Health, Doctors, Meds, All Day Everyday

It seems that everyday we are dealing with more doctors, more meds, more tests, more physical therapy, adding more pieces to the puzzle created by A-Fib and CHF.  The consequence is that we are both wearing out.

Today we were back to Dr. Tess, the nurse practitioner.  Tuesday we met with GP that we both share.  Tuesday night they conducted another sleep apnea test on Hubby hoping to find a sleep mask that would suit him. 

The knowledge that we can now add to our collective Hubby medical tomes include:

1.  Hubby is pretty much always in A-Fib; this also means that a heart rate of 150 is probably going to be his norm (most people are around 60 - 100).  The A-Fib is on the right side, rather than the left which is unusual.  We learned this from the monitor he wore last week.  This news was not encouraging.  Being in atrial fibrillation so much of the time is causing Hubby to be worn out and his heart rate to stay elevated.  

Hubby is now experiencing quite a bit of dizziness when he exercises or has to walk any distance.  This is to be avoided and the exercise should be paced to make sure he doesn't get dizzy (and fall down and break something). 

3.  Hubby was anemic by the time he ended up in the hospital when his blood pressure was soaring and he had all the symptoms of congestive heart failure.  Since he was hospitalized I've been cooking three meals a day -- and it's paid off, thankfully (how I miss serving up a bucket of chicken and fries).  He's been taking a daily vitamin with iron and eating food with very low to NO salt content -- and he's lost six pounds.  I don't worry so much about the diabetes -- but I make sure every meal is full of things he will eat and that are good for his heart.  If that includes some food with sugar, so be it.  Ice cream is much preferable to salted nuts right now.  Some days the only thing I manage all day is the cooking.  Still everybody was pleased that his blood pressure was 125 / 63 this morning and that he had been losing weight (CHF patients gain weight suddenly -- one of the symptoms -- because they are containing water).  

4.  Since we have now reached the limits of what the meds can do, we are going to look into ablation.  We meet in December with the heart doctor associated with our heart clinic that is the expert for electric shock therapies for the heart. 

Research on the web shows:

A specific form of catheter ablation is called AV junction ablation.  The goal of this procedure is to eliminate conduction through the AV node or adjacent structures.  Therefore, there are no heart beats that get from the top chamber to the bottom chamber.  The patient is therefore reliant upon a permanent pacemaker to maintain their heart rate in the ventricles.  Such as strategy does not prevent atrial fibrillation, but simply controls the rate, specifically the ventricular rate, in the patient.  Nevertheless, many patients have a significant improvement in their symptoms if they have had excessive heart rates previously on medication alone.  

The treatment of catheter ablation of the AV node or junction is irreversible, and therefore should be only performed where it is certain that a return to conduction is not desired.  This is usually when all previous medication strategies have been excluded.  In addition, it has been determined that the patient is not an appropriate candidate for catheter ablation of atrial fibrillation itself.  

5.  Hubby hated all four of the sleep apnea tools but he did last through the entire testing procedure.  He claimed that every machine dried him out so much that he found it more difficult to breath.  This was true even when they tried moisture with his treatment.  We are back to square one with the sleep apnea.  Yesterday was pretty much a wash for both of us as neither Hubby or I had slept much, if at all, Tuesday night while Hubby was undergoing the tests.  

This morning was met with Dr. Tess at 9 a.m. It's good to know we have so many experts in our corner, trying to find solutions and offering help. Then we drove downtown and rented the "big car" for the trip to Houston over Christmas.  Holiday season rates showed that the Lincoln we usually get was going for $900 (we should have rented the car much earlier and we'd have gotten better rates -- but this chore, like many others, fell below the radar when Hubby got so sick).  We all compromised and rented at Crown Vic (Ford) for $400 instead.  Bah.  Then we drove to Sam's and got some light bulbs for the kitchen and dining room -- both had been dark for two days.  I picked up some paper plates and stocking stuffer for Houston and dang if the bill neared $200. 

