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Reports of my demise are greatly exaggerated... Deja Vu

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11/8/2005 7:07 AM

Reports of my demise are greatly exaggerated... Deja Vu

In March 2004 I told the group here about my heart attack and subsequent angioplasty. For the past year I've had problems with coughing and breathing... My pulmonologist was having me scheduled for another CT Scan to look for blood clots in my lungs as an explanation for me being short of breath and low on blood oxygen.

It was about 4:00AM Halloween morning that I woke up with sharp pains over the right half of my chest so I called the night-time advice line at Kaiser Permanente and after answering the questions in her
script was told to hang up and call 911. I suggested driving myself to the hospital myself since I felt okay, but was told to have an ambulance bring me in... besides I have always gotten the best service entering the ER through the back door.

A preliminary chest X-ray showed congestion in my lungs which I believe was the klebsiella pneumonia that has been coming and going since March so they started me on strong antibiotics immediately. A bit later in the morning they sent me in for a CT Scan which did show a pulmonary embollism (blood clot) in my right lung so they began to treat me for that with blood thinners. I guess it was around 9:00AM that the Kaiser doctor at Mt. Diablo came by and gruffly asked me what I did to cause the blood clot... "Take long train ride? You take long train
ride?" As for any bedside manner it was all completely lacking.

It wasn't until 11:00AM that Kaiser decided to have me admitted to Mt. Diablo hospital (which has a standing agreement to treat their patients). When I was brought up to the "penthouse" single room all by myself on the 5th floor I asked the attendant how they knew I snored so loudly... whenever my brother was staying at Mt. Diablo he would always end up in this room after the first night since his snoring would keep any roommate up all night (he was eventually diagnosed as having sleep apnea and has been using a BiPAP machine to help him breath at night.) My mother was an early test subject for sleep apnea having participated in sleep studies at Stanford Medical Center in the 70's so this does run in my family.

In any case I was taken for an Echo cardiogram in the afternoon, and was told that it would take an hour. Hmmm... I just had one at Kaiser last month and it only took about 20 minutes. The machine at Mt. Diablo was much more expensive and it was fascinating (although slightly gross) to watch the scene inside each ventricle of my heart on the split screen. Most fascinating was the audio track... in one of the ventricles it sounded like a really cool drum beat- the type of drum beat on music I like, a beat that I have been calling "organic" because it sounds like a heart beat. Well, this was the first time I could actually hear that heart beat. As for some of the other ventricles, the beat was more like that whooshy phaser sound used in druggie music from the 70's that always makes me sea sick. No, thanks, I think I will pass...

After they bring me back to my room, I am reviewing my medications with the nurse to make sure that nothing has been overlooked and I learn that the antibiotics were discontinued and that the Kaiser
doctor at Mt. Diablo had forgotten to order my cholesteral medicine.

My first night in the hospital really freaked out the nurses because they kept coming in to tell me that I would stop breathing when I was asleep, so they hooked me up to a constant SET (blood oxygen) meter,which had an alarm that would go off when my blood oxygen level was below 90% for more than 120 seconds. Needless to say that alarm was beeping all night and the nurses would come in to wake me
up... "can't you hear that?" Nope- I could sleep through World War III and would have to read about in the next day's newspaper...

The Kaiser doctor comes in briefly the next morning and I ask about why I was taken off of the antibiotics. He said he talked to my pulmonologist at Kaiser W.C. and they both agreed that I didn't need antibiotics although I could feel the congestion in my lungs and could detect the very distinctive taste of bacterial pneumonia. I
decide to write down my concerns and let my nurse know before noon that I wanted to see the Kaiser doctor sometime that afternoon to discuss these concerns. It wasn't until 3:30 that she told me that he was very busy and wouldn't be able to see me until Wednesday and to put my questions down on paper (which I had already done that morning).

On Wednesday it was a different doctor who came by, an elderly German lady doctor with a very strong "take charge" attitude. I tell her
that I feel the congestion coming back into my lungs every time I lie down and tell her about the snoring incidents at night with the nurses coming in; she listens patiently although she doesn't override the first doctors orders. She did take care of one issue that was causing me pain and promptly ordered medication for it.

