my transverse myelitis story

Clay After Transverse Myelitis Diagnosis

Results Of My Lumbar MRI

  

Tuesday, June 28, 2016 about 2:00pm. 


I’d just received a call from my primary doc, Carol Straka. After reviewing my lumbar-area MRI from earlier that morning, she new something was amiss. “Clay, I want you to get over to Lutheran General ASAP and check in through the ER,” she commanded.


After dropping Barbara, my wife, at her appointment, I picked up a toothbrush and a book at home, then drove back to the ER, walking in before 4:00pm, wondering what was going on with my health.


Four days later, my legs gave out – I couldn’t walk a step without a walker. Adding to this injury, I couldn’t control my bladder or my bowels. I wore a diaper and peed through a catheter. Most importantly, I really had no clue as to what was happening to me. I knew nothing at all about transverse myelitis, or TM.


Before we go any further, let me put my health situation into some context . . .  

Background

In January 2016, I turned 64. Moderately successful, running my own executive coaching business under Vistage Worldwide ( https://bit.ly/2rFAIvJ) , I’d found my true niche. Life was great. 

www.vistage.com

I’d spent time developing a vision for my retirement. The plan was working.

The vision included a resolution to get nice and healthy in 2016. I wanted to drop 10 lbs. I also needed to get my left hip replaced. Be careful what you wish for, or at least be prepared.

 

My hip had started to significantly impact my lifestyle by late 2015. Pain just got too much. 


As surgery approached , a very odd problem surfaced. One night in mid-January, I started to have intense pain in my groin. By 4:00am I couldn’t stand it any longer, so I left Barbara sleeping and I drove to the ER at Advocate Lutheran General.


The result - my bladder held four-times the fluid it should have held, substantiated by a health article I later read.The ER docs drained it and hooked me up to a Foley Catheter. They referred me to a Urologist immediately.

 

I left the ER with two major concerns: I couldn’t pee without the catheter; I wanted to avoid re-scheduling the hip replacement surgery. As it all turned out, the hip went titanium on February 17th. Afterwards, I needed a TURP. My prostate had swollen to the point of cutting off my urethra tube. The TURP would eliminate the swelling    

https://bit.ly/2GMyKhS


The hip replacement went very well. Within three weeks, I’d gone from a wheel chair to a walker to a cane. So, we scheduled the prostrate procedure for April 5th. It went well. Three days later, the catheter was removed and I could freely pee again. Hooray!  https://bit.ly/2ISfftr


If only that had been the end of my story.

   

Infections Get Underway

Early Days of Transverses Myelitis Treatment

After the TURP, antibiotics were prescribed. I took seven days-worth, then dropped off a urine sample for testing. But a week later near the end of April, my urine tested negative. I'd developed a bladder infection and needed to take another round of antibiotics. After another seven days, I dropped off a 2nd sample for testing.  


I waited for a week but no one results call. So, I called them - I was still negative. They changed me to a different antibiotic. By the time I finished that prescription, I was finally positive – infection free - but it was the end of May, 2016.


As June progressed, I started to feel pretty good. We planned a long weekend in Detroit. A great friend of ours needed open-heart surgery to correct a childhood cardiac condition. Barbara volunteered to stay with him in Detroit to help during his recovery. She flew there; I would drive up on Friday, the 25th. We’d spend the weekend all together, then she and I would drive back on Monday 27, 2016.


About 11:00pm the evening before leaving for Detroit, pain started in my groin again. It kept getting worse. Remembering my original 4:00am ER visit, I drove over at 12:30am instead.


After a C-Scan ( https://bit.ly/2jYFv77 ), the ER doc drained my bladder, hooked me up with another catheter, and prescribed more antibiotics for another minor (he thought) health infection.


By now it was close to 5:00am, so I found an all-night Walgreen’s pharmacy, filled my prescription, and packed an overnight bag. We’d passed the Summer Solstice so the sun was up as I drove through downtown Chicago, heading east to Detroit.

Motown 's Returning to Greatness

Barbara, Jim and I had a great time wandering all over Detroit, then late Sunday I received a call from the Advocate ER doc that saw me Thursday night. The results from tests had come in, and it turned out that my so-called “common” bladder infection was something else entirely – it was a sepsis infection that normally would show up in my blood but had emerged in my urinary track. 


“Clay, call Dr. Straka tomorrow on your way back. I’ll get ahold of her today and fill her in on the situation,” she instructed. On Monday I made that call. She wanted me to get an MRI ( https://sie.ag/2CNtTfm ) on Tuesday morning at 10:30am. One of her nurses set everything up.

 

Well, by 2:00pm the next day, Straka called me and wanted me to go to the ER without much delay and check in for a stay. So, at 4:00pm on June 28, 2016 I drove to Advocate, parked my car, walked into the ER . . . and everything started



Advocate Lutheran General Hospital

Thursday the 30th -

After laying around most of the day on 14 West, chatting with lots of Infectious Disease docs, I struggled through nearly two hours of continuous MRI, from head to butt. MRI is one of the most sophisticated yet commonly used medical tests. I can’t understand why they’ve not developed a way to make them more comfortable. My tip – ask for fentanyl to ease the process.

Thursday the 30th -

Dr MacDougall, one of “my neurologists” walks into the room. “The MRIs, good news, bad news,” he says as he’s also unwrapping a really long syringe. “Your brain MRI is clear – you don’t have MS.” “great,” I think to myself . . . it never occurred to me that I might have MS.” He continues, “It appears that you have a condition known as Transverse Myelitis. It’s a swelling of the spine that will leave you pretty much numb from the waist down, including your bladder and bowels. But, unlike MS, recovery may be possible, as documented in most TM information." "Really, and how long might that take,” I asked. “Well, at this point, I haven’t a clue,” he replied than explained that he needed to do a spinal tap, so my fluids can be tested for causes, then we’ll know more.”

Friday, July 1st -

I’m still reeling from all this fun Transverse Myelitis information, but, getting up, it becomes immediately clear that I now can’t walk without the aid of a walker. Worse . . . about 4:30pm Barbara’s leaving for the day and I’m walking her to the elevator. 


Through the walker handles I noticed some poop on the floor. I’ll have to tell a nurse so it can be cleaned up and no one will slip on it. As I’m returning to my room, I notice a continuous trail, like bread crumbs marking the way back. 


The poop’s mine. My healthcare has included adult diapers ever since.


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