Category: Artificial Disc Replacement (ADR)

In this Update:

• A Muddy Adventure
• Mass-Casualty Incident (MCI)
• School, Work, and Devastation

A Muddy Adventure
A couple weekends ago, Ralf and I drove four hours south to the Everglades to participate in the Fakahatchee Grind – one of those bikepacking events organized by Singletrack Samurai (Karlos) that Ralf has participated in many times in the past. However, this time there was a difference: instead of me dropping Ralf off/picking him up for such events, I actually tagged along! Besides the long car-ride, this event also entailed tent-camping and riding on muddy trails during a downpour while avoiding getting eaten by a gator…

When we arrived at the Fakahatchee Preserve in the late afternoon, we were greeted by a school of vultures that we had to pass on the way to the camping area. A bad omen? Not really, but it was a tad weird…

After setting up the tent and getting the bikes ready for the next day, we sat around a campfire with other participants before turning in for the night. This was the first time I slept on a flimsy mattress in a (barely) two-person tent since I was 16 years old… The good news: it didn’t bother my back at all, not the crawling in and out of the tent, nor the cramped and unusual sleeping-positions I had to assume. I have to admit though that a possible future investment into a small camper sounds like an excellent idea…

The next morning, Ralf and the other riders got ready for the start of the Fakahatchee Grind. Since the shortest route was about 45 miles long, I decided to do my own thing. I am still trying to find a good saddle that I can sit on for long periods of time, and I was afraid that I won’t be able to keep up at this time.

After the group departed, I broke down the tent and packed all our belongings in the car. I then got a paper map of the preserve and looked at my options: Karlos suggested to follow the scenic trail to Gate 7, from which I could get to some of the actual trails. That sounded like an excellent idea – if it wasn’t for the monsoon that started to pour upon me about 45 minutes into my ride.

After riding the scenic trail for about six miles, which was mostly hard-packed gravel, I made it to Gate 7. As I am approaching the gate entrance, I saw an unraveled piece of tire laying smack in the middle. That was until I realized that the tire was indeed the tail of a giant gator. When I was only a few feet away, it decided I wasn’t worth the hassle and lazily made his way into the bushes and adjacent body of water. In my surprise, I wasn't fast enough with my camera though and only got the "tail-end" of things....

Even though the rain was now really starting to pick up, I entered the trail and started my exploration. Well, rain turned into a whole lot of water, which turned the ground into a muddy mess and significantly reduced visibility within a couple of minutes. As I pushed on, bumbling over rocks, cypress knees, and through mud-holes, a I saw headlights approaching me, fast! Mind me not, I am in the middle of the woods, somewhere in the Everglades! As it turned out, a park ranger had to rescue a rider who fell off his bike and seriously hurt his leg just a mile up the trail. He was in a golf cart-sized four-wheeler, so as he came at me, I squeezed myself with my bike as close to the edge of the jungle as possible to let him pass. The ranger inquired if I needed help as well, which I declined. I was going to finish what I started!

When I reached a fork on the trail, I tried to rely on my paper map for orientation. Well, the problem was that it more or less dissolved due to the rain, and when I pulled it out from my waistband, the ink was stuck on my belly like a tattoo and the pages just stuck together. Great, there goes my navigation. I decided to turn to the right in hopes to eventually re-connect to the scenic trail. Unfortunately, as I pushed on, the trail started to fork again, going in three different directions. Since I was by myself, I decided to play it safe and turned around to backtrack where I came from.

Luckily for me, I marked the correct trail with an arrow in the ground so that I wouldn’t get lost in case I had to retreat.

That kind of made me feel even more like an adventurer, and I admit that even though I was covered in mud, completely drenched, and on my own, it was a lot of fun! On my way back down the trail, the rain finally stopped, and I got to explore a few strange structures along the way, such as an abandoned cabin and a rather deserted “picnic area”. Unfortunately, I couldn’t really stand still for long due to biting yellow flies that found me very tasty. I suppose all the rain had washed off the Deet and sunscreen, exposing me to become part of their menu.

I finally made it back to the scenic trail (and thank goodness, the gator did not return). At this point I decided to continue on the trail to its end point (another seven miles), and then turn around to return to camp. I saw a lot more gators, turtles, and birds along the way (it was pretty scenic, lol), and when I reached the end, there was actually a checkpoint set up by the park rangers, with water. As it turned out, I just missed Ralf and his group that came from a different trail, so he had 30 more miles to go, whereas I chose to backtrack the 11 miles on the scenic trail.

