Breathing Through the Journey

Here we go! The moment we have all been waiting for… especially me…the results.

A few weeks ago, I shared on Facebook that I was heading to the doctor to check in on how things have been going. I didn’t post afterward because the appointment itself left us with more questions than answers.

What the doctor noticed during the visit wasn’t really matching what my echo results were showing. On top of that, my NT-proBNP results hadn’t even come in yet by the time I was sitting in the office.

So when we walked out of that appointment, we didn’t exactly feel as positive as we were hoping to.

The doctor ended up scheduling another test to get a much clearer picture of what was actually going on.

That test was the Right Heart Catheterization (RHC). And that’s where things started to make a lot more sense.

Understanding My Right Heart Catheterization Results

When the doctors diagnose and monitor pulmonary arterial hypertension (PAH), one of the most important tests they use is called a Right Heart Catheterization.

This test measures the pressure in the heart and lungs and helps doctors understand how hard the heart is working.

So, if you know me, you know science is not my forte. It was never a favorite class of mine and always struggled in it. However, that is quite the opposite for my husband. He loves it.

Whenever I get my results back, I am typically looking it up on ChatGPT to understand or handing the results to my husband and say:

“okay…explain this to me like I’m five.”

I even do that after my doctor explains it. When I say I don’t understand science, I really mean it.

So what is an RHC in plain English? It’s a procedure/test to diagnose and monitor pulmonary hypertension.

During the procedure:

• A thin catheter is inserted into a vein in the neck
• The catheter travels into the right side of the heart and the pulmonary arteries
• Doctors measure pressures and blood flow inside the heart and lungs

Those measurements tell doctors things like:

• how high the pressure is in the lung arteries
• how hard the heart is working
• how easily blood can flow through the lungs

Basically, it gives them a real-time look at how the heart and lungs are functioning together.

I recently got it done for the 2nd time—this time without being slightly sedated. First time, I was so nervous…I could not get over the fact they were going through my neck and needed something to relax me.

This time, I went without being sedated and realized that the procedure was much less dramatic than my brain imagined.

My Results: Before and After Treatment

When I was first diagnosed, my numbers showed severe pulmonary hypertension.

After starting treatment, my numbers began to improve.

Measurement	Before Treatment	After Treatment
NT-proBNP	2,247	116
Mean Pulmonary Artery Pressure	70 mmHg	57 mmHg
Pulmonary Vascular Resistance	17.9 WU	9 WU
Cardiac Output	3.2 L/min	4.82 L/min

You must be thinking (and myself), “what do these numbers mean?”

Well, it means this:

• Less strain on my heart.
  • My NT-proBNP dropped from over 2,200 to 116, which is actually within normal range.
• Blood is flowing through my lungs more easily.
  • Pulmonary vascular resistance dropped from 17.9 to 9, which means the blood vessels in my lungs aren’t fighting against the heart as much
• My heart is pumping more effectively
  • My cardiac output increased from about 3.2 liters per minute to 4.82 liters per minute.

Why does this all matter?

Pulmonary hypertension doesn’t disappear overnight, but seeing these numbers improve means the medicine is working and I am heading in the right direction.

So what does this mean for me now?

The good news is that my numbers are improving. The treatment is working and my heart is under much less strain than it was when I was first diagnosed.

But I’m not quite where I need to be yet.

Because of that, my doctors are adding what many people in the pulmonary hypertension world call the “miracle drug”.

We originally thought we might be starting this medication sometime in the fall, so the fact we’re moving forward with it now actually means we’re ahead of the game.

And I’m hoping this is another step toward getting healthy again.

Toward being able to extract my eggs and start taking the next steps toward having a child.

Toward eventually getting off this damn pump and switching to the oral version instead.

This journey still has a long road ahead.

But for the first time in a while, the numbers—and the plan—are starting to point in the right direction.