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

SATURDAY — frayed edges

If I was still healthy and teaching, today I would have participated in a GIS workshop with 9-12 year olds from around the region.  I and other CWU folks (including, in my case, students, graduates, and a mom of a graduate) host the visitors in a program called Expanding Your Horizons.  It is to introduce “science” to these kids by having them participate in what we do at the university.  It’s a great program that I have participated in for many years (even back to being involved at the University of Idaho before coming here in 1988.  That I choose to tell you about it says that I missed doing it.

It was a wonderful night and I slept well.  My appetite is not the best though, and that is causing concern, especially to John who, when he fixes it, has to eat what I don’t.

Breakfast and lunch were late, but John was working much of the day on the newsletter he puts together for our Kittitas Valley Trail Riders group.  Their meeting is next Thursday night at 7:00.

This was supposed to be a non-eventful day; however, we still had to deal with crazy paperwork things.  Problems of the day meant writing correspondence to insurance companies and  Friday’s mail brought additional misunderstandings from Medicare, the State Health Board, and my primary provider of insurance.  Referral for physical therapy was approved at the wrong facility.  The first time we can straighten this out will be Monday morning.  One agency has different dates for our marriage. How that happened we cannot understand.  We don’t know if we have to prove this or just state the date (July 12, 1969), which neither of us would have filled in wrong on a form.  What a mess is all the paperwork associated with health care. We sure hope someone thinks of a way to simplify this but that doesn’t seem likely.

John also had to go to town to mail the newsletters and while there picked up the correct Iron Supplement I was supposed to be taking. The system somehow spit out 27 mg rather than the 325 mg the doctor wanted me to have.  John caught the under dosage by comparing notes and pill bottles – explained his find to the doctor – and now it is fixed.  Moral: check everything.  So, I have had an under dose for the past week, for my anemia.  It’s no wonder I’m anemic with all the frequent tests and their demand for blood.  One young cute female tech told John it only looks like a lot but isn’t – and he believed her!

I continue to try to catch up on all the emails that came to me — and John saved. Thanks to all of you who were supportive all those many weeks and continue to call and check up on me.  While I was in Yakima and EBRG my cell phone worked well, but not now from home. The best telephone line to use now is the land line (509-925-3304) because our cell phones don’t work well in most of the house.  The nearest tower is about 12 miles away through most of the house and the trees to the south.  Our best reception is in the middle of our 7-acre pasture, but that is uncomfortable in bad weather and won’t do for me now.  Standing by the window in a storage room on the correct side of the house often works and often doesn’t.

After John bought his first cell phone in December he got a letter from AT&T from a vice president saying how much they loved him and how willing to serve him they were.  So he wrote back with a few comments, including a suggestion of a small hill in our neighborhood where they could place a tower.  The letter was returned as undeliverable.  Either the address or the man or both are bogus.  Go figure!

Carry on and we’ll talk soon.

Nancy

TUESDAY — Moving on out . . .

. . . of the University requires a bit of work. Retirement activities were on the schedule today.   We had an appointment at the office of Human Resources. This ended up involving two employees; one for over two hours and the other an hour.  I (Nancy) had to be present because . . .

Building a retirement for me has meant putting in a “defined contribution” from each pay period through a plan called a 403(b)-7.  This code comes from the federal law establishing the ability of an academic institution to set up the process.  In the non-academic world this is done via section 401(k) and seems to be the commonly used term for writers when they write about such retirement programs.

The university will send my contribution and its matching dollars to any or all of three major financial companies. The part with the match is restricted to only certain funds but I have the option (taken) to contribute more in a non-restricted set of funds, but not matched.  I’ve sent $$ to all three companies via both options.  The “contribution” part is ending and the “withdrawal” part has to be established.  Before that can happen each of the three companies has to be notified that I am being retired or “terminated.”  Then, because the State of Washington assumes the retirement funds are shared resources, a spousal signature is required to acknowledge said spouse knows what is happening and agrees to it.  And the six different sets of funds under the thumb of the university have to be “rolled over” into an individual retirement account (an IRA) that is controlled by me, independent of the university.

John thinks the term ought to be “roiled”, not rolled over, because there are several different things that can be done and, as I have six components, and the three company’s forms are unique to them, there is considerable paper work.

Now back to the “I had to be there” part:  To make sure we had all the correct and latest forms, plan numbers, signature pages and so on, we wanted to call and talk to a retirement specialist at each of the firms.  That requires my presence to answer questions (the usual stuff) while being recorded to assure that all is legitimate.  Once the fund rep had that assurance and my statement that my spouse and human resources person could participate in the conversation we could proceed.  Thus, three hours later we had a stack of forms half and inch thick and more on the way.  They are partly completed but there are still nitty-gritty details to be added.  In early April, the flow of $$ will reverse and we will be fully retired.