Gus is doing well from his teeth extraction.  We are so grateful that he survived his procedure.  We weren't so happy with the bills:  $93 for meds, $789 for the surgery.  Still, we have a very good vet and Gus experienced no health reactions at all -- and even though all his teeth except three very small ones in the sides of his mouth are now gone --and his tongue still stays in his mouth.  He looks a lot cuter without that tongue dropping down.  We can tell he's feeling a lot more perky without those infected teeth. 

At 5:30 this afternoon we'll drive over to the Research Health and Fitness Center for a little workout (Hubby trying to keep from getting too worn our and thus dizzy and me trying to work out the kinks in my hip and back with some water aerobics).  My new swimsuit and swim shoes have arrived and I'm anxious to try them out. 

Thankfully we have no more medical appointments until the second week of December.  We have an exercise regime to follow, though.  A diet to stick with.  A trip to get ready for.  Strength to build.  And prayers to offer up that life goes on.  We continue to try to keep the faith.  

The Heartbreak of Saying Goodbye

To lose the anchor in your life in unimaginable.  To lose that anchor when you are both still young and haven't had the joys that are supposed to come to you in your "dotage" is so unfair. 

I have a friend who is experiencing just this horrible fate.  I don't know what to say or how to offer comfort. 

I have never met this friend.  I read a local blog and found her there, responding to stories of farm life. 

local blog:  Just Me

friend's blog:  Stargazer

She lives in the Northwest, exercises and is alarming lithe and slim, has two adult daughters, drinks coffee religiously, is a more than a decade younger than me,and speaks and writes fluent French.  We seemed to have nothing in common.  Except she's been a teacher in a public high school all her adult life.  Her husband was much like mine -- refusing to dress even for formal occasions, a man handy with tools and fixing things around the house.  She struggled at times with her family -- except for her it was the in-laws, while for me it was the parental units.  She is plain spoken, feisty, and full of spunk. 

We took to reading each other's blogs and talking on Facebook.  When her husband became chronically ill, we kept up a running commentary about how we were faring with the illnesses that surrounded us.  We can't see each other but we have forged a bond that has meant much to me, especially in the last 12 months. 

Except now her husband is dying.  From lung cancer.  He's only in his early 50's.  And soon he will be gone. 

She's facing my worst nightmare and I have no idea how to comfort her or offer solace.  How does one face something this horrible and still have to go on working and maintaining and keeping a stiff upper lip?

She's written beautifully on CaringBridge about their current situation. How the family is coming between his bouts of lucidity.  How scary it is when he's drifting away.  How she's holding him and surrounding him with love.

What will she hold tomorrow night or the next one when he's finally gone?

My heart is breaking for my friend and her family.  Lord, please don't let this be my fate for many, many years.  Please. And please, bring peace and acceptance to my far-away friend.  Let her heart be strong and her spirit unbroken.  

Leftovers and Beginnings

I started the morning at 7:20 dog walking and man! was it cold!  I wore the dog walking coat -- heavy with elastic sleeves, hood, zipped lining, huge pockets -- and a hat and gloves but I still had to pull the hood up over the hat because the wind was blowing so hard I couldn't keep the hat on.  The dogs started out all frisky and happy but even they were glad to get out of the wind by the time we'd covered the park.

Home and fixed Cheerios with bananas and hot tea for Hubby but he really wasn't able to eat.  In fact he looked sort of "green" but continued to deny anything was wrong.  Most of the cereal went in the garbage. 

The Research Center for Integrative Therapy where we do exercising and water aerobics was only open until noon but they had scheduled a water aerobics class for 10:30 so Hubby agreed to go practice his PT while I took the class.

