Macho319

@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!

@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.

@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!

@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 🙂

@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.

@MaineDoug thanks for sharing this. I will definitely check this out! You guys are all great!! @Asmaa hope you're doing better. We are all rooting for you!!

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.

@MaineDoug I understand everything you say. I'm relocating to Columbus Ohio next month from LA. I plan to get evaluated by the Cleveland Clinic and Ohio State. I need a fresh set of eyes. I passed so many tests with flying colors that docs here treat me like the little boy who cried wolf. It wasn't until one YOUNG doc at UCLA that all of this changed. I still need to see if I have SFN, I need more autonomic testing, etc. This has been 4 years from h***. I'm sure everyone here can relate.

@Sushi Hi there! Yes I've worn many zio patches, biotel monitors and others. I don't have arrhythmias. I will have the occasional NSVT for maybe 5 beats but that's about it. This feels like a lack of cardiac output like my body just can't do anymore. This is what preload failure can do but I didn't expect it to be so severe.

@MomtoGiuliana I have a follow up on 7/18 which seems decades away. I feel like caffeine and digestion play a part in this. All of this happened about 60 mins after I had breakfast and 3 cups of coffee. I've been drinking so much water since mid-afternoon, took off my compression socks and I'm able to function. Go figure lol

@MikeOI'll be ok I hope. I just appreciate you reaching out and offering suggestions. Reading these really do help!

What a past two days. I keep having such horrible symptoms and I have no idea how to even explain them. I try doing things and I have to stop. I feel like my body just can't do it. Now I'm having chest tightness and burning in the back of my throat. I feel this deep blown out sensation in my chest that leaves me sort of winded. I feel so bad I even took a nitroglycerin, but it did nothing which I expected. I have no structural heart disease nor any blockages. It makes me not want to move. I feel like I'm going to have a heart attack it's that bad. I just don't understand why this keeps happening. I can't do anything and did I mention I'm MOVING out of state in 23 days? U-Haul is coming on the 12th to drop off the pods. I'm going to have to hire someone to pack for us because I CAN'T do it!! I'm so stressed out I want to lose my mind. And the worst part is yes I have a diagnosis but is this really it? You just deal with it and that's all she wrote? Ugh!!! Sorry I just needed to let that out.

@Asmaa You have to keep going on. Life will always have it's ups and downs, but as long as we are alive then we have to enjoy every minute. I know it can be EXTREMELY difficult and most people don't understand us, but you have to keep trying. Listen to some good music, watch a funny movie, just zone out for a bit and think good thoughts! Always think good thoughts 🙂

The Autonomic Nervous System to me is the least understood system in the entire medical profession. I think doctors would have to re-write a lot of research and restructure a lot of education once they understood it. I just don't think they want to address it.

Hi everyone! I was wondering how those with exercise Intolerance describe their symptoms. I feel like I'm having a hard time getting my point across to the docs. This is what I say. I feel like my body can't do anymore. It's this internal sensation of like a lack of cardiac output which feels like extreme exhaustion. It feels like my body doesn't get what it needs and I become winded and struggle to get sufficient air in my lungs. My lungs feel no matter how many times I bring in air it's not enough. Then eventually it subsides with rest. It's so hard to describe accurately. Obviously with preload failure it means the output to your body is reduced, but I'm wondering how others describe it. Thanks in advance for sharing your descriptions. Appreciate all of you 🙂

Thank you ALL for your comments. This site is wonderful. I'm happy to be a part of our little community.

Hi everyone! I'm home. What a long day it was. I got to the table to begin the procedure and all of a sudden a nurse says stop, we have a STEMI. So I was wheeled back to my waiting area and took a nap. My 9:30am ended up starting at 1pm. Anyhow the student was RIGHT! After taking multiple measurements across the hepatic veins, it showed subclinical portal hypertension. This is not the best news, but it goes to show what a little self-educating and self-advocating can do. I'm so sick of all these docs with their egos who think just because I am not a doctor, how could I possibly know. Well guess what, this guy taught everyone involved at UCLA today! I also plan to take all the data back to every doc who turned me away and give them a piece of my mind. Yes I'm being petty, but you all know what we've gone through. These docs need to start taking us more seriously. I can't believe it took almost 4 years to get here. So what's the plan moving forward you may ask? Well that's still up for debate. Weight loss, dietary changes and exercise are on the forefront for sure. I'm just relieved that I proved to all these top docs that this really was happening to me. It wasn't in my head. The doctor told me today that I taught him something and I've earned an MD title. He also said now he suspects many more of his patients to have similar. That made me happy because if this can help others, then my work is done. Ok that's my rant for today. Hope everyone is doing well.