Some of the time today was also spent on making sure of the transition from the university group health provider (primary now, secondary soon) to Medicare (secondary now, primary soon).   More forms.

I owe a huge thanks to the folks for helping us sort out the details.

MONDAY — A curse on the land …

This will be fast as John forgot to recharge my laptop battery. (forgot? — jfh)

Today was a comedy of errors with the health care system.  We arrived at the Rehab center for out-patient physical therapy only to find out it had not been approved.  (They called home but we were already on the road.)  So off to Super One for a shopping trip and walk around using my walker.  I stopped several times.  Last stop was at the cashier when my phone rang.

It was my doctor’s nurse saying they could not get the referral through the system (my insurance company), as I was not recognized in the system.  Go figure?  I have been there since 1988.  Never occurred to me to ask what she had fed in and perhaps the numbers were wrong ?  So I came home and called my employer to be sure I was covered and for how long – till April 1st was the first answer, and she said she would call the company and see about my being in the system.  She did, but then got busy and didn’t contact us.  Mid-afternoon I called and she said I was.

I then called the number where a few hours before I was not in the system” – Morning  linkage went from  Rehab to Primary care nurse, to insurance company and then reversed and eventually to me.  With me having verified my ID number was in the system the request went round again – me to Rehab, etc., etc  I had a phone call that it was done, and they would call the rehab center.  I had already called.   Unbelievable.  We suspect someone mistook a 7 for a 1, or a 2 for a 5, or just maybe a nerve impulse didn’t jump a synaptic cleft and a finger that should have hit one key, hit another.  At some point one has to let go of the need to understand what went wrong.

Now I’m approved for 15 visits through September– and the first will be this Wednesday.  However, on April 1 (an appropriate day for this) the insurance company will be demoted to ‘secondary provider’ and the Gov-ment Medicare program is elevated to ‘primary provider.’  Even now Medicare has been billed by someone for something and we got a long form wanting information they can check to decide if fraud is, has been, or might be going on.

Thus another day of frustration.  It won’t be the last.  A curse is upon us all.

Nancy

SUNDAY — a RECAP, mostly by Nancy

Happy days !   Loads of quiet sleep last night.  I even slept through the coyotes yelling.  Was awakened twice by Brittanys wanting to go outside, but John let them out.  Breakfast (non-leather fried lightly egg and a sausage link), tomato/V8 juice, and then pills.  We had bought a pill container allowing spaces for Morning, Noon and night for all meds for the week.  It took us awhile to fill the box. Today for lunch we went to our neighbors, who ordered in Chinese as their oven/stove quit working.  Yummy and a nice visit.  I was so happy to be able to join their family again. Came home and slept hard for 2 hours !

Okay… after being on-line on my laptop again today, and calling some people by phone, I realized that many of you had not heard the entire story.  Even those reading the blog would have missed on the beginning of this because John didn’t get it started till Dec. 4th.

So, here is a list of events starting in June that culminated in what happened.  John will have to add and make corrections, but here you’ll have the whole story and not have to sort it out.

In June 2009 I went to the ER when my doctor in Cle Elum could not see me because the clinic was closed to participate in a funeral for one of their own.   My Doc listened to my symptoms and told me to go in immediately and ask for all the doctors in ER to take my case.   I was very run down and had red spots on my lower legs, indicating internal bleeding.  They examined me, took an X-ray, and so on and the lead doctor decided to take blood for a culture.  The lungs appeared to show “a bit of pneumonia” but nothing jumped out at them as to what was wrong.  He admitted me to the hospital for further testing.

Two days later, the culture results indicated my bloodstream was full of bacteria – introduced, we suspect, in a late April dental cleaning.  The  “a bit of pneumonia” was fluid leaking into my lung from damaged cells.  When infecting the heart this is called endocarditis. The bacteria grew on the valves of my heart — the mitral valve was the worst, and I had known for years I had a heart murmur and was advised early to take a high dose of antibiotics before any teeth cleaning or anything that opened my blood to potential infection. I had done that in April, but apparently I was run down and the antibiotic did not protect me.

I was very ill and had much fluid build-up which, along with my heart issues, made me have difficulty breathing.  These symptoms were treated. I received a non-targeted or general antibiotic while cultures were done to determine the exact nature of the bacteria.  There were four – all treatable with Rocephin – and as by then I was no longer in imminent danger of dying I could leave the hospital. I had to go in as an outpatient for 28 days for infusions of Rocephin that lasted ½ hr.  This was done via a tube or PICC line from my elbow to just above my heart.  That solved the bacterial infection.

