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

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 :-)


4 Comments

glad to hear you are finally on your way to

by new to pace.... - 2023-04-13 18:34:37

Glad you presisted to get your answers. Am can now start your healing process.

new to pace

Glad you are closing in on a long waited diagnosis!

by Rch - 2023-04-13 20:01:29

Hi

I am sorry to read your history of a long painful journey with a myriad of very disabling symptoms. I'm glad your providers  have finally zeroed in on a diagnosis and now awaiting for a femoral vein cath to look for any resistance to flow through the hepatic sinusoids. Regardless of what the findings are, lifestyle changes would be your resolution for this year! A good balanced diet, avoidance of drugs like acetaminophen etc and good hydration will go a long way! The only question I have is, did the biopsy report show any inflammation around the sinusoids? 

Hello Rch

by arent80 - 2023-04-13 20:10:09

Thanks for your thoughtful comment and words of wisdom. I reviewed the liver biopsy results and here they are below. I assume you have experience in the hepatology field? 

DIAGNOSIS:
- MILD STEATOSIS WITH MILD PERIPORTAL INFLAMMATION.                                                    
- NO SIGNIFICANT FIBROSIS.
***Electronically Signed Out on 05/25/2022 *
Surgical Pathology Report

COMMENTS:
The core biopsy shows adequate portal triads for evaluation. The bile ducts are intact. There are rare
periportal chronic inflammatory cells, with minimal lobulitis. The hepatocytes demonstrate patchy macrovesicular steatosis, involving approximately 10-15% of the hepatocytes. Bile pigment is noted in few hepatocytes.
Iron stain shows no iron deposition (block A1). There is no significant periportalor perisinusoidal fibrosis, confirmed by trichrome and reticulin stains (block Al).

Grade 1/ mild steatosis, Inflammation grade 1, fibrosis stage 0.

Nonalcoholic fatty liver disease

by Rch - 2023-04-14 00:40:33

I am not a Hepatologist. Just educated myself reading with the link you provided! 😃

Glad you have only minimal inflammation! Hope the evaluation of the venous system will yield the diagnosis that's amenable for treatment! I wish you well!

 

 

 

You know you're wired when...

Your heart beats like a teenager in love.

Member Quotes

I love this new part of me, and very, very thankful that this technology exists and I know that it's all only going to get better over time.