MONDAY — just thinking

We are at that time of the year when the daylight hours are increasing and the weather is more conducive to being outside – sort of.  Last week three days of 45 mph wind didn’t help and now it is cool and slightly wet.  I still have 7 Ponderosa Pines to plant and lots of other things to do outside.  I mention this because during the winter (when Nancy was in critical care) there wasn’t much I could do, and so I grasped at all the information about her condition and treatment, and using the internet, tried to figure out what was happening, and then shared it with any that cared to read about it here.  There was a daily immediacy to the events and I began very unaware of all the medical possibilities and it was a steep learning curve.  So, I put lots of details in my winter reports.

There is less now on a daily basis to report and while we are very busy with all sorts of things, many are not exciting, and none are life threatening unless you count driving on narrow roads with right-angled turns every little bit (a consequence of our square survey grid). My (and our) reports now are more abbreviated but I still hope that on the medical issues I provide a good summary and appropriate links and key words that if you want to explore the issues more fully you will find it easy to do so.

I chose not to open this thing up to comments initially knowing it would be difficult for me to deal with personal issues (talking on the phone was an even more wrenching experience).  In one respect allowing comments would have made it easier for us to learn about what has been going on in the lives of others had you wished to share publicly but e-mail does work and we are learning a lot.  We thank you for updating us and we find it somewhat appalling that we have failed to keep up with all the goings on in your lives.  There have been accidents, hip replacements, surgeries, deaths, and new partners, and new grand children and many other things.  Wow!   [ nancyh@ellensburg.com ]

During last Saturday morning’s swing through the garage sale circuit John bought a pair of work shoes and an 18 inch pipe wrench.  Nancy bought a tear-dropped shaped mountain dulcimer (4 strings with C or D fretting).  You can look it up – I have no idea.

Nancy writes:

I want to put this next part in, because in this new exercise class I’m in, is a woman who had BOTH hips replaced less than a year ago.  She is doing really well in the class.  Maybe that will be encouraging to those of you with hip problems or replacements.  There are also people in the class who have knee replacements and they are up on their feet doing well.  We heard yet another family member just had one of those.  I’m still having trouble lifting my own body from a sit to stand without using my hands, but I’m told I will be better and able to do that at the end of three months.  I’m ready for that.

The program I joined is called SAIL—not as Sailing with the wind, but is an acronym for Stay Active & Independent for Life.  I joined a SAIL class, at the Adult Activity Center in Ellensburg.  It is an exercise class, developed by two women in the State of Washington.  It meets 3 days / week MWF from 1:30 to 2:30 and costs $3.00 for 3 months.  It is low impact aerobic stretching, balance, and strengthening exercises sitting or standing behind your chair, or walking around the room of chairs… to music.  We have a certified leader.  Today (Monday)  there were 21 people in attendance.  The oldest is 93 years young, and she “runs” / “walks” circles around most of us.

I’m still sorting through the clothes I bought at an estate sale.  Some low cut blouses (because of my heart surgery scar I don’t want to show) I’m giving to my neighbor.  My older bigger clothes, I’m portioning out to friends who can wear them.  I will never be in 2X again; that I know for sure.  I even had a few 3X blouses.  Now they swallow me.

One night last week we went to an orchestra presentation at the new music building where the acoustics are lovely; almost perfect from every seat in the house, and the Symphonetti from Rexburg, ID gave a great performance for about 1.5 hrs.

While I went to my normal nursing home music venue on Thursday afternoon with the Kittitas Valley Fiddlers and Friends, (I fiddle and sing), John planted trees, and cut off a matted (too bad to separate) tail of one of the new horses (Cheyenne).  I also attended a thesis defense for one of the REM graduate students who was in my class last fall.  So while I have retired, I still can find time to support some of the student activities that are meaningful to them and their families.

John reported I bought a dulcimer that I now have to learn to play.  A year ago I got  mandolin – also used much in old time music.  John says when we win the lottery and build a mansion with a great-stone room with a fireplace we can hang all the musical instruments we don’t play on the wall next to a large window looking out on the horses we don’t ride. Until that day, we plan to both play and ride.

SUNDAY — Many faithful readers

Well, okay, one actually: It’s only been since last Wednesday we (John) wrote, but had a request today from one of you in Blog land, that it was time for an update.

Things have continued going well with Physical Therapy and with getting out to go places.  Nancy went today to an award ceremony (for a prior student) at CWU, and John went on a field trip to Umptanum Falls and to patterned ground up on top of Manastash Ridge just a few miles south of EBRG.  John has continued every afternoon,  until today, to do “ground” work with the horses in the round pen.

We hit a few more yard sales and got me more clothes for the thinner body.  Nice to get them at these prices and not at store prices.  Goodwill is a good source too, but about 4 times as expensive.  I am still excited about the shoe-style boots we found in Yakima Goodwill for John, and the work boots I found for him at a yard sale, for $3.  The strangest coincidence happen with this purchase.  An hour after I returned home with the boots we went out again to watch a young friend play baseball, and behold, there sitting on the end of the bleacher was the previous owner – there to watch his grandson.

