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 20th, 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 

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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!