Macho319 Posted July 7, 2023 Report Share Posted July 7, 2023 Hi everyone! I asked my doc at UCLA for a work from home note. He provided it to me yesterday. To my complete shock he stated my diagnosis as something I wasn't even aware of. I knew I had preload failure and I now knew its caused by my fatty liver (NAFLD). What I didn't know was that based on all my results they said I have HEART FAILURE WITH PRESERVED EJECTION FRACTION caused by NAFLD. I am completely in awe that they would put this on paper to provide to my employer before even telling their patient of their own diagnosis. I am FURIOUS, SCARED, UPSET and HEARTBROKEN (literally). They don't even know how to treat this. What does this mean for my future? I've been struggling daily and it only seems to be getting worse. I have a follow up 7/18 but that seems centuries away. I am so disgusted by all of this. Almost 4 years into this and I find out my diagnosis by reading a piece of paper. This is not ok! This is not ok. Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 7, 2023 Report Share Posted July 7, 2023 So sorry to hear this. I have had a cabg 4 bypass and my ejection fraction is actually good but was put on ranolazine to help with the heart. it's not a common drug but has been effective for me and a game changer. Just sharing what is working for me. Quote Link to comment Share on other sites More sharing options...
Macho319 Posted July 7, 2023 Author Report Share Posted July 7, 2023 @MikeO Thank you sir! Appreciate you always reaching out. Did I mention I'm only 43 years old? This has been happening for over 3 years now without a diagnosis. I could have been in a clinical trial, something!! I'm beyond upset right now. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 7, 2023 Report Share Posted July 7, 2023 So sorry. That is a lot to process. I am very surprised a diagnosis would be shared with your employer given privacy rules. I hope at your next appointment they can give you much more information and a treatment plan too. That is a long time to wait when you are anxious. Try to talk to people who can help you find calm and focus in this very difficult situation. The mind body connection can be powerful so anything you can do to reduce your anxiety at this time would be good. When I got a cancer diagnosis I was terrified. Meditation and gentle yoga was a help, as was talking to others who had been or were going through the same thing. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 7, 2023 Report Share Posted July 7, 2023 23 minutes ago, MomtoGiuliana said: The mind body connection can be powerful Yes, and I find that with dysautonomia the WHOLE Being is challenged, body - mind - and spirit. And we are so misunderstood that it is more challenging than an illness that can be explained. If that makes sense. Quote Link to comment Share on other sites More sharing options...
Macho319 Posted July 7, 2023 Author Report Share Posted July 7, 2023 @MomtoGiuliana I asked them to share with my employer because I've been with them 15 years. I thought by them seeing my preload failure they would approve working from home and understand why I'm moving out of state. You could imagine my surprise when I saw HFpEF as the diagnosis. I've been looking for support groups in my new town already and my insurance (United Healthcare) provides Apple Fitness + which has a lot of meditation and wellness features. I really plan to use it now. @Pistol you make total sense. Trust me 🙂 Quote Link to comment Share on other sites More sharing options...
Sushi Posted July 7, 2023 Report Share Posted July 7, 2023 @Macho319 Yes, truly an awful way of being given this diagnosis! I do know of someone with a diagnosis of HEART FAILURE WITH PRESERVED EJECTION FRACTION, but I don’t know what precipitated it. He has done a massive amount of research and consulted a number of experts. He is not on this forum, but rather a cardiac forum. If you would like to be in contact with him, I could let you know where to find him. Hold tight until you are able to get more information from your doctor. Quote Link to comment Share on other sites More sharing options...
