Getting to Know Your Medical Nomenclature, or, Welcome to the Land of the Pulmonary Embolism

Life is a random swirl of occurrences, epiphanies, and moments when you catch your breath and wonder: how was I chosen? Such is the case with what's gone on with my mother since August of 2005 . . .

One morning that August, I rang her as I usually did and got her answering machine, rather than her, live. Thinking she was retrieving her mail from outside, I left a lengthy message, waiting for her to pick up. When she finally did, she sounded very odd when she spoke: slurring, incoherent, unable to clearly state how she was feeling. I didn't like the way she sounded, so I told her I would drive down immediately to take her to the hospital.

We arrived at the hospital, and many hours passed as I waited outside the jungle of the Emergency Room, awaiting word of my mother's condition. The doctors detected a change in that day's EKG versus one taken a number of years previously, but that left wide open a realm of medical possibilities. After further hours of waiting, the doctors finally concurred that admission for additional tests was the thing to do. As much as my mother and I disliked the idea of her being in the hospital, we still didn't have an answer better than the medical professionals.

It took three days and a CT scan to finally confirm the diagnosis the medical professionals were slowly driving towards: a pulmonary embolism. Additional tests were unable to determine from whence the clot was thrown: the legs were clear of clots. The only thing to do was take the standard medical route to go ahead and treat the PE with anti-coagulants. My mother was started on Coumadin, and instructed on the proper way to self-inject Lovenox. When medical staff determined she was able to self-medicate the Lovenox, she was discharged on a Saturday.

On waking on the ensuing Monday, my mother noticed a dime-sized, painful bump on the outside of her right foot. Later in the day, she noticed it'd grown in size, and pain. Meantime, I had rung her to organize a time to take her to the Medical Center Lab for the PT/INR (clotting levels) blood draw, and we quickly determined we'd need to make a return visit to the ER instead. On arriving, the staff visually diagnosed a hematoma, and sent us upstairs to the Urgent Medical Clinic. In order to transport my mother to the Clinic, I had to scrounge up a wheelchair, as walking was too painful, and I had to leave ER’s chair with them.

When the Clinic MD saw the foot she confirmed that it was, indeed, a hematoma. The doctor recommended first going to the other facility’s Lab to get the blood draw for the INR level, then to go home and elevate the foot, and . . . well, to just keep an eye on it. And so, we scrounged up another wheelchair to ambulate out of the facility, in order to go get back out to the car to go to the other facility's Lab.

On the next day, Tuesday, the hematoma was exponentially larger and painful. My mother and I went to the Lab again for that day's blood draw in order to continue to monitoring the INR level, but it was even more difficult for her to ambulate from the house to the car. On returning home, I went out to pick up some things at the supermarket, during which time the Medical Center’s Coumadin Clinic called with the first INR results: 6.8 (it should have been around 2.0). My mother told the Coumadin Clinic’s pharmacist of our previous evening's trip to the Urgent Care Clinic, sharing the diagnosis of the exponentially growing -- and increasingly painful -- hematoma. The response from the pharmacist was to skip the Coumadin dose for the night to try to bring the INR level more in a normal range (logical), and to "keep an eye" on the hematoma. She showed no concern about it, and gave further no instructions regarding it.

When I returned from the market, and my mother told me what transpired in the call from the Coumadin Clinic, I was, frankly, surprised at the Coumadin pharmacist's lack of concern. Although I was flummoxed at the pharmacist’s laissez-faire way of treating the situation, I placed my trust in her judgment and knowledge. My thought was that she, as a professional in this clinic, manages these cases on a daily basis, and would know if something was aberrant and to be worried about. I went home, hoping elevation of the foot and not taking the Coumadin would somehow now stop the continuing growth of the hematoma, but the next day would prove me wrong.

I arrived on that Wednesday to take my mother to the Lab for the blood work, as well as for a Coumadin Class; I wryly refer to it as “Get to Know Coumadin, Your Friendly Rat Poison.” I found the hematoma to have grown even larger, covering the whole outside of her foot, even going above the ankle, and very swollen and bruised looking. I was shocked and frightened by what I saw, especially when my mother could barely make it out to the car.

We arrived at the facility, with me running in for a wheelchair (she’d needed the use of one since the first day of the hematoma). I went to park the car, and returned to take my mother to each of our two errands.

We sat through the Coumadin class, having no major questions about it, except how it the stuff might make a foot expand exponentially. After the class was done, I called one of the pharmacist/instructors over to ask her to please look at my mother’s foot, and to provide guidance. She reflexively reeled back in horror from the sight of my mother’s foot: swollen, multi-hued, and something that should not happen in nature. Her response was that we should see a doctor as soon as possible; I went about making that happen, as it was the first bit of common sense I’d heard in days.

The pharmacist had directed us to a non-existent Urgent Care Clinic in the facility, which only delayed our eventual arrival at my mother’s internist. Once there, I begged the receptionist to fit us in, and she gave us an appointment two hours hence. I importuned her to please get us in as soon as she could, displaying to her my mother’s foot in order to illustrate our level of urgency. She then fit us in immediately. By giving us an early appointment, she lessened the stress level, but I especially wanted someone to see to my mother’s palliative needs. My mother had been in steadily increasing pain from the moment the hematoma made itself known on that Monday, when it was the size of a dime, and now it consumed the side of her foot and ankle.