Upon my return to camp, I discovered the outside shower that was set up! So I grabbed a change of clothes and a towel and started walking to the shower area. That is when a truck pulled up next to me, and the couple then asked me if I wanted the rest of their baby shampoo. I suppose I looked the part since this was the first time that some strangers offered me shampoo as I was walking on the side of a trail, somewhere in the Everglades…

In any case, this was a very nice adventure, and I am truly amazed about the things I can do again. Ralf and I spend the night in a B&B in Everglades city, which I was so grateful for, and the next day we made our way back home.

Mass-Casualty Incident (MCI)
This month, our community conducted the annual MCI training event, in which all hospitals, first responders, and other ancillary services train together during a mock mass disaster event. This year, the scenario entailed a massive explosion at the convention center, along with four active shooters. There were over 200 “victims” with various degrees of injury, and we got 20 of them at the Orlando VA Hospital. Since I am part of the Emergency Response Team, my role was to “treat and stabilize” in the made-up treatment area and then decide who gets transferred to the ED first. I must say that even though this is all “make-believe”, these events are very intense and chaotic, so I was pretty drained after all was set and done. Emergency Management and Disaster Response have always been a passion of mine, and I hope our team gets now more training opportunities as funding has finally improved this year.

School, Work, and Devastation
April also marked the last month of the spring semester, and between full-time work, helping out with TNCC classes on my days off, and pending assignments and research papers, I never really caught a break besides the outing to the Everglades.

However, all this paled in the face of tragedy, as my dear friend Bergie's beautiful daughter Lourdes suddenly became gravely ill, went into respiratory failure, and ended up on a ventilator and a “rotoprone” bed in the intensive care unit within one week! It was only a few months ago that we celebrated Bergie’s birthday at Hamburger Mary’s! It was Lourdes who made me flowers out of tea bags to include in the beautiful gift basket full of inspirational items the day before I flew to Germany to have spinal surgery – just to give me courage and support!

beLots of prayers and a couple miracles that needed to happen made it possible for Lourdes to go home on high-flow oxygen and pain medication on April 23^rd – that was her ultimate and dearest wish, to go home! I so wish she had more time but this pure and beautiful soul passed away peacefully at 04:45 AM the following morning, leaving her mother Bergie and all her friends in devastation. I am just grateful that I was able to rub her little feet and say good-bye to Lourdes, but I am pretty mad at the universe for taking her away so suddenly and unexpectedly. Of all the people on this planet, Lourdes deserves to be here! And I truly wish I had more time to get to know this incredible human being and shining soul much better. We love you, Lourdes!

In this Update:

• Changing roles
• Getting ready for my follow up
• Petition
• Cirque du Soleil – Luzia

Changing roles
I love emergency nursing. In fact, I joined the Emergency Nurses Association while I was in my senior year of nursing school. But what that last year has also taught me is that I need to decrease my level of constant stress and look out for my health. Granted, my initial disc herniation at L5/S1 was due to a car accident many years ago but I can’t deny that my job certainly didn’t help, especially during the last couple of years when things got from bad to worse. Most importantly, I realized that being under constant stress the way I have been is not how I want to continue my life.
So, I decided a while back to make some changes, but it will most likely take me until the end of the year to make it happen. Good news is that I can still be on the DEMPS disaster relief team and on my local Director’s 50 Emergency Response team – both also passions of mine.

Sooo, we have that impressive National SimLearn Center located right across from where my hospital is at (it’s also VA-related). I am going to finish my Master’s degree as Nurse Educator by the end of this year, and I really would like to transition there. One course that is being taught at the SimLearn Center is the “Trauma Nurse Core Curriculum “course, so I decided to become an instructor. Unfortunately, I work under management that doesn’t really support growth and continued education, and during the last couple of weeks I actually had to use my days off and even vacation time to attend this class where my performance was evaluated. That meant that I had to deal with 16-hour days. After eight hours of class I had to finish up eight hours of work, so I was ‘on’ from 7 o’clock in the morning to almost midnight, and only to do it again the next day. Mind me not, I had to take vacation time for the class hours that overlapped the beginning of my shift... But I did it. Somehow. It’s a blur at this time. So, say “hello” to your new TNCC trauma nurse instructor!

Thank you, LP-ESP, for not letting me down, even though I was either standing for hours, sitting in a class room for hours, or running around at work for hours. Couldn’t have done it without you!

Getting ready for my follow-up
Also quite exciting, at least to me, is the fact that I am approaching the one-year mark post ADR surgery! One year! I just got my orders placed for x-rays and will be getting this done this coming Thursday. Dr. Desai’s office sent me a link to submit my images electronically, and if that works out as planned, this service will be available to all future patients!

I am planning to write a more detailed reflection on the past year in the next edition. I am actually quite anxious to see what the images look like, especially since I didn’t work out for an entire month due to the stress and lack of time from work, graduate school, and other miscellaneous obligations. I did hear some weird clicking sound a couple of times during the past several weeks, but I couldn’t quite place it. I have absolutely no pain, so I am not sure where it came from. It didn’t happen often, and I haven't heard it in a while, so I hope it is benign.