Macho319 Posted July 7, 2023 Author Report Share Posted July 7, 2023 @Sushi yes that would be super. Please private message me the info if you wouldn't mind. I appreciate you sharing this with me. Thank you! Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 7, 2023 Report Share Posted July 7, 2023 well second look at this post. i feel bad you found out the hard way. Looking back i found out that i was in heart failure from a surgeon visit for a hernia just after a stress test. I totally sank to the floor. so i waited a couple of days and never heard from my then PCP so i called in to find out what was up. Dang nurse had some smart comment as to the surgeon should have not read the report but when she tried to find my PCP she had no luck finding her so the oncall doc was called and he did not want to mess around and put a referal into cardio. I went into failure again about a year or so and that's when i was put on ranolazine and it's very effective. helps with the preload (diastolic stretch of the heart) and rumour helps with the PNS tone as well as the microvascular. Not pitching a drug here but heart failure is beatable. Look up and not down. https://www.ecrjournal.com/articles/efficacy-ranolazine-improve-diastolic-performance-heart-failure-preserved-ejection Quote Link to comment Share on other sites More sharing options...
Macho319 Posted July 7, 2023 Author Report Share Posted July 7, 2023 @MikeO Thanks for the info. My diagnosis of HFpEF is not caused by diastolic dysfunction. I'll present to my doc but not sure he'll offer it because I don't have DD. They believe it to be a combination of NAFLD, subclinical portal hypertension, preload failure, insulin resistance and my weight. I'm not huge but I am overweight by at least 50lbs. I'm not sure with all of this going on I have much hope. I also believe the dysautonomia portion of this is caused by my NAFLD as well. There is a lot of research showing it can cause autonomic dysfunction as well. Ugh I'm so overwhelmed with this and I've known something has been wrong for almost 4 years now. I can't believe I'm just barely finding out now. Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 8, 2023 Report Share Posted July 8, 2023 @Macho319been reading more into NAFLD and the effects to the body. is very interesting. I already have some of the cardiometabolic risk factors, hypertension, dyslipidemia, CAD, Type 2 diabetes but only slightly overweight. Reading that about a 1/4 of the bodies blood (don't quote me on this) gets pushed threw the liver kinda makes sense to me that heavy or even light meals makes me symptomatic (very orthostatic) as a lot of blood is pooled to the GI so a dysfunctional liver is just another roadblock not leaving enough blood for the heart and pulmonary system (venous return). also makes sense that my HR goes tachycardia after the meals as the sympathetic portion of the NS is activated to try and maintain homeostasis. I do see my cardiologist next month and will bring this up. Not sure what medical discipline would even care about NAFLD sure my PCP won't but i also have upcoming appointments with my endo and a new scope with a gastro. Quote Link to comment Share on other sites More sharing options...
Macho319 Posted July 8, 2023 Author Report Share Posted July 8, 2023 @MikeO I've presented this to two different liver docs well over a year ago and both dismissed the idea. They dismiss it because all of my liver blood work is perfect, my liver biopsy was stage 0 with no fibrosis. My MRI fat quantification was only 3.9%. Less than 5% is normal. I presented this to my Cardiology Team as well but both dismissed it. It wasn't until UCLA that one young doc believed me. I even presented it to a senior cardiologist at UCLA who dismissed it because I didn't have cirrhosis. I am a man of faith and the doc who helped me has initials of JH. ***** HELPS! I believe it took a while but praying and my faith brought me to my answer. Anyhow that's my rant. Appreciate you guys being here w me through this. Thank you! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 9, 2023 Report Share Posted July 9, 2023 @Macho319, I’m sorry you had you find this out in such a horrible way. Presumably this means your doctors forgot to tell you? Wow. I am also about 50lb overweight (22kg). I’m 48. I had been thinking of starting a weight gain/loss support thread. Quote Link to comment Share on other sites More sharing options...
