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I was a RN for 24 years.
I can no longer work.
I wear O2 24 hours-a-day, now.
And yes, I was a smoker.
I want to tell you my story, hopefully you can tell others, and help
others.
I am going to give you what ultimately will be PMH, slightly further back,
and do my best for brevity, being concise, and clear.
I had two bouts of pneumonia in 2001. Both times I was visibly cyanotic.
One of those times I was in ICU. I was checked, that second time, for HIV,
and came back negative.
However, I got seriously ill that New Years Eve, and was back in the
hospital in January of 2002.
I had, what we would later find out, was a gangrene gall bladder. It was
embedded in an enlarged liver. Liver enzymes were elevated. I also had
pancreatitis, and an ileus. As well as this, my CXRs were "hazy" - this
proved with a bronchoscopy to be a yeast infection in my lungs.
I was checked again for HIV - positive.
So, I was placed on anti-virals, and we did an open cholecystectomy.
From this point of being so seriously ill, I kept getting non-PCP
nosocomial pneumonias, and being re hospitalized, as frequently as five
times in a year and a half.
The episodes lessened, but never stayed to far from being a part of my
life. (Yes, I had both my flu and pneumonia vaccinations.)
This, despite a CD4 over 900, and often even over 1000, with a
non-detectable Viral Load.
"Full" immunity - supposedly.
The episodes continued, but infrequent.
I had two hospitalizations for cellulitis: (1) right forearm & 4th right
digit, and (2) abdominal abscess. I had one hospitalization for the sudden
onset of left sided hemiparesis. All relevant tests and scans were
negative for blockage, CVA, etc. However, I had an exceedingly low BP at
that time, and very frequent PVCs, both of which I'd never had before, and
not since then, either.
Otherwise, all hospitalizations were pneumonia related.
March of 2006, I got sick again. It wasn't so bad: mild exertional SOB,
and cough. The NP and I agreed on another round of PO antibiotics, which
we had learned, by now, if taken soon enough, could significantly help me
avoid another hospitalization.
I rallied somewhat, but continued with a persistent cough, and brief
episodes of exertional SOB.
April of 2006, on a Sunday night, I clocked in. I was pulled to work ER,
and sat down.
I said three words.
"I can't breathe."
My room air SaO2 was 75%.
Needless to say, I went from being staff to being patient.
I begged off on being hospitalized, again, believing "I can do this at
home." After all, I had a home nebulizer, and home O2. All I would not be
getting was CPT from RT, and IV antibiotics.
(Digression to explain the nebulizer and home O2.)
In January of 2005, after another hospitalization for pneumonia, that was
the first time my room air SaO2 did not go back up into the 90s, but
stayed, forever there on, in the 80s.
So, we did an overnight SaO2, which revealed sleep SaO2 in the 70s. Home
O2 for sleep was ordered. A sleep apnea study was done, and a CPAP was
prescribed. However, with O2 on, with the CPAP, my sleeping SaO2 was not
but in the 80s, and with O2 at 2 Liters per minute by nasal cannulla, by
itself, my sleeping SaO2 was in the 90s. Plus, I did not fair well in the
test with the CPAP. At a pressure of 16, I woke up gasping, in a panic to
get the mask off, screening "I can't breathe!"
I did not have the lung capacity to fight that much pressure and exhale.
This is why I already had O2 at home.
It was deemed a good idea to put me on a nebulizer treatment, with hopes
of minimizing the frequency of my hospitalizations. However, at that time,
we still had the "antique" way of paying first for your meds: buying
outright, dealing with a deductible, filing a claim, and then an 80/20
plan in which you got reimbursed your 80%. The drug they wanted to give me
was over $500.00 a month. (No, the name escapes me, so don't ask.) Thus, I
had an unused brand new nebulizer at home, ready to go.
(Digression over. Thanks for your patience.)
And so it was that with this equipment at the ready, at home, that I
begged off on being hospitalized, again, believing "I can do this at home."
In theory, it made sense.
Not.
By the end of that week, being far worse, I was wearing my oxygen 24 hours
a day, dragged myself in to the ER as a patient, with portable O2 at 5
Liters per minute, gasping "I can't breathe!" SaO2 was 75% range.
