Latest Update (Long Post SORRY!)
Hello everyone! It’s been a while since I’ve been on here so I wanted to provide a rather lengthy update regarding my current health status. These last three years since my heart issues were discovered have been disheartening to say the least. I’ve gone through so many tests, scans, hospital visits and still have no answers. I am getting close, but I am still in the testing phase with my new doctors. I started with the VA, then used my private insurance (Optum) and now I’m with the Cardiology & Electrophysiology Team at UCLA. I’ve been telling everyone the following for over two years now:
-When I stand up from lying in the supine position, my heart rate will jump 30+BPM. Sometimes it leaves me woozy or short of breath. Then it goes away.
-My legs and arms are weak. I am out of shape, but what I feel isn't normal. My legs burn with minimal activity (walking) and so do my arms (ex-brushing my hair). No PAD as far as I know from tests I've had done.
-Climbing stairs (two flights) makes me want to faint. I feel a sudden drop, then my entire body feels sick for 20-30 mins. I even feel this winded sensation in my chest that I would think is angina. The ONLY way I can climb stairs is with compression socks. Only then will I not experience these symptoms.
-Recently when I push myself during long walks the same feeling will happen. Not as bad but my legs go weak and I feel something is wrong so I stop immediately. I feel whatever is happening is getting worse.
-When I lay down quickly on my back I feel like I’m full of fluid in my chest. It does goes away after about 20 seconds or so but it makes me very SOB during those 20 seconds. I also notice it when I lay on my right or left but not as bad as when I lie down on my back. It feels more like pulsing in my chest rather than filling with fluid. I recently had an echo with a bubble study but no intracardiac shunts were found.
-Sometimes I also feel very short of breath in my chest when I sit to stand and walk around. It’s not like a huffing and puffing, it’s more like lack of oxygen. I just can't get enough air.
-The WORST symptom of all is I can no longer lay on my right or left side for long periods of time. My blood pressure drops to the point where I want to faint and I feel awful. To this day no one can explain why this is happening. I have been sleeping on my back for almost two years now.
Now with all of this said I have had just about every heart test under the sun. I even had a right & left heart Cath in June that was clean. I’ve explained all of this to UCLA and here are their latest thoughts. The UCLA EP believes I am having some kind of cardiac preload problem caused by something blocking the venous return to my heart. All of these issues only seem to happen with change in position or strenuous use of my legs. They are thinking possible restrictive cardiomyopathy. They want me to do another exercise stress test but with a right heart cath to see what happens during exercise. That’s only when my issues tend to present themselves. The UCLA Cardiologist agrees with the EP but also thinks something is compressing my IVC. I’m getting a CT Venogram of my chest and abdomen next week to see what it shows. All my other CT’s in the past have not shown any tumors or issues at all. Honestly I wonder if all of this is heart failure with preserved ejection fraction. I have symptoms of heart failure, preserved LVEF but no diastolic dysfunction. I wonder if they need to really take a look at that so called "diastolic dysfunction" because I know and have known that I'm tanking and tanking pretty quickly. No matter what I've done I haven't gotten any better, only worse.
Needless to say I am getting fed up, worn out and exhausted with all of these ongoing issues. All the testing, scanning, poking, prodding, being naked, etc. It has me mentally and emotionally exhausted! Oh, did I mention I was MISDIAGNOSED earlier this year with cirrhosis of the liver?! I had a fibroscan done by two different liver docs that showed I had cirrhosis. I ended up having a liver biopsy and liver MRI which both showed I only had fatty liver, nothing more. Anyhow for those that pray, please keep me in your prayers. I am hoping before Easter next year I get an answer. No one should have to go this long without one. If you made it this far, thank you for reading my rant. I appreciate your time.
You know you're wired when...
You read consumer reports before upgrading to a new model.
I feel so incredibly thankful that I can continue to live my life.