Afterwards, I visited both an internal infection specialist and a cardiologist in Yakima.  Visits continued till it was determined I had made enough progress to teach in the fall.  Our classes begin in late September.   I managed until the morning of the day following Thanksgiving – I woke at 3 A.M. with chest pains.  First time, so I told John I was having a heart attack.  We dressed fast and he drove me to ER in Ellensburg.  They took me in and called an ambulance, sending me off to Yakima Regional Hospital.  Once there I had my first operation (for which I was awake), to watch them search for a blood clot that lodged in an artery across and leading to the front of my heart.  This was accomplished in the cardiac catheterization room where a long thin tube, called a catheter, was threaded into a blood vessel and then guided to and dislodged the blockage.

That was Friday about 6 A.M.  I seemed to be fine on Friday but by noon on Saturday all my systems were shutting down.  By late afternoon I was taken to the intensive care unit and I was put on life support.  Tubes and wires and things I didn’t know about.  It looked like I was dying.  6 days completely sedated.  Two more of partial sedation –  still with breathing and feeding tubes—but I was aware of my surroundings.  The exact reason for my cardiopulmonary collapse remains a mystery.

At some point they found I was deathly “allergic” to Heparin, the major blood thinner used for all operations and even to flush PICC lines. An initial test for this came back negative – it was suspected in the shutdown – then later, a second test showed the very serious reaction.  [This reaction is called Heparin-induced thrombocytopenia (HIT) and I discussed it earlier.  JFH]

I started to improve and was moved to a different floor.  Then my heart missed a few beats and I was back in the ICU, picking up a temporary pacemaker on the way.  There were a couple of days of watchful waiting and plans to insert a regular pacemaker but my blood clotting ability wasn’t cooperating.  While the wait went on I wasn’t eating well and started to deteriorate again (or more).

The death spiral was halted by inserting an intra-aortic balloon pump (IABP) to assist my heart pumping functions. [This too, I covered earlier.  JFH]  The IABP resulted, just a few hours later, in my general improvement.  This was the expected result and it also indicated a good result from a mitral valve replacement.  First I would have to live through an open heart operation – that probability was not real high. I was in intensive care with 24 hr supervision as they worked to improve my health.  It wasn’t happening.

John and I and the doctors talked.  This is the definition of between a rock and a hard place.  I would die without the operation.  I might die during it. Take your pick!  John sat at home with the dogs and they took me from the ICU at 9 A.M. on Tuesday, 12/29/2009.  The heart surgeon’s nurse called John at 3:30 to say she left the operation as they were closing my chest back up, that I was alive, and doing well.

The actual procedures – two by-passes and one valve replacement – normally take this team about 3 ½ hours.  Because of being on a non-standard blood thinner the operation was extended another 4 hours – 3 hours with an open chest to visually monitor how I was doing, another after initial closing to watch the equipment that was watching me.  I spent 2 ½ days sedated and intubated and closely watched.  John spent one day away as I was aware and wanted to communicate and the nurse wanted me as quiet and still as I could be.

I was in intensive care until I left Jan 20th for a rehabilitation facility in Ellensburg.  Had there been a room available in the care unit called “advanced care” I could have been moved.  That floor remained full and none were sicker than me so I stayed put. That changed on January 18th and I was booted upstairs with little warning.  I stayed for two days in that room.  Then I came to Ellensburg.

I had to be in a skilled care facility.  I lost much muscle mass and could not get up from bed on my own, nor walk once up.  So, my leaving the facility hinged on my being able to get out of bed on my own, get to the potty on my own, and walking with the aid of a walker.  I had physical therapy 3 hours each day.  Even my tongue had lost muscle and I had trouble swallowing, food and pills. Some say that for each day of being down a 2 to 3 day recovery is required.  I’m not there yet but I progressed enough to make it home.  The great day arrived for my departure (as you heard in Saturday’s blog), and now I’m home and getting better each day.  I will go back to outpatient physical therapy 3 times/week at the rehab center.

Thanks for caring and asking.

Nancy

WEDNESDAY — 43 and counting

That’s hours!

About Noon on Friday Nancy will sign out of her guest lodgings.  As I write, that is just over 43.5 hours.  Saturday will be her first full-day home since Thanksgiving – 3 months.

Home, however is a mess.  The office she occupied at the university is empty.  Its contents, not counting what I have thrown out or given away, are now in our previously cluttered living space.  For a few days Nancy and her 3-wheeled walker will be severely restricted as to where they can go together.  The “un-approved” method of travel – what the physical therapist calls “furniture-walking” may take her a bit farther.

The way I see it, the more throwing away we do, the more her living space will expand.  Is that an incentive, or what?

TUESDAY — the reporter checks back in

Sunday was a non-event day.  There were a couple of visitors and me for lunch and supper.  By non-event I mean there was no therapy.  Nancy got a lot of rest.

Monday the therapy folks made her work hard.  Then as lunch was about over a tall thin fellow with a guitar and a fiddle, two young ladies, one with a guitar and one with a fiddle and a 2 year old – came to play for the patients.  The man came to Nancy’s building but the other three missed the fact that there are two facilities side-by-side, and they entered the other one.