This time I came packed, bag, luggage, even my lap top. I was ready to be
admitted. (I had learned by now that having my lap top with me was a
speedy cure for the "cabin fever" of being stuck in one room.)
I turned seriously cyanotic twice, that weekend. One time, they had to
give me naloxone (Narcan). The other time, I woke up with a 100%
non-rebreather mask on me. That time, I'd somehow made it to the bathroom,
hallucinated, removed gown, telemetry, and IV line. (In my hallucination I
was arguing with my deceased father, who was standing there, and somehow,
it was all connected.)
I was shipped out from our rural hospital to the nearest regional medical
center, where I was diagnosed with COPD, and informed that I was now
oxygen dependent 24 hours-a-day.
Of course, there were tests, follow ups, and med changes.
I then faced having to live through the total 12 weeks of our "short term
disability" (sick leave) and then apply for "long term disability" with
our employer's insurance while applying for disability with Social
Security, as well.
I had two episodes there in of delay, confusion as to whom was requiring
what data, who had sent what, and had not, and such, during which I had
absolutely not one red cent coming in, at all. I was terrified I would
lose my home, my car, etc. But (literally) thank God , it all came through
just in time.
I am on COBRA. I have to be disabled 2 years to qualify for Medicare, etc.
That's $512.00 a month for basic: meds and hospitalization under the same
current plan my employer had, which as of January of 2006 became a $400.00
deductible, 80/20 plan, and a drug card (no deductible.) The drug card is
$10 generic, $25 preferred drugs, and $40 non-preferred drugs. The reason
for noting this fact will be evident, shortly. All in all, yes, that it a
good drug card plan.
My mortgage is $599.91. I never thought when I took that 20 year mortgage
out back in 1999 that it would ever be a struggle to pay it. After all, I
worked full time as a RN, and fully intended to do so. The house would be
paid off by the time I was 62, for retirement.
If I did not have HIV, I would have to pay that $512.00 myself, on top of
my monthly out-of-pocket for my meds, which has run as high as $270.00.
(This is on that 10/25/40 drug card plan! After a certain point, with
certain drugs, after you reach a certain quantity, it is no longer such a
great plan.)
Simply put, I could not make it, if I had to do that.
But due to having HIV, my HIV caseworker knew of a plan that would pay for
my COBRA. Now, all I lack is dental and vision coverage, but I can get
dental through the HIV clinic, and visual is, well, ok, for now. (I had an
exam, quickly, before my insurance converted to COBRA.)
Not wanting to mislead, I was offered the chance to keep visual and
dental, but I felt it unfair to ask the plan through the HIV clinic to pay
anything more than they must pay, especially since they already had a way
established to get me dental care.
The cost of disability, of letting yourself get into poor health, is
tremendous. But worse than the dollars anc cents is the emotional cost,
the adjustments. The limitations.
I can no longer cut my acre of grass. That has to be done for me. I can no
longer mop my kitchen floor. I pay a local teenager to do such things, for
me. Going through a "super" Walmart, or a mall, all that walking, with O2,
is next to impossible for me. I have to ride in the electric carts that
Walmart provides, if I'm going through the entire store.
I live in a rural area. It is 34 miles one way to my doctor and hospital,
45 miles one way to my pulmonologist, and 60 miles one way to my HIV
clinic and doctor. By the time I lug two (refillable on my oxygen
concentrator) portable oxygen tanks around with me (each lasts about 4
hours), do all that driving and "going," I am generally done in for the
rest of that day out of sheer exhaustion. Plus, if I push to hard, me
feet, ankle, and legs swell, and yes, I was checked for CHF (negative).
We, as nurses, have no idea, despite our historical complaints such as
"They don't pay me enough money to do this!" (how many times have I heard
this; how many times have I said this?), how much freedom and disposable
income we really have, until we no longer have it.
Now, when I go to the grocery store, I look at things entirely
differently. Health conscious, yes, but cost conscious, even more.
Crackers? Those are a luxury. Once in a rare while.
Hot dogs? OK.
