Jul 19, 2009 Latest post:
11 hours ago
Welcome to our CaringBridge website. We've created it to keep friends and family updated about Louie. Get started by reading the introduction to our website, My Story.
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I never go the easy way through medical issues. For thirteen years i was dealing with Multiple System Atrophy (MSA), a progressive, incurable and ultimately terminal degnerative brain disorder that profundly impacts the autonomic nervous system (which manages most of the automatic functions of the body) I also have Celiac Disease, Type II Diabetes, Stage Three Chronic Kidney Disease and a multitude of skeletal problems.
On August 25th, 2009 I had my fourth major spine surgery. It was done at the University of Colorado Hospital in Aurora, Colorado. It was a 10 hour surgery. It was aimed at both some corrective work and repairs on my lumbar spine and sacrum. They removed a wedge from a lumbar vertebra to put the right curve into my lower back, fused the rest of the lumbar spine and sacrum, put in new rods for that area and then linked the whole thing to the existing rods.
My surgeon and her huge team were terrific, following me very carefully for my days in the hospital. The surgery was successful. One of the great surprises was the discovery of the cause of the chronic severe headache that I lived with 24/7 for three years prior to the surgery. When they opened my back, they realized that the screws holding the lower ends of the old rods had worked loose. The result was that the screws were moving back and forth along the sides of the sack around the spinal cord, causing chronic leakage of spinal fluid, and chronic severe headache.
However, the damage around the spinal cord also apparently damaged key ganglions of the Autonomic Nervous System which either initiated or accelerated a progressive deterioration of that system.
My right knee was replaced in February of 2010 and the left knee was replaced in May of 2011, joining my hips which were replaced in 2008. As a good friend says, "When Louie finally kicks the bucket, the family should take him to recycling instead of the mortuary." In the summer of 2011, we found out that the steel on steel hip joints that were both "installed" in 2008 are slowly leaching toxic chromium and cobalt into my blood stream. This may result in having to replace the replaced hips.
Both the Celiac Disease and Diabetes were well controlled through all of this. All of my major organ systems were impacted by the autonomic failure - heart rate, respiration, circulation, digestion, muscle function and others - essentially anything that is supposed to be managed or moderated automatically.
At the end of 2010, we moved back to Minnesota due to my slow and shallow respiration rate, which doesn't work well at Colorado altitudes. I had been put on oxygen 24/7 in the Spring of 2010, but I was able to live safely without it at Minnesota altitudes.
In general, I had to slow down. Some things that I used to love to do, like gardening and hiking, were no longer possible. I could walk only with a walker, used numerous tools to get dressed, ate with special silverware and needed help doing a lot of simple things like reaching for things, or opening doors. My right side weakened more than my left, but both sides were much weaker than they were in 2011, but the process slowed down. Nancy does 100% of the driving these days.
After several years of increasing neck, shoulder, arm and hand pain, and a gradual loss of function in my arms and hands, 2018, was the year all of that was addressed. My Minnesota spine surgeon came up with a plan that was radical and somewhat risky. It called for a complete reconstruction of my lower spine correcting two serious tilts - one to the side and one forward, and restoring a proper curve to my entire spinal column.
The plan was the subject of a surgery symposium. Everyone thought it was a great plan except for the anesthesiology people. They feared my multiple conditions would provide too many risks in the planned ten hour surgery. The surgeon shifted to a simpler plan, a two hour clean up of all of the spurs and arthritic processes in my neck. It turned out to be a five hour surgery and for three weeks it worked well. Strength came back to my arms, but then my neck collapse forward. It turned out the spurs had held it from a complete collapse.
The big surgery was rescheduled. It happened in November of 2018, took the ten hours predicted and did wonders for my entire back, but I overdid it when I got out of the hospital and for two and a half months suffered with extreme nerve pain in my low back and legs. That was finally relieved with a nerve block, and recovery gradually picked up speed. The possibility of a neck fusion (which would complete the fusion of my entire spine) is still out there.
My limitations fed into our decision to move into a condominium with everything on one level and no maintenance to do which has proved to be a huge help through all of the problems of the last few years. In the middle of all of this, Nancy and I have found ourselves blessed beyond all reason through the grace of God and the love of our friends and family. I've reconnected with my grade school class and found a treasure trove of friendship there. I've also reconnected with my Christian Brothers novitiate class with similar results. Life is good and rich.
Life got much better at the beginning of the summer of 2019. After being prayed with countless times and prayed for by many of my readers over the past eleven years I found at the beginning of June that I could walk without my walker for the first time in eight years and that I could stand for long periods of time without support and without getting faint for the first time in thirteen years. Then other symptoms of MSA began to disappear. I was soon doing all kinds of things that had been impossible for me for the prior thirteen years. Even my daily barrage of kidney stones came to an end. I also got off all diabetic medications for the first time in fifteen years. I was given a new life that none of my doctors imagined would happen.
Just to help me keep things in perspective, the strange year of 2020 began with my noticing that all of the things I had been learning to do after being given back mobility and strength suddenly became occasions for shortness of breath and intense chest pain. An annual check up with my cardiologist included an echo-cardiogram that showed that a slowly developing stenosis of my aortic valve had dramatically worsened.
The valve replacement surgery was done at the end of April. They were able to do it all through my arteries and when they went in with the usual instrumentation, the valve has become so completely encrusted that they could not get through and had to change the instrumentation. The replacement went well - I now have a valve made with titanium and cow tissue - mooooo! The doctor said that the valve had worsened so much in the two weeks since the angiogram he was convinced I only could have lived for about another week. Whew!
All that was taking in the midst of the first wave of Pandemic worries and Nancy was not allowed in the hospital for this or any of two emergency room trips that happened over the summer when I had episodes of temporary blindness in one eye. A couple of three day hospital stays, and piles of diagnostic tests eventually led to the discovery that the eye episodes were actually caused by the deterioration of my upper spine and nec k - the only part of my back that hadn't been fused over the years.
A major surgery to fuse the rest of my spine was set for November of 2020, but got cancelled when the next wave of COVID 19 hit the area with much greater force. I am now on the surgery calendar for February of 2021.
Nancy and I have actually enjoyed our cloistered Pandemic life. Because of my multiple risk factors, we have had almost no exposure to other people other than frequent Zoom calls, phone calls and piles of emails and texts with so many good friends and our family.
I daily find that I have much to be thankful for, happy about and laugh about and we manage to do plenty of all of that.
Prayers are still welcome! I’m relearning how to do all those things I couldn’t do for the last thirteen years - and I’m thirteen years older.