Hi -- great stories, well told.
. . .
I may be up for this surgery soon enough -- etiology of my HF is
unclear, but restrictive vs. constrictive process most likely, and
a repeat cardiac MRI is expected to confirm the need for this
procedure (pericardiectomy, stripping or the whole pericardium).
Since I've lost so much athletic function, I'm up for the surgical
approach, as the outlook from that is very good indeed. Right
now, it varies day by day, what exertion I can tolerate. I've
asked and been told repeatedly that I can do whatever I want
to -- that it's self-regulating (unless, I suppose, some foolishness
. . .
One of the reasons my outlook is good is that there are no strong
comorbidity factors working against me. Comorbidity is the
presence of one or more additional disorders (or diseases)
co-occurring with a primary disease or disorder, says Wikipedia.
. . .
I tried really hard to make a mad dash for a bus this morning, in
rather frigid weather (15 F, light wind, before the sun was very
high above morning's horizon) and the sequelae (so to speak)
was congestion in the chest that resolved in about
a half an
hour -- not too dissimilar to athletic exertion, pre-diagnosis.
The thing was, I had to stop to rest (or to slow my pace from a
mad dash to a pathetic thing not really near my usual pace and
stride) and the reason I say 'had to' was because it just was not
worth it to go another 15 feet from where I stood, at the harsh
pace -- having tried to do so several times in these past few
weeks. What happens is I feel unstable on my legs, if I push it
that much harder (and also, completely fatigued or winded, or
however one says this) -- there's no net benefit; I'm not closer
enough to the bus to get them to wait for me.
I'm trying to suggest, with my current test results, that there was
no real danger to me beyond being incredibly stupid -- ordinary
stupid wouldn't be a problem. I like to push it right to the edge,
when it comes to being stranded without a bus -- but in practice,
the body just isn't that stupid, and will refuse to let me pour on
The obvious, alternative solution is to pay closer attention to the
time my wrist watch reports, and to pad the expected time it takes
to walk to the bus stop with lots of extra time to complete the
exertion -- even if it means I'll be a bit colder for a bit longer than
if I timed it very closely, as in this morning.
. . .
Again, I'm trying to shed light on the possibilities -- and that, in my
specific case, I've been given no restrictions on aerobic exertions
such as walking or running or anything similar. I've mentioned to
the doctor, several things I thought were going to elicit a response
from him of 'do not do that again' but .. they never came. I keep
getting 'that is no problem' as the body-language response to my
various accounts of my activities of daily living.
The whole 'ask your doctor' thing applies strongly, here -- I have
asked and asked, and never been told to ease up. They know --
I can't push it as hard as my will would otherwise have me do,
because enough is enough; I don't want the goal quite that
urgently, since it's outside why I generally do those things (to
get a specific task done, or to achieve a specific level of fitness,
endurance, and so forth).
. . .
The body works much harder in conditions of heat or cold, than it
does at room temperature. It's important to make allowances
for that factor, if you must, for example, be out in the cold for
any length of time, under conditions of exertion.
A six to nine foot rise in pavement over, say, I don't know -- 120
feet horizontal run -- very mild change in elevation -- is very
challenging to me now! This from a fellow in his mid 50's, who
ascended 500 feet rises on bicycle, often, the years prior to
diagnosis (including just a few months prior).
The hospital corridor itself is one of my cardiologist's regular
inquiries -- how did it feel, walking to my appointment today?
It's a useful barometer and gives us a common reference point
to discuss. Today was better than two weeks ago, which was
(in turn) much worse than 2 months ago. I barely had to rest
today (since all that running for busses earlier in the day helped
to condition me) to transit this very long hallway connecting
two buildings on campus, to see the cardio. doc.
Two weeks ago, I had to stop to rest several times, in the very
same hallway. Then, I had a ride from a friend to the hospital;
this morning I bussed it and therefore had all the extra walking
(to anyone watching this morning, my mad dashes were what
most would call fast walking interspersed with incredibly slow
walking, or standing still to rest -- still, mad dash to me heh).
. . .
Liquids to 2L/day (2,000 cc) intake. Na+ (sodium) to 2,000 mg/day.
Not quite always adherent to sodium compliance -- sometimes to
Levothyroxine NA 0.1mg q.d.
Furosemide 80mg q.d.
Lisinopril 2.5mg q.d.
Aldactone 75 mg q.d. (up from 50 mg q.d.)
ASA (Asprin) 81 mg q.d.
The q.d. means once a day.
My dry wt. is about
194 lb. (88 kg) currently holding
near 217 lb. The rest is mostly ascites; some days there
is a bit of lower extremity edema (ankles first, then calves,
and asymmetrical -- the right leg shows these first). So
I'm currently with about
23 lb. of ascites fluid -- that's why
we went up on the Aldactone today.
. . .
One main function of my Cardiologist is to adjust my medication
regime, fine-tuning it to my current requirements. Since we have
a very good secured e-mail method to communicate, I'm able to
go 60 days at a time, occasionally, without an in-office visit, esp.
if the outcome of that visit is mostly to adjust meds, take a blood
sample (to watch the T4 and TSH levels, for the thyroid, among
other parameters) and, in my case, to monitor serum sodium
levels (which are either just within range, or below it -- my serum
sodium is labile and tends towards hyponatremia (low serum
sodium). Been to the E.R. twice for it.
