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!
3 comments:
I am sending you a really big hello all the way from Canada! I had trouble reading the blog as I had bookmarked it but could only get one page. Today, my head is clearer and I was able to figure out the big mistake so have just been doing lots of catching up! Thanks for the laugh out loud over the bug and Dr. Cantu's cough. Jessica, no one is ever going to get one by you!! :)
I just returned from a week in Tampa, where Theo and I did our one month follow up with D. K. This, of course, made me think ever more and pray ever more for all the coma patients but especially for the ones that are still holding their hearts towards home. ( you and Devon) May you be restored to full health very soon! There are so many praying tirelessly for you that you can do nothing but win! I know you will miss the team in Monterrey, they are a special class of people that God has put in your path for just this purpose. I am glad that they fill you with continued hope.
We saw Justin while we were there and his Dad. It was almost like a reunion!
How wonderful that you have your pastor visiting! That is truly special.
My recovery has had some medical set backs and I will have to get some more serious tests taken to determine what needs to be done to get me back on track. I was too sick, as a result, to enjoy our time in Tampa but Dr. K put me in touch with a good doctor there and now I have had a little insight into the US medical system! ha-ha
I hope that your new room is bug and noise free and that you are comfortable. May your eyesight be restored and may you be relieved from "becoming more Spanish" through blood transfusions. I would rather you just married a Spanish man! ha-ha. (perhaps your mom is not too happy I wrote that to you.)Wait till your older! My daughter, who is 17, has always had an interest in older men but while we were away in Florida, my friend managed to nip that one in the bud! :)
We think of you often. Know that we care. Have a great week! Sen me an email if you get the time
Fern Kwantes
Hey Gina, I am so happy you and Jessica received the cards and rosary beads via private postal service.!!!! We are all still praying for both of you. I recently read a book about the blessed mother and she always says to ask and you will receive we are asking for Jessica to be healed and we know she will not let us down. God Bless you and keep the faith.'
Love Jean
Ps We promise to stay in touch.
Even though I dont always leave a comment, I am praying REALLY hard for Jessica. Please tell Justin Hello for me and I am praying for him as well! Crystal Ulmer
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