FRIDAY — more

“More” is the word of the week.  More exercise.  More pills.  More paperwork.  More attention to details.

Nancy has been evaluated at the other physical therapy facility and we have scheduled two (45 min.) days a week.  There was paperwork to fill out and as she switches to Medicare as prime provider next Thursday this will continue – the paperwork, I mean.  We were encouraged to do lots more at home – exercise, not paperwork.  Once each hour – out of the chair and chase the chickens around the yard.  (I’ll have to round up some chickens – we haven’t had any for about 17 years.)

The diagnosis of gastroparesis, although based on Nancy’s history and occasional emptying of stomach contents, and not on the high tech test has resulted in an additional med, namely “metohkloepramide” (sounds as: metohKLOEpramide).  What’s one more, at this point!

We learned carbonated drinks encourage water retention.  Bad.  As does just about anything one eats or drinks – salt or sodium is hard to escape.  That will be the “attention to detail” part.  And all the labels just get more complicated and seemingly smaller print size every year.

Yesterday a letter came inviting me (John) to serve the community by appearing for jury duty in May.  Fill out the form and return in 5 days or less, they say.  What are they going to do?  Come and knock me around for 5 minutes or so?  I’ll have to see if they will postpone the request for a few months.  More paperwork.

THURSDAY — Home; out of the CCU

The local hospital refers to where Nancy was as a Critical Care Unit. If I figure out how that differs from and Intensive Care Unit, I’ll let you know.

It is now 7:30 P.M. and we have been home about 15 minutes.

Nancy was discharged earlier this evening with instructions for a very low salt diet and continued exercise.  The consensus is that her entry into the hospital on Monday was a result of her heart not being vigorous enough to do its work because of too much salt, too much liquid, and lack of movement.  They don’t call it congestive heart failure for nothing.

The stomach issue is thought to be a result of too little stomach activity over the last 3 months but the test today did not reveal any severe problem.  A medication to improve the physical flexing of the stomach has been started and a prescription written.  The idea is to encourage the stomach to force food along its intended pathway and not let it just hangout there.  Reading material provided indicates that this problem should lessen with appropriate food preparation, medication, and exercise.

A physical therapist had to check her out before the hospital would release her.  He was from the place the insurance company approved – associated with the hospital – for outpatient visits.  We will visit at 9:30 on Friday morning and plan on therapy visits starting next week.

Nancy ate at the hospital after taking one of the new meds.  I have horses, dogs, and me to feed – and the dishes need washed.

I’ll add more about this week’s events for Friday’s post.

WEDNESDAY — Enough already !

A visiting doctor thought Nancy might be experience gastroparesis.  This translates to stomach paralysis.  Test will be on Thursday.

Here is a link and the first paragraph there from:

http://www.gi.org/patients/gihealth/gastroparesis.asp

>>Gastroparesis literally translated means “stomach paralysis”. Gastroparesis is a digestive disorder in which the motility of the stomach is either abnormal or absent. In health, when the stomach is functioning normally, contractions of the stomach help to crush ingested food and then propel the pulverized food into the small intestine where further digestion and absorption of nutrients occurs. When the condition of gastroparesis is present the stomach is unable to contract normally, and therefore cannot crush food nor propel food into the small intestine properly. Normal digestion may not occur.<<

Today’s events:  All was progressing well today until after lunch.  I had been talking to the nurse about having Nancy do more than just be in the bed.  Could she walk around some?  Was there a 4-wheeled walker around or could I bring one in?  That sort of thing.

There was a CWU EMT student there for the day so the nurse agreed to more exercise after she and the young man checked Nancy’s vital signs as she moved about – sitting, standing, in and out of a chair.  That all went well.  So after a little exercise she got back into bed and I started to leave.  At that point she expressed some stomach discomfort – like she had to burp.  I urged her to sit up straight and do so.  It was more than a burp.  It was all the liquid she had consumed at lunch.  She has learned to keep a pan handy and so all the mess was contained.

Shortly thereafter the visiting “hospitalist” came in and talked to Nancy and the others that had witnessed the event.  She was less than surprised and based on Nancy’s long stay in bed before and after surgery expressed her opinion that this would not be uncommon.