Hot dog buns? Again, a luxury. A slice of bread from a loaf will suffice.
Cheese? OK, but not the delicious trendy kinds, that's for sure. Again, an
unneeded luxury.
My electricity account is listed as having a "special needs," due to the
O2 concentrator, should my power go out. What good this does me, I do not
know, because a letter from our electric cooperative tells me "...the
policy does not guarantee electric service during a natural disaster..."
and so forth. (I am advised by them to perpare myself by "...investing in
a generator for your medical equipment or by putting together a personal
emergency plan that includes evacuating to a location out of harm's way.")
But for whatever "registering" with them is, or is not, I must "renew"
this every 90 days, with them, and this requires my doctor's signature.
Life disabled has its challenges.
Finding handicapped parking close to the store taken by non-handicapped
vehicles.
Not all handicapped parking is near store entrances. Some are far away,
short sightedly assumed to only be deemed for "wheelchair" cases. (Take a
look in various parking lots, next time you are out. Some are quite the
distance from the door!)
Seeing people stare at you, as if you're some kind of ghastly freak show,
with your oxygen, especially if you're in an electric cart, like at
Walmart.
But I'm not sure which hurts more, being stared at, or being treated as if
you're invisible. I have seen both reactions.
People are comfortable with walkers, and wheelchairs, but seeing people in
electric carts, and/or with oxygen, tends to throw them.
I try to get out some. A dinner here or there. A movie once in a while.
Some time spent with friends. So I don't merely just exist here, in my
home. But I have to balance physical endurance issues with financial
issues, cost of gas, nothing being local to me, etc., and do such things
sparingly.
That said, I want to add, that I cannot count the number of times I've
been out with a friend, standing where it says "Wait to be seated," in a
restaurant, only to hear the man or woman with menus in their hands look
at me, with my oxygen on, and ask,"Smoking, or non-smoking?"
Right.
It still dumbfounds me, to this day.
Please, I don't feel sorry for myself. I have no such intent. I feel very
guilty for having let these things happen to myself, but I do not feel
sorry for myself.
I seriously regret many of the choices that I made which took me down
these paths.
I regret trusting a partner of 15 years who gave me ample reasons, over
and over, to distrust, and left me (on the day of our 15th anniversary)
six months before I was diagnosed with HIV. Whether this partner was the
cause directly, or not, I have no knowledge, I know this, if I'd heeded
common sense years before that, I would have been spared the HIV. That
much I do know.
I regret being weak, and smoking, and it wasn't even for "peer" pressure!
I was too old for that, in my 20s when I started.
Always painfully aware of my being over weight, I convolutedly theorized
that "if" I were to "let" myself smoke "for one year" that I would have
"something non-caloric to work with," and I could lose the weight, and
then stop smoking.
Convoluted, for sure.
I just want to pass this on, so you can tell others two things.
No one, absolutely no one at all, is worth risking HIV. If your person in
your life gives you any reason at all to doubt, heed it, immediately.
No reason, absolutely none at all, can justify inflicting the damage on
your lungs that smoking does. It is never worth it.
Note, all forms of tobacco are dangerous. Just differently so. All forms
raise your BP, cause vasoconstriction, stress your heart, and deprive you
of oxygen, except snuff and chewing tobacco, and even those kinds do those
other things (BP, vasoconstriction, stress the heart) to you.
It's not just cigarettes, although they are by far, the worse.
Please feel free to take this story, of a 24 year career as a RN halted at
age 49, to anyone you feel needs it.
Sincerely,
Robert, South Carolina
P.S. - I don't know if or when I'll think to get back to here. I'm not
accustomed to the Usenet Newsgroups. If you have something you want to say
specifically to me, I would respectfully request that you do it in an
email, so I will get it. Thank you.
P.P.S. - There is more. There is always that "more." My current
pulmonologist said "I don't like something that I saw on your last CT
scan" (done April 2006). I just had a repeat done this last Thursday,
December 7, 2006. I see him next week, to find out where we go, from here.
I know this, too, he said, "I am alarmed at how rapidly your disease has
progressed."
Again, it was not worth it, folks. It never was not one moment. |
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