It's What They Don't Tell You That Matters Just As Much As What They Tell You; Uncertainty and Chronic Illness

When I know I am usually ok.  When I don't know I am all stressed out and usually not ok.  This applies to many life situations but especially to chronic illness challenges.

My Tweet About Not Being Afforded Access To My Prescription

For instance, the other day I went to the pharmacy to pick up my Coumdain (warfarin) and other prescription medication refills like I always do and have always done for the past three years.  When I arrived at the pharmacy counter the normally very communicative and courteous clerk was a little busier than normal.  I am a patient person so I waited.  When she handed me my medications, the warfarin was not included.

I methodically looked through the plastic bottles each filled with pills and repeated out loud what I was thinking. "Metoprolol, Losartan, Lipitor," and paused.  "What about the warfarin?" I asked.

The pharmacy technician was already back to her table working on another order.  She turned quickly and replied, "Oh, they won't allow me to refill the warfarin until the 30th, they won't let me do it."

Right then and there I should have taken the initiative and asked, "Who is 'they'?"  I should have made it very clear that I needed my warfarin to stay alive because of my artificial heart parts.

But in the moment, with lots of people standing around, her being so busy and my own most unuseful habit of having a 'compliant' attitude with authority figures like doctors, officials and pharmacists, well I just said 'OK', turned and left.  My stomach was becoming tightly knotted.  I wanted to hop on my bicycle and return quickly to the safety of my house and figure out a solution to this cluster mess of not having an important medication.

I hate stress and stress causes me lots of physical issues, especially those relating to my heart.  I was  stressed.  I did not get my warfarin like I should have.  Somewhere out there in America's health care complexity someone or some computer program algorithm said 'Kevin has to wait until the 30th for his warfarin refill'.  The 30th was seven days away.  I had three days of warfarin left.  That meant I would be out of the medication that keeps clots from forming on my heart valve.  I could stroke out.  I probably would stroke out.  I could or would die.  I did not know what was going to happen but I knew it was going to probably be bad.  More totally unnecessary stress.

So I tweeted out to the world my frustration.  After all I had a year's worth of refills and had never been denied before.  More importantly I had a family to care for and I was NOT going to roll over and die because some stupid clerk in a swivel chair in front of a computer somewhere out in health care space had decided to not issue approval for my medicine.

If I couldn't get the warfarin and a clot did form on my valve and I 'stroked' out then someone would pay.  I wanted to make this clear to the pharmacy.

Then a thought popped into my head.  Had I been my old, pre-dissection self I would have caught this right away.  Unfortunately, as I have blogged many times about before, my time during open-heart surgery on the heart-lung machine has given me 'pump head' syndrome.

Quickly, for those of you like me who can not remember a whole lot, 'pump head' is a condition where the heart-lung pump system allowed small air bubbles or particles to enter the brain blood vessels causing blockages and resulting in cognitive issues, like memory loss and confusion.

In pre-dissection days my lawyer training would have prompted me to right away ask, 'Who is 'they'?"  But it was only after coming home and stressfully pondering the entire medication situation thing that I realized I never was told who 'they' was.  I wanted a face or a name associated with the 'they' that was potentially going to decide if I lived or died.

I was going to take 'they' to task about my refill.

The 'they' issue has always been one of my OCD issues.  Ask my wife and teens.  I would always ask 'who is they?' when the family would use the word in a sentence.  A distaste for ambiguity is a common trait among lawyers.

Unfortunately, I am not as quick as I used to be - then again this slower purposefulness may be good too because it has made me less intense and aggressive. But I digress.

So a quick phone call to the pharmacy was made and I explained how I was very worried I might stroke out, yadadada…  "Tell me please, who is the 'they' that would not allow my warfarin refill?" I asked the just as now as me confused pharmacist.

Fingers taps on the computer keyboard dominated the momentary silence over the phone as she searched my records.

"The 'they' is your medicare insurance company, Humana," she replied.  "Humana won't pay for your refill until next week. But we can refill your prescription under our four dollar program as we did before your medicare began" she continued. "Would you like me go ahead and refill for four dollars?"

I breathed a huge sigh of relief.  I could get my warfarin.  I was not going to stroke out.  I would live!

Then the anger overwhelmed me.  I wanted to shout, "Hell, Yes! It is only four dollars versus two dollars!"  Pause.  Deep breath.  Instead I calmly thanked her so very much for solving the problem, and tweeted…

The 'Thank You For Refilling my Warfarin' tweet

If only the busy pharmacy tech had just told me what the busy pharmacy tech had not told me.  Instead of saying "they won't allow me to refill your warfarin', the busy pharmacy tech could have said "your present insurance carrier won't allow the warfarin refill for another week, but we can refill under your old method of buying warfarin since you have a valid, up to date prescription with refills."  Problem would have been solved.

Partial statements that are technically correct but offer incomplete information are extremely dangerous to patients in today's health care business.

Unfortunately the pharmacy debacle has not been the only recent 'it's not what they said but what they did not say' challenge.

As I have been blogging about recently, something inside my body tore and I really bled a whole, whole lot of blood which pooled about my waist.  The emergency room doctor informed me I had a 'hematoma' and she gave me some pre-printed literature with her comments added. "rest arms and shoulders.  Apply ice pack 4-5x daily for 20 minutes @ a time".  She said loud and clear "You have a hematoma.  I would like you to rest your arms and shoulders and apply an ice pack four to five times daily."