We do have to go to a doctor this Wednesday to talk about a possible implant of a device to control my atrial fibrillation but then the next appointment – a follow-up with the cardiologist isn’t for nine weeks.  I’m not sure I wish to go back in the hospital again any time soon, especially with my complications with Heparin, the blood thinner.

Nancy

WEDNESDAY — taking stock

Nancy and I went to Yakima today for a visit with the cardiologist.  He reviewed her history and records from the time she entered Yakima Regional Hospital with an on-going heart attack on the Friday morning after Thanksgiving.  This was interesting – his view – but it was not new material.  He reviewed all the medications and recent tests and suggested some adjustments and a substitution.  He also made a referral to another doctor in the practice, this one is an implantable device specialist.

One med problem is that the desired action of Coumadin (Warfarin) as an anticoagulant isn’t being maintained with the 2.5 unit dose and creeps up with the 5 unit dose.  Thus, until there is a 3 unit dose we are back to taking the larger dose about every third day.

He is recommending stopping the Lisinopril and substituting Telmisartan at its lowest dose.  These meds are to help maintain blood pressure in an appropriate range and one advantage of the new med is that it lasts longer in the body than the other.  Deciphering all the other differences of these types of drugs will involve more reading than I want to do tonight, so no more about them now.

The referral to the implantable device specialist is to get an opinion on whether or not one of the modern gadgets would work for Nancy in controlling heart functions.  There may be benefits with some implanted device but there is also the problem of her reaction to heparin such that any procedure would be more problematic.  That appointment (about 2 weeks off) has yet to be scheduled, so again, there is not much more to be said tonight.

EASTER — Celebrating; now where’s spring

We bought a rib roast and took it over to our neighbor so she could cook it in her new oven, thereby saving us the trouble of cooking, making gravy, and carrying a cumbersome and hot carton of things 300 yards down the road.  Nancy is supposed to take a stomach motivation pill about 30 minutes before she eats.  So we arrived a bit early and engaged in neighborhood news with the extended family members.  After a time Nancy rose out of her chair as though she had been poked with a sharp stick.  We were shocked – shocked, I tell you!  She had forgotten to take that pill and dinner time was fast approaching.  We were shocked that she would be so forgetful and threaten the timely serving of the food, for the rest of us would not have tasted a thing until her recalcitrant stomach was primed for the event.  Shame on her.

We haven’t written in a couple of days, but it’s because we have been busy, visiting doctors, physical therapy, and checking out some horses in the lower valley.  Nancy anticipates riding this summer and needs a calm and responsive horse.  We found a Tennessee Walking Horse mare 10 years old with experience around guns, dogs, people milling about, birds flying from under foot and so on. Namely, a birddog field trial horse.  She has a 6 yr. old half brother.   We will pick them up next weekend.

Nancy drove to town Friday – her first such activity since before Thanksgiving.  And also, except when we know she will want the attached seat, she leaves the 4-wheeled walker in the car.  All signs of progress.

John participated Saturday with our youngest horse in a workshop put on by our horseback trail riders club in the Kittitas Valley.  The weather outside was frightful.  Friday we had 3 to 4 inches of snow, and it snowed here a little Saturday.  I stayed home and was able to speak by phone with my maid of honor at my wedding… 40 years ago.  That was quite special.

Also, Saturday afternoon we went to a friend’s house and watched 4 kids color Easter eggs.  It’s much different from what I remember as a kid.   Then we ate a wonderful dinner and played around afterwards on the piano.

Monday starts another busy week.  One of the companies with Nancy’s retirement money gave us the wrong forms a few weeks ago so new ones have to be completed, signed and stamped by CWU’s benefits administrator, then resubmitted.  We have to turn in campus keys, go to physical therapy, go to the hospital lab for another blood draw for tests—never stops, and threatens to make me anemic again ! (ha ha )… not so funny.  Wednesday evening there is a presentation on the great ice age floods that swept across what is now eastern Washington State carrying blocks of ice, rocks, and all sorts of debris to the Pacific Ocean via the (now named) Columbia River Gorge.  This is a favorite topic of many retired earth science types we have known for years and, as such, we will see a lot of friends last seen months ago.

We know some readers are experiencing lovely spring-like weather.  And from the winter you had, you deserve a few nice days.  Not us.  We had a mild winter.  Here, this past week has been more winter-like than winter was.  With new horses coming, John has preparatory work to do.  Where’s spring?

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.

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.

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

WEDNESDAY — back to school

[written Wed. evening]

I made scant progress getting approval for physical therapy.  Maybe tomorrow.  Maybe never.

Most of the rest of the day was uneventful and I didn’t do all the exercises I should have, but at 4:45 we drove to the University so that I could participate in the final presentations of Intermediate GIS.   I was scheduled to teach this class and had signed in many of the students from previous classes – before I went missing.  My replacement kindly invited me to return.  It was nice to be there and see a few familiar faces and to view their projects.

