AFib: Always Top of Mind, by Kay Holcombe

Categories: Patient Stories,Stories

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bio_holcombeI was recently asked to present to a professional group of thought leaders about my experiences with atrial fibrillation (AFib).  In preparing for that presentation, I put a lot of thought into how I might tell this story and in wondering about how I should start my story, and I realized that I was thinking about having a-fib not just because I was preparing for this presentation, but because I think about it – and worry about it – all the time.

I remember the day I visited my internist and told her that I was having unusual trouble walking a couple of blocks without getting tired and a bit winded.  She checked my blood pressure and listened to my chest, then had the lab do an EKG.  She came back into the examining room and said, “I know why you’re having trouble; look at this.”  She showed me the EKG, with what appeared to be huge spikes that she explained indicated a very irregular heartbeat.  She immediately called a cardiologist, who told her I needed to get to the ER pronto.  First, I had to walk back to my office to get my things, and told my colleague I was headed to the ER.  She accompanied me, in a cab.

It’s interesting going to the ER when a doctor has already called and said you need to be seen instantly.  In fewer than 15 minutes, I was on a cot in the back, being hooked up to a heart rate monitor and  injected with medication to slow my heart rate, while a technician watched to see if the irregularity smoothed out.

Several hours passed and I was moved to a bed, where I did not see a single health care provider until the night nurse came on duty, who told me nothing.  The next morning, my internist came by.  She finally explained partially what was happening and that the cardiologist on call would be coming in.  I told her that I would be leaving the hospital that afternoon, discharged or not.  I told the cardiologist the same thing when he showed up several hours later.  To his credit, he discharged me and told me to see a cardiologist to have my heart ejection fraction checked in two weeks.

I found out what an ejection fraction was by looking it up on the Internet.  I did have it checked and then convinced myself that I was surely in trouble because my heart was basically working at 1/3 capacity.  I was unable to get an appointment with a cardiologist in this area for eight more weeks. Finally, my internist interceded, or I possibly would have waited another month or so.

In that intervening time, I lived in constant fear that I would die.  I was terrified to exercise or exert myself in any way.  I could feel my heart fluttering and was convinced that if I closed my eyes I would never wake up.

Eight weeks later, the cardiologist finally explained it all to me and calmed many of my fears. He convinced me that with appropriate medication and monitoring, I could deal with this. I also had, through my own research, learned that millions of people are affected by a-fib, so I had quite the robust support group possibility!  And I learned, much to my surprise (I wonder to this day why I never knew this), both my mother and one of my brothers had a-fib.

Today, five years later, I still have a-fib, although I no longer feel my heart racing constantly.  I still have the fear that this condition will result in my death.  And, while I know intellectually that AFib can cause stroke and probably not cause a heart attack, I have an obsession about sudden death from a heart attack.  I also hear about people with AFib who have what they call “episodes,” which send them to the ER.  And I’ve asked my cardiologist “what is an ‘episode’?”  He doesn’t respond.  I guess I’m lucky that, whatever an “episode” is, I haven’t been back to the ER.

But I was always the person who was the healthy one, who had the occasional seasonal cold and never took a day of sick leave.  The AFib experience turned me into a constant worrier.  Every time I take a deep breath instead of a shorter breath, I wonder – is it my heart?  Am I going to die?  My appropriate realization of my risk of blood clots and of stroke has been accompanied by a really inappropriate and almost obsessive fear of a heart attack.  Something is wrong with my heart, I think, and if something is wrong with your heart, you are in serious trouble.  One thing I’ve learned is that while a-fib has tangible effects, the intangible effects, including anxiety, are probably just as important.  And surely I am not the only AFib patient, or thrombosis patient, or embolism patient, who possibly could worry herself to death.

If health care providers were to ask me for some tips on how best to serve AFib patients, I have a few.  First, a patient should not have to be in a back-room cot in the ER, followed by a bed on a random ward where there happens to be space, with no doctor or nurse even making a cameo appearance, much less telling the patient what’s going on.  When you come into the hospital through the ER, are hooked up almost instantly to a heart monitor, and then sent for various scans that go well into the night, you worry.  And if this is about trying to calm a racing heart, or reduce out-of-control blood pressure, the last thing the hospital should do is raise the patient’s anxiety level.  And, finally, a patient just out of the hospital who now needs cardiology attention should not have to wait eight weeks to see a doctor.

