Jessica's Journey: My amazing journey continues- My video update with Dr. K!

Tuesday, February 21, 2012

My amazing journey continues- My video update with Dr. K!

Hello everyone!

I wanted to share this positive update with you all!

This past week we drove up to Tampa to see Dr. Kirkpatrick, who is the director of the RSD/CRPS Treatment Center & Research Institute. He is the doctor who originally evaluated me back in July 2009 before going to Mexico.

At that time, I was 21 years old and I was near death. I had skin lesions covering my entire body, I was being fed thru a feeding tube, I could not sit up or move my legs. RSD/CRPS had invaded every part of my body and I was in horrendous burning pain, all of the time,

I had no hope, and we had been told by many doctors that there was no treatment that could save me.

Dr. Kirkpatrick restored our hope that day by telling us that he was going to send me to Monterrey Mexico to be a part of the Ketamine coma study. My very last hope for survival.

2 weeks later I went to Monterrey, where due to many twists and turns, I stayed for 2.5 years.

Needless to say, Dr. Kirkpatrick was very shocked to see me now! He didn’t even recognize me! – without any sunglasses, or headphones, sitting up, without lesions or feeding tubes… and about 30 pounds heavier! He was very happy!

Dr. K's 'ladies' (Karen, Mary & Sanela) were also very excited and happy to see me doing so well!

My mom presented Dr. K with his very own “Ketamine bear”, a tradition she began in Mexico, making them for all the other coma patients we met in the hospital!

He loved it!

It’s just a small way of showing our appreciation for the chance that he gave me by sending me to Monterrey to be treated by the incredible Dr. Cantu, whose dedication to my recovery made this a reality!

Through my illness, I have been blessed to experience so many miracles, of various types—but among them all, being led to Dr. Cantu "Dr. Green Shirt" ranks most highly on that list!

He is my hero, my angel and my ‘mexican godfather’. :)

(Be sure to see my special message to Dr. Green Shirt at the end of my 'part 2' video! :)

Dr. Kirkpatrick, thank you for your continued dedication to research for RSD/CRPS and for being a doctor who is willing to treat ‘out of the box’ patients, like myself… even if it means using ‘experimental’ treatments, outside of the country, to restore our hope and give us a future.

The treatment and care that I received with Dr. Cantu in Mexico saved my life, and I am so thankful to every doctor who cared for me and kept me alive long enough so that I could have the chance to be a part of this research study, which for me, was life-saving!

As part of the Ketamine Coma research study, Dr. Kirkpatrick puts together videos of each patient, to provide education about RSD/CRPS and to show the progression of the disease before and after the coma study.

These are my videos. Part 1 is from July 2009, before going to Mexico. Part 2 is from last week!

VIDEOS

View Jessica's Remarkable Recovery in 2-Part Video

Part 1- Pre-Coma Evaluation

http://www.rsdfoundation.org/en/jessica1.htm

Part 2- Clinical Outcome

http://www.rsdfoundation.org/en/jessica2.htm

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you HOPE and a FUTURE." ~Jeremiah 29:11~

I am forever thankful to everyone who has been a part of my hope for the future!

MUCHAS GRACIAS!! Que Dios te bendiga siempre!!

In God's love,

Jessica

*To Post a Comment click on Comments below*

6 comments:

Anonymous said...: Incredible! Awesome! Amazing! You look so beautiful Jessica, so happy, healthy and so full of life!! Keep going and smiling your beautiful smile! We are all behind you, always!; February 21, 2012 at 8:36 PM
Rosemary and John said...: Dear Jessica,

I know I should reserve this remark for my husband but 'you gave me goosebumps'!

It is hard to find the words to respond to such a miraculous story. How could you or your parents ever have known that the quote from ~Jeremiah 29:11~ that was posted on your blog at the very beginning of your journey would come to such fruition?

You traveled into the unknown & lingered in some dark, painful & scary places. But, with God's Grace, the support of your amazing family, Dr. Cantu & all the other doctors & nurses who loved & tended to you day and night in Monterrey, you fought your way back into the light & into the world of the living. You are finally, 'over the rainbow',

Thank you for sharing your amazing, inspiring, uplifting story with all of us & for giving HOPE to all those who are in darkness now. Thank you for letting everyone know there is HOPE for this miserable disease & there is beautiful light on the other side of the rainbow.

Loving you & praying for you to soar!

Rosemary and John; February 22, 2012 at 11:46 AM
Fern said...: I watched the video and was so thrilled to see you so animated! What a difference in the time I have known you. Too bad we live so far apart as you have all become special to us and we would love to share your journey in person.
Your video also gave me hope. When the 2nd coma becomes available for me, maybe I will do as well as you have done!
Your family has endured, your body has healed and is healing, God has taken you and cared for you and no one can say otherwise! You are a testament to faith, perseverance and your courage, as is your family by extension. It is obvious you have a new lease on life and I cannot wait to see where it is all going to take you!; February 23, 2012 at 4:00 PM
Anonymous said...: FABULOUS UPDATE!! I just watched both videos and all I can think, is how I can never complain ever again after seeing that. Wow.

You look great kid. Keep going!; February 23, 2012 at 4:54 PM
Anonymous said...: Dearest Jessica, WOW- GOD IS SO GOOD!!!! I am so happy for you!! I watched parts 1 and 2 of the video and am overjoyed and in awe of what has taken place. I remember coming to visit you in the house on Bayberry and the room being completely dark and quiet and your being in so much pain. I do remember how it was in the first video. Watching you speak to the doctor in the second video, so animated, poised and knowledgeable and with your gentle humor, I realized that you have literally come from the darkness into the light. I am humbled at witnessing your healing. Your mom left no stone unturned in finding you the right care and she did find it no doubt. She is truly your angel. Your dad, Katherine and Michelle always had your name on their lips and fervent prayers for your healing in their hearts. They are your angels too! I can't wait to tell our rosary group the great news about how you're doing and encourage everyone to watch the videos. We have prayed for you every week and will continue to do so. Although I can't make it for the fundraiser in Florida, I hope to see you one of these days. You and your special family are always in my heart. Please say hi to them all for me!! Love always, Angel xoxoxoxoxoxoxo; February 27, 2012 at 11:05 PM
Anonymous said...: Dear Jessica --

You are AMAZING and look so wonderful . . . we just don't have the words. We were reading your blog and are in absolute awe of YOU! You are one courageous girl and we couldn't be happier to see where you are today. We look forward to watching your videos (Wayne is away, so we decided to watch it all together this weekend!!).

Continue to be well, dearest & keep us posted. Our thoughts and prayers are with you each & every day. Love to you and your beautiful family . . . looking forward to seeing you all soon!!!! :-)

With our love,
The Klatt Gang; March 7, 2012 at 8:15 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.