It has been seven months since my last blog. Time has just gotten away from me. Recovery from last year’s Aortic Dissection and my ministry responsibilities at the church have taken priority. I am sorry for that, but today marks a very significant day for me in my Marfan Journey. Today marks the one year anniversary of coming home after my dissection.
I was in the hospital and then rehab from May 27 – August 4 last year. It started with the aortic dissection, which led to my lungs filling with fluid, which for some reason triggered a H Pylori bacterial ulcer to burst in my stomach causing massive blood loss over a span 6 weeks.
My meals came via a feeding tube for over a month. For weeks I relied on a breathing machine for survival. Because the ulcer was on an artery I had to receive over two dozen units of blood and it wasn’t until the fourth attempt to clamp/cauterize it that it stopped bleeding and healed. I love to fly, but I’d prefer to not have two helicopter life flights in a span of 7 weeks again.
Last summer was beyond difficult. My children only saw me 2 times during that 70 day span primarily because they were too young to go into ICU. Our whole family hurt and even a year later we are still healing.
Being on the cusp of death for such an extended period of time, my muscles deteriorated. I lost nearly 40 lbs. I remember even after 6 weeks that I was hardly strong enough to hold my cell phone up and I was shaking so badly that it was a struggle to even push the buttons.
Some of my therapy consisted of folding washcloths . . . that would exhaust me in a matter of minutes. I also had to stack my “food” cans. It was what they gave me via my feeding tube. Those cans, at the time, seemed like 100 lbs and I moaned and groaned having to stack an 8 oz can.
Then that day in rehab where the therapist said that I was going to stand on my own. I told him that I couldn’t. He didn’t accept that answer. He slid my legs over the left side of the bed and proceeded to lift my torso so I was sitting at the edge of the bed. I again told him that I couldn’t do it. I wasn’t ready, my legs were too weak!
He said, “Trust Me”. Put your hands on my shoulders and lean forward and I’ll help boost you up. I felt like Indiana Jones in The Last Crusade when Indy had to take that step of faith onto the rock bridge that he couldn’t see. After a handful of attempts between using my arms and the PT lifting me I stood for a handful of seconds. After a couple more standing successes I was exhausted. Did I only hit 20 seconds of standing or so? Yes, but that was more standing then I had done in 7 weeks.
So many more details and so much pain to follow. Amanda never left me and I never doubted her love. God never left me, but I honestly struggled with some “why’s”. I’m so thankful that the faith and prayers of others kept me going until my strength was restored.
Even though I am in CHF (congestive heart failure) and had a second defibrillator implanted three weeks ago, I am so much better than a year ago today when I was discharged from rehab. I can swing my legs over the side of the bed and stand without an issue. I don’t need someone to literally walk beside me. I am not longer bound to a wheelchair. I no longer have to rely on “Texas Ranger” (That is what I named the Walker I had to use. If you don’t get it, I’m not even going to try to explain)
I’m not where I was at physically before May 27, 2016. I doubt I will ever get to that point again, but I am so thankful for the answers to prayer on my behalf. I am so thankful for a wonderful church family that didn’t waiver in keeping this Marfan syndrome pastor around.
When I walk into my home, I reflect on the people who came for weeks to work on it before we moved in. Dozens and dozens of people gave hundreds of hours in repairing and renovating our new home. Words cannot express the gratitude for that.
One year at home since the dissection. Having this summer with my family has been wonderful. I missed so much last year, but am so glad that I’m still around. I have a CT scan and see my surgeon next week to make sure the endograph that was used to repair my dissection is holding strong.
It has been tough these last 39 years of life. Five surgeries on my aorta and one brain surgery + two different defibrillators implanted since May 1st. (with the one shocking me 3 times when it didn’t need too, thus the need to put a different one in three weeks ago.)
Marfan life is not easy. Anyone that has it can attest to that. Never ending aches and pains. It seems like never-ending doctor appointments. The trauma of multiple surgeries has lifelong affects, but you just have to keep plugging along. I’ve been so blessed to be married the last 16 years to the greatest helpmate who has never flinched in her love for me regardless of Marfan syndrome. I am even more thankful for the strength that I can receive through my faith. Philippians 4:13 states, “I can do all things through Christ which strengthens me.” That’s a promise and a truth that this Marfan patient will hold to till the day I die. (which hopefully isn’t for a very long time.)