She wanted Nancy to eat (mostly liquid and soft food tonight) and then nothing until they start the examination tomorrow.  They will give her food with ingredients that will show on an X-ray and then over several hours and several pictures determine if the food stays in the stomach overly long.

We will learn more tomorrow.

TUESDAY — Not pneumonia !

Pneumonia was not confirmed.  No fever and no sign of the right germs or whatever it takes in one’s coughed-up material, which there was almost none of anyway.

A couple of weeks ago with Nancy seemingly stable the diuretic was eliminated from the drug arsenal.  But as she was not eating the right stuff, combined with the less than robust heart function, she began to retain fluid again.  To Nancy, currently, the ideal food is Lipton or Campbell noodle soup with a fake chicken aroma and lots of salt.  Sometimes she even eats the noodles.

I can’t hardly buy anything she will eat that isn’t loaded with salt.  I guess the next thing is to buy a grinder and get pieces of things small enough that she will swallow them.  The local hospital calls this a soft mechanical diet.  Think of a chicken salad sandwich without the bread.  Such pureed foods are sold, I think, in the grocery store under the heading of baby food.  That probably won’t do.

Before they kick her out of the hospital tomorrow I will have to have a plan in place.

MONDAY — pneumonia !

The past week and weekend were busy and the night’s not very restful.  By Sunday evening late Nancy’s heart rate and pressure were going up and her breathing a bit ragged.  This morning Nancy called the doctor’s clinic and talked to a nurse that knows her.  The nurse, based on the sound of Nancy’s voice and the above mentioned symptoms, suggested bypassing the clinic and going to the ER.  Off we went.

Sure enough, after listening to chest sounds and looking at the chest X-ray we were well on the way to being admitted to the ICU – again.  That occurred right after a massive IV of the combo-antibiotic Zosyn®.  The ER nurse was new to Nancy but the ICU nurse called her by name – not having seen her since last June.  She was the nurse on duty the night Nancy had a big fluid build-up and was sensing an on-coming heart attack.  She initiated the move from the normal hospital bed to the ICU.  Today was just her fourth day of being an ICU nurse.

I spent the initial ER time with Nancy and then ran out to get food.  I was beginning to think they would have to admit me too.  I got back just as the initial Zosyn-IV finished dripping into her arm.  Then I helped with (or got in the way of) the move between ER and ICU.

The expectation is that Nancy will be there two days.  Assuming an improvement the norm will be for discharge (Wednesday?) with oral antibiotics and related follow-up.

I came home about 4 P.M. and missed a lengthily visit by an ICU doctor. I’ll add more information here as soon as I can.  It is now 5:30.  I’ve got dogs and horses to feed and then I’ll head back into town.  I likely won’t get home before 8 or 9.

Pneumonia is covered here:

http://www.medicinenet.com/pneumonia/article.htm

FRIDAY — John thinks . . . (by John)

. . . the country is becoming more dysfunctional by the day.

Reason One:  I report this because we need to make a modem and wireless network change and if it doesn’t work we may be out-of-contact for a short while.  We got fed up with the phone dial-up connection in the summer of 2008 so before the CWU term started we agreed to unload a bundle of cash and signed on with the local phone company for a high-speed (DSL) connection.  Most everyone I talk to seems to have a bit of a problem with dropped connections and we have been no exception.  The problem has gotten worse.  About six weeks ago the cute little red light on the modem started coming on every time a national politician said or did something that was stupendously stupid.  This finally initiated a response.

Last week we called the Company’s customer’s service line, and this being a national company got someone in North Carolina (we think).  The nice lady looked at our digital records and agreed that the connection was dropping frequently.  This I had just told her.  She said she would write up a ticket on it.  We said “Thanks” thinking this meant someone would do something about it.  By this Friday we hadn’t heard a word and began to wonder what “writing up a ticket” actually meant.  I now think it means that if their caller-ID shows it’s us – no one is supposed to answer it.

This morning I wrote a friendly letter addressed to “internet guru” and carried it into the local office – passed it through a hole in a glass barrier – and left.  I wrote about the mysterious lady from the East Coast “She then told us she would write up a ticket.  We don’t know what that means.  The only tickets we have ever gotten were concert tickets or speeding tickets.  What is a DSL/modem ticket?  When should we get it and what do we do with it once we do get it?

