DVT – the test for them is scaring me

On May 29, 2009, my life spun almost into oblivion. Well I was actually in oblivion as only a coma can put you there. In the first, few days after rounds of tests seemingly marked this as an episode of unknown origin. Moreover, we smiled and laughed for a few days thinking, wow this thing has ended. I was transferred to the Rehabilitation facility in the same hospital to recoup and start re-building my life. And for a while, I was gaining strength: Able to sit up, talk, write, read. My husband and kids bringing games to entertain me, keep me aware of my surroundings.

But scarcely five days after I was exhibiting symptoms doctors were attributing to VAP pneumonia associated with my being on a ventilator for eight days. But my body was telling me otherwise. Quickly the talking was replaced by breathlessness and hoarseness. I started not being able to sit up for any length of time. My chest hurt, my legs felt like lead. My headaches were back with a vengeance.

I stopped smiling, feeling weaker by the hour.

In the middle of the night, I was wheeled into Radiology for a Nuclear Stress test. Right pulmonary effusion was stated, but ruling said it was inconclusive. My doctor, a very focused young man I had seen grow from Resident to Attending status with an incredible bedside manner, was not convinced by the other doctors who insisted it was pneumonia. He kept at it; first ordering Doppler sonogram of my veins in my legs. Nothing there said the tech. But then it must be pneumonia, sah? He shook his head, no one more test. The air was harder to breathe by the moment…so my ever-present companion; the oxygen tank became my lifeline. Intubation was not far off again. I was starting to look a bit bluish…

So I was put on steroids for 24 hours, to premedicate me for CT scan with contrast. Meanwhile, while we waited, I was started on Heparin and Levonox to be injected into my belly twice a day. Now I know how a diabetic feels with daily insulin injections! I hate the sight of needles now, almost childish fear of them…The next day early morning in a wheelchair, because I could not stand a minute lying down; I was brought again to Radiology for the scan. The doctor administered the contrast push style. My body went from cold to hot in seconds, my head swimming in an unpleasant rush.

The test was started, I was told to hold my breath. You kidding, I thought! What breath, I am already bluish with a lack of it!

A few more “hold your breaths,” and the test was over. Quickly I was taken off my prone position and onto the wheelchair. I have never felt more tired than at that moment. My view seemed almost tunnel vision like. Every sound started to sound so, oh so far away. I do not even recall the trip back to my bed.

A few hours later, it seemed my doctor was sitting by my bed. “How you holding up kiddo?” All I could do was lift my hand slightly. “Well you’ve done it again,” he said smiling weakly. Yes, that was a weak smile, an effort to give me some measure of comfort. “You have bilateral PEs.” It took me a moment to understand, sorry my brain was adamant on locking down. Just writing about it now, seems almost surreal. Bilateral Pulmonary Embolism… Killer words… “You have in both sides in your lungs massive blood clots. We are going to increase your medication. It’s what will save your life.”

Until today, I am not sure I understood the depth of meaning those three words. Many, including my husband almost gasped despairingly upon hearing the diagnosis. This was one of those things that killed you, even before you have had a chance to name it. This was not good…

I must have blanked out for a while, because when I realized again, where I was, only my husband and kids were sitting around me. I was having problems with depth perception. To me the doors looked nothing like portals into another area. In fact, they seemed painted on the wall. I did not see the world in three dimensions. Weird. I would bump into walls and doors for quiet a while afterwards. Realizing where I was in relations to the walls and floor was hard.

They looked at me with the look I have seen countless of times, probably have had that look myself when visiting extremely sick, death bound patients: When you try not to say the words forming in your mind. My husband, holding my hand gave me a reassuring squeeze. “You’ll pull through sweetie, you’re a strong woman.” With tightness in my chest, I tried to squeeze back. “You have to fight sweetie, or we will have to take extraordinary measures to make sure your brain gets oxygen.” Then, with almost a crack in his voice, he croaked “Live.”

A few more days passed and I was able to breathe a bit easier. The injections, continuing to do their part, along with other medication pushed me towards recovery. Weak but stable, I started to sit up more, read, answer emails. Then getting up to slowly walk around the floor of the Rehab unit, my trusty oxygen tank wheeling noisily by me, normal was no longer such a foreign word.

It was a few more weeks before I was able to leave the unit and return to my home. The arrival was strange. I did not remember leaving it, I still do not. The house was strange to me. My daughters had done thorough cleaning with my son, who had been recalled for a few weeks the day I was found in a coma. He was going to stay a few more days, before setting back to Virginia. He would be leaving once again to war-torn Iraq, and he wanted to spend as much time as possible with us. The preparations were mingled with dread- he would be too far away if I had a relapse….

But there was one conversation I had with him, that helped the unending feeling of loss I had when I tried to piece together the days. I had lost 8 days of my life to oblivion, and my mind struggled to regain them. I could not. He said that in a way going to war and coming back was similar. You blanked out parts; if not as much as possible of the events, you had lived through. He understood what I was feeling, of not being able to synchronize my mind with the date that was off by those eight days. “Don’t try to remember, mom. For you there is nothing there to remember. Let those days fade into the dark. Do not try to find out who, what, when, how of those days. They mean nothing now. You are here. Start from here.”