I'm a little bit hazy on the timing here, but the first Kaiser doctor also came by maybe Wednesday afternoon to tell me that I could leave if I wanted to, or stay another night... it was up to me. I stayed because I was hoping that something would be done about the congestion, figuring that as long as they were monitoring my vital signs something would show up after awhile. Sure enough on Wednesday night my temperature was 101.7 so nurses came in to take blood cultures, to help them figure out what was causing the fever. Still no antibiotics were prescribed.

In September my pulmonologist had said that I had already taken the strongest antibiotics available on an outpatient basis, and that I would have to be hospitalized to be able to get anything stronger so
I was really hoping that I would get the pneumonia cleared up while I was in the hospital.

On Thursday afternoon I was moved to a regular two-bed hospital room since the "penthouse" (isolation room) would be needed by someone who actually needed to be isolated. I told them I felt sorry for anyone that had to listen to me snore all night (my family is accustomed to getting single rooms during all of our hospital stays so we are spoiled).

Sure enough I snored up a storm Thursday night and it turned out that my roommate was a parametic whose mother has sleep apnea so he was quite sure that I had it. When the lady doctor came in Friday she asked me one of the three stock questions: "So how did you sleep last night?" I had slept the whole night without having a coughing fit so I told
her "pretty good, except for keeping everybody up with my snoring and my breath stopping." "Who told you that?" "The nurses and my roommate here." She stomps off to raise heck at the nursing station as I
remind her that it is different crew working at night. She is back in a few minutes: "according to your charts your blood oxygen has not dropped below 92% the whole time you have been here". I told her that the nurse the first night told me that my SET would drop to as low as 74% during the incidents of sleep apnea, and also that the assistants who would come by to record my bp, temp and SET would have me breathe deeply for a few minutes if the reading was low when they would walk in. (I would take the oxygen off to use the bathroom and sometimes forget to put it back on... and would be scolded by the nurses for that.

)

Within a few minutes I learn from one of the nurses that she did order a CPAP machine for me to use that night. As for the congestion, she had them take another chest X-ray Friday morning which showed the pneumonia in my right lung so she had promptly put me on an IV with antibiotics.

Hooray!

[to be continued]

Steve Ahola

11/8/2005 7:11 AM

Reports of my demise are greatly exaggerated... Part Two

[Continued from original post]

Having practically begged for the CPAP machine all week to help with
my breathing at night, the machine is finally delivered to my room
around 5:00PM, looking brand new and covered with plastic. A
technician from the Respiratory Department shows up around 6:30 and
he seemed to be more "hardware" than "software"- the guy who hooks it
up to the oxygen and room air taps on the wall. He hooks me up to the
machine and sets it to 8 cm, which is like being in a wind tunnel...
it was like going down the freeway at 75mph and hanging your head out
an open window with your mouth open. "Are you sure that is how it is
supposed to work???" He points at my SET meter which was running
around 96%, a definite improvement but how am I going to be able to
fall asleep with all of that noise and draft? "Can you turn it down
any lower than 8 cm?" He says that the doctor ordered 8 cm and when
he leaves it has to be set at 8 cm, but we tried lower settings so he
had the doctor paged and the instructions revised to 5 cm.

So I call my brother who has a portable BiPAP machine at home and I
describe my initial experiences which are freaking me out and is that
how it is supposed to be??? He says to just inhale through your nose
and breath normally so when they came back to hook me up for the
night I was trying to exhale through my mouth... which I later
learned was wrong- I was supposed to keep my mouth closed which would
greatly reduce the noise and air flow that was bothering me so much.

