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 illThe 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 lesionsJessica'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 campFour 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 rashDuring 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. KirkpatrickUpon 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!
9 comments:
Hi Jessica!
Sorry, it's been a while since I last wrote. I really have meant to keep contact. It saddens me that your having some problems, yet I know the Lord is watching out for you. It's also nice to hear you & your Mom now have special friends there; I will add them to my prayers! I have found a Dr. here in Naples who is now starting to treat people with early stages of RSD and I became part of his studies. I've only been with him A few weeks but we'll see how it goes. Of course Dr. Kruger has changed around all the meds I was on especially for the pain. As you know they make me drowsy and sick to my stomach so some days food is out of the question.
OK enough of me. I still consider you my ANGEL- as if it wasn't for your story in Naples News I was starting to believe the Dr.'s you were basically saying the pains and things were in my head or that I just wanted the pain meds and should seek help. I should bring them all the tests results from Dr.Kruger and shove them in their---. You really don't know how special you are to me!!! I would love to exchange e-mail addresses so we could correspond privately; yet I want to find a way to do that privately also. I think your Aunt who was listed in the paper already has my phone number? Please take cae of yourself-God's special Angel and answer to my prayers!! Which is how I know he will care and heal you. I went to a all girls convent school and grew up hearing "GOD WORKS IN MYSTERIOUS & SPECIAL WAYS". Always in my heart and prayers.
Love,
Michelle
kruger
Hey, Jess:
I just saw the letter I wrote you a few minutes ago and saw I wrote my Dr's name instead of my last name; that's because his office just called regarding my blood testing and I wasn't concentrating. Sorry for that!!!
Hi Sarah,
I read your blog daily and think of you and Jessica more than that. You are 2 incredible women as are Cathy and Devon. So sorry to hear Justin is back but hopefully the boosters will bring the relief he needs. I am constantly amazed by your up-beat spirit and your faith. Move over Mother Teresa. Loved the teaspoon/bug story. Sending prayers your way. :)
Jessica and Gina,
A big hug and lots of love from your VA family. Thank you for the updates Gina. We will keep you in our prayers. Love, Marianne
P.S. Love the bug story too!
prayers for you from Saratoga,
Linda
We are so glad to hear there are some improvements. Small steps but steps forward! We thank God for that!
With love & prayers,
The Turners
Hey Jessica, keep up the good work! I can feel in my heart that God is moving you forward every day. Tell Justin and Devon to keep their forward momentum too. And give a big kiss to mom for me. love Bonnie
HiJess & Sarah... I keep praying hard each and every day that with each day that passes...it is one day closer to you coming home. I miss you both terribly. So many people have written about your courage and strength...they should really know you both to know just how strong you really are. I feel truly blessed to have you as my godchild and niece. I am also truly blessed to have a sister who's heart is so pure...I treasure the bond that we share....Love you both
Morning ladies, Hi's to Devon and Justin too from Nancy!
Sarah Gina...now listen...between you making Ketamine Booster Bears and panicing about a TEASPOON on the floor...I'm surprised the nurses aren't giving YOU the Booster today, saying "OH No Jessica's Mom has flipped for sure!!!"
One more baby step..One more laugh (I hope) and you'll be home in no time!! Go Jessica Go!!!
What a great friendship circle of love the gals at Garden City Schools are forming as they make the bracelets with hope and joy for SISTER JESSICA.
XOXO
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