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Like sands through an hour glass, so are the days of our lives”
The sitcom title captured the concept that our lives are contained and that there is only so much time in our lives. It is a statement that reminds of our mortality.
Throughout my life I have had varying levels of awareness of my mortality. Most of the time I didn’t think about it. Then something would happen, like the sudden death of a loved one, and that sense of mortality would grab me for a period of time and then would slowly dissipate like the smell of fresh cooked bread dissipates over a couple of days.
However, when I was first struck down with what were assumed to be pulmonary emboli, I got a slap in the face sense of my mortality. If the clots had been slightly larger, I would be dead. However, I was placed on coumadin - an anti-coagulant - and I would heal. It might take a while, but I would heal.
But instead of getting better, I got sicker. I was told that sometimes it took longer. In a visit with my first pulmonologist - Ethan Corcoran - I said, “I’m starting to feel like this is as good as it’s going to get.” His response was “That’s possible.” I loved Corcoran. He spent hours researching and trying to determine the best course of action for me - the path that would provide the best outcome. He cared. He spoke with his colleague and the local expert on pulmonary embolisms - Dr. Maxine Dexter - and suggested that I at least consult with her. I did, and Maxine took up the torch of fighting for my life. Her diagnosis was Pulmonary Arterial Hypertension (PAH or PH).
I took that diagnosis and went researching and what I found was more than alarming. My research changed the entire dynamics of the “hour glass.” Someone had dumped sand out and the flow was accelerated as the life expectancy of folks with PH was about 2 ½ years. The clock was ticking, so to speak. Sure, I could beat the odds, but it didn’t feel like I could. I was getting sicker and sicker.
In the summer of 2010, I felt like any moment could be my last. I watched longingly for the hummingbirds that had come to our yard for the last several years. When they finally did come I cried at the sight. I embraced the moment because it might be my last time with the hummingbirds. And so it was with a dozen things a day - the hour glass was gone, replaced by a stop-framed moments. Some may think find this is a morbid fascination with death; however it was cherishing of life that drew me forward.
Dr. Dexter, came up with a treatment plan. It was to put me on a subcutaneous drip drug called remodulin. This is a super vaso-dialator that would ease the pressure on my heart and hopefully stop to destruction of my lungs. It was scary, but it was hope. I was sent in for a right heart catheterization so that they could get an accurate measure of the pressure in my lungs. Once I was prepped, the doctor performing the procedure came in to talk to me about the risks. He said that it was a risky procedure, but especially risky for me. This was because the high pressure in the pulmonary artery made the artery wall very thin. If he bumped the wall, I could bleed out before they could do anything to save me. I told him that it would have been nice to know that earlier, but the test was critical. Therefore, I hoped that he had had a good nights sleep and that his hands were very steady.
My life moved from day to day to living in the stop frame. A crazy way to live.
Clearly I survived the experience, but my medical status had big red “Complex” across the front of my file. Nothing went as expected with me, and anything could go wrong.
I went into the hospital to start the remodulin. The information I had read and what Maxine had told me cued me that this could be a painful therapy (that’s been an understatement), but what choice did I have? This therapy offered a possibility of giving more than 2 ½ years which was now down to a year and a half.
PH had gone wildfire in my lungs going from zero in January to stage 3 or 4 in less than six months. Hope took me out of stop frame and back to day to day.
The remodulin took some of the pressure off my heart, but did not seem to be slowing the process in my lungs. Maxine added in another drug - letairis. When that did not seem to have a significant effect she added the last of the recommended PH “cocktail” - sildenafil (viagra). Once more with little effect. I felt the sand flowing faster again.
In an office visit with Maxine she asked my permission to present my case as a candidate for heart-lung transplant. I had thought that transplant was off the table, so this was a surprise. In my Easter egg hunt through the internet looking at pulmonary hypertension information, I had found that transplant was the only “cure.” However, that the survival rate was little more than 50-50. I said as much to Maxine, and she said that the odds with transplant were better than what I had without it. That was like a bucket of cold water in the face.
So the transplant evaluation process started. I had stabilised for a while - not getting better and not getting worse. I still saw a cliff whenever I looked too far ahead
Then in March,the status quo shifted again. I don’t know what happened, but it wasn’t good.
Maxine got me into pulmonary rehab and they were able to document the reality of what I was feeling. First, that I needed more oxygen than “typical”. Generally, folks are OK if they stay above 90%, but I became “symptomatic” when I drop below 94%. The second thing they found was that under “load” (say walking on the treadmill) that my blood pressure was dropping. In fact it was sometimes dropping to 80/?.
Now I am trying to meet the demands of the transplant committee so I can be listed, and I feel a closing window of opportunity. Once again time has accelerated and the sand is running more quickly out of the hour glass. I am not yet back to a stop frame perception of life, but it is moving in that direction.
