Jessica's Journey: Out of the hospital!!

Sunday, June 12, 2011

Out of the hospital!!

Hi!

I am writing this update from my bedroom back in the apartment here at my Mexico home away from home!

I know. I still can’t believe it either…After only spending 8 days in the hospital! With my first stay at Hospital San Jose being 10 months and my second stay lasting nearly 3… this is definitely a personal best! The past few days seem like a big blur to me. I am physically and emotionally exhausted but I am so happy to once again be out of the hospital!

I had my surgery Wednesday evening. I was wheeled downstairs to the operating room at 4:30 pm and got to see the doctors, residents, nurses and technicians before going into the OR. Everything with my surgery went very well.

Thursday morning Dr. Balli came up to my room and entertained me with the ‘story’ of my surgery in colorful, vivid and lively description—as only he can.

I got to hear every detail of how he cut through the layers of my skin, muscles and nerves, carefully moving each out of the way as he went down deeper, following the ‘tract’ that this granuloma had formed, while trying to both find and remove the source of it as well. He ended up having to go deeper than he had wanted or anticipated, down to my small intestine, but we are very thankful that he did not have to actually cut out any of my intestine to fully remove this thing- which would have turned this into a completely different surgery and recovery altogether.

What is even cooler is that none of these ‘images’ were left for me to picture with my own imagination because Dr. Cantu took several pictures during the surgery with his Iphone! I wish I could post them on here for everyone to see, but however cool these photos are to me, I’m not so sure everyone else would think so. I have never had pictures of any of my procedures before and I’m really thankful that Dr. Cantu did this for me. Well, actually, I’m really thankful for everything that he has done, continues to do and will do for me. But I could write a novel about all of that and this is already getting long… so anway…

Thursday afternoon I had another Ketamine booster to help control my pain. I than started running a low grade fever. We believe it was either due to the iron infusion I had earlier in the day, or from the blood and plasma transfusion I had before surgery (yes… I am now even more Mexican!).

Yesterday morning the fever was gone and I was feeling better, so It was decided at that point that I needed to get out of the hospital before any infections could develop. I will continue on IV antibiotics and medications here at home as I rest and recuperate.

It’s still unbelievable that all of this happened only 3 days ago. More unbelievable still is how well I am doing post this surgery. In the past, after any type of procedure, I have woken up down in the recovery room screaming and in explosive RSD pain burning through my entire body... the type of pain that is un-extinguishable even with the strongest medications.

This time was different. Yes, obviously, I am in pain, as I was cut open. But the difference is that this pain is is localized in the general area of my surgery and not igniting a lightening storm of RSD pain in the rest of my body. A ‘normal’ person would probably consider the pain I am feeling post surgery to be a high level, but when you have been through the horrible pain of RSD, this pain seems minimal and manageable.

Having an RSD flare up was my biggest fear about the surgery and this is huge relief and answer to prayer! It is proof to me of just how much healing has taken place in my nervous system and body as a whole because of the treatment that I have had here.

I definitely think that the five days of Ketamine infusion I received prior to surgery, along with using it during the surgery, along with the heavy amount of local and general anesthetics and surgical technique that were used… all played an important role in the outcome. Dr. Cantu and his team are learning more and more about how to handle an RSD surgery case and I am grateful for the doctors here who are willing to listen and to learn from their patients.

I know that God placed me in the best hands possible having this done here. We praise God for the healing that has taken place in my body. For the skill and wisdom of my doctors. For the amazing people he has placed into our lives to cater to our needs and help us through this. For being who He is—a God who continually does more than we can ever ask or even imagine.

I ask for continued prayers for my Dad, who will hopefully be leaving his hospital in NY sometime today. For continued healing in my GI system, that the removal of this granuloma will now allow my system to heal and work normally again. For strength and patience as I recuperate from my hospital stay.

Please also continue to keep all who are suffering with illness and pain in your thoughts and prayers too.

I will update again in a few days. Thank you all for the continued support and prayers.

Love, Jessica

***To Post A Comment, CLICK on Comments Below***

11 comments:

Anonymous said...: Absolutely FABULOUS news! God is great and worthy of praise.

I am so glad this did not start up a flare (prayers answered). Yes, your nervous system has definite healed quite a bit.

The information the doctors have learned from this will definitely help other patients.

We will continue to pray for COMPLETE healing and patience as you wait!

I am glad you got pictures. Isn't the human body amazing.

