I failed before I even started...

Today I had my cardiopulmonary stress test at 1:00pm. I arrived on time and waited to be called back. The techs started me out with some breathing tests and then began prepping me for the heart and lungs stress test where I ride a stationary bike. After they placed all 12 leads on my chest and it started reading my heart rhythm they noticed my heart rate was 38 bpm. They asked me if that was normal and I told them yes. They looked very concerned and stated they needed a doctor in the room during the stress test. They decided to take my blood pressure before they called the doctor. I told them they might as well get my oxygen saturation too because that was going to be low just like my heart rate and blood pressure. They placed the oximeter on my finger and when it read 80%, panic appeared across their faces. They said they would not be able to perform the stress test because they are required to stop the test anytime someone's oxygen level goes to 85 or below. They confirmed with the doctor that they could not proceed forward with the test. They called my cardiologist and informed him as well. We grabbed our things and left around 2:20pm.

So I'm guessing I failed before I even started the test because I was not even healthy enough to begin with.

Surprisingly, this is not the first time something like this has happened and will probably not be the last.

• When I was 21 years old, I needed a tubal ligation before I got married so I'd never become pregnant. The pressure of a pregnancy or loss of a pregnancy on my heart would kill both me and the baby. After being prepped for the surgery the anesthesiologist came in, looked at my chart, and said it was too risky and refused to perform an epidural to numb me. I had to gather my stuff and reschedule for another day with a different anesthesiologist.

• I've also had cardiologists tell me that they are grateful I'm alive, but that I intimidated them and they did not feel confident and comfortable caring for me.

I actually appreciate their honesty. I want someone who is comfortable in their abilities. I am a unique case and pretty much their guinea pig.

Here are my current "normal" stats:

On a good day:

Blood Pressure: 86/50

Pulse: 51

Oxygen saturation: 80%

On a rough day:

Blood Pressure: 73/35

Pulse: 32

Oxygen saturation: 78%

I look very normal to most people. However, when I exert myself physically I start turning blue. Above is a picture of my hand next to my daughters after walking down the street. It doesn't take much for me to turn blue. If I go swimming (stand in a swimming pool, I don't actually have to swim), walking, walk up stairs, vacuum, etc. you may have the opportunity to see the above color in my face and hands. My daughter has said, "I want to go sledding with you so I can see your face turn purple again like last year." I like to say it's one of my many talents.

If you'd like to get technical, here is a description of my congenital heart defect as described by my cardiologist:

Mrs. Smith is a 36-year-old lady with a history of complex a cyanotic congenital heart disease characterized as follows: a single ventricle with interrupted aortic arch and a large patent ductus arteriosus supplying the descending aorta with L-transposition of the great vessels. She, therefore, has Eisenmenger's physiology with chronic cyanosis, digital clubbing, and secondary erythrocytosis, and she has a history of premature atrial and ventricular complexes, episodic tachycardia, migraine headaches, non-ischemic chest pain, and she is not a candidate for any type of palliative cardiac surgery. She is on Opsumit, ie, Macitentan, for her secondary pulmonary arterial hypertension and Eisenmenger's syndrome.

So here is hoping my next test/procedure on November 1st goes better.

After the final test is completed on November 1st, the results will be sent to Stanford University Hospital. Then I will meet with them in California for more testing to see if I qualify to be placed on the transplant list.