I have always had problems with time. I have wondered how I can experience it as fast an slow at the same time. For example, a day might drag but the week flies by. Now, I only experience variations of fast. The days run through my fingers like water. And like holding water I have had to learn to cup my hands rather than clench them. For the instinct as my life runs away from me is to hold on for all that I am worth, but a lot of my lesson has been to keep my hands open.
Such conundrums. On one hand I must fight every day to do what I need to survive. On the other the time feels short and that there are lessons to be learned - and maybe shared.
Throughout my life I have had varying levels of awareness of my mortality. Most of the time I didn’t think about it. Then something would happen, like the sudden death of a loved one, and that sense of mortality would grab me for a period of time and then would slowly dissipate like the smell of fresh cooked bread dissipates over a couple of days.
However, when I was first struck down with what were assumed to be pulmonary emboli, I got a slap in the face sense of my mortality. If the clots had been slightly larger, I would be dead. However, I was placed on coumadin - an anti-coagulant - and I would heal. It might take a while, but I would heal.
But instead of getting better, I got sicker. I was told that sometimes it took longer. In a visit with my first pulmonologist - Ethan Corcoran - I said, “I’m starting to feel like this is as good as it’s going to get.” His response was “That’s possible.” I loved Corcoran. He spent hours researching and trying to determine the best course of action for me - the path that would provide the best outcome. He cared. He spoke with his colleague and the local expert on pulmonary embolisms - Dr. Maxine Dexter - and suggested that I at least consult with her. I did, and Maxine took up the torch of fighting for my life. Her diagnosis was Pulmonary Arterial Hypertension (PAH or PH).
In the summer of 2010, I felt like any moment could be my last. I watched longingly for the hummingbirds that had come to our yard for the last several years. When they finally did come I cried at the sight. I embraced the moment because it might be my last time with the hummingbirds. And so it was with a dozen things a day - the hour glass was gone, replaced by a stop-framed moments. Some may think find this is a morbid fascination with death; however it was cherishing of life that drew me forward.
Dr. Dexter, came up with a treatment plan. It was to put me on a subcutaneous drip drug called remodulin. This is a super vaso-dialator that would ease the pressure on my heart and hopefully stop to destruction of my lungs. It was scary, but it was hope. I was sent in for a right heart catheterization so that they could get an accurate measure of the pressure in my lungs. Once I was prepped, the doctor performing the procedure came in to talk to me about the risks. He said that it was a risky procedure, but especially risky for me. This was because the high pressure in the pulmonary artery made the artery wall very thin. If he bumped the wall, I could bleed out before they could do anything to save me. I told him that it would have been nice to know that earlier, but the test was critical. Therefore, I hoped that he had had a good nights sleep and that his hands were very steady.
My life moved from day to day to living in the stop frame. A crazy way to live.
Clearly I survived the experience, but my medical status had big red “Complex” across the front of my file. Nothing went as expected with me, and anything could go wrong.
I went into the hospital to start the remodulin. The information I had read and what Maxine had told me cued me that this could be a painful therapy (that’s been an understatement), but what choice did I have? This therapy offered a possibility of giving more than 2 ½ years which was now down to a year and a half.
PH had gone wildfire in my lungs going from zero in January to stage 3 or 4 in less than six months. Hope took me out of stop frame and back to day to day.
The remodulin took some of the pressure off my heart, but did not seem to be slowing the process in my lungs. Maxine added in another drug - letairis. When that did not seem to have a significant effect she added the last of the recommended PH “cocktail” - sildenafil (viagra). Once more with little effect. I felt the sand flowing faster again.
In an office visit with Maxine she asked my permission to present my case as a candidate for heart-lung transplant. I had thought that transplant was off the table, so this was a surprise. In my Easter egg hunt through the internet looking at pulmonary hypertension information, I had found that transplant was the only “cure.” However, that the survival rate was little more than 50-50. I said as much to Maxine, and she said that the odds with transplant were better than what I had without it. That was like a bucket of cold water in the face.
Then in March,the status quo shifted again. I don’t know what happened, but it wasn’t good.
Maxine got me into pulmonary rehab and they were able to document the reality of what I was feeling. First, that I needed more oxygen than “typical”. Generally, folks are OK if they stay above 90%, but I became “symptomatic” when I drop below 94%. The second thing they found was that under “load” (say walking on the treadmill) that my blood pressure was dropping. In fact it was sometimes dropping to 80/?.
Now I am trying to meet the demands of the transplant committee so I can be listed, and I feel a closing window of opportunity. Once again time has accelerated and the sand is running more quickly out of the hour glass. I am not yet back to a stop frame perception of life, but it is moving in that direction.
I have always had problems with time. I have wondered how I can experience it as fast an slow at the same time. For example, a day might drag but the week flies by. Now, I only experience variations of fast. The days run through my fingers like water. And like holding water I have had to learn to cup my hands rather than clench them. For the instinct as my life runs away from me is to hold on for all that I am worth, but a lot of my lesson has been to keep my hands open.
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