For The First Time in Twenty Years

I don’t know where to begin. As you all know I have a CHD. I have had CHF for over ten years and in that time have had over 30 catheterization procedures. From Pace Makers and ICDs to attempts at ablations and mapping. Point is I have had a lot of them.

My very first Cath Procedure was 20 years ago at Uconn Medical Center and it was essentially an ablation attempt. Although it was so long ago that it was in fact a study and was not something that was normally done. It was in an attempt to stop my Atrial Fibrillation and of course didn’t work. Anyway I was very nervous going into it. It was the very first time I had been at the medical center and literally a half hour before they brought me into surgery was the first time I met my Doctor. He was a very nice man and seemed very confident about the procedure. He also didn’t look like he had slept in days. He had huge dark circles under his eyes and his white coat was wrinkled liked he’d slept in it. By the time they wheeled me into surgery I was beyond nervous and had moved to petrified. It didn’t help that this was the first time I had any heart procedure since just before 4 years old. He kept me on the table for 14 hours trying to stop the Atrial Fibrillation. He couldn’t and as had been prearranged the next evening took me in and did and AV Node ablation and put in a permanent pacemaker.

As it turns out it all went fine and allowed me ten more years of an extremely active lifestyle. Ten years later I was having issues again and hooked up with an Electrophysiologist, Cardiologist and Pediatric Cardiologist and their Nurse Practitioners and other staff. They pushed me through the system and where there with answers when I had questions. If I called I received a call back right away. Communication was good and I really, really trusted them. We came up with plans and put them in action. They where there for me and so the catheterization procedures where easy. I was never nervous before them or about them. The Doctors took the time to explain what ever I wanted. They had things together before the procedures and I felt as if everyone had done everything that they could to prepare. It became a joke about how relaxed I was about my procedures and how often I was in the hospital. I was once told they should put my picture next to Lais a faire in the dictionary. Because I seemed unaffected no matter the size of the problem.

Thursday I have a cardiac procedure. My first with my new team. It took 3 weeks and several calls from me to get a date for the procedure to begin with. I eventually had to call my team and ask for the number to the cardiac cath team so that I could physically talk to them and make them do it. Apparently when a Cardiologist says they need to call and book an appointment that’s not good enough. I book the date and then get a call the next day saying we have to push it back 2 weeks because your surgeon wants to do it himself. That way he can be sure to get all the information he wants. (this makes sense) So for 2 months I have had this date set. I immediately mentioned that I have an allergy to Heparin and so they can’t give that to me to ween me off of my Coumadin for the Cath. I tell them I have used a low molecular weight version called Lovinox. I explain I have had this allergy for a decade and have used the Lovinox repeatedly during that time. Now it is 3 weeks before the Cath and I’m worried that no one has gotten to me about writing a script for the Lovinox. So I call my cardio. 3 days nothing. So I call again. I get a voicemail that they need to talk to me. I call again 2 days nothing. Beginning of last week I finally talk to my Cardiologist. After 30 minutes of repeatedly saying order me Lovinox, I’ve used it before it’s fine. I get I’ll let my NP know and he will call you back and take care of it. 2 days no call. I call back, my Cardiologist is at a conference and hasn’t said anything to the NP. So now the NP and I go back and forth over the whole thing and he is going to confirm with the Cardiologist on Monday and get back to me same day. Monday comes and goes. Tuesday I call and leave a message no call, Wednesday I call and get a call back but he hasn’t talked to the cardiologist yet. Thursday no call. So today I have to call multiple times go over everything about allergies to Heparin and how I’ve used Lovinox and why it works and not the Heparin. Ok I will confirm and call the script in today he says to me. Then he wants to know what they use during the procedure as a blood thinner in an emergency situation. Like I know. I mean, I’m the patient. You know the guy who they put to sleep. So I tell him call my EP down here and he will know. He has done all my procedures.  He tells me to hang on that he can’t find his number. So I say give me your direct line and I will call him and have him call you directly, before Thursday. I know this is the best way, because I know my guy here is going to do it and I’m not so sure about these new guys up there. I go down about 7:30 to get the script. Not called in. I need to start taking this stuff Saturday it’s Friday night. I have to page the on call physician explain the whole thing again and she calls the script in. I get a call an hour later from the pharmacy. My Pharmacist (I have had her as my pharmacist for more than 30 years, since I was a child) she says the on call is a resident and not an actual Doctor so her script won’t be accepted by my insurance. I had to go on-line and do some maybe not quite kosher things to get into the Doctor section of the website to get a working phone number for my Cardiologist so that my pharmacist can then bill my insurance properly.

Here is my problem. I have spent nearly 9 years trying to get healthy enough to have surgery which is my final goal and for which this Cath is the last step before it happens. I have to call to get that cath booked, because they haven’t called me. Then after a month I start worrying about my allergy, because no one has called me about it. So I start making inquiries myself. It takes a week to get a hold of anyone and then another week of what is obviously a painful lack of communication on this new teams part leaves me scrambling to do their jobs so that, they can do the procedure they say they need to do.

The easy-going patient is gone. They have erased him. The calm and relaxation before the storm has been torn away. I am left doubting whether my new “team” has really done everything they can in preparation to make this procedure successful. I am angry that I should have to go through this. I am angry enough that I am going to be demanding a sit down with all involved to find out why this has happened. I am nervous that they won’t be ready if there is a problem. For the first time in 20 years I am afraid of having to have a Cath.


About jonmrjr

I am a 40 year old survivor of Congenital Heart Defects or CHD for short. This is not another blog about how I survived a heart attack. Congenital means born with. I have lived with this my whole life, as have many others. 1 in 125 babies are born with a CHD, it is the number one birth defect in the world. World wide it kills more children than all childhood Cancers combined. This is my story and how I live with CHD. My hope is to bring awareness to this condition and inspire others to chase their dreams as I do.

Posted on March 16, 2012, in Uncategorized. Bookmark the permalink. 2 Comments.

  1. Yesterday I received a call from my Cardiologist. She went over everything that has been going on over the last 3 weeks. Apparently they where in contact with my home “team” and the records where not in the office. It has been long enough since my last procedure that the records have been moved from the personal offices to the Hospital Records Department. Apparently this is where the hang up is. No one has been able to get information from records. So my old “team” didn’t have the info on hand (of course they don’t want to guess) and my new “team” can’t get the information. This has apparently been going on over the last 3 weeks. She said she feels very frustrated about the whole thing and wanted to have this lined up and the info 2 weeks ago. I took a minute to explain how things looked from my end. How not knowing what they had been up to I felt and thought I was being blown off. We have agreed to go ahead and stay in contact via voice mail. That way if she has talked to someone I know she is on it and she has asked that I try to contact my old “team” myself to see what I can do about getting the information. The whole thing came down to a lack of communication between myself and the new “team”. I feel much, much better knowing that they have been trying to get the information the whole time and that they will do a better job going forward of keeping me in the loop.

  2. You have gone through so very much pain and suffering both physical and mental with those horrid proceedures.

    You are indeed a very brave person. Good luck I hope things get better.

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