Jessica's Journey: Going on Mexican TV (Televisa) Monday !!!

Saturday, May 5, 2012

Going on Mexican TV (Televisa) Monday !!!

Hi everyone! I wanted to share some exciting news with you all! On Monday, my story is going to be on Mexican TV!

Earlier this week, Vicente Valdez, a reporter from Mexican TV station “Televisa” came and did an interview with me, mom, Dr. Cantu (aka green-shirt) and Dr. Barrientos (aka Luigi) about RSD, the ketamine coma and my “Miracle in Monterrey”!

Interestingly, we are told that this will be the FIRST segment to ever air about RSD on Mexican TV (or distrofia simpatica refleja, as it is called here)!!!

I am very excited and know that this will bring about much greater awareness of RSD, here in Monterrey, where so many lives have been restored from it thanks to the dedication and wisdom of the amazing Dr. Fernando Cantu (who, by the way, I got to see wearing a white "doctors coat" for the first time ever, for this interview!)

...This interview is very important to me personally.

I have been talking so much about my story and doing interviews back home in the US, but the one thing missing from them all has been the faces, voices, smiles and comments of my two heroes who saved my life!

It has been God’s work through their hands that brought me out of the torturous pain and suffering that I lived with for so many years and they deserve all of the glory, honor and recognition for everything that they have done!

It was very special for me to be able to honor them in this way, here in their country, so that everyone in Monterrey will know of the miracle and life-saving treatment that took place here and also as a way to thank all of the staff at Hospital San Jose and the many friends and family that we now have in Monterrey, for all of their love, support and prayers.

I have to say though, that filming a segment for Mexican TV is MUCH easier and a lot less “work” than filming in the US!

The only thing that made this a little more challenging was that I had to speak totally in Spanish!!!

I felt SO proud of both doctors as we sat there, re-living the journey we have all taken together over the past 2.5 years. They did a fantastic job!

Here are some ‘behind the scenes’ pictures my mom took of me and the doctors being filmed, walking around the Safi Hotel, where we have been staying this past week.

Jorge Safi, the owner of the hotel, has been so kind, supportive and accommodating of me and my special situation and we are so thankful to him for making our stay here so comfortable. He even let us use one of the really nice conference rooms upstairs to film the interview in!

Vicente Valdez sat down with the 4 of us and questioned us individually.

First, Dr. Cantu was asked to explain what RSD is, how it occurs, treatment options and his involvement with the Ketamine Coma Study.

Next, he had my mom describe what my life was like before coming to Monterrey and what led to our decision to undergo this radical and risky treatment with the hopes of saving my life.

Then he than asked me to describe what the pain of RSD feels like, what I endured these past 6 years and what it feels like now to have a new life! He also asked me to talk a bit about my meeting “La Primera Dama”—First Lady Michelle Obama!

Last, he interviewed Dr. Luigi. Luigi was the first doctor to see and evaluate me when I landed by private air ambulance to Hospital San Jose 2.5 years ago. Vicente asked him to describe what my condition was like, and what his first thoughts were upon seeing me back then.

Wow. That was rough and very emotional to hear, but necessary to show everyone just how devastating and horrible this condition can progress.

...What can I even say about these two guys?! How do you even begin to ever thank someone for saving your life (multiple times?!)

....I don’t know the answer to that, but what I do know is that they are forever in my heart and will always be a part of my family—my Mexican father and my Mexican brother. :)

The interview will be airing on Televisa Monterrey this Monday (5/7) ! I am told they are going to show the story 3 times throughout the day- Between 6am-10am, 12pm-2pm and 7pm-9pm

Televisa Monterrey is channel “3” on cable, ch. 34 regular TV, and ch. 142 on “sky”.

I will post a link to it on here once it is online, as well as a translation of the script for everyone too!

Thanks for checking in!

Dios te bendiga!

Love, Jessica

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

9 comments:

Rosemary and John said...: Hi Jessica!

You have to give us more time in between your blogs so we can find some new words to express our feelings!

This is another fantastic and amazing story! We love all the pictures which help to tell the story of your interview on Mexican T.V. with Dr. Cantu and Dr. Luigi. Seeing Dr. Cantu in a white doctors coat was a shock in itself! We cannot wait to be able to view it BUT how will we understand what was said? I hope you can write a translation of what everyone was saying so we can read along as we watch the visual!

You continue to amaze and inspire and are living the life our Lord has planned for you. Please take some time to rest and breathe in the wonders of the past few months that have taken you to the moon and back!

Love and Hugs and many Kisses!

Rosemary & John (and Papa too)!; May 6, 2012 at 9:45 AM
Fern said...: Wow! You are working hard to shout from the rooftops! Your sentiment about those two doctors is one we share. Though I did not spend so long there, they rescued me in more ways than one.

I hope and pray that success will come from this opportunity you have to be a spokesperson. I hope and pray that you will given the extra measure of energy needed to keep up the pace and that God would strengthen the whole family as you are up front in the faces of so many! May God protect you and and guide you.

I would like to hear more about the hotel. Looks real nice from the pictures; May 6, 2012 at 12:18 PM
Anonymous said...: My dearest Jessica:
Words can not express what I feel when I read your journey. You are an example of faith courage and willingness to live!
I have not stopped crying tears of happiness for you and your incredible and amazing mom.
I witnessed many a night in the hospital how your mom suffered, desperately trying to help you any way she could. When I met you, you could not even speak, hardly open your eyes to light, or keep much focus. I also remember when you were much better and able to leave the hospital! That brought so much happiness to my heart.
Jessica, I have suffered from RSD for 25 years, have gone through the coma and also consider Dr. Cantu my guardian angel. However, what you are doing on behalf of all of us and all others who suffer from RSD is priceless!
You and your mom are not only an example to follow but a precedent of strength and kindness.

With all my respect and love
Elena Cohen; May 8, 2012 at 2:25 AM
Anonymous said...: Dear Jessica --

As always, beautiful -- just beautiful. I know I've said it before, but you have such an amazing talent for putting your words on "paper" -- between the pictures and your heartfelt words, I am again in desperate need of a tissue.

Keep up those giant steps, dearest girl . . . you are an inspiration!

With love to you & your family,
The Klatts; May 12, 2012 at 8:52 AM
Elana said...: Jess, you know that I too feel the same sentiment for the two angel doctors from heaven! Thank you, on behalf of me & my family, for everything you're doing to get awareness out there. You & your mom will always be a huge part of my family!!

Thanks Sarah for the behind the scene photos!!
Xo,elana; May 13, 2012 at 4:11 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.