Four years ago today I woke up in the afternoon knowing that I was on a ventilator. I can't tell you that I remember being put on a ventilator, but I do remember waking up knowing that a machine was indeed breathing for me. Contrary to what you might think I was reasonably calm about this idea. I had a million and one questions and that tube definitely got in the way. So, instead of waiting for the tube to be taken out, I began to write. Somewhere in my "stuff" I still have those yellow sheets of paper to remind me of where I came from when I need reminding. And truthfully every once and awhile I forget how fortunate and blessed I am.
When I woke up that day I had no idea how long I had been "sleeping" and how much had changed. There were answers to questions I hadn't even known I needed to ask. So many tests were done while I was unaware and the results would change me and my future. I think the first question I asked a doctor was about having more children. Why I asked that when I had a newborn at home I couldn't tell you, but I did. And I got the answer I had no desire to hear. That OB's advice was absolutely never again. Another OB suggested that I could talk to a high risk OB about it after some time and then it would be all about odds. Of course the odds would never again likely to be in my favor. This idea was one of the hardest I have ever had to deal with in my now 31 years. The girl who dreamed of having between four and six children would have to stop at one?!? NEVER. Until recently anyways.
I wouldn't say that I wouldn't welcome another child in my life as a son or daughter, but I am guessing it won't be me delivering said child. And while that reality just about cripples a part of me, the thought of dying or permanently losing heart function is daunting. I don't believe that I can take that risk for the sake of the two people in this family that do depend on me today. My son needs a mother and today someone said to me, "One child with a mother is great, two children without a mother is horrible." That could be what I leave Tim with if I decide that having more children is that important to me. So, I could choose to knowingly risk everything I have for more and then I might never get to experience it or have to experience it in an incredibly debilitated state.
Peripartum cardiomyopathy is heart-wrenching. Well, not literally. It more accurately makes one's heart fail. While I was on the ventilator it was determined that I have a rare heart disorder/disease that can basically be considered pregnancy-induced heart failure. At some point I was told that less than 1/4 of 1% of the female population is diagnosed with this type of heart disease. I have never met anyone who has this issue and it is likely that I may never physically meet face to face with another woman who has been diagnosed unless I actively seek her out. I have heard of someone my Mom knows having a daughter with it, but that's as close as I have come to knowing someone else who deals with this reality.
From the outside today no one would know that I barely skated through things four years ago. I am positive a few years disappeared from some people's lives when this happened in that week four years ago. I cannot think of something a whole lot more stressful to be told than someone you love is on life support for heart and respiratory failure. I know one friend who found out while at work and another who called me in my room and was connected with my Mom in the ICU. A third found out from her mother. My poor brother and sister were each on different sides of the country and my husband was at home with our newborn son.
I remember my Mom being there and trying to comfort me as she told me that if I couldn't leave the oxygen mask alone then they would have to restrain me. I was screaming and combative because my oxygen saturation was in the low 70's and I was choking. And for the first time in my life I understood that I could die. I had no idea what was happening to me, but I did understand that it was serious when a team wheels you quickly into the ICU and a new team shows up immediately. I remember being asked if I had ever been on a ventilator for my asthma and I shouted a resounding, "NO"! And then things went dark. I am told by my Mom that everything happened quite quickly and that she wasn't there as she was asked to leave the room to give them space for intubation.
For many months I decided that it was the sepsis that caused my heart failure, not my pregnancy. I could not face the idea that another pregnancy would never happen for me, or at least should never happen again. I hardly had a chance to enjoy my son before this all came to a head and now I would never get to take another newborn home from the hospital?!? The head of the heart transplant and failure group at Loyola University Medical center tried to tell me when Matt was just shy of one years-old that it was the pregnancy, not the sepsis. He told me that the labs actually suggested long term heart failure, so for the second half of my pregnancy when the swelling was outrageous and I got worn out so easily, I was dealing with the heart failure then. Although he told me then that we would just focus on protecting my heart and getting healthier and that we could talk about pregnancy later, I now know that he never wanted to talk to about a future pregnancy. No doctor in their right mind would be in favor of me taking a chance. I think they believe it's like playing a little game of Russian Roulette.
So, today I look at things a little differently and maybe it's with a touch more reality than ever before in my life. Today I could not in any way take a chance at death or at a significantly diminished life for additional children. My odds for that outcome are too overwhelming. And frankly, it terrifies me. Because of all of this, lots of things are terrifying and overwhelming. It can be a secret hell because while I may no longer be incredibly weak and ill, my memory is sharp. Some days when my breathing is compromised due to allergies and asthma, I have to try to remind myself that I am not dying like I was four years ago. Now I am just learning how to live with the damage that all of this caused in my figurative heart (and mind) vs. my physical heart.
I feel like today is almost as special as my birthday because it was my day to be born again and feel like new life was possible. It was and continues to be a day on which I need to remember that I am so incredibly blessed and loved. I just hope since this appears to be the year when I become more and more in touch with reality that I work harder at building the life I was given a second chance to live.