An “internet guru” called a few hours later and suggested our modem was likely worn out – “they only last about 18 months”, she said — and if I would stop by she would have a new one at the front desk for us to install. “Great,” I yelled as I headed for the door.

Reason Two:  I’ve mentioned a bill we’ve gotten.  There were two charges for $110 each.  A month ago, I wrote a letter.  It was a nice letter.  I ended with: “I will send a check upon hearing from you if these are charges I should pay now.”  This week a new billing arrived.  One of the two charges was settled by the insurance company paying $99.60 but they still wanted $110 from us for the other – no explanation included.  Nancy called this morning.  That charge had now been settled by another payment by the insurer and our balance was $0.00.  “Great,” I said, “will you be sending us a statement saying so?”  Does it not seem logical that if they have billed us for $110 but now we don’t owe anything at all that they would tell us.  Oh no.  They don’t send out statements like that.  Nancy shut me up before I got to ask what they would have done with my check for $110, the envelope, and the cancelled 44¢ stamp.  Nancy has an appointment in that office in April.

Reason Three:  Mail.  Forms.  Rules.  Reports. Okay, that’s four things.  We signed up for Social Security in October and Medicare shortly thereafter.  A flood of mailings followed.  Some make sense.  Some are unnecessary.  Some are undecipherable.  Each one has a cost.  To the government.  And to us.  If we can’t determine what we are supposed to do, then it takes a phone call (more cost to them).  One letter this week came and a phone call revealed that in the fine print on page three (or was it page 4) it stated that we could ignore this form (page one said respond in 10 days) if Saturn, Jupiter, and Uranus were all aligned ten degrees right of Pluto on the day it arrived.  Who could have guessed?

Oh, Nancy was back at the hospital for another poke with a needle today and as she sat in her walker the doctor that saw her in the emergency room and instigated the “find the bacteria” blood draw way last year appeared and greeted her as though he’d treated her yesterday.  He is what they call a “hospitalist” and confirms our belief that these folks (all the medical professionals) – are amazingly good at what they do.  She was pleased that she got to relate her ongoing story to him because she thinks of him as the first of the life saving professionals in her life.

WED. & THURSDAY — fine & otherwise

It is late Thursday evening, and I’m happy.  Why?  Well, tonight’s food – clam chowder and lemon meringue pie – went down easily and has stayed down.  We established contact with a personal representative, for us, from one of the big mutual fund companies where a third of my retirement funds have been invested and she helped us complete the forms to begin taking out money instead of making deposits.  And, the Kittitas Valley Fiddlers and Friends made some music this afternoon.

About the not so fine things:  Minor irritations with the insurer regarding approving physical therapy continued. On the phone I alternately got yes and no, then absolutely not, and today a letter came that seems to say yes.  Still, the month is about over – so what does it matter?  I haven’t heard a peep from the 4-wheeled walker company – another stain on the health care system.  Some of the issues are like weeds.

John and I had blood drawn on Thursday.  He had to fast for a cholesterol test so we went from the hospital directly to one of EBRG’s finest fast food establishments.  We brought burgers home and about 2/3 of the way through mine – it reappeared.  Enough, I said and called both the pharmacist and my doctor to ask about the meds I’m on and if something might be causing this rapid regurgitation.  We made some adjustments. One of the things I’m on is Amiodarone (used to correct abnormal rhythms of the heart) and is known to have side-effects and interactions with other drugs – with digoxin, for instance, and I’m taking that. (Just for reference I’ll have another blood draw for the digoxin level tomorrow.) Big doses of iron also can cause issues.  As reported above, tonight’s meal was not a problem but that was luck or circumstances.  For one thing, Amiodarone builds slowly and stays long in a person’s body so just deciding to reduce the dosage, and having not yet done so, shouldn’t have any effect.  Do you think?

The oddest thing that happened this week was that my phone at CWU mysteriously quit working.  The deal was to be that the number and messaging system would stay for some months as previous students might be calling and asking for references and such.  The paper work was very clear about this but someone saw my name and the word “retirement” and the dastardly deed was done.  It took several phone calls and some sleuthing by the head-phone-lady to track this down and fix it.