In any case I finally dozed off around 11:00AM with the machine on
and somehow got into a good breathing rhythm. At least until I was
woke up at 12:00 and handed my Combivent inhaler: the nurse aid
actually expected me to use the inhaler while hooked up to the BiPAP
machine creating the wind tunnel effect. So I go disconnect the hose
and open up the mask so that I can use the inhaler, make sure I'm not
taking any other medicines so I put the mask back on and reconnect
the hose, returning to my little wind tunnel. The nurse then took out
her stethoscope and proceded to listen to my lungs and heart,
although I can't imagine her hearing anything relevant with the BiPAP
machine hooked up again. Astonishing me even more, she then motions
me to move onto my side so that she can listen to my back (like she
was going to hear anything but the machine???)

I managed to get back to sleep at 1:00AM and slept very soundly until
4:00AM, when I awoke feeling more refreshed than I had been in years!
I wasn't able to get back to sleep, probably because I kept trying to
exhale through my mouth. I get put back on the IV antibiotics around
9:00AM and they are definitely clearing up the congestion in my lungs
so I'm feeling pretty good. But all day I am looking forward to going
on the BiPAP for another night of restful sleep (something which I
haven't been getting for 15+ years because of the sleep apnea). The
lady doctor comes by around 3:30PM on Saturday and I tell her how
great I feel with the antibiotics clearing up the congestion I've had
all week, and how restful it was sleeping with the BiPAP machine
hooked up. She comes by again Sunday afternoon to tell me that I'll
be getting another chest X-ray in the morning and I should be getting
released soon, but they do need to decide whether I will need oxygen
when I go home. She said that she doesn't work Mondays or Tuesdays
but that the original Kaiser doctor (the one with the atrocious
bedside manner) would be checking in on me in her absence. BTW it was
him that signed the order for the BiPAP machine to be set at 8 cm,
which all of the Respiratory Department personnel felt was too high,
especially for a novice like me.

Sunday night I asked to be hooked up to the machine at 10:00PM and
slept very soundly until 6:00AM. Although I had used the smaller mask
that covered only my nose the first two nights, I decided to try the
full face mask on Sunday, which I now think is best for beginners
like me. It's a bit weird not being able to speak very clearly, but
at least I didn't have to worry about keeping my mouth closed to
avoid the wind tunnel effect. I get brought down for my chest xray at
7:30AM and get hooked up to my IV antibiotics (levofloxacin) at
9:00AM.

It was shortly before 10:00AM that the original Kaiser doctor comes
in and the first thing he says is "I sent you home last week- why are
you still here???" Huh... doesn't he read my charts??? "We can send
you home today with a CPAP machine but you still need to be tested by
the sleep disorder department" which was fair enough, although my
roommate, the paramedic, said bluntly, "he has it!" having had to
listen to my snoring and apnea all night Thursday night.

The topper was "You don't have pneumonia so we will be stopping the
antibiotics". I thought that he was trying to make a joke about him
being so wrong about stoping my antibiotics last week but he was dead
serious. I asked him what showed up in the blood cultures taken
Wednesday night when I was running a 101.7 fever, or on my xrays on
Friday or today. Nothing at all (although I know from experience that
the lab work can take a full week to show some things). I then
explained that the antibiotics had cleared up the congestion I was
experiencing all week in the hospital and at home before I went in,
so I definitely wanted to continue them for the full treatment (the
good lady doctor had explained that I would continue with the pill
version at home).

The discharge planner came up to me while I was walking back and
forth in the hall around 10:30 and told me he had lined up a CPAP
machine for me. I then asked him what was decided about the oxygen
since the lady doctor had mentioned it on Sunday. He said he'd have
to check my telemetry reports, but that the policy was that if my
blood oxygen level had dropped below 87% I was supposed to be sent
home with oxygen. I see him briefly around 11:30AM while he was
talking to my roommate who was being discharged, too. Still working
on it, only when I check back later it seems like he was out to lunch
from 12:00 to 2:00PM. Final decision: no oxygen, undoubtably because
the nurses were not writing down the low readings that they had
observed.

