Today I Turn Five.

Apologies to anyone who has read previous entries on this. Apologies also for the length of this entry (believe it or not, I had to leave things out because it was getting too long). I have never before written all this down at one time, in one place. Today I needed to. I reserve the right to, just for today, obsess on this a bit. Today is my adopted birthday. I turn five years old today.

Five years ago today I was a third year veterinary student. It was Friday.

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●The Beginning

It was my husband’s forty-third birthday. We had reservations at a well-known restaurant downtown, and then tickets to the ballet. I usually wore jeans and a tee shirt to school, but I was dressed up in a tan pantsuit. I was exhausted. I’d been exhausted for weeks. Exhaustion is my usual reaction to stress, and vet school had plenty of that. I remember having trouble climbing the stairs up from the subway that morning. I had to stop and rest halfway. I went through classes fuzzy headed, and had to be nudged when the last class of the morning was over – I hadn’t noticed lecture had ended.

I had half a turkey hoagie for lunch, and ate it alone. After lunch, I ran into a friend. I couldn’t remember her name. I remember feeling very embarrassed, and very tired.

Early afternoon, I and the two other members of my surgical team went to check on our surgery dogs (I was taking a surgery elective, and my patient needed a quick physical exam and a walk). I was exhausted after walking up the two flights of stairs to the kennels, and had a bad dizzy spell on my way back to the student lounge. I remember actually staggering the last steps into the lounge, and hoping nobody had noticed.

By the time I got to the lounge, I was completely out of energy and fuzzy headed. I told the two friends that I met there that I just had to rest a bit, and flopped into one of the chairs. Instead of feeling better, I got progressively more fuzzy headed. I was too tired to open my eyes, and when I forced them open it was like looking through a grey tunnel. I realized that I could hear myself wheezing, although I wasn’t aware of being short of breath. I remember saying to the friend sitting closest to me, “Something is wrong. Get me help.”

I heard things happening around me. Someone got a canister of oxygen from the veterinary hospital and set it up with a makeshift mask. The woman in charge of student affairs came down to the lounge, and I remember her asking me if I felt sick. She rocked me forward in my seat and helped position me over a trash can in case I threw up. I remember trying to spit something out of my mouth into the trashcan. It was foamy and red.

●The Emergency Room

The Fire Company came. They set me up with a real oxygen mask, and sent out a call to the 911 dispatcher that they’d sent the wrong code, and it was an ambulance that was needed. I was aware of all this, but it didn’t bother me. I knew that the red foamy stuff meant congestive heart failure. I wasn’t really worried about that either. I knew that one of the more common reasons for these signs in people my age was drug abuse. I recall being vaguely upset that they might not believe me when I said I didn’t use drugs.

The ambulance came. I don’t have a clear recollection of being carried to it, but I remember clearly being in the ambulance. My senses all told me that I was hanging upside down from the ceiling of the ambulance. I knew this wasn’t true, and tried to force my perceptions back into place, but my mind wasn’t buying into it. The sensation of hanging was so real that I felt my hair hanging down. I remember the tech in the ambulance having trouble getting the IV in.

The university hospital was a block away from the vet school. I remember the ambulance tech writing my husband’s work number down on the sheet of the stretcher I was on. He promised to personally make sure he was contacted. My husband was over an hour away, and I wanted him to have a chance to see me before I died.

Memory becomes sporadic after that. I remember perhaps a dozen people about my bed. Did I ever use drugs, someone asked. I said,”No, never”. They didn’t ask again. Someone placed a black mask over my face that smelled of rubber. They explained they were going to insert a tube in my throat to assist my breathing – was that OK the doctor wanted to know. I remember shaking my head in agreement. I don’t remember being intubated. I don’t remember much of anything after that. Not until the pain.

I woke, and I couldn’t move. My head wouldn’t move, my eyes wouldn’t open. There was pain, absolutely indescribable pain, in my left groin. I screamed, but there was no sound, no feeling that I’d even made a noise. The feeling of pressure and pain in my left groin worsened, until that was the only thing in the universe. The pain went on forever. A small fraction of my brain, in the back of my head, wondered why I wasn’t dead yet. The rest of me wondered if I’d thrown a blood clot to my brain and had a severe stroke. I couldn’t move, couldn’t speak, and the pain wouldn’t stop. I remember just giving up, giving in to the pain, and that was all there was to the universe.

●Cardiac ICU

I woke up again. There were perhaps a dozen people at the foot of my bed, talking. I heard a voice say “Look who’s awake.” I saw my husband step up to my bed. It was bright in the room, and I could hear the sounds of equipment behind me. I still couldn’t speak. My eyes itched.

