When the doctor tells you….

Today I want to share a personal story about something I had to face a few years ago.  I have had heart problems since I was pregnant with my 3rd child. My heart would go up to 250 beats per minute and they would give me adenosine to stop my heart for up to 10 seconds and then it would restart itself. I faced this with my last pregnancy as well. When my son was 2, I elected to have heart surgery to correct the problem.  My resting pulse when I was pregnant was 120 bpm and when I was not pregnant it was and still is 95 bpm.  It is called Supraventricular Tachycardia. It is not healthy to have your heart beat that fast.  It does not allow the heart to fill and function at optimal level.

A few years ago I starting having symptoms like edema, shortness of breath and when I was laying down it sounded like crackling when breathing.  These can be symptoms of a heart attack so I made an appointment with a new cardiologist because we had moved since I had last seen one.  They set me up for the nuclear test which is getting radioactivity injected 2 times. Once with a body scan and then while walking on a treadmill.  When you are told you cannot fly or go across the border for a week after because the radioactivity will show up is kind of crazy. After the test we went on vacation.  4 days after the test I received a call asking when I was going to be home.  I let them know it was on Thursday. They scheduled me for Friday morning. After my visit on Friday, I was scheduled for an angiogram on Monday morning.  It is hard to tell you what I was feeling that weekend. They said they saw a possible blockage.  What does that mean? Did we catch it in time? Do I need surgery? It was a long 48 hours.

I had the angiogram, you are awake for the procedure. My doctor did not say much during it.  When in the recovery room they were doing a cardioversion on an older gentleman. He coded and they all ran to assist in bringing him back to life. My husband and just sat there taking it all in. 15 minutes later we were getting ready to leave and he was sitting up in bed eating. I just looked at him. “You have no idea what just happened” I thought.

The following week I was back in to find out about my test results.  He seemed uncomfortable. “Do not filter it, just tell me.”  he said “You have Diastolic Dysfunction, congestive heart failure” I am 42 years old and just diagnosed with heart failure.  Honestly, I cannot remember much after that other than going home and calling my husband. I went on the internet to look it up.  Evidently, it was caused from my fast heart rhythms.  The statistic is 50% die within 5 years. I even went to the director of the heart failure clinic to get another opinion.  This is where the glass half full and half empty really apply.  What was going to happen to my kids, they were still young. My son was only in 2nd grade.  I gave myself a day to have a pity party.

So what do you do when you get that kind of diagnosis? You plan, plan and then plan some more. I got involved with the Seattle Heart Walk which I have walked in for the last 4 years and helped to start one in my community.  I made a “living list”  what I wanted to do with my family and myself.  I bought myself a used mini cooper that I love. I became the cheer coach for my daughter at school.  I blogged about living with CHF.  One of the blogs was about I wished everyone was given a diagnosis like this and then after 4 days told that it was wrong. It is amazing what really becomes important in those 4 days. I had experience with the term “life is short”. My Dad died at 63 of cancer, he worked his whole life building for a retirement that never came.  Now here I was thinking I will probably not see mine either.

My #1 item was a trip to Europe.  It took 2 1/2 years to get it but it happened. I spent months pouring over travel sites and places to stay.  It was my dream trip but also my living list trip.  We were scheduled to go in April of this year. Switzerland, Germany, France, England and Italy.  My husband and I never had a honeymoon so this was for just us. I picked amazing places to stay in like a 500-year-old castle in England where Henry the 8th stayed on his honeymoon with Anne Boylen. It is the only Tudor castle you can stay in.  I have loved Castle Neuschwanstein in Germany which they based Cinderella’s castle in Disneyland and now I was going to see it.  Everything I have dreamed of and hoped for was coming true.

In March before my trip, my friend highly recommended a cardiologist closer to me.I made the appointment and met him. During my exam, he was looking through my past test results and said “I do not think you have heart failure”   “What???? What????  How could that be??”  My jaw was probably on the ground. He ordered an echo for the following week. The time between that moment and the echo was surreal. Wait a minute, I am dying here. Don’t you understand I’ve been living with a death sentence for over 2 1/2 years? 2, not 1 doctors diagnosed me.  The test could not come fast enough.

The test was done and he called to tell me I do not have congestive heart failure.  Yes, I do have diastolic dysfunction but not heart failure now. I more than likely will later but I am not living with it currently. It took some time to process this.  All the things I did not do because of it and all the worry that my friends and family had dealt with. But then I thought, wait a minute. If it had not been for that I would not have bought a mini, booked a trip to Europe or spend all my time with my husband, kids, and grandkids.  I would not have been as active in the heart walks and try to inspire others to live every day to the fullest.

After our visit to Neuschwanstein, we had a horse drawn carriage take us down the hill and we had dinner.  During the meal, I got a little emotional. My husband asked why and I said “When I booked this trip I thought it was my bucket list trip, that I was slowly dying and now I can come back in 10, 15 or 20 years to see this again”   So my advice is to never, ever give up hope or faith. Even if you are facing something like that, as long as you have a breath in you, make it amazing. Tell everyone you love that you love them, eat dessert first, take chances, give bear hugs, live with no regrets and have a eulogy so fantastic it will make your kids cringe.

Now I have to save for retirement…


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