Macho319 Posted July 9, 2023 Author Report Share Posted July 9, 2023 @Sarah Teethe results from the last test said "Physiology is suggestive of a HFpEF phenotype with NAFLD". It says "suggestive". My doctor never definitively said I had any kind of heart failure. I only knew I had preload failure and we thought it could be caused by my liver. This was the first time I ever read anything that simply said I had HFpEF. I hope that makes sense. Either way I see him again on 7/18 and will get his "final" diagnosis before I move out of state. I also found an interesting article about drugs that may help HFpEF if indeed this is the diagnosis. I'll present this to him as well. I feel like I'm doing all the work here. It's rather exhausting. Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 9, 2023 Report Share Posted July 9, 2023 @Macho319please let the community the results. all i can say is preload is like blowing air into a balloon (venous refill) and afterload is the air rushing out. If you have heart failure you would know it as shortness of breath and fatigue is the most relevant symptom. I have and still have to deal with this. Hopefully your doc can give you some insight. Quote Link to comment Share on other sites More sharing options...
Macho319 Posted July 9, 2023 Author Report Share Posted July 9, 2023 @MikeOwell I have both fatigue and SOB. My SOB doesn't happen from riding a stationary bike or walking on a treadmill. It only seems to happen after eating and when exerting myself too much. It's more like exercise Intolerance. I become almost sick after doing things. Compression socks help but not always. It's been happening since late 2019 but has progressively gotten worse. Imagine having HF for almost 4 years and not knowing it? That's about to be me! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 10, 2023 Report Share Posted July 10, 2023 @Macho319, it makes sense. Seeing it in black and white is bound to be a shock. Yes, doing all the legwork is exhausting. I have been working hard on my situation for four or five years, and still have a long way to go, unless I run into that rare beast – a conscientious doctor. I hope your move goes well. Quote Link to comment Share on other sites More sharing options...
Macho319 Posted July 10, 2023 Author Report Share Posted July 10, 2023 @Sarah TeeThank you very much! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted July 11, 2023 Report Share Posted July 11, 2023 Hang in there Macho! I’ve seen lots of similar medical shenanigans! This is just MY PERSONAL OPINION, but I believe that most of my cardiovascular issues are related to dehydration and relieved with hydration. My heart feels so much better after a couple of gallons of water and salt! Keep us informed! Best wishes and good luck! Quote Link to comment Share on other sites More sharing options...
GasconAlex Posted July 17, 2023 Report Share Posted July 17, 2023 Just saw this A Liver Disease Gets a New Name, Diagnostic Criteria Nonalcoholic fatty liver disease will now be called metabolic dysfunction–associated steatotic liver disease, or MASLD So you get to change disease names, which always confuses everyone! Hope your next appointment goes well. Quote Link to comment Share on other sites More sharing options...
Macho319 Posted July 17, 2023 Author Report Share Posted July 17, 2023 @GasconAlexHey thanks for the info. I had no idea. Now let's see if the insurance companies will get even more confused. Delays delays delays! Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 17, 2023 Report Share Posted July 17, 2023 6 hours ago, GasconAlex said: Just saw this A Liver Disease Gets a New Name, Diagnostic Criteria Nonalcoholic fatty liver disease will now be called metabolic dysfunction–associated steatotic liver disease, or MASLD So you get to change disease names, which always confuses everyone! Hope your next appointment goes well. This article is very interesting. My Doc has been calling some of my issues a metabolic dysfunction. doubt it is from liver disease but this gives me more reason to look into it. Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 19, 2023 Report Share Posted July 19, 2023 Hi @Macho319just checking to see how your 7/18 doctor visit went. Quote Link to comment Share on other sites More sharing options...
Macho319 Posted July 19, 2023 Author Report Share Posted July 19, 2023 @MikeOThanks for checking in. It went ok. UCLA is stumped. They think it's the NAFLD causing the HFpEF and possibly the dysautonomia. They aren't sure how to treat it or even stage it. He does think I can possibly turn it around with weight loss, diet and exercise. I plan to really focus on all three after my move next week. I felt relieved to know I'm not going to die in 6 months and there is a chance that I can turn this all around. Appreciate you reaching out sir. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 20, 2023 Report Share Posted July 20, 2023 20 hours ago, Macho319 said: They think it's the NAFLD causing the HFpEF ? Now you got me confused. Quote Link to comment Share on other sites More sharing options...
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