. . .
The cardiac cath wasn't too bad; they kept me awake, mostly,
on some medicine that seemed to make me drop off every
eight seconds, but fairly lucid otherwise. Catheterizations in
general are somewhat invasive, by anyone's definition -- however,
a clean cardiac cath is most reassuring and I think well-worth
enduring, to get the test results obtained.
Now, during one of the caths I had (I also had a TJLB to bx the
liver) there was a vasovagal event (can't remember the other
word used) and my BP crashed. They pushed atropine and used
the Boy Scout first-aid method of elevating my ankles a bit, to
raise it (BP) up some. The crash itself seemed both pleasant
and helpless, and I thought, at the time, if this is death, it does
not seem too bad, and it's fascinating as well.
Only later did I read (online somewhere) that they don't lose
people in the cath lab -- one specialist said he'd done thousands
of them and hadn't lost one yet. I believe it. I did soil myself
during the TJLB (liver biopsy, another catheterization quite
similar to the cardiac cath) due to the fact, I think, that they did
not quite give me enough anesthetic (locally, at the entry site)
as it was deemed a bit sketchy to use much anesthetic (and
I wanted them to continue, so that we didn't have to do it
again soon! heh). I thought, well this is what it must be like
when they hang you in the old outlaw cowboy films -- it is
said you soil yourself. Seemed like the same deal (I like to
more or less amuse myself with such out-of-bounds thinking,
esp. if on the table in some lab for too long, heh).
I mean, come on, it's fun -- it's a new experience. It's fascinating.
I would not -- at all -- go for it, without necessity. It's not that
much fun! But -- it's really interesting, and they do keep you
awake. Love that part.
. . .
I'm glad folks in this thread mentioned the disturbing qualities of
what it's like for the family to see the patient, post-operatively
(or even during surgery? did anyone say?) This is really my only
strong metric: I don't want anyone I know seeing me like that.
Not for vanity -- for their sake.
I was very angry with my father, when he had a 5-way bypass,
my age, now -- all those years ago. I heard through the
family grapevine that my brother was deeply upset by what he
saw in hospital, of my father. My dad survived around 15 years
past his procedure. I didn't see him for months -- I did not want
to see 'that'. I suppose, a bit harsh of me. I think he understood.
At least, for a while.
So, I don't want family to see me with disturbing hospitalisms
and tubes and so forth, because the pros are the only ones
I'd let near my tubes, anyway! Haha. Seriously. I can weather
the 24-48 hours of sketchy business post-op. Why not?
. . .
My favorite thing to say, lately is: Instead of asking 'why me'
I choose to ask 'why not me?' This makes a huge difference in
my acceptance level. Also I feel like a bit of a celebrity, and I
get to show off (by being a great patient and compliance with
all directives). I trust the heck out of my doctor -- full confidence.
Let's just say he has a lot of backup, and rather excellent
. . .
I had a lot of points to speak to, as I carefully read this entire
thread, then wrote this (horribly long) missive in one draft.
I know what some of your fears are. I shake like a leaf, when
I'm on that table, be it for the CT-PA (CAT scan) or the cardiac
MRI or the two (or three?) catheterizations (cardiac, and liver
bx). So my body betrays me -- I just tell the technician I'm
a bit cold (usually the case, as well).
The hardest consent I gave was the first consent given for an
invasive (diagnostic paracentesis, to look at the fluid in the
ascites). I had to update my thinking, from childhood (when
I had negative experiences in hospital) .. right up to today.
It's amazing what I stayed away from, all these years. Of a
sudden, I'm oriented very differently towards a 'bring it on!'
mentality. Something changed; some of it, I'll be frank, is
external and real cultural changes in medicine, but the rest
is in me, learning to trust again.
I owe a lot of the trust I've been able to place, in very (very!)
resourceful and well-trained people I've had the pleasure to
know, as each takes their role in my diagnosis and treatment.
. . .
I'm going to dissent about
the whole mayo or cleveland clinic
thinking, here, and trust my locals (who have their own
brand name). Of course, I haven't been scheduled for any
surgery -- we aren't there yet (I do expect to be, soon).
It seems very unlikely to me there'd be any surgery done
that was not up to par, in the place I get care -- if they
for any reason thought it a risk to simply not have gotten
it done at (or in the auspices) of mayo or hopkins or upenn
or cleveland clinic et. al. then they'd say so up front.
I mean: they did a great job, except for the person who closed
snagged his fishhook on a rock? I don't think so! That's not
superior care. That's what we all end up getting -- the fishook
guy, who wants to close after surgery.
I just don't believe you can shore up against such events; they
are part of this landscape.
I find that the trust I lend to my procedure specialist persons is
helpful, to me -- I do not care if it is panacea or not.
How I feel determines if I'll fear or panic. I'm already in commit
mode -- I find the follow-through on that, valuable -- and I do
know that sometimes it's a fiction (that I don't have sufficient
reason to remain complacent, to the circumstance at-hand).
In for a penny, in for a pound.
. . .
Thanks for your camaraderie. It's nice. Sometimes, informative.
Always, a vocabulary-builder (inherently valuable).
55 M 6 ft
New England, USA
low cardiac output & index - idiopathic CHF
current ddx restrictive v constrictive cardiomyopathy
Post Edited (aside) : 3/24/2015 1:42:40 AM (GMT-6)