"You're allergic to yourself."

Not going to be easy catching up, but I'll give it my best shot.  I spend most of my days in bed, sleeping, or waiting for tylenol to kick in and 'possibly' help with the pain.  Weakness is now stronger than my willpower, and fatigue is my constant companion.  I don't have much energy to type, or even sit at the computer long enough to.  So I'll try and get with it...

Appetite is all but gone.  Still not feeling actual hunger but increased weakness and headache that tells me I should probably eat something.  I usually have yogurt in the mornings so I can take medication, and I find myself full after just a few bites.  I've no idea why this is, why diminished appetite and early satiety is back and worse than ever.  I just know that it is.

Had my every-six-months echo on my heart about a week ago and just got results back.  I'm looking for another cardiologist at UAB, because the one I have now doesn't really discuss anything with me, especially changes.  I'm not okay with that given my family history and the other issues with my heart.

In six months time, since my last echo, my aortic valve has developed stenosis (none was found last time with echo or cath).  It had "trace" regurgitation last time, and now it's to the 'mild' level. Doesn't sound like a big deal until you realize that even this small change happened in 6 months time.  It's a watch-and-wait situation like my mitral valve issues.  Yay. Not.

You guys may remember I had a heart cath a few months ago.  This is when they found the mitral valve regurgitation had progressed.  The report had no mention of stenosis, but if there were any it may not have been worth noting perhaps (just guessing here).

So given changes, and the recommendation to now have echoes every 6 months instead of yearly, I would think the dr. would be a bit more, I don't know, forthcoming to at least explain to me about the changes and what they do or do not mean.  I sure wish Dr. Dewan was still my cardiologist... but he made a career move out of state.  Dammit.

Also went to an allergist.  Now this was the most surprising thing of all---after testing me for everything under the sun.. I'm not allergic to anything. lol  All the sneezing and sinus issues are merely seasonal changes and not from allergy.  Sounds like the same thing, but they're not at all.  This appointment was 3 hours long and with a LOT of discussion.  Doctor isn't just an allergist, he's also an immunologist.  After talking to him about everything that's been going on, the AIH etc, symptoms, etc... he spoke to me about the possibility of a Myositis problem (sounds familiar, huh?), OR Lupus.

He said, and I will quote him: "You're allergic to yourself."  We laughed about this a little, but he says that a lot of my nose and skin issues, that almost appear as allergy reactions, are most likely an autoimmune reaction.  The pink cheeks, that aren't normal for me, he says may be an indicator of Lupus as well.  Apparently, according to him and other research, Lupus is something that isn't really found during lab work via AI antibodies etc., although SOME people with lupus have that show up.  Many, most in fact, who have it don't have that show up in their blood until the disease is years progressed.

Oh, as an aside--I got a breathing treatment while at the allergist's office.  I was wheezing like crazy and the treatment helped!  I had a somewhat wet cough for a few hours, but dang... that was awesome! Not from allergy though, the wheezing and dry cough I have.  Lung issues.. yeah, there's still that.  Anyway, back to the point....

Now I have to see another rheumatologist, and an endocrinologist (because of prednisone withdrawal), and well.. that just sucks.  SO many doctor appointments.  I'm absolutely worn out.

Well, time I left this blog and attempt short entries on the others.  Honestly, my muscles are aching terribly just from typing.  When the hell will this ever get better?  :(

The Big [E]Vent...

Well, such is the way things go for me and blogging, I spent a large portion of time and energy posting on Where Fireflies Dream.  Many times I end up there first, which means the unloading happens in it's full-blown glory before I get here.  Just check the links (side of this page) that says Alter Egos.  Those are my other blogs, as I've mentioned before...