It was heaven for me -- not so much for him.  He was sitting in the waiting room after 10 minutes of exercise.  The pool water had been heated up about 10 degrees from Tuesday and it was absolutely perfect.  About 10 more people were in the class than had been there Tuesday but the exercising felt wonderful.  Everybody who got in the pool went "Ahhhhh" as soon as they hit the warm water.  I was so jazzed by the whole experience that I wasn't even cold when I came back outside into the chill air.

From this --

-- to this

Back home Hubby requested a plate of candied sweet potatoes and mashed potatoes and gravy and a little cranberry sauce.  It was pretty clear the throat was bothering him and swallowing was proving difficult.  I had a lovely turkey sandwich while the boys ate the turkey neck and finished off the second turkey leg.  Pretty soon it will be time for a slice of pie, apple for Hubby and French Silk for me.   


I did do some online shopping today but we never left the house except to around the corner and down the block to the Research Baptist Campus.  I checked out swim shoes on EBay but couldn't tell if I'd like them so I went to Google and found a pair for $13 with only $5 for mailing so I bought them in black and pink.  Then I checked out swim suits -- mine is over 20 years old. Macy's wanted $164 for a suit in my size -- a plain black suit.  Wow!  But after doing a Google search I found that J.C. Penney's had then in my size on a Black Friday price with free mailing -- $35 and no cents.  They were even decent looking -- for bathing suits.  So I got an entire swimming outfit for under $55 and felt like I'd scored big time.  Hopefully this little shopping spree will continue urge me onward in my water exercising. 

Hubby is back in bed, feeling rather blah and I'm doing clothes and pots and pan washing from yesterday.  The football games are on the telly and the Kindle is being recharged because Amazon delivered a new book for me to read.  Luie is snuggled up with his papa while Gus is passed out from pain meds -- his teeth have begun acting up again (no matter how hard to tried to keep the infection away).  The only black spot on our horizon is that Gussie is scheduled for several extractions come Tuesday and after our last experience where he coded on the table, we are just a little bit worried. 

Thanksgiving Greetings

The turkey is roasting, the stuffing and candied sweet potatoes were made yesterday, the rolls are ready for baking, the Yokon Golds are sitting on the counter ready for Hubby's ministrations, the apple and French silk pies are in the pantry, the cranberry jelly is in the can, the Macy's Day Parade is on the telly and the football games are cued on the DVR -- what a wonderful Thanksgiving day we are having! 

We feel exceptionally blessed this year -- retirement and enough funds to keep the wolf from the door, Hubby's heart which continues to beat, doctors and medical staff which help us keep that heart beating even if irregularly, loving pups, walks in the park, a new gym keeping us both in shape so we can help Hubby continue to recuperate, family and friends who provide unconditional support -- we are grateful beyond measure for all these good things. 

May you too experience these joys in your life.  Keep the faith, my friends.  

Getting Physical

On my bucket list for things to do once I retired was joining the Research Hospital Brookside Campus gym.  Hubby calls it a spa.  Either way, it's a cool place with a fabulous pool for both swimming AND walking.  Even better, the pool is always heated to 84 degrees -- which makes it almost as good as bath water (not quite, but nearly).

When Hubby was prescribed physical therapy at the Brookside Campus, I went with him for the evaluation and a tour of the facility -- and though I had heard of the wonders of this pool, in person it was even better than I supposed.  And the real selling point (besides the warm waters) was the price:  $29 a month OR $290 for a year.  And the second membership came in at $250 a year.  How could we pass that up?  We joined immediately. 

It took me two weeks to work up enough courage to go to my first water aerobics class (all the classes offered by the center are FREE!!!!!).  I had read the descriptions of the water classes and I picked the one that looked the least energetic (no swimming required, feet are kept on the pool floor at all times) and daunting. 

Hubby refused to attend with me, of course (no water touches his delicate skin).  And the class was pretty informal -- it just kind of started with no big announcement and I had to ask if this was actually aerobics class and what should I do to participate. 

