Friday, September 30, 2011

G update

G was having dialysis this morning in his room. When you are in ICU they
do they dialysis there.

He said he threw up last night, the meatloaf, but otherwise feeling OK.

They will move him back to the floor when there is a room available.
Hopefully this afternoon.

The fistula surgery will be done on monday, so he will be in the hospital
all weekend, on the heparin drip.

His head (actually his neck) looks swollen, guess it could be from the surgery,
but also concerned it's from the blockages. Not only does he have blockages
in the arteries which take blood to the head, he has blockages in the veins which
allow for return of blood from the head.

I guess they will put him back on the heparin this afternoon. I will go back
up around noon, to check on how things are progressing.

One must really check everything. I overheard a long discussion (so much for
patient privacy) between a man and a social worker regarding the man's wife.
He said when she was moved the last time from the hospital to the skilled nursing
facility, they did not start her again on her coumadin, and then she got blood
clots in her legs. He described what they had been through before with getting
the coumadin adjusted, but then, apparently the Dr. or whomever just didn't order
it when she went back to the nursing home. Because of this, she ended back
up in the hospital.

So, note to everyone. Know what meds you or your loved one should be taking,
and make sure they get on the list when you are in the hospital or other care
facility, where you don't control your own meds.

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Thursday, September 29, 2011

G out of surgery

The surgery on the carotid went OK. They didn't do the other procedures today,
said they would be done tomorrow or Sat. Not sure why.

G should be back in his room by now. The nurse was to phone me, but haven't heard
so will go back to the hospital to see what's going on.

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Tuesday, September 27, 2011

Surgeries on Thursday

All of G's surgeries/procedures will be done on Thursday.

The carotid artery is first. It's the only "real"surgery.

Then the laproscopic look inside his abdomen, and the surgery for
the new fistula in his right arm.

So, fingers crossed.

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Monday, September 26, 2011

Update on G

G just phoned. The results on the neck (carotid artery) for the left is not good.
Very blocked (didn't say how much)

They will talk to the vascular surgeon about doing something, which is what we
knew needed to be done, it's just that (in our opinion) the VA was waiting see
if G would die first...lol.

As we already knew, because of this blockage G is very high risk for another stroke,
which is why his blood needs to be thin.

They will also do vein mapping on his right arm, so see about a fistula. This is his
last site for a possible fistula, so fingers crossed.

No mention of the other thing in the stomach...guess we will find out more tomorrow.
At least we feel he is in the right place to get these things done.


he is B

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Sunday, September 25, 2011

Day 2 in hospital

G has settled in. They had to change the IV already, but he said this time it didn't hurt,
even though the same nurse put it in. They have an "IV" team, so they should be
pretty good.

Tomorrow G is schedule for doppler on the carotid arteries in the neck, vein mapping of his left arm (where the fistula is, but no veins to/from it for dialysis), and dialysis
(which is done in the hospital). He will be busy, so I won't go to see him until the evening.

I think G is enjoying ordering his food, and he says it has for the most part been very
good.

So, things are going well, all things considered.

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G in Hospital

Well, G is in the hospital. When we got there they did not have him in the computer
to be admitted today.

So frustrating that one must know everything which should be done. Next time I will
know to confirm with the hospital that they have the admit order. Thank goodness
the Dr. who was his admitting was on call this weekend.

So, he got admitted. Had to tell so many people why he was there. It is just so frustrating,
thank goodness we know everything.

G is not happy being in the hospital. Actually he wanted to go home and come back later..
lol.

The good news is the nurse called him "Mr. Compliant", because he is so good with his diet
and meds, and it was confirmed when they tested for his blood sugar (A1c), which came back great. He hates to get stuck to test for his blood sugar, but I guess they didn't believe him when he said it was under control.

So, tomorrow is another day. I hope G gets to sleep tonight. He always has trouble sleeping
when he has an IV in.