So the big [e]vent happened and I'm left spent, exhausted, and wondering if I really accomplished anything at all.  I'm also wondering how many people think I should be doing the big 'vent' to the person who needs to hear it.  Well, I assure you, I have been quite clear on how I feel, discussing the problems I have with the way things are, and stating clearly that my needs as a person simply aren't being met in any way, shape or form.  And oh honey, those words fell on completely deaf ears.  People are often emotionally lazy, and T... is one of those people.  He won't put any effort into anything, so... flipping the switch to autopilot and sitting on one's own emotional ass will get you nowhere with me.  I will simply find a way to live my life... without you.

This is the beginning of that very thing.

Hey, I know some guys don't do this, and even the ones who do don't all do it to the same degree.  But emotional laziness never got anyone anywhere.  I mean, seriously... if you expect one person to do all the work, you're going to be in serious trouble in the end.

50/50.  But in my case it's more like 20/80.  And I'm freaking exhausted.  Okay, T.. take the damn wheel or you'll be flying alone!  And chronic remorse isn't going to fix this.

Okay, so I'm finding my way along and, although I struggle at times, I'm still plugging forward.  I will find a way.  I will find my life.  And I WILL find me again.  It's just a matter of time.  Once the anemia is resolved, and once I get an "All clear" from my cardiologist on the whole Grade 2 Diastolic Dysfunction thing... I'm going to put everything I have into getting healthy again.  Iron supplementation may make it difficult, and restoring iron stores takes a really long time.  But I can do this.  I MUST do this.  I WILL DO THIS.

Watch and see.

Damn thing won't stop beeping

Day 2 with the heart monitor, and it just won't stop beeping.  Okay, so there are pauses, but there have been SO many... I didn't get this many when I had SVT, AFib, and atrial flutter.  Weird.  For those who don't know how an event monitor works, you basically wear a portable EKG that comes with a monitor that records everything your heart does, and a wireless communicator that sends the information to the monitoring center.  Yes, you're actually monitored the entire time, 24/7, by real people.  This is not the same thing as a Holter monitor where you have the recorder only.

So when an 'event' occurs, one that you know of, you hit the button at the top of the monitor to mark the EKG, then the communicator asks what happened (palpitations, chest pain, shortness of breath, etc.), then it asks what you were doing when it happened (nothing, walking, exercising, etc.).  And whether or not you FEEL what happens, 'they' know..and it's recorded anyway and uploaded to the monitoring center's software.

When I speak of 'beeps,' there are actually 2 that happen during the event.  The first beep says something is happening and being recorded (blinking green light goes solid)...which takes approximately a minute, and the second beep says that event has been marked and is being uploaded (alternating blinking green and blue lights).  Nothing on the communicator asks you to state what happened or what you were doing because, if you didn't push the button, you're not aware anything happened anyway.

Basically, it beeps often when I'm standing, and it beeps nearly every time I bend over to pick something up off the floor.  It's also been beeping while laying down (like last night), and also when I'm just sitting and talking to someone.  This is not the way this usually goes for me, so I don't know what it's picking up.  Possibly PVCs, which most people have and aren't often aware of.  Thing is... I've never had a monitor go off as much as I have the past 24 hrs.  I have to wear this for 4 days, and it's procedure as a one year follow-up after a cardiac ablation.  It's meant to make sure episodes of the arrhythmia(s) aren't happening and determines wether or not the ablation(s) was/were successful or not.

Now, I have iron deficiency anemia, and it's NOT being treated.  So that could possibly explain anything my heart is doing.  Or it could be something related to the Grade II Diastolic Dysfunction I've recently be diagnosed with.  Not sure.  Honestly, I first thought I had a defective monitor, but the monitoring center ALWAYS knows if something's wrong and calls to recalibrate or decide if they need to send another monitor.  So far, no calls.  This is good in that nothing serious is happening. ;)

I know.  Blah blah blah.  I will get to more personal matters later on.

PART 1: While I was looking the other way...