With love and prayers,
The Turners

Proverbs 3:5-6
5 Trust in the LORD with all your heart
and lean not on your own understanding;
6 in all your ways acknowledge him,
and he will make your paths straight.; June 12, 2011 at 12:46 PM
Amed said...: - Hello Jessica, i just recently found about your story. I'm a former anesthesiology resident (now planning to do rehabilitation medicine) here in mexico, and by chance i came across your story on youtube. I think you are a wonderful and corageous woman. I'm really happy to see all the progress you have made and how you are recovering. I sincerily wish you the best and i'm sure you will overcome this (and any)affliction that could ever come your way.; June 12, 2011 at 2:39 PM
Anonymous said...: Tears of joy streaming down my face.

Thank you God!; June 12, 2011 at 3:56 PM
Anonymous said...: You rest and recover while we take our cue from King David leaping and dancing before the LORD.; June 12, 2011 at 4:32 PM
Rosemary and John said...: Dear Jessia,

Welcome Home Sweetheart! Wow, oh wow! What a story. What a journey. Man oh man...we get such inspiration from your strength! It has gotten us through some hard times. One thing we have learned in our RSD journey is that no one gets through this alone. We all need our family and friends and we need our Faith. We have seen our own Faith in God grow as we came to learn that so much in this life is totally out of our control. It is in all in His hands. We must learn to trust Him and believe that He knows what is best for us, even when we cannot see any logic. God has used you to reach so many others. We are grateful for His leading us to you and your family. We will continue to pray for all you have asked for as we look froward to watching your progress.

Rest now, your body needs to recover and where better to do so, than in your "home away from home" in the loving hands of your amazing Mother!

God bless you both and your New York family too.

Love & xoxoxo,

Rosemary and John; June 12, 2011 at 11:18 PM
Anonymous said...: http://www.anapsid.org/cnd/diffdx/hypercoagulation.html

Hypercoagulation (thickened blood) results from fibrin being deposited in small blood vessels. Fibrin is the body's natural bandaid: strands of fibrin form across a defect (wound, tear) in the walls of blood vessels, forming a mesh that holds platelets and blood cells. This beneficial clotting of cellular matter and fibrin strands plugs the leak, so to speak, holding things together until the body starts to repair itself.

Fibrin production is the last stage in a complex clotting process. The process itself starts off with the release of thrombin which in turn results in the production of soluble fibrin monomer (SFM), a sticky protein that increases blood viscosity. This leads to the deposit of fibrin on the endothelial cells that line the wall of the blood vessels. Under the normal conditions, it takes only a single burst of thrombin to generate a large amount of SFM which in turns produces sufficient amounts of fibrin to clot the defect. Testing of many patients diagnosed with CFS, FM, MPS shows that the thrombin-SFM-fibrin process is not working properly. Instead of a single burst of thrombin producing the amount of SFM needed, the thrombin keeps being produced at low levels. Instead of clots being formed, however, the result is that blood becomes increasingly thickened. The body's own ability to thin blood and break up clots is impaired because the fibrin smothering the endothelial cells prevents those cells from releasing heparans.; June 13, 2011 at 9:23 AM
Anonymous said...: Amazing Grace

And grace my fears relieved ...

You continue to be in our thoughts and prayers.; June 13, 2011 at 11:50 AM
Fern said...: What a blessing to be out of the hospital already! There is much learning going on and especially in the personal case of Jessica and her body! God has planted you on this path to healing and it will continue as it has done. Let's hope and pray that the surgery will be all that is necessary to complete this part of His work. Thanks for the update from your own words, Jess. Miss you both!; June 13, 2011 at 3:03 PM
Anonymous said...: We are happy your last hospital stay was short. Thanks for the update. We will continue to pray for you, your dad and your entire family.You are always in our thoughts and prayers.

Ashley,Paula,Ray and Kevin; June 13, 2011 at 8:01 PM
Anonymous said...: Hi Jessica! So glad to hear you are home a few days after surgery. You continue to be amazing! You and Mom get some rest. I'll talk to you soon!

Love, Carol xxoo; June 13, 2011 at 8:49 PM
Anonymous said...: Jessica, Another amazing story, hope that book is in the works,you tell a great story, as does your mother. We are thinking of you all the time and your indominatible spirit and strength. Give Dr. Cantu a hug and a kiss from us.

xo Cathy and Devon; June 15, 2011 at 8:01 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.