Jessica's Journey: Three years ago today....

Monday, August 20, 2012

Three years ago today....

Hola everyone!!

Today is a very special day for me... It was three years ago today that my life-saving journey to Monterrey Mexico began!!!

On August 20^th, 2009, hooked up to more IV medications than I could count and in pain I can't even begin to describe, I got onto a private air ambulance to go to Mexico and become patient #23 to undergo the ketamine coma procedure-- my very last hope for survival.

Three years ago today...

I was only 21 years old, yet I had no life, no hope and no future. I had spent the past 4 years confined to a hospital bed and fed through a feeding tube. I weighed only 81 pounds. Painful sores burned through my skin and every movement, touch, light or sound caused unbearable pain and seizures.

Unfortunately, August 20th 2010 was just as scary and uncertain as the year prior....

After spending over 1 year in the hospital and making significant advances in my recovery, I was once again in critical condition. A severe septic infection caused my condition to relapse. I went into respiratory arrest and nearly died, my lungs collapsed and filled with fluid and my temperature dropped to only 91 degrees! I was dying. I was rushed back down to the ICU where I underwent an emergent second ketamine coma.

Two years ago today...

What seemed like an unfair, devastating turn of events at the time, however, ended up producing a major turning point in my recovery... I woke up, miraculously improved on August 23rd! We truly serve a God of miracles!!!

Thankfully, last year, August 20th 2011 was a much happier occasion!!! Although I was still in Mexico recovering, I was able to go out-- to somewhere other than the hospital-- for the first time in 5 years!!! I went out for dinner with my amazing friend Cindel! After not being able to eat for over 3 years I wanted to order every single thing on the menu! It was the first "normal" day I had ever spent as a 20-something year old girl and a memory I will cherish forever!

One year ago today...

I guess that brings me to today, August 20th 2012.

To celebrate this special day my awesome mom surprised me by arranging a special day at the beach, and allowed me to go swimming in the Gulf of Mexico for the first time in over 6 years!!! It took a lot of coordination and help from family and friends to make sure I got in and out safely, but it was one of the most incredible moments of my new life!!

TODAY....

I always say I can never describe in words the feeling of the intense pain that I went through for the past years..... but now I am also noticing that I have an equally hard time to put into words the joy, gratitude and pure excitement that I now feel to be able to live again!!

It's amazing how my life now looks nothing like it did 3 years ago... 2 years ago... or even 1 year ago!!

I am so grateful to everyone who helped make my life possible! I want to hug, kiss and thank each and every one of you in person-- I promise I will find a way!

I am so blessed to be 24, alive well and thriving! The same touches, lights and sounds that used to cause excruciating pain, have now turned into wonderful memories at the beach with my family. The legs I was told I would not move again are kicking in the water. My body that was not able to eat, now weighs a lot more than 81 pounds :) I have a lot of hope for the bright future I know God has planned for me

....and I am already looking forward to seeing what August 20th 2013 will bring! :)

God bless!!

Love,
Jessica

PS--- I couldn't let this special day go by without wishing a very Happy 3 Year Anniversary to Dr. Cantu "Green Shirt" and Dr. Barrientos "Luigi"!! :)

I know my mom will never be able to forget the looks on both of your faces when we met on this day 3 years ago... Yet still, perhaps despite your better judgment :) you gave me a chance. You never gave up on me and when I think about the many blessings the past 3 years have brought my way-- having you two come into my life is certainly at the very top of that long list! For years so many people prayed for my healing, and no doubt, you are both God's answer to those prayers! I love and respect you both more than my words can ever say.

"Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up. You will increase my honor and comfort me once more." -Psalm 71 19-22

**To post a comment, click on "comments" below**

16 comments:

Katherine said...: Congrats on 3 years!! The miracles that have happened over these years are truly amazing! God is great!! Love u!!