The literature was lengthy with lists of finer sized print.  I incorrectly assumed the most important information was what was highlight bold in large test - the "rest arms and shoulders.  Apply ice pack 4-5x daily for 20 minutes @ a time" statement.

So I came home and for a week applied cold ice packs to my grapefruit sized hematoma as instructed.  I did read the rest of the literature but as soon as I set the papers down I pretty much forgot what I had read (the pump head issue).

After a week of cold applications and no shrinkage in size of the hematoma I was worrying and stressed.  The bleeding had mostly stopped and the large bruise was going down in size slowly but the lump was still on my shoulder blade.

Then yesterday my home health care nurse came by for a surprise visit.  Ted and I became good friends after my initial dissection recovery and subsequent episode with endocarditis.  He is the one who made me go to the hospital when my chest began to swell with infection after the first open heart surgery.  I value Ted's practical experience based opinions.

We talked about yams and football and then I shared my recent hematoma experience.

"How are you treating the contusion?" he asked.

"With an ice pack," I replied and pulled out the cold blue sack of frozen liquid from between me and my recliner.

"Just ice?"

"Yes, that is what the emergency room doctor told me to do."

Ted sighed. "Kevin….never mind" he said and continued, shaking his head.  "Do what the doctor told you to do."

I could read his body language and knew he would never recommend anything contrary to a doctor's orders.  "OK Ted, you were right about my endocarditis when the physician's office was incorrect, so tell me what you think."

"Well, I usually like to treat a contusion with warmth and heat.  Cold alone will constrict the capillaries and prevent dispersion of built up fluid.  Cold also can damage the nerves."

I shook my head.  "That makes sense."

"Try alternating a hot pad and then cold.  Heat will improve circulation in the area, improve circulation and move the fluid build up."

Over the past twenty four hours I have applied both heat and cold, alternatively and the hematoma has
shrunk considerably.  Intrigued, I went back and looked at the discharge papers I'd received from the emergency room visit.  The "rest arms and shoulders.  Apply ice pack 4-5x daily for 20 minutes @ a time" was very visible.  I also clearly remembered the doctor telling me this.  She never mentioned heat.

Yet buried in the finer print was a few words about using heat too.  The doctor had never said this to me though.

And so it really is what 'they' don't tell you that matters just as much as what 'they' do tell you.

Sometimes I expect too much from others, especially being in the disabled condition I am in.

But in the future I am going to try to listen to all the words 'they' say.  And I am also going to listen to all the words 'they' don't say.

If I don't forget to.

Dissected Aorta and Hematomas, Keeping a Heart Valve Clicking also can Cause Bleedout

Hematoma is what the doctor at Florida Hospital in St. Augustine called the lump on my back.  It was very large.  I am not sure how it got there but after three days of pain I had my son drive me to the ER.

Bleeding from recent hematoma

I'd never really researched what a hematoma was before.  The ER doctor gave me a couple information sheets about the causes, symptoms and cures and sent me home with written instructions to rest and place an ice pack on the grapefruit size lump, four or five times a day.

Hematoma is generally defined as a collection or pooling of blood outside of normal blood vessels, due to an injury where internal bleeding has occurred.   My injury occurred around my right shoulder blade.  At the worst, I estimated that I bled about a half gallon of blood that eventually collected and pooled around my waist.

This was a big one.  I lost so much blood that I could only walk a few steps without having to sit down and rest.  However because of my warfarin (Coumadin) regime to keep my mechanical heart valve from clotting up, any trauma - large or small - could precipitate spontaneous internal bleeding and fluid collection.

Most of the time for me the hematomas are small to medium size and resolve themselves within several months.  This larger one is being persistent.  It has been two weeks yet is still bloody looking and quite swollen near the original injury site.

Importantly, though hematomas are collections of blood they do not have blood flowing through them.  This opens up the possibility of infection setting in where the blood is pooling.  Ugh.  After my six month episode of endocarditis and fungal growth on my Dacron aorta graft I really am in no mood for another bout with heart infection and peripherally inserted central catheter line with anti-everything treatment.

So I am taking lots of vitamin C and turmeric and supplements, staying well bathed and eating good foods and resting in my recliner without moving much at all.  I've seen the ER doctor and my cardiologist also.

My cardiologist says to watch the size of the hematoma closely and if it becomes hot or grows in size to seek medical attention immediately.

I want to stick a sewing needle in the lump and allow the fluid to drain but of course I would not because of the risk of infection.

To top all this off my connective tissue disorder (Marfan Syndrome) subjects me to daily situations where I can bend over, reach up or do any number of regular, normal body movements and I'll tear a muscle or ligament or something inside.

Then with another tear the bleeding starts again.  Another hematoma.  Double whammy.  Warfarin and Marfan.  Tear bleed, tear bleed, tear bleed.

And each time a tear occurs and bleeding starts I always foremost wonder it I am bleeding out from an aneurysm; or 'is this the big one?' as Fred Sanford eloquently said.  After all, my dissected descending aorta is... paper thin.

Life with connective tissue disorders and anti-coagulant medications is a challenge.  Yep, it is the new reality for me.  But I am also so very glad to be alive to experience it.