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.

~Alejandro


8 Comments

You describe the Odyssey very well...

by crustyg - 2022-11-18 05:56:49

One of the cautionary tales at Med School and afterwards related to the dangers of (pre-MRI and pre-whole-body-CT scans) 'hunt the tumour'.  Some bright spark suggests that Patient <x> has an undisclosed neoplasm and launches the patient into a never ending series of tests, biopsies etc., some of which go wrong and lead the patient towards a near-death experience - or worse.  It's a lot less dangerous now... but it costs a lot of time+money.

When we last discussed this, I had thought that investigating venous return from your lower body was #1 on the investigations (and I see that much better docs than I ever was also seem to think that's a sensible thing to check for) - and, finally, it's next week.  I'm not sure that there's an easy way to explain the clear relationship between posture and symptoms that you describe, other than something mechanical affecting great vein return flow.

But you'll know soon enough - now is not the time to give up: I imagine this post was a cry of frustration to help you get through it.

Best wishes.

Good to hear from you

by Gemita - 2022-11-18 07:51:48

Alejandro, I will write later.  Yes please don't give up.  We want an answer too.

My immediate thought after reading your update is that your doctors are now focussing on how your heart is actually functioning rather than continuing to look for any organic disease as a cause for your continuing symptoms.  I am not surprised that there have been misdiagnoses and that you are exhausted from all your investigations that have so far led nowhere, except they have clearly ruled out many potential causes.  

I have attached a nursing link on - Preload and Afterload: a Cardiac Output review - which I found to be a helpful, simple explanation.  I hope you will too

https://simplenursing.com/preload-and-afterload/

Fed up and worn out.

by Selwyn - 2022-11-18 12:16:12

Even better than an answer is that you get to feeling better.  We are all hoping that your health improves. You would think that with so much medical interest in your health it can't be long until some bright person comes up with an answer and further help for you. 

I did wonder reading your posting whether your adrenal gland function had been tested Fainting can occur with low blood pressure due to Addision's Disease ( hypoadrenalism), or indeed whether your thyroid function was OK. 

You should definately tell your doctors that you are fed up and worn out. They may be able to help.   Some tender loving care is needed.  Knowing what has been a positivie boost to wellbeing previously, perhaps this is time for a little pampering?  I hope so. 

Experience shows it is best to take it a day at a time and wake up thankful. Thinking ahead  ( and looking at internet sites) is likely to worsen anxiety and increase exhaustion ( the two go together).  The worst things possible are within the mind. Reality is often much simpler. Certainly planning your treats and pampering is a lot more helpful than grave digging.

I am off to see my grandchildren shortly, one whom I am not seen as he was born during the Covid travel lockdown. I am certainly looking forward to this. 

With best wishes and prayers for an improvement in your health.

 

Life is still precious

by Gemita - 2022-11-18 15:28:13

Alejandro,

It sounds as though you need a period of rest to recharge your batteries and to assess where to go from here, but I think it is reasonable first to go down the investigation route for a little while longer to give your new doctors time to follow up on their concerns.  

Of course it has to be said that your difficulties started around the time of your implant so it is  always possible I suppose that the implant procedure itself might have caused trauma somewhere which has not been found.  A CT venogram of the chest and abdomen is a start and perhaps any partial venous obstruction, which may be exacerbated by different positions, or during exercise, will be picked up? 

It sounds to me that unless you are in a certain position at the time of your investigation however, the problem could be missed, so try to challenge yourself and find a position known to trigger your symptoms.  A right sided heart catheterisation which measures pressure in your right atrium, right ventricle and pulmonary artery will be an accurate measurement of cardiac output, although I see you have already had this investigation.  Next time however, they will  "challenge" you effectively I hope, so perhaps they will gain further insight?   Right heart catheterization can help exclude pulmonary hypertension, constrictive pericardial disease, restrictive cardiomyopathy and also heart failure with a preserved ejection fraction.  They used this test on my husband to confirm his pulmonary hypertension.  He also has a confirmed diagnosis of right sided heart failure unfortunately but he is doing incredibly well now that we have got his blood pressure under control and he is on the right medication.

Alejandro, of course I will pray for you to find that elusive cause for your symptoms so that you can start to live your life again.  Getting a diagnosis will bring such relief and renewed energy.  When you know what you are dealing with, you will be better able to control your symptoms or even able perhaps to find a cure.  In the meantime, as always I wish you and your wife all the very best.  You are both extremely lucky to have found each other, so never forget that and try to be happy.  I hope you can find peace of mind which is so essential to your well being

Thank you all!

by arentas80 - 2022-11-18 19:55:16

CrustyG- thank you for your words sir! Appreciate them.

Selwyn- thank you for your sweet message. You are correct. All I want to know is the issue and I will take whatever measures necessary to make myself better. I write in my gratitude journal daily :-)

Gemita- thank you for always being so positive and providing great information. I was doing some digging around and the reason I thought HFpEF is because quite possibly my issues hide behind exercise. I found a really great article that explains pretty clearly how this can happen. It states that they tested those with no significant coronary disease (ME), normal brain natriuretic peptide assay (ME), and normal resting hemodynamics (ME) mean pulmonary artery pressure <25 mm Hg (MINE WAS 24mm) and pulmonary capillary wedge pressure [PCWP] <15 mm Hg (MINE WAS 11MM). It goes on to say we hypothesized that patients with HFpEF may present in a milder or “early” phase of disease characterized by exertional symptoms in the absence of volume overload. This group may not meet current diagnostic criteria based on resting hemodynamics alone, developing hemodynamic derangements characteristic of HF only during the stress of exercise.