I will have trouble sleeping, as it is very weird not having G home.

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Friday, September 23, 2011

Getting ready

Yesterday G and I went to the VA to get copies of reports for some of his previous procedures.

I have learned that having them sent directly does not always ensure they will end up
in one's medical file. Futhermore, I realized it would be a good idea to read them ourselves,
so we know what was said. The reports are rather long, and as most Drs. are always in
a big hurry, they seldom read the reports.

I did learn (or maybe I just forgot) that G has blockages on both sides of his neck. The
left carotid artery is 80-90% blocked, and the right side is around 70% blocked.
When we were in the Dr. office I mentioned about the left side, and one of the interns
asked if they had planned surgery, and of course all I could do was shrug my shoulders.

I am quite sure that the VA surgeons don't do this procedure, which means they
would have to do it on a "fee based", pay an outside surgeon, and they don't like
to do that. So none of the VA Drs. have wanted to stick out their neck to request this.

Oh, on another note. G now has both Part B medicare, and a supplemental plan,
so he doesn't need to go to the VA for anything.

Now all we have to do is find out what Drs. he should be going to for what.

Of course, our first concern is to get the access for dialysis.

As for the blockages, it would probably be best to try out the new drugs on the
market before having surgery. Having the carotid artery cleared out will
probably be somewhat of a high risk for stroke surgery for G. Also, because
he has coronary artery disease, it might just get clotted up again.

More about that later. I need to do some research.

So G will go in the hospital Sat. morning. We got a "checklist" in the mail from
the hospital of the things he needs to bring.

Last night G and I went out for a really nice dinner. We don't often go out to
eat, so when we do it's a nice treat.

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Saturday, September 17, 2011

Sleep Study for G - part II

A letter came in the mail last week saying to call to make an appointment for
a sleep study.

This confused me, as G had a sleep study a few weeks ago, but we didn't yet
have the results. I was afraid there was an error and they needed to repeat
it the study.

The true story is they needed to fit him for a continuous positive airway pressure (CPAP) machine. I know a couple of guys who have one, so was not surprised
by this.

Initially they said there wasn't an appointment available until end of Nov., but then said
they had a cancellation for that night. So we went. That was on Thursday.

Anyway, G should get his machine in a few weeks. He really needs it, as
sometimes I have to poke him to make sure he is still alive because I
can't be sure he is breathing. And he doesn't get good sleep because
of his sleep apnea.

One more thing checked off the list.

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We Have Lift Off!

Well, not quite yet, but finally things are coming in to place.

G called the Coumadin clinic to reschedule his appointment, which was
to be when he will be in the hospital. The person he spoke with
asked for the name of the Dr. and the contact for the surgery.

Apparently she phoned the nurse (the one who hasn't got it together
to do what should have been arranged), and apparently convinced
her (and maybe the Dr.) that G should be admitted to the hospital
3 days before surgery to migrate from coumadin to heparin.

For those that care, coumadin is oral, and stays in your system
for 3 days. Heparin is by IV, and will leave your system must
faster. So the can theoretically take him off of the heparin just
a few hours before surgery, which will minimize the risk of a stroke.
We hope.

There is still a risk. It scares me because any time they start
pushing things through his arteries and veins there is a chance
a clot can break away.

But at least now they are doing what they can to minimize the
risk of a stroke from his blood getting too thick for 3 days
before the surgery.

So G will go in the hospital a week from today, and be there until the
following Wed., at least.

While he is out of the house I will be able to continue some of my
rehab work. I hate to do it when he is around because of all the
dust a fumes, and at least now the weather is cooperating.

So I will be busy. G thinks the hospital he is going to has
wireless. I hope so, so he can be entertained on the computer.

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Wednesday, September 14, 2011

I just don't get it

So the surgeon's nurse phoned yesterday and said "The Dr. wants G off of the coumadin for 3 days before the surgery".

