Jessica's Journey: August 2013

Friday, August 23, 2013

Re-birth & Going to New York!! :)

“...Go home to your friends and tell them how much the Lord has done for you, and how he has had mercy on you.” Mark 5:19

Today is my "re-birthday!" :)

On August 23rd, 3 years ago today, I awoke from my second ketamine coma. Just 8 days after I nearly died, I woke up, on my own....singing! I could speak! I could breathe on my own! All of my tubes were removed! My lesions had healed! I could move my legs for the first time in 4 years! My pain was 90% gone! It was a true miracle!! I felt incredible! I felt healed!

I celebrate today as my re-birthday, as this was the turning point for my recovery. Yes, it was a long, slow process to get to where I am now, but since that day, it has been all small steps in the right direction!

August 23rd, 2010... Feeling much better!

So, in honor of my re-birthday, I am happy to announce that next month I will be taking a very special trip!

I am going "home" to Garden City, New York!!!

I have said from the moment I returned from Mexico, that I will not feel like my homecoming is truly complete until I make it back up to Garden City, NY to hug and thank everyone in person; whose love, support and prayers made my recovery possible... And now, it is happening!

I will be back home in GC from September 10th-17th! I will be showing a video of my journey and sharing my miracle in my hometown church, Lutheran Church of the Resurrection on Saturday night & Sunday morning (Sept. 14&15)!

If you are in the area, please come and say hi!

Lutheran Church of the Resurrection
420 Stewart Avenue
Garden City, NY 11530

I will be speaking after the Saturday Worship service which begins at 5:30pm, and during and after the Sunday services (8:30&11:00am) as well!

This trip means so much to me, on so many levels, and I am beyond excited to see everyone and share the miracle God has done in my life, through the help of so many who were literally the hands and feet of Jesus to my family and I, especially Pastor Browning and the church, the GCFD and my GC friends!

Can't wait to see everyone! I am soooo excited!!!

God bless!

Jessica

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Friday, August 16, 2013

Three years ago... Then & Now

On this day three years ago... I nearly died.

After only being out of the hospital for 2 weeks, having spent the previous 16 months inpatient, I contracted a rare infection and suffered a full RSD relapse. All of my symptoms returned and I was once again in agonizing pain, paralyzed, unable to move or eat.

On this day three years ago, my lungs collapsed and filled with fluid, every breath I took felt like 1,000 knives stabbing through my chest. I suffered cardio-respiratory arrest. My body temperature dropped down to only 91 degrees! I became unresponsive, and was rushed down to the ICU where my amazing doctors worked tirelessly to stabilize my life.

On this day three years ago, I was put in another ketamine coma to save my life.

Today...three years later, I officially completed my very first semester as a college student at Hodges University, where I am now studying medicine to become a Physician's Assistant!!

I have spent the past 12 weeks busy learning, studying, doing homework, writing research papers, giving oral presentations and taking exams.

...And I have loved every minute of it!!!! (See video below :)

I haven't really mentioned much about my new school adventure here on the blog; however, it's no secret that it has been my dream to join the medical field, (as a professional...not as a patient!) to help others going through similar health struggles and give them hope. And now, it is actually happening!!!

I started classes in mid-May, after taking a 3 part entrance exam, taking three classes during the summer semester to 'get my feet wet'. I wanted to wait and see how my brain/body handled the adjustment before making such a big, important announcement public; however, if you have talked to me at all in the past two months, you have probably heard me go on and on about how much I love my school, teachers, classmates and yes, even my books :)

It turns out, school and I are a good mix! I love it!!

There are really no words, except to say that I never cease to be amazed by God. Every detail, minor and major, regarding my entrance into Hodges University has had His fingerprints all over it!

I am forever grateful for the doors that have been opened for me to accomplish this dream. Especially to my admissions counselor, Christy and Dr. Pepe, for all of the help they have given me in making this possible. Everyone at Hodges has gone above and beyond to accommodate me. My situation is not exactly normal, yet, every professor, student and administrator has gone out of their way to make sure I was comfortable and my needs are met. Everything from scheduling preferences for my classes, professors working with me online while I traveled to Mexico, and even down to moving chairs out of the way and opening doors for me, they covered all bases! It's really been incredible.