I raised my hands to rub my eyes, and my hand was batted down by someone to the left. I was told,”You need to leave the tube in place.” I had a brief surge of resentment – I hadn’t even realized I was still intubated, and I’d had no intention of pulling the tube out. My eyes still itched.

I reached my arms out as far as they’d go, and began to raise my hands again. I tried to demonstrate that I had no intention of going anywhere near the throat tube, that I was shooting for a point above that. I heard someone tell me again, “No! You have to leave it alone!” And then I heard a nurse say, “I know what’s bothering her. Give me a moment.” The next thing I knew, someone was gently rubbing my eyes with a washcloth. I think I fell back to sleep.

Later … more people in white coats. “Wiggle your toes, wiggle your fingers, lift your arm, wiggle your ears.” The last was a joke, but I wiggled my ears. It brought a laugh from the crowd.

●The Diagnosis: Damage Report

It was determined that I didn’t require a breathing tube anymore and it was removed. A doctor came in, and told me what they knew so far. I had cardiomyopathy, and the muscle of my heart was inflamed. Because it was sick, it wasn’t working correctly, beating inefficiently and not supplying enough blood to the rest of my body. They didn’t know what caused it, they didn’t know how bad the damage was, and they didn’t know how the disease would progress. I was on a heart transplant list as a precaution. I was in the cardiac critical care unit. I found out later that the doctor telling me all this was head of the cardiac transplant department in the hospital.

One of the treatments they’d tried in the ER when they were working on me was to insert a catheter in a vein in my thigh and direct it up the blood vessel to my heart. A small balloon was at the end of the catheter that could help my heart beat more efficiently. It was important that I didn’t move during this procedure, so they had put me on a drug that paralyzed all the voluntary muscles of my body. That was the period of pain in my groin that I remembered, the period that I couldn’t move and couldn’t scream. This procedure didn’t work, and something went wrong. They had been worried that I might lose my leg because of this, and were keeping an eye on that as well.

●Additional Complications – Heparin Allergy

Normal blood flow did eventually return to my leg. Over the course of the next week I started spiking fevers. They couldn’t find why. I was otherwise stable and so I was released from the ICU and put in the cardiac ward. My blood pressure crashed, and I was brought back into cardiac ICU. They rebalanced my medication, and I was again moved out of the ICU into the regular cardiac ward again. I was still spiking fevers. My platelet count, which had been dropping, became dangerously low. I began to form bruises all over my body. Even the slightest pressure would result in a bruise by the next day. They ran test after test, and then found the answer – my body had developed antibodies to heparin, a standard drug in treating cardiac patients.

When your heart stops beating efficiently, it causes the blood in its chambers to flow turbulently rather than smoothly. This can make small clots form in your blood that your heart then pumps out. These can block arteries anywhere in your body. If they get caught in your brain, it causes a stroke. If they get caught in your lungs, then they can cut off blood to that section of the lung and make it hard or impossible for you to breathe. Heparin helps prevent this.

A side effect of heparin therapy is that is causes some people to have a lowered platelet count. A further side effect is that it can cause a small percentage of some of these people to actually form blood clots in the veins of their arms and legs, blocking venous blood flow. This is called a “Paradoxical reaction”, because instead of preventing clots, the heparin begins to cause them. The great veins in both my legs became blocked, and my legs swelled from fluid that was trapped in them. A major vein in my right arm also became blocked, and all my IV’s had to be put in my left arm. An around the clock watch was set on me. If a portion of the clots broke off from my legs, then it would travel to my heart, which would send it on to my lungs. Depending on the size of the clot, it could block part or all of my lungs, and could kill me within minutes.

●Blood Clots and More Allergies

Plans were made to send me to another hospital, which was running a study on an experimental drug that they hoped would work like heparin but which wouldn’t cause the allergic reaction I was facing. I felt helpless to do anything but go along with the flow. I couldn’t receive the experimental drug at my hospital because they weren’t part of the study and did not have permission from the FDA to use this drug. Just a few hours before they were set to move me by ambulance, my doctor asked me how I felt about the move. I told him I understood, but that I also understood that the very act of moving me could dislodge a clot, and that this move could kill me. I told him I was frightened.

I don’t know what he did, what strings he pulled, what favors he called in, but I was not moved. He got the experimental medication to use on me in the hospital where I was.

I was back in Cardiac ICU again with the around the clock watch still on. I was only permitted out of bed to use the commode. They put me on a drug called “streptokinase” to help the clots to dissolve. People develop allergic reactions to streptokinase fairly easily though, so after a short regimen of that my doctor said he wanted to move me to urokinase, a related drug that he told me seldom causes an allergic reaction.