Love katherine; August 20, 2012 at 11:33 AM
Claudia Oranday said...: Sobrevivir no es lo mismo que Vivir. Por los pasados 6 años de tu vida has sido una sobreviviente y por los ultimos tres una luchadora incansable. A partir de hoy Dejas atras tu sobrevivir y comienzas a Vivir que para eso es el regalo de la vida. Disfruta de vida hermosa. Te amamos.
PD. (Ahora traducelo para que practiques tu español ja ja) :); August 20, 2012 at 12:06 PM
Kathy, Mark, Kerri and Erin said...: Happy anniversary Jessica to you, your wonderful family and to Dr. Cantu and Dr. Luis! So happy to hear what a great day you are having.; August 20, 2012 at 12:51 PM
Cindel said...: Muchas felicidades Jess!
I'm so glad to be in this journey with you, sharing the good and the bad times because that's what love is about.
There's always going to be a bump in the road on everyones journey because they are life lessons, but I'm so happy to know your road looks green and there's a double rainbow framing it (as cheesy as it sounds), but it reminded me of the card I made for you when I met you and at that point I didnt know I was in for such a ride :)
Thank you for all the lessons you've given us through your courage, patience, wisdom and love.
I'm thrilled to see you getting better every day, I hope next year you have more great memories to add to your extraordinary story (which I'm sure that's going to be the case!)
When you get back to Monterrey we'll go celebrate with a nice dinner again.
I love you very much.
Your mexican sister, Cindel.; August 20, 2012 at 1:49 PM
Michelle said...: Wow!!!! I cannot believe that it has already been 3 years! You are an amazing and beautiful sister and you are so strong! Thank God for all our miracles we have been given!! I love you so much!!!!!; August 20, 2012 at 3:14 PM
Rosemary and John said...: Hola Jessica!

You are truly a living miracle.

Through God's mercy and intervention and the devotion and wisdom of your Mother, family and Dr's. Cantu & "Luigi" you have begun your new life, free of RSD pain.

We are in awe of your courage and Grace. You've opened doors of hope for other sufferers and bridged generations and continents with your story.

Thank you for using your incredible journey to teach others (including the First Lady and The President of the United States)about this disease.

You are always an inspiration to us!

Lots of love, hugs and kisses!

Rosemary & John
xoox; August 20, 2012 at 4:16 PM
Fern said...: Congratulations my friend. Welcome to life!!; August 20, 2012 at 8:23 PM
Anonymous said...: Happy 3 years! Jessica, you are an inspiration to me, thank you for sharing your struggle against pain and suffering and this road that you traveled.

I love that you are able to hold so tightly to your Faith in Jesus Christ, and share that love with others.

I pray that your struggles in the journey you traveled will help others to understand this disease more, to find a cure.; August 21, 2012 at 12:17 PM
Anonymous said...: Love the video! Thank you for sharing this journey with us all. It was just awesome to see Him working.; August 22, 2012 at 7:18 PM
Anonymous said...: Hello Jessica, this is one of your new friends from Monterrey. Though we not yet met, Reading your story asures me that beautifull people such as you have "something" a "light" a dfferent understanding of thing and how this life should be.
I deeply wish you the best recovery and thank you for sharing your story, you are certainly a wonderfull girl growing stronger and fighting, that deserves all the respect and admiration I can have for you. God bless you!; August 26, 2012 at 10:22 PM
Anonymous said...: Thanks for the update, Jessica! You have definitely come a VERY long way. We are just thrilled at the GREAT progress you are making! We thank God for the answered prayers!; August 27, 2012 at 4:18 PM
Anonymous said...: Dear Jessica --

Thank you for such an AMAZING update! You are so beautiful and your words bring the happiest tears to our eyes. We are thrilled to see where you are today and we patiently await your updates to see what is in store for your future. The possibilities . . . endless!

Keep up the giant leaps. YOU ARE TRULY SPECTACULAR!

Love to you and your whole family!

The Klaus; August 27, 2012 at 9:34 PM
Anonymous said...: Wow .....speechless. Another beautiful update! Love it! Praying as always.; August 28, 2012 at 3:51 PM
Anonymous said...: It has been truly amazing to watch Jessica's Journey). I don't know of a situation that could have been more difficult.

But what a beacon of hope you and your family have been. Your hope and unshakable faith in our mighty God have been such an wonderful example of how we should be. God is not limited by what we think is possible.

Your hope has been well placed and a wonderful reminder to us all to place our trust there.; August 31, 2012 at 11:25 AM
Anonymous said...: Dearest Jessica, WOW!!!!!! I am thrilled for you and for your wonderful family that you are making up so well for lost time in such a joyous way!!! God gave you a new life and you are living it to the fullest!!! He is so great!!! Love and hugs to everyone!!! Angel xoxoxoxo
p.s. I hope Katherine is feeling better!!; September 2, 2012 at 10:38 PM
Anonymous said...: your story is absolutely incredible, it is one of the most amazing things I have ever read and you are so brave.. I am so happy for you and your family and friends that you have gotten through this .... may you have an amazing life xx; September 9, 2012 at 9:21 PM

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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.