When the MD entered the examination room to see us, we thanked her with everything we could muster, but we also explained our level of desperation. The doctor gave us a mild scold about upsetting the structure of the daily schedule – about which we felt bad – but, as I said, we were desperate. The doctor then set upon examining my mother’s foot, and didn’t like what was before her.

We explained that we hadn’t come earlier because all other professionals we’d seen or talked to about the hematoma had only recommended elevation or “keeping an eye” on it. The doctor said we now had few options from which to choose, but the best one for my mother was hospitalization. We both jumped at it, which was quite unlike us. The doctor said she’d call admissions to arrange it, so I took the opportunity to run to the cafeteria to grab some lunch things. There was no telling how long the wait would be until a room would be available, so immediate needs had to be seen to.

A room came open after about two hours, so we thanked the doctor, and I took my mother downstairs to the car, and then to the hospital. I ran into admissions, who, as it turned out, had their own wheelchair (bless ‘em!), and grabbed it to retrieve my mother. Back out again for me to park, back in again to complete the transaction, until . . . 3:00 P.M. As my mother finally lay in her hospital bed and she said, “You know you’re in bad shape when you _want_ to be in the hospital.” I could only agree with her. However, she really was in bad shape. She couldn’t ambulate around her own house to perform any tasks due to the pain of her foot. The hospital was her only choice, and she was there for the second time in two weeks.

Being that she lived less than a mile away, I ran back to her house to grab some books and other necessities, as well as to let the neighbors know what had happened. By the time I returned from an errand of only half an hour, I returned to find six doctors huddled around my mother’s foot, looking at it cautiously, as if it were a UXB (unexploded bomb). One podiatrist equated its size with that of a football. I defer to his professional opinion, as I came to know and respect him more and more as he continued to work my mother’s case.

Finally, two hours after admission, and after the doctors cleared out, the nurse offered pain relief. My mother hugged her; if she hadn’t I would’ve. It was a really good thing the nurse offered it, as I was getting close to pulling a ‘Terms of Endearment’ moment, going to the Nurses Station and stridently _asking_ for palliative relief for my mother (a la Shirley McLaine’s character in the film, in care of her daughter). My mother had been in agonizing pain for three days, and with a foot the size of a football, she needed relief of a type they were there to provide.

That evening, in order to bring the post-Coumadin INR of 6.5 down, and to try to control the bleed, they gave my mother plasma and Vitamin K. That treatment brought to the INR sub-3.0 range, which allowed the podiatrist the ability to aspirate the hematoma of some of its excess blood with a needle. He was able to draw a small amount, but, being there were so many ‘pockets’ of blood, it would be impossible to aspirate the hematoma completely.

So, on Saturday, three days after being admitted, I arrived at the hospital to find my mother very upset. She said that the resident MDs had done the morning rounds, and came to see her with “good news”: They told her she would be able to go home. That particular news irked me, in fact, it _really irritated me, as my mother hadn’t been able to set her injured foot on the floor since she’d been admitted in the hospital. Our question was: if she was still unable to ambulate at the hospital, how was she to manage at home?

I asked the nurse (who was also none too pleased about the situation) to please page any available resident. When the doctor arrived, I pointed out the bleedin’ obvious to her: How’s my mother going to get around in her house if she can’t get out of bed? The doctor, a little taken aback at my questioning her decision, asked me to please wait while she consulted with the attending, returning with word that Physical Therapy would come to assess the situation, and make a recommendation. And so we waited . . .

The PT arrived, took a look at my mother’s foot, shook her head, and asked my mother if she would try to take a walk using a walker. Seeing that my mother couldn’t put any weight on the injured foot, the PT recommended my mother be sent to a care facility for PT and rehab.

And thus, we dodged yet another impediment placed before us by the HMO. That week was the first time I ever became respectfully confrontational with the people who were dealing with my mother’s health care. It started with not taking the later appointment to see the doctor on Wednesday, knowing the urgency of the situation. Next, questioning the resident’s decision to send my mother home was the first time I directly confronted the decision-making ability of a medical professional.

The experience days earlier (could it really have been just days earlier?) with the lack of action of the Coumadin Clinic pharmacist – and my subsequent distrust in her ability to do her job – had caused a quiet sea change in my way of thinking. I became a very active advocate for my mother’s medical care. As knowledgeable as my mother is (and she is), and able to question things, sometimes you need a bulldog: someone who grabs on with iron jaws and won’t let go. When a person is ill, the bulldog can take on the doctors, social workers, accounts receivable people . . . Everyone asking questions of a person who may, or may not, feel up to taking on a lot. After all, the person _is_ ill enough to be in a hospital. Let the coyote protect the wounded from the vultures . . .

And so, my mother was discharged to the care facility for physical therapy. We had a specific one in mind that was close to her home, where a neighbor had stayed a number of years before. She was sent to this facility. We didn’t realize that this wouldn’t be the last visit to this facility, the next being a year later. More on that later . . .