Only one man was participating.  Most of ladies seemed to be five to ten years older than me, one was maybe ten years younger, and one young thing kind of participated in the far lane but mostly did her own thing, running up and down the swim lanes. 

The pool has no deep end.  The bottom is all tile (unlike the YMCA's around here which have concrete bottoms) so it wasn't too hard on my feet, though I will need to get swim shoes. 

From the beginning exercise, walking with my knees and toes pointed out, pumping my arms, I found I was having trouble keeping up.  The knees don't like bending outward.  The jogging left me breathless.  By the time we were doing overland ski slides, I was exhausted -- and those old ladies just kept on moving. 

Our instructor was big enough to be a combination of Hubby AND me -- and she never let up.  The class was ONLY 45 minutes -- and I didn't make it.  I lasted 40 minutes before the knees, screaming said, "Quit or die!" So I shame-facedly climbed out of that pool and took my shower and went home. 

But I sure intend on going back.  This is exactly what I need.  No, it's not a diet plan.  It's an exercise regime in warm gentle waters which will help me build strength and stamina.  Next up -- I'm going to try chair yoga.  But Friday morning at 10:30 I'm going back for water aerobics.  My knees are demanding a rematch. 

The only thing that would make all this better is if I had someone going with me.  It's easier to motivate yourself into leaving home in a bathing suit (oh! the indignity!) if you know you have someone waiting for you. 

Testing Complete -- for now

We finished our latest round of testing with the pulmonologist around 10:30 this morning.  He was a sweet, young lad in a very adult suit and thoroughly knowledgeable and willing to communication at length.  The office, in the same complex as Hubby's cardiologist, was small so I sat in the waiting room while the testing took place but was invited in for the consultation with the doctor. 

Upshot:  Hubby does not have constrictive lung disease, even a mild case.  Hubby was greatly relieved hearing we were not adding in a new problem.  Hubby does have a red throat and so they believe he has on-going allergies, even if he does not admit to them (he never has, he never will) that can be handled with the nasal spray and over the counter meds which he is to take daily for here-on (Claritin and Flonase). 

Hubby does have sleep apenia and is going to be fitted for a CPAP machine that will include a humidifier to see if he can tolerate it.  I think all the physicians have worn Hubby down about this problem -- and assure him that he will both breathe better with it, as well as sleep better.  He now seems (thankfully for a stubborn old coot) open to the procedure, though whether he will actually wear one once he sees how big they are, is anybody's guess.  

All the tests show that the frozen larynx and the sleep apnea combined with the A-Fib and CHF have caused all Hubby's throat problems. 

The web has some good articles on the frozen larynx problem for pets -- it seems to appear most often in animals.  The technical name is laryngeal paralysis and, quoting from a pretty decent article on the subject:  in its closed position, the larynx prevents food and water from entering the windpipe, or trachea. When speaking and breathing, the larynx opens to allow airflow in and out of the lungs. When frozen the larynx causes problems when swallowing food (Hubby pretty much sticks to a soft diet now), changes in the sound of the voice, and difficulty in breathing -- all the symptoms that Hubby has experienced.  The solution is working with a speech therapist which he was doing in the late summer, but stopped when he couldn't function as the congestive heart failure worsened.  We must must start back with his therapy. 

On Monday Hubby wore a heart Holter monitor to keep track of his heart's electrical activity for 24 hours.  This was the simplest and easiest of the tests we have undergone except that you had to be fitted for it in the hospital at the cardiac unit which is in the middle of very long corridors in the bowels of our local hospital.  We turned the monitor back in at 8 a.m. this morning. 