I think, if I met a newly diagnosed AFib patient, I would tell them all the things I didn’t know – first, this isn’t a rare condition.  There are millions of people who have AFib, so there’s lots of knowledge out there.  Second, your life and your quality of life are in your control.  There are medications you can take, procedures you can try; in the majority of cases, this is not an uncontrollable, unmanageable condition.   So live your life the way it works best for you.

Today, I am truly grateful to have always had very low blood pressure, and I am thankful to see a cardiologist who reassures me that AFib is not going to cause a heart attack.

And let me note that since I’m definitely not a teenager, I know the fluttering along my left side is not produced by that cute guy in homeroom, but by a medical condition that I am controlling because I am aware of it and determined that it will not get the better of me. I’m surviving Afib so far, and hope to survive it for many more years.

Kay Holcombe, a member of NBCA’s Board of Directors, currently resides in Washington D.C.

Author: L F

7 Responses to "AFib: Always Top of Mind, by Kay Holcombe"

  1. Summer
    Summer Posted on March 24, 2015 at 3:51 pm

    Kay, I had an incident with an irregular heartbeat and was diagnosed with A-Fib. I was put on a blood thinner which is causing me problems with my nerves, my vision and not sleeping. I am just the opposite, I can walk for blocks with no problems and have loads of energy and yet I was put on blood thinner of which I am told I will never get off. My doctor is one of the rudest people that I have met. If I ask him questions about my medication he tells me that I am arguing with him. The medical profession just don’t seem to get it when it comes to trying to put their patient at ease. I still think that aspirin would have served the same purpose as this medicine that I can barely pay for although there is little concern about the cost when they are writing prescriptions.

    • Richard
      Richard Posted on July 1, 2015 at 1:16 am

      Hi Summer,
      FIrstly, change your doctor or read him the riot act. When he doesn’t answer ANY and ALL of your questions, he is not a healer in any sense of the word. If he has no computer with internet access IN HIS EXAMINATION ROOM, he is not just incompetent but morally indecent. My doctor tends toward the “I know better than you” but he always takes my questions seriously and answers me until I’m satisfied I understand what I needed to know.

      Second, Ms. Holcombe never said how she is managing her A-fib. I am vehemently opposed to pharmaceutical solutions but with high b/p, type 2 diabetes and A-fib, I have been doing an enormous amount of research and have come to the conclusion that I need a combination of natural and pharmaceutical remedies. I suggest you do the same

      Do your own research and when you can’t find an answer, write it down and if your present doctor has an email add. or you find a new and better doctor, send you questions as they arise from your research.

      Good luck and remember that YOU are in control of your health and treatment! Knowledge empowers us.

  2. Yvonn6
    Yvonn6 Posted on June 3, 2015 at 9:33 am

    Hi Kay..that was good for me to read..I too have suffered many afib moments and experienced the same feelings you have had.. Reassurance is something we really need..and all the tests. I have an acidity stomach which has become quite a problem causing a lot of wind in the intestines pushing upward which I believe triggers the ♡ to race or go out of sync.
    Anyway..all I know is t hat it’s very scary and being left alone only adds to the stress of it all.
    I’m so thankful to the staff at ER when I’ve ended up there but for my ongoing comfort (as often I’m home coping mostly alone) I have the Lord Jesus in my life so He has been helping me deal with the fear Ive experienced:-‘going thru the valley of the shadow of death’. He is my hope and I know ‘He never leaves or for sakes me’.!
    May you know God’s blessing! Thanks for your article.

    • lainie ross
      lainie ross Posted on September 10, 2015 at 5:12 am

      I found great comfort in your post. I recently too had a similar incident like Kay and was left in ER limbo all nite, waited 12 hours in the morning for a rude bad-breathed young man to do my echocardiogram and discharge me. Your words from Psalm 23 were a great help. Thank you, Yvonne.