And I said "OK, do they want to put him in the hospital and migrate him over to heparin, like the VA has done, because he tends to have TIA's when his blood gets too thick?" (which I told her about the last 2 times we discussed this).

Long pause..."I will have to discuss that with the Dr. on Thursday. We certainly
don't want G having another stroke".

Good grief Charlie Brown. I guess this nurse can only handle one item at a time.
Too bad she hasn't figured out how to make out a check list.

It just amazes me. I work with business people all the time who manage to accomplish so many more complicated tasks, and lives aren't at stake.

Scary, scary.

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Sunday, September 11, 2011

Off Topic - Do People Change?

I recall a conversation with one of my friends regarding how grateful her
father was after his health began to fail. He was always extremely nice to
everyone, and always appreciative of what was done for him. But, he
had always been a very kind, appreciative person.


Recently I stopped to chat with a neighbor. He is an old guy, WWII VET, in
the Navy on a ship in the China Sea.

I thought about inviting him over for dinner, thinking it would be fun to
hear his stories. Then, after some chatting, it became apparent he was
quite bigoted, and perhaps a little unpleasant.

One little voice in my head keeps saying "be nice to him, and he might surprise
you", and then the other voice says "but people don't really change, and do
really want this guy coming around?".

It's not just that old people are cranky in general, they were probably
cranky when they were young.

Maybe some people are unpleasant because they were treated badly. This
old Vet says he ended up in this town because of a "mean woman", or something
to that effect. Then I just found out that his wife was kind of mean,
so I don't know if it was her he was referring to, or some other woman.

I realize now how lucky I was to have a Mom who was very grateful,
and pleasant.

One hears about unpleasant and ungrateful parents, and I guess this
old guy probably fits in that category.

Maybe I will take him some cookies, just to see if he will start
being nice.

Probably not, he will probably just complain about the kind of
cookies I bring.

We shall see.

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Friday, September 9, 2011

Nurse phoned

The nurse just phoned to reschedule the vein mapping, and they also want to
do the surgery/test for the abdomen to see how much scar tissue there is.
She said they might also do the surgery to connect the fistula, depending
on what they see from the vein mapping.

They want G of Plavix for 5 days before. Funny, the VA was never concerned
about him being on Plavix...makes one wonder.

Then I had a long discussion with the nurse about the blood thinner, and
explained why G had the stroke. She will talk with the Dr., and they
might admit G a day or so before the procedure to migrate him from
coumadin to heparin, because heparin is IV and can be reversed much more
quickly.

I didn't mention it now, but will do some research. I recall reading
there is some sort of cap/filter that can be used to protect the brain
from blood clots during procedures. I really think this is what they
need to do.

Anyway, right now the procedures are scheduled for the 27th and 28th of Sept.
They will do blood work on the 26th.

Fingers crossed.

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Tuesday, September 6, 2011

Vein mapping scheduled , then cancelled...

Early this afternoon the hospital phoned to say G was scheduled Thursday
to do vein mapping on his left arm. The surgeon thinks he can graft
something in to the fistula which is there, but wants to check out
the veins first.

Then, a couple of hours later the nurse phoned saying they cancelled
this procedure, because she isn't sure if the Dr. wants G off of
Plavix for 5 days prior to the procedure, for fear the stent
will clot.

I informed her the stent is in his arm not in his heart..anyway,
long story short she will try to get the Dr. to sit down
with her with the chart, and confirm what he wants done.

This has taught me that I must be sure everything gets
clarified when we are with the Dr., and I make notes
about everything, and check, and recheck.

I heard the Dr. say one thing, (that he wanted to check the
Plavix level, as Plavix doesn't work on 20% of the population),
and I didn't think this was at all related to the procedure.

But the nurse understood he wanted this done the day before the
procedure.

So frustrating.

The nurse assured she would call Thursday afternoon or Friday
to advise when they will do the veinn mapping.

