October 2016 in Niagara Falls. I was in a wheelchair because I couldn't walk that much. (Still can't) It has been nearly seven months since I last wrote a blog on CustomScars.org. It isn’t because I lost track of time, but because of an aortic dissection that happened on May 27th. While getting ready for my children’s end of the school year program I had a type B dissection (tear) right above my St. Jude’s artificial aortic valve. Thankfully it only tore one layer of the aorta preventing a catastrophic result if all layers would have torn.
It abruptly started with back pain. Pain that was more intense than any pain I had ever experienced before. Realizing immediately what had happened, I quickly told Amanda, my wife, that I had a dissection and needed to get to the ER immediately. The hospital is less than five miles away and I insisted that Amanda take me. So with all five kids in the van we made it to the ER. Once at the hospital, I looked back at my children and told them that I loved them believing that was the last time they would see me alive. I then managed to stagger into the ER and told them I had a dissection.
I was life flighted to Allegheny General Hospital in Pittsburgh where I’ve had my four other Marfan related aortic surgeries. Honestly, from this point I only have vague memories of the next 6 weeks. I ended up with pneumonia and was on a breathing tube for nearly two weeks. I also had a bleeding ulcer in my stomach that took four attempts to fix. Over this span I had to receive nearly 2 dozen units of blood. (with a second life flight thrown in as well)
They performed an endograph where they entered my groin and then “opened” up the graph on the torn aorta. It was the best that could be done because they didn’t believe I would survive an open chested procedure due to all the complications I was having.
A number of times my survival was questionable but hundreds of prayers were heard and God saw fit for me to pull through. After being in AGH for a month and a half I went to rehab for nearly four weeks to learn to walk again. I had lost so much strength that I needed occupational and physical therapy to be able to become functional again. That’s another entirely difficult time.
I was so glad to be able to come home at the beginning of August after nearly ten weeks in the hospital and rehab. I had home therapy and was improving weekly, but then in the middle of September I thought I had pneumonia again. After two weeks of continually feeling worse I ended up back in the hospital for ten days. I wish it had been pneumonia but instead I was diagnosed with Congestive Heart Failure (CHF). My heart was only functioning at a max of 27%. One’s heart function is supposed to be 55% or greater, so my number’s were definitely low.
So that is what I have been dealing with the last three months. In November I had some testing done to see if my heart function was improving and the results weren’t encouraging. In January we will have more testing done to see again if my heart function has improved to the minimum threshold of 35%. If not, the plan is to have a pacemaker/defibrillator surgically placed inside. Hopefully my heart function doesn’t decrease because that would lead us down the roads of significantly more invasive procedures.
I’m on my third week of cardiac rehab and that has definitely helped increase the strength in my arms and legs. My blood pressure is all over the place, but my heart rate holds pretty steady around 95-120 beats/minute when I’m active. Rehab plus medication is the formula we are hoping will help strengthen my heart muscles.
But this week I am having a really hard time processing and dealing with all the busyness of Christmas. I’ve had to cancel one family gathering and I am not sure if the other two are going to happen either with us. Being a pastor, we have a Christmas Eve service and Christmas Day service and I am having a hard time grasping the two so closely together. Many folks in the church are participating in Christmas Eve so that is a huge relief and I know all I have to do is ask and dozens of people here at the church will do whatever is needed to help me. But personally, it’s a struggle right now.
Again I’m sorry that I haven’t updated my blog in so long. Its been a very hard summer and fall. Just yesterday I was scrapping ice off my car window and my LifeVest (my defibrillator I am currently wearing) went off saying that treatment (a shock) was imminent. I quickly hit the buttons to make it stop, but I can’t even scrape ice off a car window anymore.
This is our new normal and we have adjusted fairly well over these months. I’m very thankful for the improvements and so grateful to be able to spend another Christmas celebrating the birth of Jesus with my wife and children. I trust that I will have many more Christmas’s in the years to come regardless of where my Marfan and CHF journey’s take me.
It abruptly started with back pain. Pain that was more intense than any pain I had ever experienced before. Realizing immediately what had happened, I quickly told Amanda, my wife, that I had a dissection and needed to get to the ER immediately. The hospital is less than five miles away and I insisted that Amanda take me. So with all five kids in the van we made it to the ER. Once at the hospital, I looked back at my children and told them that I loved them believing that was the last time they would see me alive. I then managed to stagger into the ER and told them I had a dissection.
I was life flighted to Allegheny General Hospital in Pittsburgh where I’ve had my four other Marfan related aortic surgeries. Honestly, from this point I only have vague memories of the next 6 weeks. I ended up with pneumonia and was on a breathing tube for nearly two weeks. I also had a bleeding ulcer in my stomach that took four attempts to fix. Over this span I had to receive nearly 2 dozen units of blood. (with a second life flight thrown in as well)
They performed an endograph where they entered my groin and then “opened” up the graph on the torn aorta. It was the best that could be done because they didn’t believe I would survive an open chested procedure due to all the complications I was having.
A number of times my survival was questionable but hundreds of prayers were heard and God saw fit for me to pull through. After being in AGH for a month and a half I went to rehab for nearly four weeks to learn to walk again. I had lost so much strength that I needed occupational and physical therapy to be able to become functional again. That’s another entirely difficult time.
I was so glad to be able to come home at the beginning of August after nearly ten weeks in the hospital and rehab. I had home therapy and was improving weekly, but then in the middle of September I thought I had pneumonia again. After two weeks of continually feeling worse I ended up back in the hospital for ten days. I wish it had been pneumonia but instead I was diagnosed with Congestive Heart Failure (CHF). My heart was only functioning at a max of 27%. One’s heart function is supposed to be 55% or greater, so my number’s were definitely low.
So that is what I have been dealing with the last three months. In November I had some testing done to see if my heart function was improving and the results weren’t encouraging. In January we will have more testing done to see again if my heart function has improved to the minimum threshold of 35%. If not, the plan is to have a pacemaker/defibrillator surgically placed inside. Hopefully my heart function doesn’t decrease because that would lead us down the roads of significantly more invasive procedures.
I’m on my third week of cardiac rehab and that has definitely helped increase the strength in my arms and legs. My blood pressure is all over the place, but my heart rate holds pretty steady around 95-120 beats/minute when I’m active. Rehab plus medication is the formula we are hoping will help strengthen my heart muscles.
But this week I am having a really hard time processing and dealing with all the busyness of Christmas. I’ve had to cancel one family gathering and I am not sure if the other two are going to happen either with us. Being a pastor, we have a Christmas Eve service and Christmas Day service and I am having a hard time grasping the two so closely together. Many folks in the church are participating in Christmas Eve so that is a huge relief and I know all I have to do is ask and dozens of people here at the church will do whatever is needed to help me. But personally, it’s a struggle right now.
Again I’m sorry that I haven’t updated my blog in so long. Its been a very hard summer and fall. Just yesterday I was scrapping ice off my car window and my LifeVest (my defibrillator I am currently wearing) went off saying that treatment (a shock) was imminent. I quickly hit the buttons to make it stop, but I can’t even scrape ice off a car window anymore.
This is our new normal and we have adjusted fairly well over these months. I’m very thankful for the improvements and so grateful to be able to spend another Christmas celebrating the birth of Jesus with my wife and children. I trust that I will have many more Christmas’s in the years to come regardless of where my Marfan and CHF journey’s take me.
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