Petition
I received an email request through my website from Backernation.com, asking me to share a petition they started in an effort to overturn Aetna’s stance on denying lumbar ADR coverage for their patients.

Aetna’s policy review of lumbar ADR coverage is coming up in June, so Backernation created this petition as one way of ensuring that our voices are heard: http://chng.it/6Q9mxPvcVS

I have been on their website in the past when I was doing ADR-related research, so I am somewhat familiar with them. Backernation also shared an article that explains why Aenta changed their policy in the past to refuse lumbar ADR coverage now: https://backernation.com/healthcare/insurance/major-health-insurer-refuses-patient-access-to-lumbar-total-disc-replacement

In any case, I thought I share.

Cirque du Soleil – Luzia
Even though I have been so stressed and feel like the days are simply not long enough to accommodate all I need to do, Ralf and I did attend the Cirque du Soleil – Luzia performance last Saturday night. Those tickets were a Christmas present, and we had not just awesome seats but also enjoyed the show tremendously.

Even with that extremely excited older guy that was sitting next to me, yelling “Bravo” and stomping his little feet with the music…. Because the temporary seating was rather crammed, it was a tad annoying (and I deep down wished for a syringe filled with Ativan a couple of times), but you couldn’t really be mad at the guy since he was obviously completely mesmerized… In any case, it was a nice break, even if it was only for a couple of hours.

In this Update

• Picking up the pieces
• So much to do!
• Spending time with friends

Picking up the pieces

The last couple of weeks have been very difficult, and I can only manage things one day at a time. We got our baby’s ashes back on Valentine’s Day, and it helped a lot to “have him back”. I had to rearrange my schedule because bursting into tears periodically at work wasn’t working out, so we decided to get away for one night to Coral Gables in Miami. I know some people may find that silly, but I couldn’t stand the thought that Poncebear would be home alone, so we took his ashes with us…

Now, I am slowly coming to terms with that our baby is gone, and I am grateful that I am somewhat able to focus on all those tasks at hand again. We made a nice memorial in our living room, and I touch his little paw print all the time. At least he is home…

PS: I didn't realize the variety of lizards south Florida has to offer...

So much to do!

With that being said, my to-do list appears to be a mile long, and between doing some work to connect Dr. Desai’s hospital administration with Blue Cross Blue Shield, graduate study due dates, TNCC Trauma Nursing instructor certification preparation, and heavy-duty stress at work, I barely get to sleep anymore. I admit that I am a tad overwhelmed right now, but at least I am not in physical pain. I can’t even imagine doing all this with a broken back and nauseating pain… So, I AM looking on the “bright side”, even though I didn’t get to go to the gym AT ALL since Ponce passed away. But after I am done with the last part of the trauma certification next week, I should have more time and less stress  – I can’t wait!

Spending time with friends

Part of my busy schedule was due to the fact that I needed to “work ahead” to make time to spend with some special friends who visited us from Pittsburgh/DC for a few days. And, boy, did we make the most out of that short time.

We picked up Rachel, Mara, and Ana form the airport around 11 am, went for breakfast, followed by (yet another) airboat ride on the St. John’s river, which had a lot of gators to showcast. After that, we went for a 3-mile hike in the Orlando Wetlands Park (more gators), followed by dinner at our favorite Thai restaurant.

The next day, we all went to visit (and climb) the Ponce Inlet Lighthouse (yes, my baby is everywhere) by New Smyrna Beach. We got so lucky with the weather, especially since the rest of the country has been rather chilly these days… Now, to get to the viewing platform of the lighthouse, we had to take the stairs: 202 of them (of course both ways). That had my calves and thighs burning for sure, so I consider that a mini-workout. After another small hike through the area, we headed over to the Smyrna Dunes beach, located within a nature preserve. We even saw a bunch of dolphins so close to the shore, it was amazing!

Day three entailed a hike through Blue Springs state park, and even though there weren’t any manatees to be seen, we really enjoyed the beautiful scenery. I actually haven’t been there in a very long time (Ralf and I used to freedive there years ago). After Blue Springs, we visited the “spiritual community” of Cassadaga, but instead of having our fortune read, we went yet for another 2-mile hike through typical Florida trails.

So: first a LOT of sitting in front of my computer, coupled with running around at work, followed by lots and lots of hiking, climbing stairs, beach-walking, and sitting in the car to get to places (thanks for driving, Ralf!) were the “activity-highlights” of the last couple of weeks. As I mentioned, I hope to be able to return to the gym toward the end next week, and I am also thinking about some jogging to come. We’ll see how it goes.

