could not let the issue of my e-mail go, and discussed it again on my two-week post-op appointment. First, who is the patient here? I follow all the rules. This doctor has known me since I was 17 and knows when I am joking and when I am being serious. I expressed that I had been crying while I typed the e-mail because I did not want all of my hard recovery efforts to be for nothing and be sick for another year of my life.

The story of course does not end here, as there were further communication gaps. After getting to the hospital early for my follow-up appointment and waiting, I learned my appointment was bumped. I returned home feeling defeated. However, I eventually saw my doctor two weeks after my original appointment and she and I were equally thrilled with the fact that essentially, this was an easy fix after all.

So, after all is said and done, is credibility important? Isn’t it better to be your own best advocate and maintain your cool without using harsh, negative words towards the people who will take care of you? Is it OK to light a little fire every now and then, when you know how they operate? Unfortunately, it is all too often that it is our job as the patients to keep all the cogs in motion just to get some satisfaction and peace of mind. Having worked in the healthcare profession too, these two things should not have to be asked for. A kind word from a doctor can go a very long way.

Ellen Jenny Greenberg is from New York, where she also currently resides. A child life specialist, Ellen has had five open heart surgeries and is obtaining a Masters Degree in Early Childhood/Early Child Special Education. Her congenital heart defects include transposition of the great arteries, ventricular septal defect, atrial septal defect, tricuspid atresia and single ventricle. Ellen sings cabaret regularly and hopes to sing, write and speak for the CHD cause as her journey in life continues.

Location: Blogs Parent Separator ACHA Blog

2 comment(s) so far...


Re: What is the Big Picture in Handling your Treatment?

The big picture is that you and all of us deserve prompt, courteous, professional service from the doctors. I've experienced what you have, and to be turned away by doctors is a very negative experience, and totally unnecessary on the part of the docs, esp. when only 1 directs to the whole team what should or should not be done. I was there, and it wasn't nice; in fact, it was life threatening.
Good for you pushing until you finally got the attention you needed. I hope it never happens again. I no longer have respect for those who shoved me off and told me what I don't need, instead of asking me.
I changed doctors. Maybe that isn't easy for you; it was good fortune that it happened for me.
Take care and remain assertive as necessary.

By Connie on   7/6/2012 1:09 PM

Re: What is the Big Picture in Handling your Treatment?

Staying active. I had an ASD repair March 17, 1965. Today I turn 52. In June I completed another long distance bicycle tour, this time 360 miles in a week. I take Verapimil to control my heart arrhythmia due to scar tissue on the heart from the surgery. God has given me the grace to be married for 32 years, raise three boys into men, and have a wonderful career in chaplaincy.I thank God for the minds and hands behind pioneering medicine. It truly is a remarkable age we live in.

By Gary on   7/24/2012 7:51 AM

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