Do I have heart failure?

Day 599.

I have never officially been diagnosed with heart failure so far. This is even though my heart's pumping ability has been very much lower than normal and I suffered from fatigue since before my first event in 2022. At the time the cardiologist was hoping my condition would improve once the inflammation from cardiac sarcoidosis resolved.

My heart function did show a lot of improvement last year. I feel like this may have changed with some new an unusual symptoms.

JVD

After each visit to the emergency department , I read my discharge notes thoroughly. After my visit on December 8th I found a note about JVD+2. After a quick Internet search, I found JVD means jugular vein distension.

What the hell is jugular vein distension? Apparently it is when fluid (blood) backs up in your jugular vein, visible in your neck. It is a sign of right sided heart failure.

The doctor in the ED did ask me a few unexpected questions about shortness of breath and waking up gasping for air in the middle of the night. I did not know what that was all about at the time.

Pitting edema

An edema is swelling in your feet, legs, hands or arms. Pitting edema is when you can make an indention in the swollen area that doesn't pop back up immediately by pressing your finger on the area.

The first time I saw a pitting edema was in October last year when the rheumatology registrar assessed me after the dodgy PET scan. She pressed down, looked at me and asked "Do you see that?". I did see it.

Of course I tried to do it myself and see if I could recreate it. I was not able to create the pit for the next few months. I don't know if I was pushing on the wrong spots on my legs, or if it just disappeared.

Fast forward to the 9th of January and I inspect my legs again. Bam! Pitting edema everywhere on my shins.

The indentation lasts between 15 seconds -and a 1 minute. Maybe slightly more than a minute before it completely flattens out again. It is literally the weirdest thing I have ever seen. And it's affecting both my legs, not just one.

My GP and the cardiac nurse both think it might be worse due to heat, as it's summer here in New Zealand. It's been pretty consistent for the last few weeks, regardless of the weather.

Fatigue

I have been quite tired for a couple of months now. It doesn't feel the same as when the sarcoidosis flared. It's hard to describe the difference.

Either way, I have been having naps again. I have been resting a lot to try and recharge. I have been getting really tired after certain activities, like walking up a hill or going shopping.

I never feel like I have had enough sleep recently.

Shortness of breath

I have noticed being abnormally out of breath after certain activities.

There is a steep footpath close to my house. This path is kind of my barometer for my health in the last few years. If I have to stop multiple times walking up this path to catch my breath or if my leg muscles are really burning on this walk I know something is up.

I also feel out of breath walking up the stairs at my house. I'm talking really huffing and puffing after 1 flight. This is not consistent every day though. Not sure why.

Something new and concerning for me is feeling really short of breath when crossing a pedestrian crossing next to my work and walking up a gentle incline. I feel completely floored after about 50 meters or 55 yards.

Lying down I also feel pressure on my chest. Like someone is pushing down on the middle of my chest.

Ejection fraction

When I was first diagnosed with cardiac sarcoidosis I had a lot of inflammation in my heart and my heart function was severely impacted. In June 2022 my ejection fraction was 35%.

After some treatment it was 45% in May 2023.

The question is what is it now? I would need to have a new echo to see.

What happens next

I have seen my rheumatologist and my GP - both of them have made a referral to the cardiology team at the hospital and asked for an echo to be done. I have also emailed the cardiology nurse to ask if there is anything I should do while I wait for a cardiology appointment, and she has also emailed the cardiology team.

I have received an appointment for early February for an ECG and meeting with the cardiologist. Now we wait.