Throughout all these procedures I'm learning more and more about what is causing Hubby's problems, especially with the throat congestion that has annoyed him so cruelly.  The larynx is the initial cause of the phlegm while the erratic and poor heart beat have exacerbated the problem.  Then add in the post nasal drip from the allergies and the poor sleeping from the apnea and you get a pool of misery in Hubby's throat that his frozen larynx cannot handle.  It just builds up and Hubby feels like he is drowning in it.  We finally, after five years of requesting help for this problem, actually been given a cause -- and to know that if Hubby is unwilling to wear the CPAP or take the allergy meds properly he will have this for the rest of his life.  Hopefully, the speech therapy, once we resume it, will also help Hubby learn to exercise his larynx and regain some of its function.  There is no magic pill and some problems we just have to accept and do the best we can to alleviate. 

The cardiac nurse team will now review all Hubby's tests and will also consult on the meds to make sure they are adequate and efficient.  Hubby will be fitted for a CPAP to see if he will use it -- as well as make sure the one he is given is helpful to him. 

Next week we meet with our GP and Hubby completed his physical therapy training. We both joined the gym at the hospital so we can continue to exercise and gain strength.  In early December, we meet with a second cardiologist to discuss some alternative therapies for the A-Fib.  Then we consult with the cardiology nurse practitioner about how the meds are working.  At the start of the new year we meet again with pulmiologist to see who the CPAP is going and with Hubby's own cardiologist. 

Currently, Hubby is struggling with being very cold -- undoubtedly because his blood thinning level, which should normally be at 2 to 3 has risen to level 4 (normal is 1 to 2 -- but his blood is thinned to made sure the heart has an easier time pumping) -- but we are still not in a dangerous zone (6 to 8). 

All Hubby's heart meds are now at their highest dosage point -- but he is no longer filled with fluid, his heart beat is within normal range, and his blood pressure is really good.  Stand up and cheer! 

Sister's Birthday

We celebrated on September 28 -- her actual birthday -- while we were visiting the Chesapeake Bay area.  Hubby and I planned as our gift to Wendy a high tea / luncheon at 3:30 in the afternoon.

We just downloaded the pictures from our camera -- because Hubby has simply been too worn out and sick from the Congestive Heart Failure to figure out the download process (he know how to download but I could never find the pictures once they had been put on the computer).  This afternoon, after we had a really nice morning of dog walking and health spa joining and some minimal Thanksgiving prep (ham baking and freezer clean-out), he was able to access the pictures and put them on my desktop.  So, here is one of the more fun things we did when we traveled to Virginia and Maryland this autumn.

Hubby and his little sister -- we are ready to set out for high tea

The tea was held at Reynold's Tavern in downtown Annapolis -- almost directly across from the naval school.  The tavern was built in 1747 -- 30 years before the Revolutionary War.  In 1935 the plan was to turn the space into a filling station, but instead the citizens of Annapolis decided to save the building and use it as a library.  In 1984, when the library needed bigger space, the tavern was leased to Historic Inns of Annapolis, a private company, who restored it to its original purpose.  The first floor tea rooms are very much like the original rooms of the tavern and upstairs are two suites and a bedroom for rent.  There is a cellar pub in the original kitchen and during the warm(er) weather, a courtyard for al fresco dining. 

Reynolds Tavern, Annapolis, Maryland

Tea Room on 1st floor

Each tea plate and cup was different

Tea has been served -- flowering tea for Wendy and a Hawaiian blend for me -- in the green pot. 

Quiche is the first course

Wendy, Hubby and Me -- we were having an "experience" and a really good time. 

Hubby did not partake of the tea goodies, but instead had a lovely chicken salad sandwich

Wendy after the tea back at the beach house

Big Brother and Little Sister -- we had had a lovely afternoon and now it was back to the beach house for a round of Heaerts. 

Hubby and me

We highly recommend the tea at Reynolds Tavern if you ever are in the area.  It was a lovely experience, cost less than I had imagined (not cheap but not budget busting either) and even Hubby had a nice time.  Plus, the location is right on the bay.  What more could you want? 

Wendy and me -- the beach house is on the right and yes! behind us is the view from the house -- the white pickets on the far right  frame the back porch where we sat every afternoon / evening.  Isn't this one of the loveliest spots on earth?