For a short time the man was alone with assembled patients, a guitar and a fiddle.  He asked if anyone could play with him but no one was able so I got Nancy – she is in the adjacent room – and just as the two of them got started the other ladies showed up.  The man was from the upper mid-west and the ladies seemed to be local.  They all knew the tunes, though, and Nancy didn’t.  They would start a tune and she would have to pick it up and add what she could.  Some were story-songs the fellow had written.  It all worked quite well.  For the last song they powwowed with Nancy and agreed on a tune she knew.  She was most pleased.

When I got home I had a message on the recorder from a person in Yakima that wanted to tell Nancy about the latest blood test and what amounts of medication to take.

Tuesday morning I gave the number to Nancy and she called the person.  The conversation was a bit off-kilter because the lady felt she was responsible for reviewing tests and changing medications and, somehow, she didn’t know that Nancy was not at home and didn’t quite grasp that Nancy knew only that her blood had been taken – and nothing more until a rehab nurse brought the pills.  The nurse then talked to the lady in Yakima.  The source of confusion was never uncovered.  We don’t know who handled the med-change on either end.  However, when the nurse explained the change and the reason for it to Nancy and me we both understood what was being done and why.  We have never known the chain of data once the blood is drawn.  Were we supposed to?

I expect Nancy to leave rehab on Friday.  I think the decision is still to be made on Wednesday afternoon.

SATURDAY — 0.48

The distance traveled today was 0.48 mile, one way.  Double that and we still didn’t make a full mile in the car.  I should have zagged or zigged on the way to or from.  I wasn’t sure whether to zig or zag so I didn’t.

Nancy got in and out of the car just fine.  The 4-wheeled walker ‘just’ fit in the back.  These things do fold but are still large and odd shaped.  The place we visited is a series of apartments with mostly senior folk and from the gender of those that showed up, about 94% female.   A few came with walkers much like the one Nancy is using.  There were a couple of wheel chairs and maybe a cane or two.  There were snacks afterward but of the dry cookie type or small sandwich variety.  I could have made a meal of the stuff but Nancy is into moist and softer things and we didn’t stay.

Also, we needed to return to her room for a potty stop and then she needed a nap. She very much wants to participate but from getting going to getting back was about 2 hours and that, currently, is a lot for her.

Changing direction a little, we’ve noticed that on her lower legs her skin is peeling much as it would if sunburned and there is some general redness there also.  This is the location of the worst of the edema and visible swelling during her ICU stay.  I suspect a connection and have briefly searched on the ‘web’ with little success.  The search results I’m getting are all over the spectrum and not what I want.  I guess my search terms need improvement.  If you have any ideas on this issue you can let me – John –  know here:   nancyh@ellensburg.com

MONDAY — swans

A swan seems to take off with difficulty, some even say clumsily.  Once airborne the legs tuck in and the neck stretches out – and the clumsy becomes graceful in flight.

Nancy is close, but not yet able, to get started on her own.  Wheelchair, potties, and most beds are low and she just can’t quite get up from them.  In the PT room they have a bed that is higher off the floor.  From it Nancy can get her feet on the floor and with the high handles of her ‘walker’ she can establish vertical posture.  Then she is ready and able to travel.

The grace of a swan in flight?  Maybe not.

But grace, nonetheless.

SATURDAY — rant

Friday evening, with Nancy doing well, I decided I would stay home on Saturday morning.  So I did.  I stayed home this morning to do a few things and failed – not in staying home but in getting anything done.  Dogs and horses needed attention. Nancy called several times.

Her roommate’s daughter had stopped at a well know food place and bought a milkshake – “one of the best shakes in town.”  Nancy thought she might like one.  To kill two of us birds with one stone I decided to order my meal as well.  $10 later I was on my way.  Why does a small milkshake cost $3.00 when I can buy a half-gallon of ice cream (on sale) for the same price?

Next “milkshake day” I’ll make it at home and carry it in.  And don’t get me started on how little things cost when I was young!

It is late afternoon and I’ll soon be headed back to town.  We have 100% cloud cover and it is sprinkling and I have to go out and feed horses.  And the dogs want to go out and run in the muck – not a chance!

I’ve looked all over for a phone number she wants.  Can’t find it.

Ran her soiled shirts (blouses) through the laundry.  Then ran the dish washer just to claim I’d done something useful.

In December Nancy was in the hospital and I bought a cell phone.  It has a camera.  It isn’t of much use unless I can get the images from it to my computer.  It has “Bluetooth” and a USB port.  I haven’t figured out the Bluetooth thingy yet so I went (today) and bought the appropriate cable for the USB connector.  I just spent an hour trying to figure that out.  No luck.  So I will make another trek to the AT&T store to see if they have any idea.  If that doesn’t work I’ll have to go find an 8 year-old.

Rant over.