New Member- New Diagnosis- Rare Cause

Hi everyone!

This is my first post. I’ll try to keep it short and sweet, but I’m pretty overwhelmed. For the past 3.5 years I’ve been trying to find out why I feel like I’ll faint after I climb stairs. I get winded in my chest, my legs burn like crazy and I feel presyncope. I also have been feeling weaker and weaker which I explained was exercise intolerance or a lack of cardiac output. Since my echo’s, stress echo’s, CT scans, BNP levels were normal, they didn’t suspect anything more. The VA even gave me a Cardiopulmonary Exercise Test which said there was a cardiac abnormality, they labeled me “DECONDITIONED”. The only other thing was my first heart cath showed high cardiac output at rest. My Cardiologist didn’t think much of it. So with the exception of a heart biopsy and MRI, I’ve had all the tests. I’ve even had lung, brain, liver and cancer screenings done. I started with the VA and got no where. I kept begging the that something was wrong, but I guess they thought I had anxiety or I was the little boy who cried wolf.

I tried using my insurance to see Cardiologists but that got me no where. They said I had a big work up and not much more they could offer. Luckily my outside insurance PCP felt bad for me and got me a referral to UCLA for suspected POTS. I didn’t argue, I would just explain when I got there. I met with an Electrophysiologist and explained my symptoms. Immediately he said the word “PRELOAD”. He then referred me to a more advanced Cardiologist for an Invasive Cardiopulmonary Exercise Test (iCPET). I completed the test and it revealed Preload Failure. Instead of pressures increasing during exercise they barely increased and at some points went down. We now had my what, we just needed the why.

I’ve had NAFLD for a while and I read some information about NAFLD causing an obstructive HFpEF phenotype. I presented it to the Cardiologist who performed the iCPET and he actually agreed with me. This phenotype presents with normal BNP, high to normal cardiac output and impaired cardiac output augmentation with activity. I had all of these so we undertook another heart cath, but this time measured pressures across my liver. It revealed subclinical portal hypertension. So this new discovery paired with my other issues my current diagnosis is “Obstructive HFpEF phenotype caused by NAFLD”. I finally have my why even thought its an awful WHY!

The other issue is they have no idea how to treat it. It’s been 3.5 years and I’ve become much worse. I have no good days anymore and each day seems to be a struggle. I notice I will avoid doing things and I don’t move around as much. I have been on disability since July of last year and my job of almost 15 years just let me go because they didn’t have an remote work. Did I mention I am only 43? This all started when I was 39. I am so disgusted with the doctors who did not listen to me. I felt like just because I wasn’t the MD, how could I possibly know what I was talking about. The UCLA doc told me I earned an MD in his eyes and I taught him something. With that said, I’m scared, I don’t feel good daily and the prognosis as we all know is pretty grim. So that’s my first rant on this site. Any input, thoughts or ideas are more than welcomed. If you made it this far, thank you for listening.