On a good note, G got official notice from Medicare that he has
Part B, effective Sept. 1. They had to waive their normal
"you can only enroll in Jan/Feb" rule, which they did.

Nice that someone there has a brain and some compassion.

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Saturday, September 3, 2011

Anniversary of 9/11

Everything on the news is now talking about the 10th anniversary of 9/11.
I don't want to think about it. I have come to realize for self preservation,
I just can't think about all the bad things in life, all the people I know
and loved who have died.

This is not exactly about care giving, but it is about dealing with loss.

I wrote about my experience of 9/11 a few years ago.
This is an update of what I wrote.


Ten years ago on 9/11 I drove from my house in Hasbrouck Heights, NJ to Morristown, NJ.

I got to the office about 8:15.

Bruno and I had an sales call at 9:00 in Morristown.

I very seldom went on sales calls with Bruno. However, I use to work for the guy we were seeing, (Bob). We got the appointment because I knew him. It had already been cancelled twice, so this was a "must show".

I don't remember when the first plane hit. I never went back over the time line. I just remember that somewhere around 8:50 I heard a lot of "chatter" amongst my staff. Something about a plane hitting the World Trade Center. We all assumed it was a small plane.

Then news started coming in, it was a bigger plane.

I phoned my mom in Kansas. Told her to turn on the TV as something was going on, not sure what.

Bruno drove to our appointment, about 5 minutes away. When we got inside the reception area, we could hear a woman in the conference room, crying hysterically. We didn't really know what to do, but everyone continued to work, so we sat down and waited for Bob to emerge.

A few minutes later he came out. He said something like "can you believe it?" He invited us into his office. On his screen saver was the picture of the first plane hitting the Trade Center.

Then, we started our meeting!! Looking back, it was all a little crazy. Here we are, discussing freight rates, services, etc., when one of the major events of our lifetime was unfolding.


Then Bob gets a phone call. It's his wife. A 2nd plane has hit the Trade Center, and a plane has hit the Pentagon. We all stand up and agree it's time to end the meeting, or something to that effect.


Bruno and I go to the parking garage, but we can't find the car. We walk round and round, I am pretty sure both of us were in a daze. Finally we get in the car and I say (or maybe wail) "who hates us so much?" Bruno is Brazilian. Bruno says nothing.

We get back to the office and everyone is leaving. They have closed the schools and people must pick up their children.

Bruno, J.R. and I stay and man the phones. The NY ports are closed. We have ships scheduled to dock, but they have to be diverted to other ports.

Sometime around 2:00 the news reports state all the roads leading eastbound into NYC will be closed at 3:00. My house is east. I leave.

When I pulled onto Interstate 80, the only vehicles on the road were emergency vehicles. Most were from small towns in PA headed to NYC. All had their flashing lights on.
It was very strange, as this is an 8 lane highway, normally bumper to bumper traffic.

There is a point on I-80 near Paterson, NJ, which is very high. You can generally see the top of the World Trade towers from this point.

When I reached that point, all I could see was smoke.

That's when it hit me. The towers were gone.

I worked in One World Trade Center, 77th floor for 1 year. 1985. The first year I moved from Kansas to New Jersey.

For 10 years, the view from my office in Jersey City was lower Manhattan, the towers dominating the skyline.

Now the skyline was totally changed.

I try to explain to visitors after 9/11 how much taller the World Trade Center was than the other buildings. I always say, just imagine something twice as tall as all the other buildings around them.

One World Trade

Two World Trade

That's how those of us who worked there referred to them. We never called them the north tower or the south tower.

Not until the planes hit.

Ten years.



Ten years, and so many other things have come to dominate my life. My dad's death in Dec. of 2011. My mother's illness and death, my b/f's mother, and lastly my brother.

I just can't dwell on these things. I doubt I will watch any of the stories
about 9/11. I just don't want to think about. Just can't think about it.

Life goes on, if we are lucky. We are the survivors. Must make each day count.

