Jessica's Journey: Muchas Gracias!

Saturday, November 14, 2009

Muchas Gracias!

Hi everyone,

TO VIEW JESSICA ON FOX TV - CLICK ON LINK:

http://www.youtube.com/watch?v=PW_vstm0bS8

***There is going to be a special fund raising item that is going to be announced very soon. It involves a special necklace that was designed especially for Jessica and all the proceeds from the sales of this item will be donated to Jessica's Journey Savings Club! I have seen it and it is beautiful! It was made in honor of Jessica and her efforts to increase Lyme disease awareness, something that Jessica has been very passionate about since she has been battling that disease for the past four years as well! As soon as I have all the info and links, I will blog this SPECIAL NEWS and how it all came about and how and when it will become available!!!

SPECIAL THANKS to all the following women of "Team Jessica" who have helped with the Naples, Florida Fund Raising Events. Jessica and our entire family want you all to know how thankful we are for "ALL" you have done!

Joanne Hartman,Karin Daniels,Nancy Frye, Jeri Kiersted,Jodi Lepp,Summer Araque, Katy-Special Deliverez(organized Tropical Smoothie),Nita Kasan,Elayna Fernandez, Brandy Hazel and Mom,Taresa Spiroff,Molly Spiroff,Debbie Reeder,Starr Mier,Jamey Jennings,Joann Frazier,Tammy Sindledecker, Valorie Morris,Char Lancaster,Kelley Nellius, Leandra Harrison,Donna Carty,Barbara Schiering( Singer at Fred's Fundraiser),Kathy Newton--and her team at Fred's Diner,Linda Keutmann,Tammy Miloro,Ali O'Connor, Marina Ushakova,Jan Ruxton,Kristen Goodman,Lauren Carlysle,Kelly Salmons, Danica Stenberg,Mary Jo Wojciechowski, Suzan Berg,Shari Longo, Carol Biron, and Julie Scerbo.

UPDATE ON JESSICA:

Jessica will be receiving another ketamine booster today to help to alleviate her pain. The problems she was experiencing with her intestinal motility are somewhat less, thank God, but still exist. She did not have to go down to ICU yesterday so we are thankful for that. Please pray for today to be a better day for her.

The following quote is from a book called:"Lord Teach Me Wisdom" by Carole Mayhall:

"We are to do what our example, Christ, did on Earth. He kept looking at the goal, not the going. He was seeing the prize, not the process; the treasure, not the trial; the joy, not the journey. And we must do the same!

All our love, Sarah Gina (Jessica's Mom)

***To post a comment, CLICK on COMMENTS below***

4 comments:

Anonymous said...: How good to hear that you are doing so well, Jessica, that you did not have to go down to ICU! I know this is just a small step but it is a step in the right direction! I hope that Dr. Cantu was successful with the booster to give you some relief.
God be with all of you this weekend!
Fern; November 14, 2009 at 11:10 AM
jkurz said...: Hi Jessica

I'm so glad to hear that you didn't have to goto the ICU today and that your intestinal problems are somewhat less. I will continue that the booster is successful to help lessen your pain.

What's the weather like there? Here it is rainy and dismal. Hopefully the sun is shining for you.

May you continue to see improvments and more healing.

God Bless
Jenn; November 14, 2009 at 3:27 PM
Anonymous said...: hope the necklaces are ready for the holidays. Keep us posted.
Linda; November 14, 2009 at 7:40 PM
Anonymous said...: Jessica,

We have posted your necklace on your facebook group. As soon as I get your address or someone to forward your necklace to you I will send one for you and mom.

We do not know you, but can see your strength and you move us dearly. Your story will spread hope to everyone that their lyme whether difficult or life threatening they have a chance. As a lyme family of 3 ourselves, you make our struggle worth while. We will walk towards each other and have hugs one day.

Our love to you,
The Mah family,; November 15, 2009 at 7:35 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.