Start from here. Yes, I guess I would have to. The road to my past was blocked by those eight days. I could only look forward. Forward to whatever it was that awaited in the fog of time. I started writing in a journal. It was all too confusing and raw to put on the blog. So my days were spent away from the internet; I needed rest and the virtual world could not offer that for me at the time.

I kept constant communication with my boss who was in Mexico recuperating from the intense rounds of chemotherapy and radiation fighting his throat cancer. He too had a bad upset in his recovery when one night he got up from bed to get a glass of water and his world spun around and he cracked his head on the marble countertop in his kitchen. His wife found him in a pool of blood. His heart had done a number on him, his head was cracked, and he looked like he had done a few rounds with Tyson in the ring. For months, his brain refused to cooperate and like he would say later; “I felt I had poured my brains out on the kitchen floor.” So now, far away from any stressful situation, he was recuperating in the mountains of his vacation home. He too would tell me “one day at a time”; so would my email friend Chiara. Both were right; one day at a time was the only thing I could do.

The months passed; I was able to return to work a few hours a day, which was an exhausting endeavor for sure. I felt lost walking the hospital. Everything seemed empty. But everyone at work tried their best to keep it together for me…I had returned but not the same. There were battle scars that pulsated underneath it all. The kind that you remember when you bathe and your soapy hand brushes against a scar, and the memory of how you got it immediately comes to mind- but is lost again in everyday life. My life now revolved around my Coumadin, the unending blood tests. I had, even months afterwards, that breathless sensation. I hated the needles, the injections. It seemed not a day passed before I was facing another of those slim monsters. Childish, maybe-, but you dread them just the same. It would fade…

In January, I was able to return full-time to work. I was nearing the end of my course with Coumadin and it was great news- a pulmonary function test showed I was again at optimum breathing. However, I did not like the feeling of being a chemically induced hemophiliac. I could not fly off to a vacation destination. Airplanes for the moment were off-limits; so were the hikes to the nearby mountains. Mine was a world confined to sea level activities, sedate and extremely careful. Walks on the beach were a welcome solace. Hearing sea gulls, the rhythmic sounds of the oceans against the sands, cannot say how many days those walks on the beach were the only thing I looked forward to…

In early February, I started feeling breathless again, especially after going up any flights of stairs. On my i-Touch, I started noting all those odd times when I felt pain in my legs. In the past, I never really paid much attention to it. But now I had to. A few days ago, I sent an email to my doctor, listing all the notations I had made and immediately he recommended I have the Doppler test done again to rule out DVT -Deep Vein Thrombosis. We get on the carousel again…

So I am scheduled for the test on Monday, and I am scared. I do not like what it means and honestly, I am a tad frozen in place until that day…


6 Responses to “DVT – the test for them is scaring me”

  1. February 24, 2010 at 10:54 am

    Coraje, Bella!

    My own father died on February 19, 2010 at 2:30am so I just read this now. I am so touched you mentioned my counsel as your “email friend” and in the same writing space as your wonderful boss.

    I am sad yet gratified to read a summary of all you have been through, and triumphed over.

    Let us know the results of your Doppler. And if necessary, learn to love your Coumadin, and have an expert monitor it. If you read my post about my father you will know why.

    Pensando en ti…

    • February 24, 2010 at 11:12 am

      PS Your son’s advice was so wise. In another vein, one of my patients had a very severe depressive downturn with high risk of suicidality and resistant to medication, and was given ECT during an inpatient stay. It did the trick. When she was well enough to care, she said she was unhappy she didn’t remember much of the summer, what with the depression induced memory loss, and the short-term memory loss of ECT. Her fiancé–who had failed his clinical clerkship in psych the first time, but went on to be an outstanding and caring Intensivist, and was one of the most supportive men to a mentally ill woman I have ever met–said, “There wasn’t much worth remembering”. It gave her great peace of mind, and an ability to laugh it at the whole now forgotten summer.

      • 3 INAL
        February 24, 2010 at 10:17 pm

        Yes, it shattered this perception of needing to know; and realizing what the heck would I do with the information anyway!?

        Then you know everyone would say that people in a coma can hear- well I didn’t so there goes that theory! Most of the ICU nurses would later ask me what it felt like “waking up”- and that was what for a while upset me- because even though we use the term- it actually felt more like coming from nothing- a void with no sound, smell, taste, sensation- aboslutely nothing… It was an erie feeling that slowly faded away months later but because I can’t place the moment when I went into a coma. I can only remember the day before when my daughter was preparing for her prom- a full 36 hours according the doctor’s estimate since I was alone in the house- so even they don’t know how long I had been out before they came home and found me. it makes it all even weirder.

        But the sun shines brighter now… Let’s see what the test results say tomorrow. My doctor is wary of giving me news over phone or email.

        Everyone cross your fingers and toes, and lots of duas please, please…

    • 4 INAL
      February 24, 2010 at 8:30 pm

      Oh Bella! Te acompano en tus sentimientos- I’m so sorry to hear this! I will stop by and read.
      Un abrazo

  2. February 24, 2010 at 8:58 pm

    Gracias, cuidate bien!

  3. February 25, 2010 at 3:56 pm

    All fingers and toes crossed!

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