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Friday, September 2, 2011

It's never easy


G phoned from dialysis. The nurse didn't understand the instructions from
the Drs. office regarding the blood test for Plavix. She called the Drs.
office but was put on hold forever....

So I called the Drs. office. Explained the problem, and someone did phone
the dialysis nurse right away.

The problem is the sheet requesting the blood test says "check Plavix level
day before surgery". I remember seeing this, thinking that wasn't correct,
but, stupid me, I didn't bother to question them. Ya would think by now
I would know better.

So, it's not the day before a surgery. G phoned me back to tell me all this,
...I won't bore you with our conversation, but I am waiting for a phone call
from the Dr. office.

I maintain the info on the sheet is wrong, that I heard the Dr. say
"Check if Plavix is working on him, because it doesn't on 20% of the
population, and if it's not working we can put him on Effient (I think)". Now, based on that comment, I don't think this test is related to
the surgery. I suspect normally they check the Plavix level/function, the same
way they want to check the INR clotting before surgery, to be sure the blood
will clot.

They haven't phoned me yet.

On another note, my Aunt (Mom's sister, age 81) isn't doing well. She has
been in hospitals, etc. for 12 weeks now. A couple of days ago they must
have given her some medicine for nausea, which made her nuts, she tore out
the feeding tube, didn't know who anyone was, etc.

I feel so bad for her family. Anyway, my cousin gave the name/address of the hospital, so I shipped off a photo album. It's one which belonged to our Grandmother, (who died before I was born) and this Aunt reorganized it in 1996, and passed to another Aunt, and then it came back to my Mom.

I love the old pictures, and since my Aunt who is ill
reorganized this photo album, I trust even if her memory is bad, she
will remember a lot of the photos.

As my mother use to say "Getting old is no fun".



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Thursday, September 1, 2011

Fingers Crossed re G

OK, back to the trials and tribulations of G.

Yesterday when G was at dialysis he phoned me, wanted me to come see him.
They wanted to take out the dialysis catheter, because they were afraid
it might be infected. He didn't think it was infected, that it just
looked a little bad because he wore a smaller pair of jeans for a few
hours the day before, and it pushed on the catheter.

The concern was if they took it out, he would have to go to the VA,
and they don't move very fast, and if something went wrong and they
wanted him to stay overnight he would miss his Dr. appt the next day,
with the top notch surgeon. This surgeon is the best one in town for
kidneys and does 90% of the transplants. He is double booked, and it
took 2 1/2 weeks to get the appointment.

So, G told them to not take out the catheter. They did a culture, to check
for infection.

Today we saw the surgeon, for about 2 minutes. He had 2 guys and the nurse
do most of the leg work. They changed their minds a couple of times what
they want to do first, but ended up first they will do a test to see if
the Plavix is in fact working (apparently it does not work on 20% of the
population). If it's not working, there is another drug they can
prescribe.

Then they will do some vein mapping to see how bad the veins are in his upper body/arm, because this surgeon thinks he can reconnect to the fistula in G's upper
left arm. It would be great to get a fistula working, as a back up for the PT
dialysis, assuming the surgery for that would be successful.

G may have too much scar tissue in his abdomen for it to work. They will
have to do some sort of invasive test to check it out, before they would
consider surgery.

This is so much more reassuring than what the stupid VA Dr. was going to
do. He just said "oh, I can do that surgery", and set up a date, without
doing any thinking, checking, etc. What a cowboy. And now I realize he
probably would have done that surgery, and screwed it up so there would
be scar tissue which would prevent Peritoneal Dialysis. Like I said,
the surgeon said there could be too much scar tissue to prevent the
fluids from flowing properly do to dialysis. But, this is why
they want to check it out before trying to even do the surgery.


So, at least we feel better.

Oh, and we asked the surgeon to look at the catheter and he said "that's
not infected", so G certainly made the correct decision yesterday.



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