Today for example I walked from the car, to inside a building (1000 feet max) and I was so winded in my chest I thought I was going to have a heart attack. I felt weak, felt thumping palpitations, my mind felt out of it and it truly feels like this desperate scream for more oxygen in my chest. I don't know how else to explain it. I also forgot my compression socks so I know that could have made this experience worse for me. It's all so random and since it doesn't happen all the time it makes no real sense. Anyhow here is the link to the above article that I discuss for your reference. Thank you as always for your time and wisdom. 

https://www.ahajournals.org/doi/full/10.1161/CIRCHEARTFAILURE.109.930701

 

Heart Failure with preserved Ejection Fraction?

by Gemita - 2022-11-19 05:30:37

Thank you Alejandro for the helpful link.  I have picked up on a few important areas.  Of course this can be a problem with so many of our regular routine tests;  they may not always be targeted to suit the individual being tested or adequately challenge the patient at the time of testing, at least this has been my experience over many years dealing with an autonomic condition.  

Of course our bodies are incredibly good at hiding a health condition and protecting us for long periods before disease may become apparent.   Our symptoms alone may be the only clue of a problem, but our symptoms can often frustratingly be intermittent or even non existent on occasions making a diagnosis extremely difficult.  I can see how anxiety disorders may flourish and anxiety is often the diagnosis given on exclusion of other causes.  

Arrhythmia sufferers like myself for instance certainly have to challenge their doctors sometimes to obtain a confirmed diagnosis for paroxysmal atrial fibrillation instead of paroxysmal benign ectopics due to anxiety!  It took a few years and several syncope episodes before I received a firm diagnosis and before I was referred for autonomic testing for my swallowing problems which can intermittently lead to syncope and arrhythmias too.

I found the following observation from the link you provided particularly interesting:

Quote:  "A recent study found that although patients with clinically diagnosed HFpEF had severe subjective and objective exercise intolerance, mean N-terminal pro hormone BNP levels were similar to healthy controls, leading the authors to question the diagnosis of HF.   However, BNP levels more accurately reflect wall stress than filling pressures, and both wall stress and BNP levels are known to be lower in HFpEF compared to HF with reduced EF.   Echo-Doppler and tissue-Doppler measures, such as E/e′ ratio, have been shown to serve as reasonable non invasive measures of LV filling pressures and diastolic dysfunction.  Indeed, the E/e′ ratio served as a key decision point in a recent diagnostic algorithm proposed for HFpEF.  Similarly, Tschope and colleagues found that N-terminal pro hormone BNP levels accurately identify the presence of diastolic dysfunction in patients with normal EF.  However, in each of these studies, measurements were performed only at rest, and if filling pressures (and hence wall stress) are only intermittently elevated (eg, during exercise), it follows that these non invasive markers of congestion may appear normal or near normal when measured in clinic.

The natural history of early HFpEF remains unclear, but we speculate that it may represent an important group in which interventions may be targeted with higher yield to prevent or delay the transition to advanced HFpEF where changes in the material properties of the ventricle and vasculature may be irreversible.”  Unquote

I would respectfully suggest that you discuss the “possibility” of intermittent HFpEF symptoms with your doctors Alejandro if you have not already done so and not to self diagnose based on this very interesting article alone.  I know most good doctors will usually arrive at a diagnosis by really listening to the patient and it seems your new team is doing just that and is willing to take that extra step to challenge you further to arrive at a plausible conclusion.

Of course all of these tests are meaningless unless a presumed diagnosis can be made and a treatment plan started

Thank you Gemita!

by arentas80 - 2022-11-19 12:51:42

I have a follow up 12/8 with my UCLA Cardiologist and will present these issues then. What I've also found is that my legs have a lot to do with my symptoms. For example when I don't wear compression socks I have trouble walking up an incline, doing squats or walking up stairs. I am able to complete the incline, squats or stairs it's the delayed reaction that troubles me. Soon after I begin the heart rate recovery I begin to experience symptoms. I feel the chest pain, the SOB, severe muscle fatigue, palpitations, sometimes sudden weakness, feelings of presyncope etc. I've explained this to the VA and my OPTUM docs and they look at me like I'm speaking a foreign language.

I know what I've felt for a while now and I'm determined to get an answer. I'll keep everyone updated. Thank you for all who read my post and to those who responded. God bless you all! 

Good to hear from you!

by islandgirl - 2022-11-23 23:26:47

I have heart failure with preserved EF.  I have cardiomyopathy as well.  Reasons are most likely genetic.  I have normal BP so I cannot take heart failure meds as it drops my BP.

I had barostim surgery in mid October to hopefully help me.  They are optimistic with a lot of data being gathered, as it was approved first in Europe.  

Keep fighting.  Sounds like you're going to the right place.  Stay persistent and advocate for yourself.

 

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