Also, it is about that time to make an appointment with Dr. Gayles to get my 1-year follow up X-rays done! With all what my back has been through so far, I am quite anxious to see if anything has changed!

This is going to be a short update, but I wanted to share a victory that I consider huge, but I am also experiencing a very devastating loss right now. First of all, my back is still fine, I didn’t get as many workouts in as I wanted over the last couple of weeks, mostly due to a nasty sinus infection. Right now, it’s not my back that is broken but my heart.

Victory
I have fought hard and long to get my ADR surgery approved and covered by my insurance carrier, Blue Cross Blue Shield (BCBS). At the beginning of my journey, I tried to get pre-authorization in the United States, first in Miami with Dr. Garcia, then Dr. Zigler at the Texas Back Institute. Both of these initial attempts, as well as the peer-to-peer reviews were unsuccessful (the procedure was deemed not medically necessary). I was denied appeal rights in Florida (which I still believe was not legal), and the written appeal through Dr. Zigler was again denied. That is when I paid out-of-pocket and went to Germany to have surgery with Dr. Desai, which has turned out to be the best decision of my life.

Upon my return to the US, I filed an international claim with BCBS for reimbursement. At that point I knew of so many others who got reimbursed for the exact same surgery and disc. But of course, I was denied coverage yet again still on the grounds of the procedure not being “medically necessary”. I filed a written appeal, complete with letter of medical necessity and my medical history, but I was denied again, but this time for the ESP disc not being FDA-approved. I had one last shot: filing an external appeal. I made one last effort, making my case and providing all the evidence I had, and submitted that last year in September. In early October, I received a letter from OPM (Office of Personnel Management), confirming that my appeal has been assigned a case number. Then I didn’t hear back until now .

A few days ago, I received the letter from OPM, stating that the reviewing physician ruled that my lumbar Artificial Disc surgery WAS INDEED medically necessary and an appropriate treatment option for me. I got the Explanation of Benefits from BCBC today, and also received a direct-deposit into my account this morning, covering the majority of my medical bill (but of course not all associated costs). So, later today, I will go to my credit union to pay off the loan I had to take out to finance my surgery in Germany.

I consider this not just a victory for myself, but for all others who seek coverage for ADR surgery. Health insurance is not cheap, and the least they should do is pay for our medical needs when we need it!

Devastation
I have posted about my sweet baby Ponce in the past. Due to a congenital heart defect, he developed severe congestive heart failure that became very evident during the summer of last year. We managed his condition with a sophisticated medication schedule as best we could, and he was such a happy puppy! As his condition progressed, we bought a “Ponce-mobile”, a pet stroller to be able to take him places. We would take him to Menchies’ frozen yogurt to have the sample cup of vanilla ice cream. We sometimes would go to that Italian restaurant close to our home, getting a table outside with Ponce sitting in his stroller, waiting for snacks. Even with that bad hand that nature has dealt him, he was so happy and the best puppy anybody could ever ask for.

Since November last year, we started to carry him up the stairs in our townhome, so his big heart didn’t have to work so hard (he had the tendency to race up the stairs, which wasn’t good for his condition). So, in hindsight, I got to hold him in my arms so many times, and I would give him kisses on the head while walking up the stairs. I would give anything to hold him just one more time.

On Saturday, February 9, 2019, I came home late from my midshift at work. As I was about to walk in, Ralf came out with Ponce on the leash because the puppy was restless. Around that time, Ponce went into significant respiratory distress, panting, coughing, not being able to settle down. At 2 am, we took him to an emergency vet to get a shot of Lasix, a diuretic (“waterpill”) to get the fluids out of his lungs. After all, that was what helped Ponce the last time this happened. But not this time. We didn’t want to leave him at the vet all alone, so we took him home. But he was still struggling to breathe. So, we turned around and took him right back, where he was placed on oxygen. The vet informed us that there is no realistic hope that he would recover again from this, so we had to make that horrible but kind decision. We made our baby a promise that we won’t let him suffer.

Our precious, innocent, sweet Poncebear passed away in peace, in the early morning hours on Sunday, nestled between both of our arms while we talked to him, kissing his little head, petting his fur that was supposed to be groomed the very next day on Monday. Then we had to walk out of that room, having to leave behind our baby laying on his angel blanket on that exam room table, then sitting in the car in front of the vet’s office, having to drive away without my baby in the backseat.

Words cannot describe what I feel right now. I am chocking on tears, re-living this moment, feeling guilty, even though I know it was the right thing to do. I hate coming home, where there is no Poncebear greeting me at the stairs. He left such a huge void, and I hate the thought that he is “out there” until we get his ashes back, hopefully on Thursday or Friday. Then our baby will come home forever. We love you so very much, Poncebear!