@Pistol THANK YOU for sharing this great information. I will definitely check it out because my short term disability ends next month. AGAIN I appreciate this.

@MaineDoug WOW! That's quite the story. Thank you for sharing. This is why I question if I am able to return or not. My situation isn't where yours is, but that also doesn't mean I'm ok either. I was a Sales Manager for a real estate office in Los Angeles. I LOVED my job! I am a natural teacher, mentor and coach. The issue came when I was out of the office. I would go on carvans with my agents to tour $17 million dollar homes in Hidden Hills and I could barely get around the house let alone go upstairs. The stairs ALWAYS triggered an episode for me. I would feel a sudden dropping sensation in my body, my legs would be on fire, I would immediately feel presyncope and palpitations for 30 mins or more. The Agents would ask me why I wasn't going upstairs and I would make excuses. I've been on disability now since last July, but since my year is almost up I'm weighing my options. Things haven't gotten better this past year, they've become worse. Anyhow that's my rant. Appreciate all of you!

@Sarah Tee Thank you! No matter how many times I've done things like this I still feel nervous. I pray this will be the last time.

@MikeO Thank you sir! I'll keep everyone updated with the results. This is almost 4 years in the making.

Hi everyone! I have another procedure this week at UCLA. It's been delayed 4 times now. Sigh.... I believe this will show what is causing my dysautonomia. All docs think my liver isn't the cause but I believe it is. Here is MY diagnosis ahead of the test I have this week. I am having a right heart Cath and liver pressure gradient measurements done to see if the liver is causing my preload failure. I think it's going to show that I have either portal hypertension or subclinical portal hypertension. I think my Non-Alcoholic Fatty Liver (NAFLD) is causing my autonomic dysfunction and preload failure. Below you will find two articles discussing AD and Preload Failure both as a result of NAFLD. Lets see if the student instructs the teacher. This was also my idea to have this procedure done, not theirs. When I explained my rationale they agreed and here we are. Fingers crossed 🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏 NAFLD as a cause for Preload Failure https://www.ahajournals.org/doi/10.1161/CIRCHEARTFAILURE.120.007308 NAFLD as a cause of Autonomic Dysfunction https://karger.com/ddi/article-abstract/28/1/214/95475/Systemic-Symptoms-in-Non-Alcoholic-Fatty-Liver?redirectedFrom=fulltext

@MomtoGiuliana I am seeing the Cardiologist at UCLA who diagnosed my Preload Failure on 6/28. I plan to ask him what he can do for me. I almost feel bad asking because after reading some experiences on here I feel like mine aren't as bad. They are still extremely difficult to deal with though. This is all still surreal to me and I'm trying to handle it the best way I can. Thank you for taking time to respond. I am very grateful. @RecipeForDisaster You make perfect sense. Thank you for taking time to respond. I appreciate it.

Hi everyone! I'm moving soon and haven't decided if I'm going to work or not. Has anyone's doctor either put them on disability or wrote a doctor's note so your job would let you work from home? I'm trying to weigh my options based on my daily symptoms and working from home seems to be my only option. I've been with my job 15 years but not sure what they will say if I ask to work from home without a doctor's note. Any thoughts or ideas? As always thank you for your time and responses.

Hi Mikayla! I noticed side effects right away that for me were worse than my norm. I took the medicine for maybe two weeks and then stopped. I didn't experience any side effects from stopping abruptly either. As you know everyone is different. I would suggest keeping track of how you feel, keep your doctor informed and if it makes you feel worse, stop. If you decide to stop just run it by your doc to see if they suggest tapering off or stopping cold turkey. I'm sorry you're feeling bad and I hope these meds can help you. Take care!