Tonight, I took my last final, which means I have a few weeks off until my fall semester begins in September, when I will be starting some of my core medical classes. I can't wait!

I always told Dr. Cantu that I was going one day work with him, helping him treat others suffering from RSD, and now, in a few years when I graduate, I plan to make that dream a reality too!

I can't believe I am typing this update. If someone would have told me 3 years ago, as I lay in a bed, on life support, that just 3 years later, I would be sitting in a classroom, instead of a hospital room... I never, ever would have believed them. Yet, here I am.

I am in school! Studying medicine! I am well!!

I can't believe this is my new life! It feels dream-like and surreal to me. Honestly, I sometimes question whether or not I might still be asleep in the coma!

But this is real, and all I can really say, is praise be to God, who can do abundantly more than we can ever ask or imagine!!! When God promises to work all things together for good... He means it. This isn't my story, it's His story, the story He's chosen to write for my life and I am so humbled to be living it.

Thanks for checking in! Please stay tuned for another update coming soon about a very special trip I am making up to New York next month!! :)

God bless,
Jessica

You have turned my mourning into joyful dancing.
You have taken away my clothes of mourning and clothed me with joy,
that I might sing praises to you and not be silent.
O Lord my God, I will give you thanks forever!
-Psalm 30 11-12

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Jessica's Journey to Getting Her Life Back

By Sarah Gina (Jessica's Mom)

As we begin this journey toward renewed health we would like to express our sincere heartfelt thanks and appreciation to Dr. Anthony Kirkpatrick and all the work he has done and continues to do in order to bring patients like my daughter Jessica back to a more meaningful life and restored from this devastating illness. Also, special thanks to Dr. Fernando Cantu and his team of doctors in Mexico for taking on a difficult case like my daughters, Words cannot express the renewed sense of hope that we have that one day, our Jessica, can regain her life that has been taken away from her – God Bless you all!

Jessica’s Story

Once an A+ student who loved school, was involved in many extracurricular activities, played varsity tennis, lacrosse and gymnastics and enjoyed spending time with her family and friends, our daughter Jessica has spent the last 3 years incapacitated, paralyzed, unable to sit or walk and eat. She spends her days confined to a hospital bed, wearing sunglasses and noise-canceling headphones, due to severe light and sound sensitivity.

Jessica and her sisters, 2 mos. before becoming ill

The pain she feels is indescribable and all attempted treatments have not even come close to relieving her suffering.

She has seen many doctors, undergone numerous painful tests and procedures, has been prescribed various medications, and has been hospitalized frequently including being intubated and on a ventilator. She is severely debilitated and currently is only 92 pounds. This is certainly no life for a 21 year old young woman!

Jessica is suffering from neurologic Lyme disease and Reflex Sympathetic Dystrophy (RSD), a severely debilitating and painful neuromuscular disorder. She suffers daily with constant sharp, stabbing, tingling and burning pain; throughout her body; severe headaches; paralysis; intense muscle spasms; gastroparesis; seizures; twisting of her limbs (dystonia); sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; excessive sweating; swelling; fevers; softening of bones; decreased hair growth; redness and discoloration of the limbs; and painful skin ulcers. The pain is constant and unrelenting, but despite her suffering, her faith in God remains and she still has hope for her future.

Jessica's painful skin lesions

Jessica's journey began in 1999, when she was only 11 years old. She became very ill with Mono and was bed bound for 3 months. She subsequently developed RSD (stage 1) of the lower right leg. She received early intervention and returned to playing sports and enjoying her life.

Jessica, age 15, at summer camp

Four years later, in 2003, while away at a sleep-away camp, she developed a rash behind her right knee, coincidentally in the same leg that previously had RSD!

At the time, the camps nurse & doctor told her that it was “duck rash” – a rash from swimming in the lake with duck feces. However, Jessica was able to obtain photos from camp from another camper which shows the classic “bulls-eye” rash from Lyme disease! It wasn’t until much later and only after developing symptoms and becoming very ill, was the diagnosis of Lyme disease and Babesiosis (another tick-borne infection) made.