I was in the hospital and then rehab from May 27 – August 4 last year. It started with the aortic dissection, which led to my lungs filling with fluid, which for some reason triggered a H Pylori bacterial ulcer to burst in my stomach causing massive blood loss over a span 6 weeks.
My meals came via a feeding tube for over a month. For weeks I relied on a breathing machine for survival. Because the ulcer was on an artery I had to receive over two dozen units of blood and it wasn’t until the fourth attempt to clamp/cauterize it that it stopped bleeding and healed. I love to fly, but I’d prefer to not have two helicopter life flights in a span of 7 weeks again.
Last summer was beyond difficult. My children only saw me 2 times during that 70 day span primarily because they were too young to go into ICU. Our whole family hurt and even a year later we are still healing.
Being on the cusp of death for such an extended period of time, my muscles deteriorated. I lost nearly 40 lbs. I remember even after 6 weeks that I was hardly strong enough to hold my cell phone up and I was shaking so badly that it was a struggle to even push the buttons.
Some of my therapy consisted of folding washcloths . . . that would exhaust me in a matter of minutes. I also had to stack my “food” cans. It was what they gave me via my feeding tube. Those cans, at the time, seemed like 100 lbs and I moaned and groaned having to stack an 8 oz can.
Then that day in rehab where the therapist said that I was going to stand on my own. I told him that I couldn’t. He didn’t accept that answer. He slid my legs over the left side of the bed and proceeded to lift my torso so I was sitting at the edge of the bed. I again told him that I couldn’t do it. I wasn’t ready, my legs were too weak!
He said, “Trust Me”. Put your hands on my shoulders and lean forward and I’ll help boost you up. I felt like Indiana Jones in The Last Crusade when Indy had to take that step of faith onto the rock bridge that he couldn’t see. After a handful of attempts between using my arms and the PT lifting me I stood for a handful of seconds. After a couple more standing successes I was exhausted. Did I only hit 20 seconds of standing or so? Yes, but that was more standing then I had done in 7 weeks.
So many more details and so much pain to follow. Amanda never left me and I never doubted her love. God never left me, but I honestly struggled with some “why’s”. I’m so thankful that the faith and prayers of others kept me going until my strength was restored.
Even though I am in CHF (congestive heart failure) and had a second defibrillator implanted three weeks ago, I am so much better than a year ago today when I was discharged from rehab. I can swing my legs over the side of the bed and stand without an issue. I don’t need someone to literally walk beside me. I am not longer bound to a wheelchair. I no longer have to rely on “Texas Ranger” (That is what I named the Walker I had to use. If you don’t get it, I’m not even going to try to explain)
I’m not where I was at physically before May 27, 2016. I doubt I will ever get to that point again, but I am so thankful for the answers to prayer on my behalf. I am so thankful for a wonderful church family that didn’t waiver in keeping this Marfan syndrome pastor around.
When I walk into my home, I reflect on the people who came for weeks to work on it before we moved in. Dozens and dozens of people gave hundreds of hours in repairing and renovating our new home. Words cannot express the gratitude for that.
One year at home since the dissection. Having this summer with my family has been wonderful. I missed so much last year, but am so glad that I’m still around. I have a CT scan and see my surgeon next week to make sure the endograph that was used to repair my dissection is holding strong.
It has been tough these last 39 years of life. Five surgeries on my aorta and one brain surgery + two different defibrillators implanted since May 1st. (with the one shocking me 3 times when it didn’t need too, thus the need to put a different one in three weeks ago.)
Marfan life is not easy. Anyone that has it can attest to that. Never ending aches and pains. It seems like never-ending doctor appointments. The trauma of multiple surgeries has lifelong affects, but you just have to keep plugging along. I’ve been so blessed to be married the last 16 years to the greatest helpmate who has never flinched in her love for me regardless of Marfan syndrome. I am even more thankful for the strength that I can receive through my faith. Philippians 4:13 states, “I can do all things through Christ which strengthens me.” That’s a promise and a truth that this Marfan patient will hold to till the day I die. (which hopefully isn’t for a very long time.)
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