It was night, when they started the urokinase drip in my IV. Within fifteen minutes I started having the shivers. They were intermittent, and my sisters were visiting, so I ignored them. The shivering became more persistent, and my sisters started to notice. I told them I was just cold, and hit the call bell for the nurse. There was an emergency down the hall, though, and no one came immediately. I began to shake uncontrollably, and began wheezing and hyperventilating. My older sister went out to the hall and flagged a nurse down. By the time the nurses got there, I was in full anaphylactic shock. They stopped the drip, got my reaction under control. The next day they started me on yet a third medication, TPA, to try and dissolve the clots.

●The Next Complication

I remained in ICU. I was still strictly confined to bed except for one thing (as previously mentioned). While getting out of bed at ten o’clock in the evening for that one thing, I was suddenly short of breath. I called the nurse (who came immediately). She took one look, stuck me back in bed and paged the special radiology team to come back to the hospital. Several specialized visualization tests were run on my lungs. They discovered I had thrown five small clots to my lungs and lost perhaps a third of my lung field.

I was taken to the operating room, and a surgery team was called in to insert a Greenfield vena cava filter. This is a filter that is inserted in the biggest vein of your body, the one that carries all the blood from your body to your heart. It is placed by inserting a catheter into a big vein in your leg and carefully moving it along the blood vessels while watching the catheter’s progress with a special viewing system. The team knew I was a vet student, and so they agreed to turn the screens so I could watch as they worked. The catheter team was great, answering questions and treating the entire thing as a classroom exercise while they worked on me.

Things suddenly got quiet. My doctor explained that he had to concentrate, and he turned the screens away from me. The room went from very chatty to dead silent. I knew something was wrong, but didn’t see any point in asking. Later, after everything was over, the surgeon told me they had encountered a clot in my vena cava the size of my thumb that they had to work around. If they had dislodged that by accident, it would have killed me.

●Healing

The new heparin replacement worked. I stopped spiking fevers, which were related to the allergic reaction to the heparin. The clots began to dissolve. They began to encourage me to get out of bed and take small hikes in the hallway.

A team came in to do an ultrasound on my heart, so they could judge how much progress it had made in healing. I remember the tech checking my wrist ID twice. A year later, the same tech checked me again for my follow-up visit. She admitted then that she’d checked my bracelet ID because she was sure they’d sent her to do the wrong patient; she’d read my charts and knew what to expect, but the ultrasound was normal. Turned out she was in the right room, but she had a hard time believing it.

Over the nurses station was a white board with all the patients’ names and room numbers on it Those of us on the heart transplant waiting list had a red heart in front of their name. The red heart was erased from my name the day after the ultrasound.

I was released one month, to the day, from the day I was admitted to the hospital, April 21st. I had lost thirty pounds in thirty-one days. I was in cardiac physical therapy for eight weeks. I returned to school in early July, and finished my senior year of veterinary school.

It took me two years before the twenty-first of a month got past me without me noticing. Even now, I usually notice when it’s the twenty-first. It always makes me pause to reflect, if only for a few moments.

●Another Experimental Treatment

A final irony: During my hospital stay, I agreed to participate in a trial of another experimental procedure. They were testing to see if gamma globulin infusions would reduce or prevent heart damage and promote healing in patients like me. It was a double blind study, which means that my doctors didn’t know if they were giving me the test treatment or a placebo. When my heart healed, against all odds, several people came and privately told me that they were sure I’d gotten the test treatment, because there was no other answer for why I had gotten better. Three years later, when the blinds on the study were released, we discovered that I’d gotten the placebo treatment, not the test treatment.

●Today: The Bottle

I have an empty IV bottle with perhaps thirty signatures on it. It’s the second bottle of the experimental heparin substitute they gave me, Danaparoid Sodium, dispensed on 4/3/97 to CICU Room/Bed 0862-A. I put tape on the empty bottle, and had it on the table by my bed. I tried to get signatures from every nurse who came in, every orderly who straightened my room, every doctor and specialist who came by, every consultant who visited during the second half of my hosptital stay. I, of course, completely missed the people in ER, and the early specialists who worked on me. I never got a chance to get to the people in the labs who worked on the blood tests, nor the people who did the radiology/ultrasound interpretations, nor the pharmacy people, nor the neurological consult people. I figure that I perhaps got the signatures of about a fifth of the people who worked to save my life during that month. This bottle sits on my desk at work, front and center. It is a reminder to be humble. It is a reminder to be thankful. It is a reminder of exactly how fragile life is. It is a reminder that if I’d gotten sick a month earlier, I might well have died, because that drug wouldn’t have been available. It’s my own private memorial, that I might never forget.

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Tonight The Professor has to work. I’m going home, dressing up, and taking myself out to my favorite restaurant. Tonight I’m going to celebrate life. Tonight I’m celebrating my fifth birthday.