Most people (and doctors!) have no idea how serious Lyme disease can become and no clue how to properly diagnose it. Unfortunately, if she would have been promptly diagnosed and treated for Lyme disease, the RSD would not have been triggered and she would not be suffering.

July 2003, Jessica's Lyme disease rash

If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!

During these past three years and with the pain becoming more intense and unbearable she has been seeing Dr. Finkelstein for pain management. He has even made house calls to spare her the pain of coming by ambulance to his office. Jessica has been treated with multiple pain medications, at the highest possible doses, as well as an implanted dilaudid pain pump, which delivers potent medication straight into her spine. Many doctors have told us that with the amount of medications Jessica was taking would be enough to “kill a horse”—yet they had little to no effect on her. If it wasn’t for Dr. Finkelstein trying to alleviate her constant, severe, unrelenting pain, I don’t know how she would have managed. He is very special to us as well.

Recently Jessica was transported by air ambulance to Tampa, Florida to see Dr. Anthony Kirkpatrick, a world renowned RSD expert. Dr. Kirkpatrick told us that Jessica is one of the most debilitated patients he has ever seen.

Jessica getting into the air-ambulance to go see Dr. Kirkpatrick

Upon his testing and because Jessica's condition is so severe, Dr. Kirkpatrick is recommending the only treatment available that can possibly help relieve her suffering, and afford her some semblance of a “normal” life - the Ketamine Coma Procedure - a clinical trial that is being conducted in Monterrey, Mexico.

During this procedure Jessica will be put into a coma , with the hope that her nerves, brain and spinal cord will “reset” -so that her nervous system sends the correct signals to her brain.

Yes, this is a radical, scary treatment, however, for Jessica, "scary" is thinking that she could spend the rest of her life in this condition, unable to walk, eat, or take care of herself. Since all reasonable treatments have failed to help her, we feel we must try everything possible to help Jessica regain her life.

We understand that due to Jessica’s fragile condition, there is a high risk associated with this procedure. We are also aware that other patients with severe RSD like Jessica's have had success.

Jessica’s goal is to one day become a doctor. Our hope is that with this study she can have that chance. As her Mom, I know that she will be a great doctor because when a patient presents in her office and says “Doctor, I am in pain and words cannot express how bad it is” – my daughter –Dr. Jessica– will be able to say - :I know how you feel, I’ve been there too. So, take a seat and let me tell you a story”….

We are so thankful and feel so blessed to have been led to Dr. Kirkpatrick.

God is good and with his help guiding Dr. Cantu and Dr. Kirkpatrick, our hope is for Jessica to be able to return to us whole again and pain-free!

What is RSD?

Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire...

Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating chronic neurological disorder that occurs when the nervous system malfunctions in response to a injury or illness- in Jessica's case- Lyme disease.

RSD is characterized by: Continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis.

This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it.

Ketamine Coma Study

The Ketamine Coma Study is a clinical trial procedure being conducted in both Germany and Mexico, that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.

During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.

So far, only about 100 patients have taken part in the study. For many, it has been miraculous!
However, like any treatment, there are no guarantees. There are also significant risks, especially in Jessica's fragile condition.

The Ketamine Coma shows great promise as a treatment for severe RSD- the key is going to be more research.

What is Ketamine?

Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals.

There are currently three kinds of ketamine treatments: The Awake technique (continuous low dosage for 4-5 days), the Outpatient low-dose infusion (4-5 hours a day for two weeks, then gradually-lower doses), and the Coma technique (continuous high dosage for about a week).

The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and "reboots" the patient's brain, much like a computer.

Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness.

Why Mexico?

There is a popular misconception that medical care in Mexico is of inferior quality. However, this is not (always) the case. In fact, many facilities in Mexico are state of the art, with top notch care.

Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries.

Jessica's doctor, Dr. Anthony Kirkpatrick, is one of only a few specialists involved with this study in the U.S. He has teamed up with Dr. Fernando Cantu and his team in Mexico to perform the Ketamine Coma.