As the nurse was having me sign the discharge papers, I had her look
at the prescriptions to see if antibiotic levofloxacin was there and
it wasn't so I had the nurses call down to the Kaiser doctor's office
to find out what was going on. It turns out that an antibiotic was on
my list of prescriptions that the nurse did not recognize but I do
not understand why they would want to switch me from an antibiotic
that was working so well for me. (I had already gone through 5
courses of antibiotics to get rid of this pneumonia since March, and
most of the time felt very little improvement for several days- if at
all.) Maybe someone out there who knows drugs can explain why the
LEVAQUIN� (levofloxacin) I was taking was replaced with Avelox�
(moxifloxacin hydrochloride). Yes, they do look like they belong to
the same basic family but why switch horses in the middle of the
stream, especially with levofloxacin working so well??? Incidentally
lab tests indicate that it was Klebsiella bacteria that was causing
the pneumonia, a particularly virulent strain I believe.

So I get home around 2:45PM and start calling around to get these
issues resolved, leaving a long and detailed message with my
pulmonologist (they do not usually pick up the line that the public
calls so that is the usual procedure). I was not given any paper work
for the CPAP machine so I didn't know who to call about its delivery
so I was waiting at home, hoping it would come. Although I needed to
bring my prescriptions in to be filled before the pharmacy closed. I
checked with my neighbor who would be home in case the machine was
delivered in my absence, and left a note on my door.

It was at the pharmacy that I learned that an antibiotic had been
included in my discharge papers all along, so I feel a bit foolish
having made such a scene about, but still it was NOT the same one I
had been taking. I need to pursue the issue tommorrow, as well as the
issue of oxygen. I am willing to sit in the pulmonary clinic with a
blood oxygen monitor on so that they will see exactly how low it does
go when I am just sitting.

No sense trying to get any restful sleep tonight without the promised
CPAP machine so I've just been typing up this report...

... respectively submitted by...

Steve Ahola

P.S. BTW I had requested a sleep apnea test earlier this year, had
just gone to the first class on October 25th and was scheduled to
take the test machine home on December 28th to evaluate the
situation. So this ordeal has moved me ahead two months... hooray! My
only question is why they hadn't noticed my snoring and possible
sleep apnea when I was in the hospital for my heart attack in March
2004... I guess I had only spent 3 nights there and one of them was
at a different hospital.

P.P.S. I have been having a lot of respiratory problems the past year
so I consider this latest ordeal to be a big step in the right
direction... maybe I can finally move on to better health now. I
personally feel that the pneumonia was brought on by my adverse
reactions to the statin drugs that they had me on for cholesterol; I
would try taking them for a month until I was too exhausted and then
stop them for a month on my own, and then the doctor would have me
try a different statin drug. In April, I was switched to Zetia, a non-
statin cholesterol drug which I have been able to take for 7 months
now (I only wish that they had offered it to me a year ago.

11/8/2005 7:24 AM
Pierre Debs	Glad you are alright. If you do, I hope you decide to stop...smoking that is. Best wishes, Pierre

11/8/2005 7:35 AM

Pierre said:

If you do, I hope you decide to stop...smoking that is.

I gave that up right after my heart attack last year... I've heard from other ex-smokers that my experiences aren't unusual: they have more respiratory problems than they had when they were still smoking. But after awhile it does eventually clear up. If you are lucky...

It listed "PE" & "COPD" on my discharge papers along with high blood pressure, but I am still unconvinced that it is emphysema... they were wrong about my father back in 1978, and treated him for emphysema although the problem proved to be something else.

Steve Ahola

11/8/2005 9:31 AM

Good!
I quite after 20 years and luckily, until now, I have had nothing but a massive health and fitness upswing. I am in better shape now than when I was playing football in HighSchool.

I haven�t coughed in 8 months and my lungs are clean according to the Xrays and all tests.

But, It doesn�t mean I won�t get Lung Cancer in ten years.

I wish you nothing but good health, and good....

Pierre

11/8/2005 7:39 AM

Re: Reports of my demise are greatly exaggerated... Part

Wild, wild guess here. Not a pleasant experience?

Another wild guess. Not all that many visitors outside of staff?

