My Many Mito Adventures...

My Buddy Satchel

Thank you all for taking the time to visit!

Welcome to my Web Page. It is awesome to finally have a place to keep my family and friends updated about my adventures living with Mitochondrial Disease, my daily activities, challenges and even my writings.

So, what is Mito you ask?
Mitochondrial Disease occurs when there is a problem (mutation or deletion) in the mitochondria or in the mitochondrial DNA (mtDNA). This causes a disruption in the production of energy in any of the 5 complexes utilized to generate ATP for the body. When there is a failure to create energy the body and mind suffer. It is like running a 4 cylinder car on 2 cylinders.

I have Mitochondrial Cytopathy (meaning multiple organ systems are involved) with dysautonomia (meaning my body struggles to regulate functions that should be regulated automatically).

Originally diagnosed in 1987 my life has changed dramatically in the last 8 years. I now use a power wheelchair named Stella to get around (she has a lot of personality). I am now on TPN (Total Parenteral Nutrition) continuously as well as IV Hydration, I use a V-Pap (a non-invasive vent) whenever I'm sleeping, resting or have air hunger, and all my medicines go into my T/J tube or Central Line.

Oh, how life has changed! But I wouldn't trade my experiences for anything. I've gained a lot of character (inside family joke).

I hope by maintaining this website I WILL: Keep in Touch, Educate, Inspire, Support Others, Appreciate the Gifts I've Been Given, Live Each Day to the Fullest and Hope for a Cure! Speaking of a CURE I just found out that if you use GoodSearch.com (powered by Yahoo) for all your internet searches you will be donating a penny for every search. I know it doesn't seem like much, but over time those little pennies can pile up. Do me a favor and at least check it out. Consider donating to: The United Mitochondrial Disease Foundation, Mitochondrial Disease Action Committee, or The Muscular Dystrophy Association. THANKS!






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"Getting over a painful experience is much like crossing monkey bars. You have to let go sometime." Anonymous

Journal

Wednesday, July 16, 2008 1:31 PM CDT

Hello Everyone,
This is Kristie’s friend Julie . I wanted to let you know that Kristie was admitted to Hershey Hospital 2 nights ago, and her parents are there with her. I spoke briefly with Kristie yesterday, and she mentioned a growth the size of a baseball and one the size of a football in her abdominal cavity. One is a growth on part of an ovary that is no longer supposed to be there! Kristie sounded, tired, wiped, and in pain. Today, there should be some results from tests where they will determine the next step. I will do my best to keep you updated as info comes in. Please keep Kristie and her family in your hearts and prayers particularly at this time. Julie

Update from Julie- I just spoke to Kristie. Today she had a procedure done, but not surgery. A biopsy was taken of both masses and the surrounding liquids. They took approx 600c.c. of liquid, so that has released some of the pressure on her kidneys and bladder. Kristie says the results will take awhile, and there is some talk of her returning home and doing pain management there. If surgery is indicated, it will take a little bit for the scheduling and would not happen before next week.
Kristie is feeling tired and extremely nausiated. Each room in Hershey Med. Ctr. Is a single room, and rooms are in demand. Knowing what travel does to Kristie, and how wiped she is now, I wish she could stay until it is clearer what we are dealing with. Pain management at home is tough! Even making the trip back up, would exhaust her before any possible surgery.
Please excuse my personal ranting, it’s Kristie we’re talking about here.

Thursday update- Kristie is now home awaiting pathology and biopsy results. Her Parents are there until tomorrow, and will come back when it is clear what is next. Please pray for good pain management and nausea control. Thanks all, Julie

7/21/08 Brief talk w/ Kristie - pain and nausea continue to be a problem. Just waiting for results...

7/22/08 Kristie just got the results from the doctor. All of the biopsies came out BENIGN. Whew/Yeah!! The doctor does not want to do surgery at this time as one mass is pretty well adhered to her intestine, bladder and stomach. A cat scan will be repeated in 1 month to monitor its size. If there is a rapid growth, surgery may be necessary.
Right now, Kristie is still battling nausea and trying to have her pain control last the full 4 hours until the next allowed dose. Thank you for your messages and continued prayers. That's all for now. Julie

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E-mail Author: kristiep@frontiernet.net

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent. This information does not confirm that anyone is or was actually a patient at any facility.