After focusing on the liver issues and anemia and how to resolve them, I didn't take into account that anything else could be causing or contributing to my symptoms.  After my ablations last year for AFib, Atrial Flutter, and Supraventricular Tachycardia (SVT), I figured that was going to be pretty much it for heart issues.  I've had Mitral Valve Prolapse since I was a kid, and yes... that valve began to leak and is at the mild-moderate stage at this time.  I'm supposed to get a yearly ultrasound to keep an eye on things, and up till this past week it was just something I had to do.  I'm about 6 months late on this past one because the clinic I usually go to has lost 3 doctors to career move or changes, and this means my appointment got pushed months out due to the shortage of doctors.  I didn't really think much of it and decided to see if I could get my yearly ultrasound done when I went to see my EP about getting the Watchman Device implanted in my heart... at his suggestion.  I won't discuss that particular device right now because I've previously posted about it.  And I've yet to see if I can even have the procedure done in lieu of recent ultrasound findings.

Saturday (22nd) I received the ultrasound report in the mail.  I certainly didn't expect to see what was on the sheet, to tell you the truth.

I know the MVP can get worse in some people, and mine is slowly getting worse.  I also know that during my last two ultrasounds I discovered that my aortic valve was also leaking.  Well, it is what it is, and this is why I get a yearly ultrasound.

So I'm home alone and looking over the report that arrived in the mail on Saturday, and I see several things listed that surprised me...and I've listed the highlights below.  I will get to what it all means in a moment...

Left Ventricle
Diastolic filling demonstrates a pseudonormal pattern (new).

Left Atrium
Left Atrium Chamber is mildly dilated (new).

Right Atrium
Right Atrium Chamber is mildly dilated (new).

Aortic Valve
The Aortic Valve is mildly calcified.  There is mild aortic regurgitation (I already knew about this).

Mitral Valve
The Mitral Valve leaflet is mildly thickened.  There is mild-moderate mitral regurgitation (knew about this as well, with the exception of the valve now being thickened).

Tricuspid Valve
Trace tricuspid regurgitation (new).

Pulmonary Valve
There is trivial pulmonic regurgitation (new.  "Trivial" refers to the amount, but there is nothing trivial about this).

Diagnosis

Grade II/IV diastolic dysfunction.  This is heart failure.

Okay, so... there it is.  Now what?  Basically, Grade I is pretty much reversible and doesn't require treatment.  Grades II, on the other hand, requires treatment in hopes it won't progress quickly.  I have to wait to find out WHAT that treatment will be.  For some, this occurred due to high BP, but for me.. it was most likely a combination of years of having SVT, MVP, and then Afib and atrial flutter.  It's not like they can treat my HBP because I don't have that.  I may still end up on a beta blocker (hate those) to slow my HR down so it fills properly and doesn't regurgitate back into my lungs.

So yeah, there were a few new things that I learned about from this last ultrasound, none of them good.  Grade II is usually symptomatic, and I now wonder how much of the awful symptoms I've had are due to DD and not anemia or liver issues.  Something interesting that I've discovered, however, is that at night the pressure can cause RUQ pain in the liver.

Well, what do I do with this information?  Simply put, I need to get my shit together.  Exercise (with Dr's approval) is necessary, diet changes (low-fat and low-sodium), etc.  The usual.  My question is--- how the hell do I exercise when I now deal with exercise intolerance?  I guess I will have to find out.

I've been in a sort of daze since I received the news, and while I'm not really 'scared,' parts of me think I should be, because fear is often motivating in these circumstances.  Still, I'm not sure how I feel about this.  And as for T... he's indifferent, doesn't talk about it, and goes through his entire day as if I told him I stubbed my toe.  And it's not the 'I'm going to think positive' type of indifference, either.  He really has this reaction to just about everything, unless it's about him specifically.  This has been an ongoing problem of late, and it's now become more critical than ever to figure out what it all means to me.  Doesn't really matter what his indifference means to him, because he just claims he's not.  Denial isn't a river in Egypt.

So the question remains... how do I feel about this?  The answer is.. I really don't know.

It's not easy to sort through something like this without talking about it.  But who do I talk to?  No clue.  No clue at all.