  3. Debbie R.N.
    Debbie R.N. Posted on June 22, 2015 at 4:04 am

    I’m sorry you had that experience in the E.R. That should not have happened however, it did happen to me also 1 time. I always tell my family, friends and patients don’t be “afraid” to get a second opinion. It’s your body, health and your future you have to live with. Be proactive, learn more about your condition through the internet or social media. Your hospital may have a special R.N. that does patient education you may benefit from however, lots of hospitals are phasing that out unfortunately and leave that respondsibility to your R.N. The ‘blood thinner’ you may have been given in the hospital and and were to administer to yourself at home is Lovenox. It is not difficult to learn and if children can learn about their Diabetes and administer there own insulin at least daily, adults should be able to give themselves shots with tiny needles. I could go into a lengthy discussion on prothrombin, platelets, anticlotting factors, PT, PTT ,INR, and gene mutations but for the sake of brevity I would suggest again-go to a site like this one stoptheclot.org or web md to find out more. Many, many times I have had patients tell me, “Oh I read all about my( whatever ) on the internet!” I think it’s great. It helps people talk with others with their same condition and how they handle it. And P.S. About Dr.s not having enough time in the office to spend with you, I agree but having been the on the other side…I know we sometimes wonder why we have to wait in the office for our turn. True frustration. But they want to stay on time, they want to keep their patients happy however you don’t realize there were 5 more patients to work in that day because their illness or condition has changed overnight or over the weekend. Case in point. I myself took my 5yr old daughter into her peditrician whom I worked with at the hospital. I knew she had Strep. throat. I knew she had a fever and was in pain and as 15, 30, 60, 90 plus minutes went by I thought, Oh my gosh what is he Doing?!! Then about that time he walked in and it was obvious to me he had been crying. It felt like my heart dropped out of me. He sat down, ran his hands through his hair, took a deep breath and said, ‘Well it looks like someone isn’t feeling well today..” I asked him if he was okay and what happened.” Basicly took the last hour and a half telling the parents next to me their 4yr.old had Leukimia. I hung my head and quickly thanked God my little girl only just had a Strep. throat. We have to remember that physicians are only people too. We can’t possibly know what they have been through just in the hours before our appt. Many times they go without lunch or dinner or haven’t sat down all day and go to see patients at the hospital. Of course they miss dinner with their family, arrive home to have everybody mad because they are disappointed yet again. ( I know because I was married to one for thirty-one years.)

  4. Mike M.
    Mike M. Posted on August 5, 2015 at 3:33 pm

    Anyone whose having problems with atrial fibrillation needs to find out about the latest methods of Cardiac Ablation. One does not have to suffer with AFib in today’s world. I suffered with all the same issues everyone else has. Myriad trips to the ER to get an EKG only the have my heart convert back to normal sinus rhythm before I could get hooked up. Finally I got lucky and got it on an EKG and I was off into the world of blood thinners and heat rate control meds for 17 years until 2007 when I had a Catheter Ablation. No AFib since then. A few PAC’s now and then but nothing can be done about those and they are not much of a concern anyway.

  5. barbara crissy b
    barbara crissy b Posted on September 16, 2015 at 3:41 pm

    Thank God for this info. my son has had 2 PE’s and now is going to have a procedure with a pain specialist who will be doing a radiofrequencly ablation on 9-17-15. I just became aware of my 43 yr. old going ahead of this without me
    knowing about it. He has had a dose(many at 2 different times) to stiop his back pain the first round relieved his pain
    the second round did nothing. If I was in the shoes of my son, I’d want to go a different route. I’m planning on going
    to the outpatient event and speak up about this info. ‘within the last 2 months he’s been put of Xeralto after being on
    Coumadin for approx. 10-12 years. He is a patient of a Good Shepard Clinic for non-workers for 3 years, he has
    no insurance, no disibility,etc. I support him. He was a naationalwide boiilmaker in power plants…flying, driving but
    his legs hurt so bad he can’t work. I’m so nervous about all the qluick dicisions he makes.Barbara Crissy