I've had a number of cardiac-related stays in hospital, one of which revolved around being split open like a Church's/Popeye's/Colonel's chicken about 5 years ago. One of the downsides of of health problems that require such a large team is that responsibility for being a mensch tends to get diffused - it's not anyone's job in particular. The number of people constantly passing through, all of whom I'm sure are decent, well-intentioned, and caring, but none of whom can invest too much time in YOU, as a person, is...well, substantial and dismaying at the same time. I went to visit a cousin last week who had his own angioplasty yesterday, and I was probably the only person who actually sat down and explained to him what was going to happen and what it would feel like. There is a huge literature looking at bystander intervention and so-called "diffusion of responsibility". The general outcome is that the more people are standing around or participating in some event, the less likely any single one of them will seize responsibility and step in to do what's needed. I think that's what happens when yu have huge teams working on you in hoispitals. Pity.

And sleep? Fuggedaboudit! One can probably get more sleep as a homeless person in an alleyway. If I strode into the room of one of the day nurses at 4AM and jabbed THEM in the arm, I'm sure I would receive some flack about them needing sleep and the strength it provides, so they can do their job. So how come patients can get woken up constantly, and yet we're supposed to be resting and mending? Something doesn't add up. One of these days, I'd like to see an international conference on how to help patients get more sleep...WITHOUT medication.

Once in a while you get an angel. Following bypass, I was having just a helluva time getting any sleep. Between my heart pounding like a metal band practising in the next room (you would be amazed at how much natural soundproofing and vibration-damping is normally built into your chest), the stomach cramps that I couldn't relieve with a satisfying dump (when your chest is held together by staples, you tend not to wanna work your thorax muscles too much), and the bells, the bells, the GODDAMN CONSTANT BELLS! ("DING! Nurse to room 1017. Nurse to room 1017"), well sleep was not in the cards. I wanted a heating pad to relax my gut so much, but safety regs prohibited it (Pee, sweat, and AC don't mix so good). Finally, I mentioned to the night nurse that if someone would only massage my feet....and he DID!

ahhhhhhhhhhh..........snore, snore, snore.

A speedy recovery to you my friend. One day, we'll sit down over a beverage and laugh about all the places where a man should NEVER be shaved.

In the meantime, if you have a net connection there, STAY AWAY FROM THE NAUGHTY SITES!! It uses too much oxygen.

11/8/2005 2:30 PM

Mark:

    Your experiences with "in shop" cardiac work are so much more extensive than mine... angioplasty is a procedure not a surgery, and I guess the main reason it is performed in a hospital, not an office, is the potential that something might go wrong and they want to be prepared for that. Especially with them working so close to such important plumbing...

    As for pain, I had none during my heart attack, and the chest pains with the pulmonary embolism were not worse in implication than in fact... it was what they possibly indicated was what was caused me enough concern to call the Kaiser line.

    During both hospital stays the most painful experience was after the angioplasty: to stop any bleeding they stuck something like a turnbuckle on my leg and cinched it down with a belt. I kept complaining about the pain to the nurse who gave me pain medication before finally discovering that the belt was twisted in the back and in fact causing me much unneeded pain.

    During this last stay the most painful incident was 6:30 Saturday morning when the B-team staff was having difficulty drawing blood from me... with me the blood will dribble off to nothing although it seemed to start off just fine. In any case when the blood would stop flowing the nurse (??? voodoo practitioner???) would start flicking the barrel of the needle thinking that it might help. (Hmmm... maybe that is a technique used in autopsies???)

    I don't know if this is standard procedure in hospitals these days but starting around 6:00AM they would have one group of nurses check temperature and BP for all of the patients, and a second team would follow them drawing blood. A third team might come next with some of your morning medicines, to free up your RN and CNA for more important duties. In any case I told my RN about the barrel flicking incident and suggested that if one of the blood drawers has problems with a particular patient that they really should move on to the next patient and let the RN or CNA draw the blood later. (I've had a lot of blood drawn in the past 19 months and it can be very tricky getting blood out of me... just like squeezing blood out of a turnip!)

My two experiences in the hospital have been basically very pleasant stays, with a few incidents that are fun to talk about. What has been unpleasant is the Catch 22 BS with the bureaucracy... grrr!!!

Steve Ahola

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