Speaking of sleuthing, John learned that Amiodarone is a drug that emergency medical personnel need to know about.  I’m in the process of ordering a medical-alert bracelet and, so, along with heparin that one will have to be listed too.

MON. & TUESDAY — saved by a cold wind

John had an annual medical physical scheduled for Tuesday at 2 P.M. and then the return drive from Cle Elum.  We might have gone for a short physical therapy walk up the driveway but with him on his return he brought the infamous Valley wind – from the northwest and off the snow covered Cascade Mountains.  When he got home the temperature was 63o F and an hour later it was 53o F with sustained wind at 37 mph and gusts to 46 mph.  He (John) bundled up and went out to give the horses hay.

We didn’t go for the short walk up the driveway as on previous days, and that was fine with me.  Monday’s trip was a bit much.  The first 40 yards of the driveway is up a slight grade, not much, but noticeable.  I didn’t take the walker and so used John as support but that meant I didn’t have a place to sit and rest as we went.  While I can walk, fast and far are not part of the descriptors – slow and exhausting fit.  In the Rehab physical terror room they monitor my heart rate and when it passes 85 bpm we stop, it drops, and we start again.  I tried to mimic this routine but without a continuous monitor I was going just be my sensing my heart rate.  I made it to the road (about 100 yards) and back.  That was enough to do me for two days.  I was saved by the cold west wind today.

Much of my time these two days was taken with routine and not so routine computer chores.  I wasted a lot of time repairing access to Safari on my university account.  First, before finding out I had been denied access because of more than 3 attempts to get to my account with the wrong password, I took the advice of the Help Desk and deleted Windows Explorer 8 from my system, added Vers. 7, and then had to download and install all new XP security updates.  What a pain.  When that didn’t help I then learned of the 3-bad-tries-and-you-are-blocked rule.  I did NOT have to go through all the other at all and I’m back to having an old version of Explorer installed too.  Bummer.

Much of the rest of Monday was spent learning again how to put a web page out on my site – I use a server in Texas.  I wanted to upload information John collected and photographed for the weather station and include air photos taken by a friend.  I was busy for several hours getting the package “just right” and going back and forth with a couple of friends on the procedure – including clickable thumbnails to link to the large image files.  Soon this info will join over 1,000 others in a weather station atlas for the country.   http://www.surfacestations.org/

We had a call from the doctor’s office that my insurance provider approved the out-patient physical therapy from the place where I was.  I only have till March 31, to complete those.  It will also require a co-pay of $25 / visit.  Once I am more sure of myself and things I should be doing, it might be cheaper to join a health club for a few months.  We’ll see.

WEEKEND — keeping up, keeping track

By week end my 4-wheeled walker is still the borrowed one from the PT folks at the rehab facility.  There was no word from the approved provider that was going to see about one with 7.5 inch wheels. Likewise, there was no word on my request of a review of the “approved for a new PT place” so that too is still on hold. Timely apparently is not part of the concept of health care recovery.

Late-week mail brought two interesting items.

1. Back on Dec. 14 & 16 (Nancy is in the ICU) something was done by the cardiologists and described as “Subsequent Hospital” and billed for $120 each time.  A statement arrived dated Jan. 29 indicating the insurance would not pay for these two things and we should send $240.  John tried to call but got a phone-tree and so he wrote a letter stating his understanding of the insurer’s denial to pay for something “Subsequent Hospital” when the patient was still in the hospital.  Now we have a new statement.  This one seems to indicate that the bill was resubmitted to the insurer and they then paid $99.60 which settled the 12/14 debt of $120 but left the other untouched.  Again, there is no explanation of what these charges are for nor why if the insurer can get by with paying only $99.60 of $120 we still have to pay the full $120.  Also, were these things the same (the code of 99232 and description and cost is the same) and, if so, why didn’t the insurer pay both of them?  We are still left wondering what we are being asked to pay for and why.