Although I can walk I didn’t want to sit in the classroom chairs as they would be hard for me to get up from, so, I followed my walker into the building and up the elevator.  I discovered two problems.  The seat of the walker is a fine idea poorly executed.  Comfortable it isn’t – even with a cushion.  And the second problem is that I no longer have the built-in padding I’d learned to live with. But this is a condition I do want to learn to live with so I’m not complaining – just stating a fact. Did I mention it was a 90 minute class?

It was also my first time back on campus since before Thanksgiving.

Nancy

MONDAY — Nancy says . . .

Today was a most frustrating day all day from the initial contact with my insurance company until 5:00 p.m. with another call to them to check on what supposedly had been changed on the referral to Physical Therapy.

I’m not allowed to use the words on the blog that emanated from my mouth several times today.  I’m sure this is a test of my stress level and I guess I passed it.  I’m still alive.  I do not know how truly “sick” people deal with the system.  It stinks big time.

Started at 8:00 a.m. with a call to my principal insurance provider about an incorrect facility in the referral for outpatient physical therapy.  I was put on hold for 20 minutes while the agent checked on it to be sure, after I asked if a new referral with the correct place needed to be sent from my doctor.  She returned to say that it was the only facility they would pay for because I was no longer a resident of the Rehab center.  She said my doctor could request a change but it would likely be denied and the appeal process would take 30 days.  I won’t need it after that, most likely.

Then I called my doctor’s nurse to explain what happened.  The accountant in charge of such things called my provider and put in a changed location for the provider.  I didn’t hear until 4:00 p.m. today that it was approved, but we have nothing in writing, and only an authorization number.  I called the insurance company again and gave them the authorization number and was told it was still to the old facility.  So back on the phone to my doctor’s office and the woman who had just called to report nothing had changed.  I wanted to know before I made another appointment at the Rehab center that I would have to break.  She called again and found the paperwork had apparently not been updated in all the right places.  Now we await verification.

Let’s see .. what else today?   I spent loads of time on the computer responding to folks all over.  John took the 3 horses to get them their flu shots.  The wind started blowing again, fiercely all day, but that did not affect his getting them into our trailer and taken down for their appointment.

Oh, another call this morning to the HEBB (health benefits for the state), satisfied them that our wedding date was indeed July 12, 1969.  I never heard the other date they had.  He actually said the correct one before I had to tell him.  Also they were asking for his and my Medicare cards, which we thought had been submitted with the application.  Sure enough, they were in the file.

Finally, I made another call to the provider of my 4-wheeled walker which may not get delivered until I no longer need it.    They didn’t have any in stock with 8” wheels but no one thought to call me since last Monday when I refused to accept the 5” wheeled version.  First, the person contacted today said 2-3 weeks and he’d have to order; then he found they had one with 7.5” wheels and perhaps I will get it as late as this week.  Wow.. more frustrations.

Did I say ?  Something is wrong with this system, and I wonder how others are treated.  Certainly they don’t get any better “customer” service than I have experienced.

Actually, there is good news with my eating ability.  I managed to eat ½ piece of pizza john made for himself for dinner.  That was before my bowl of soup.  So I’m improving a little.  Not fast enough for John’s wishes, however.

Nancy

[from JFH:  Have you ever noticed how things seem troubled when the wind blows?]

SUNDAY — recumb & fly at the same time

We started the morning filling the pill box, our second time.  We have seen pictures of folks going through this routine.  One pill is only once-a-week, on Monday morning, and likely only for a month or two.  Some I’ll take for the rest of my life.  Some are twice a day.  Some need to be broken in half because I don’t want to try and swallow the big ones whole.  Some are tiny.  One is dark green.  One is bright yellow. One is chewable.  One says don’t chew or break. Others have to take many more than we are currently dealing with.  Sorry folks!  And some folks have very expensive pills to pay for.  Sorry again, but these are relatively inexpensive.

Today brought long distance phone calls from family and friends. Otherwise, the day was uneventful. I made time for leg exercises and to eat 3 meals (I’m still a light eater), and take my pills.  Then we worked on some ‘Thank You’ stuff.

So while we were at home basically on cruise control a friend went flying for us – into the winds of an approaching storm. John wanted an air photo of the location of the weather station – it’s so new it wasn’t there when currently available photos were taken.  We asked and she said she had to fly anyway – but whether that “had to” was a required time-in-air thing or a psychological thing she didn’t say.  Late afternoon she called to say that despite getting jostled about some she got a batch of photos.  Now she will export to her computer, create a CD (because of large file sizes), then John will upload, resize, crop, and annotate.  Then one will become part of a public (viewable on-line) weather station atlas.  The technology is as amazing as that found in intensive care hospitals — even if what transpired today hasn’t saved my life I’m still impressed.

I’m still working through the batch of emails that have piled up since November, and responding to current ones.  John goes in and out but returning frequently to see what I need.  I’m spending time in a recliner chair and while I can get down and up, I can’t make the thing lay back in the recumbent position and a recliner isn’t much good if it won’t recline.  John is the power unit that makes the silly thing recumb.

Nancy