Strides of Strength for Kathy Gagne

Join us in Strides of Strength for Kathy Gagne as she begins another part of her medical journey towards healing. Every dollar raised will go towards her specialized treatment plan costing more than $90,000 for a cure.

For those who do not know me, I am 65 years old and until March of this year, was in excellent health. I’ve spent the last 45 years of my life working as a nurse and caring for others. After recently retiring, I was looking forward to traveling with my husband, spending time with my family, and volunteering in my community. Never did I think I would be in the position I am today.

After 2 months of extensive and expensive lab testing, it has been determined I have (among other chronic infections) Neuroborrelioses – infections caused by the Borrelia bacteria – the tick-borne bacteria that causes Lyme Disease. Left undetected, it is often misdiagnosed as MS and severely crippling and life altering.

My health condition will require at least 8 weeks of intensive infusion therapy at a specialized facility in Scottsdale, Arizona. This will require insertion of a temporary catheter, 3 times a week infusion, upwards of 30 supplements a day, on top of multiple other modalities to get me well. For the first time in 8 months, I have hope. While this is not how I thought I would spend my Retirment, I'm ready for the fight of my life and will come out the other side. Thank you for all of your support.

The full experience is below.

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My health nightmare began the morning of March 9th when I had a sudden onset of pain between my shoulder blades and could not get myself out of bed. I started having trouble breathing and could not even stand by the time EMTs arrived. When they arrived my blood pressure was dangerously low, and they needed to administer IV fluids to keep my blood pressure stable while we made it to the ER.

The local ER quickly ruled out a stroke, but it took most of the day before they determined I had Transverse Myelitis (A rare inflammation of the spinal cord). By early evening my condition became critical and I could no longer support my airway. I had to be placed on a ventilator and transferred to Memorial Hospital in Savannah for more complex care.

I woke up 2 days later in the ICU still on the ventilator, with a feeding tube in my nose and a dialysis catheter in my neck for plasmapheresis. (I learned later this process clears sediment from plasma and was pivotal to assisting with my neurological recovery). As a former ICU nurse, my mind was racing after taking inventory of my surroundings. I could not move my arms or legs but was strong enough to have the breathing tube removed later that day. The hardest thing that day was seeing the fear in my husband’s and daughters’ faces when they came in. We all had no idea what had happened, or if I would recover any function. Unfortunately, my medical team was not able to provide any answers or guarantees.

I spent 7 days in the ICU and another 5 days on the neuro floor before being transferred to a rehab facility in Bluffton. I could move my legs and had some motion in my right arm but that was about it. At this point I was not even able to turn myself in bed or call for help. I couldn’t stand or walk, was unable to feed or care for myself, and depended on a catheter for bladder function.

Once I got to the rehab, the real work began. I was in rehab for 2 weeks with 3 hours a day of Physical and occupational therapy. For those of you that don’t know what that means, I basically had to relearn to walk, write, feed and care for myself on a daily basis. The focus was on getting me as independent as possible to get home. It was grueling at first but by the time I was discharged, I could walk with a walker and shower and groom myself with assistance. I had more use of my right hand but still needed help with meals set-up and getting dressed. Simple things such as opening a can, holding a glass, blow dryer my hair, getting up out of the chair were no longer simple. I was 65 years old and a “good day” was getting through without bladder leaks!

I went home on April 4th and for the next 4 months went to out-patient therapy three times a week to work on strength and balance, and at home pelvic therapy daily. My greatest challenge was finding a neurologist to take on my care as my condition was so rare most did not want to or know how to treat me. My care team at Memorial gave conflicting opinions of what my final diagnosis was. The discharge neurologist who I saw me for all of 15 minutes on my last day said NMO(Neuromyelitis Optic) and walked away. It was the first time anyone had ever mentioned this syndrome. And after doing some research, my daughters and I said, “no way”. It just didn’t make sense.

I spent several months going back and forth to MUSC undergoing scans, procedures and blood work only to be told the same thing yet something in me just would not accept this . It didn’t make sense to me and my family as the characteristic symptoms of NMO were visual changes and lesions on the optic nerve, neither of which I had.

After much research and refusal to accept this as my fate, I was able to seek out another opinion in Scottsdale Arizona at Envita Medical Center. They specialize in functional medicine approaches and specialize in rare cancers and chronic infections related to Lyme disease and viruses. I lived most of my life in Rhode Island and camped throughout New England, so this was starting to all make sense to me. My new team immediately focused on the potential that this could be a chronic Lyme infection. After 2 months of extensive and expensive lab testing, it has been determined I have (among other chronic infections) Neuroborrelioses – infections caused by the Borrelia bacteria – the tick-borne bacteria that causes Lyme Disease. Left undetected, it is often misdiagnosed as MS and severely crippling and life altering.

Just prior to getting these results, it was also determined by the Neuro Ophthalmologist at MUSC that the MRI reading was wrong, and I never had optic neuritis, which my neuro team was using for the diagnosis of NMO. SO, we were back at square one.

I am now approaching 8 months since this nightmare that changed my life began. On a day-to-day basis I struggle with significant pain and numbness and tingling in my upper body. My low body feels cold all the time, despite living in SC and if you know you know. My upper arms are significantly weak and most days its hard to even hold onto objects. My muscle tone is weak, but I can walk without a cane. Most days by mid-day I am very off balance and need to take a nap to recharge my batteries and make it through the rest of the day. Simple daily tasks sometimes take hours and the constant fatigue some day is crippling. I wake up around 7-8 and by 10- 11am I'm forced to nap or I can't make it through. For someone who used to run circles around my grandkids this is no life for me.

My medical team at Evita are the first to give me not only a definitive diagnosis, but a treatment plan and hope to get some quality of life back. That is what I want more than anything, but it won’t be easy.

It will require at least 8 weeks of intensive infusion therapy at the facility in Scottsdale, Arizona. This will require insertion of a temporary catheter, 3 times a week infusion, upwards of 30 supplements a day, on top of multiple other modalities to get me well. For the first time in 8 months, I have hope. While this is not how I thought I would spend my Retirment, I'm ready for the fight of my life and will come out the other side.

I met James Dismond, late October of last year prior to all this happening. When we met, I was thrilled to hear about what he was a part of and immediately wanted to give my time and services. Never did I think I would be on the receiving side. My goal is to get back to my baseline, So I can give back to the wonderful community of Bluffton. Thank you for all of your support.