I FINALLY have my WHAT! Now we just need the WHY....

• by arent80
• 2023-04-13 16:55:07
• Coping
• 639 views
• 4 comments

Ladies & Gentleman I FINALLY have my what! After 3 years of countless doctor appointments, ER visits, testing, etc; we finally have the cause of my issues. Unfortunately it falls outside of the scope of this website but since I've shared my journey I will gladly share the outcome. I'll begin by saying its rare and it took countless hours of research, and one doctor at UCLA to finally believe me. 

The partial diagnosis came from the invasive cardiopulmonary exercise stress test (iCPET) I had back in December. To make this brief the test looks for 4 things. It looks for exercise induced pulmonary hypertension, exercise induced heart failure, pre-load failure and mitochondrial diseases. I did not have EI PH, I did not have EI HFpEF, I did not have mitochondrial disease but I DO have pre-load failure. Apparently when they measure the pressures inside your heart during the test, they are supposed to either remain normal, or increase slightly due to the demand from the exercise. My pressures went down and barely stayed normal. This means that something is obstructing the venous return to my heart. I've mentioned repeatedly to my cardiology team and hepatology team that its my NAFLD causing this. They did not believe me. I showed my UCLA doc this same literature that I found and he actually agrees with me. 

You see NAFLD can cause a HFpEF phenotype. I have ALL the signs. I had a heart cath in June 2022 that showed high output (10l/min) at rest, and a high cardiac index. The heart cath I had done in Dec 2022 during the iCPET was normal (7.5l/min). NAFLD CAN cause this. It also shows low BNP levels which I have. NAFLD can also show impaired cardiac output augmentation with activity which the iCPET showed as well. This is why not many have put this together. I did and I would not let anyone tell me different. Its not common, its not even in much literature, but it can still happen to people. I just happen to be that person. Here is the article if you wish to read more. Look at page 921 of the PDF- the chart at the top. I am referring to the first one which discusses the "Obstructive HFpEF phenotype". 

https://www.sciencedirect.com/science/article/pii/S2452302X21002606

With that said we are going to repeat the heart cath but this time through my groin. This way they check if there is an increase in resistance across hepatic sinusoids leading to impairment of venous return to the heart, thus limiting preload reserve. I know this is it! Anyhow I just wanted to share my update and I will of course update once again after the next heart cath results are in. I will not let anyone tell me this is all in my head. I knew something was wrong!! The only good thing is that with weight loss the chances of reversing the NAFLD are much better than if I had fibrosis or cirrhosis. My time is now! 

P.S- In February of 2022 I had two fibroscans done that showed I had cirrhosis. One done at the VA and another with my private insurance liver doctor. I then had an MRI of my liver and biopsy. Both showed the exact opposite. I just have fatty liver with no fibrosis or cirrhosis. This has been a ride from hell let me tell you!!! Thanks for reading this far if you made it :-)