2. In response to a self-serving survey form from the insurer about a Case Management nurse calling program (talk-talk-nurse program) John wrote a letter.  A couple of weeks ago we were called by a nurse from Spokane.  She was the expected replacement in October for a nurse that called occasionally from Kennewick who was booted out of the process by the insurer when she didn’t agree to move to Spokane. This new talk-talk-nurse, in a response to a question from John, referred us to our EOBS.  John slowed her down, stopped her, and had her back up and explain what our EOBS were.  When the company pays a bill, or doesn’t pay, they then send a printout to you with the title “Explanation of Benefits.”  This is an EOB. The talk-talk-nurse was surprised we didn’t have any EOBs.  Because we did not have any we had no idea about the cost of Nancy’s long hospital and rehabilitation stay.  The nurse promised to alert the company’s computers and have our EOBs printed and sent.  A packet of about 40 arrived on Saturday.   The $$ amounts are frightening.  We will summarize them for you later.  One item, the blood for the open heart surgery, exceeded $10,000.

Change of topic:  Saturday we did go to a retirement community and I walked in with John’s help, my pillow, and him with my violin .. and took a chair I could get up from.   We had a great turn-out and most everyone joined in singing many songs (the Irish ones, we provided words for).  We went home for an hour, and then off to the Children of Chernobyl fund raiser with a dinner, program and silent auction.  We got in at the front of the line with my walker and proceeded along the buffet with servers adding small dollops of things to my plate that was riding on the seat of the walker. I managed to eat a good meal, encountered many friends and enjoyed the program.

Now today, Sunday, is a non-event day.  We have been resting and doing computer email.  I was able to write a letter of recommendation for a former student from Thailand that I had in an Intro GIS (Geographic Information Systems) class two years ago.  He is applying to graduate school in Texas and California, and, via computer, I contacted both places today.  Until ex-students settle firmly into careers these sorts of chores crop up.

With no outings planned, after lunch we walked up the driveway and back, for my daily exercise. There were lots of small birds at the feeder including a small woodpecker, a Downy, we think. Tomorrow we’ll take the camera, walk farther, and see more.

Nancy

THUR-FRI — feeling better

Our life is slowly morphing into a different form.  Two things are driving this.  One is that I am feeling better.  I sleep a lot, but eat and do little, but I can and do – do things. The second thing is that I no longer have a schedule, what with my release from the rehab facility and the falling apart of the insurance supported out-patient rehabilitation.  So, as I gain the strength to do more – I don’t have to do anything.  How strange is that?  Yes, we have much to do but that isn’t the same as having to do something.

In keeping with this notion, today was a slow day until afternoon and evening.   We went to the Rehab center to play music (this is the place I spent so much time after Jan 20th and where they taught me to walk again.  It is always special to go back there to entertain.  Also, tonight was the second night of final presentations for Intermediate GIS. This too was a real treat.  I went because I could, not because I had to.

We will probably not have any news till Sunday, because nothing much is happening tomorrow, except for calls about insurance and maybe my walker will be delivered.  We’ll see.  Saturday will be so busy that we likely won’t get a blog written till Sunday.  We are going to play (music group, Kittitas Valley Fiddlers and Friends), at a retirement community, for their St. Patrick’s Day celebration.

Tentative play list (with Irish music mixed into our normal fare), is below:

1. WHEN IRISH EYES ARE SMILING; 2. IN THE GOOD OLD SUMMERTIME; 3. RAKES OF MALLOW, COTTON-EYED JOE, SKIP TO MY LOU; 4. MY WILD IRISH ROSE; 5. WILDWOOD FLOWER/BUFFALO GALS; 6. TUR-A-LUR-A-LURA (IRISH LULLIBY); 7. REDWING; 8. IRISH WASHERWOMAN; 9. MOLLY MALONE; 10. LEAVES; 11. JUST BECAUSE; 12. BELIEVE ME IF ALL THOSE ENDEARING YOUNG CHARMS; 13. GARY OWEN; 14. THE GIRL I LEFT BEHIND ME/DOWN BY THE RIVERSIDE; 15. YOU ARE MY SUNSHINE; 16. DANNY BOY.

Saturday night we are attending a Children of Chernobyl fund raiser with a dinner, program and silent auction.  http://www.chernobyl.org/pages/hosting.htm

Look for a return on Sunday.

Nancy