Jodie's Heart

33412250_1538438014623430_r.jpegMany of you that know me very well, know what this tattoo is. For those who don't know, this tattoo is on the right arm of my eldest son, Logan Deutsch.  It represents the heart condition I have, called Long QT Syndrome, and the day in 2005 where he watched my heart stop.  I am raising money to buy 3 rounds of an antibiotic, called Vancomycin, that is being used to treat a secondary problem with my heart; an infection in the valve called Endocarditis.  As you read further, you will find that the type of insurance I have, which is MAP (Medical Access Program) through Travis County, doesn't cover this medication, which is needed to get this infection under control.

Logan got this tattoo because my heart stopped in front of my two beloved sons on April 9, 2005.  My youngest son, Taylor, who was only 12 years old at the time, saved my life by getting me help within seconds of me dying in front of my boys.  My heart stopped two more times that same night; once in the ambulance, and once in the life flight helicopter.  By the time I arrived at Mercy Hospital in Des Moines, I was convinced that my health in the prior years was the cause of all of this.  13 years later, I've lost my brother to this awful hereditary condition and, am battling to save my own life.

But first, a little back story: when I was 16, a tumor was discovered on my uterus.  Several more were discovered and removed over the next few years, culminating in my doctors advising me to have a hysterectomy at age 18.  I desperately wanted children and was so grateful that I managed to stave off the hysterectomy until I got pregnant in 1990.  Logan was born in July 1991 and, though I was scheduled to have a hysterectomy later that year, we found we were pregnant with my sweet Taylor.  He was born in 1992.  Over the next few years, I had 19 surgeries to remove tumors and a hysterectomy was performed in 1995 at age 25.  That did not stop the tumors, as my doctors had hoped.  After 4 more surgeries, a bone marrow biopsy discovered a rare cancer called Ewing's Sarcoma, which normally affects children.  The tumors in my abdomen that began when I was a teen were a "side effect" of the cancer.  I went through chemo and radiation, amongst other treatments, including 2 years on steroids and, in 2003, I was given the best news ever: I was in remission.

I assumed I would INSTANTLY feel better and, the weight I gained from the steroids would go away.  None of those things happened and, over the next 2 years, I felt awful all the time, but did not know why.  I assumed it was the weight causing me to feel so poorly.  My assumptions proved to be wrong.  I was living in Iowa and about to move back to Texas.  Literally.  The U-Haul was in the driveway.  The boys and I were asleep in the living room and I woke up to the sound of a freight train in my home.  I was paralyzed from the waist down and, Taylor managed to understand me and found the phone under all of the moving boxes and got a defibrillator to me just as I took my last breath.  The next morning, after having my heart shocked back alive 3 times, I was told I had Long QT Syndrome and it had nothing to do with my previous medical history.  That was very hard to believe.  They put a Pacemaker/Defibrillator in that very morning and I began a journey that was just as unpleasant as all of the other medical endeavors I had been through thus far. 

6 months later, I checked the mail and a letter from Medtronic (the maker of the Pacemaker/Defibrillator also known as an ICD) told me that my particular ICD was being recalled because the Sprint Fidelis Lead which was physically in my heart, and the battery casing were both bad.  It wasn't a car.  I couldn't simply take it to the dealership for a return or repair.  After joining a class action suit to just have the ICD replaced (another suit asked for replacement AND money), I waited through 3 years of legal wranglings, only to find out that a Judge ordered these suits to be "frivolous." This put me in a new form of Hell because I couldn't do anything unless I proved catastrophic injury or death.  Yes, you read that right.  After 266 unnecessary shocks (YEP...also true!!  my sons and parents have awful stories) and, irreversible heart and nerve damage, a kindly ER Doctor offered to fund a personal lawsuit on December 7, 2011 after my 266th shock.  On December 9, 2011, Medtronic decided this lawsuit was really going to happen and a new ICD was installed, free of charge IMMEDIATELY.  My current Medtronic ICD has had zero problems.  However, the damage, as they say, was already done.  It has affected me drastically and, has forced me to file for Disability.  Until then, I am on a Medical Insurance program through my County, which is funded through tax dollars and donations, but cannot afford the drastic costs for some medications and procedures....this medication being one of them.

Many of you know that my brother, Larry Joe Logan, passed away on February 4th of this year, at age 49.  I had talked to him for years about getting tested for Long QT.  It requires a stress test to determine, unless you are already having a cardiac event or very high blood pressure.  He said he would get one after he turned 50.  He died 15 days after his 49th birthday.  Long QT is known as the "Widow Maker" because of how fast it kills and, often times the person doesn't even know they have it.  Many athletes that drop and die on the field, die of this exact problem.  Losing my Brother was heart wrenching in  so many ways, but knowing we might have been able to help him prevent this, will be the biggest regret of my life.

After developing severe dental issues culminating from the radiation I had 16 years ago, my heart developed the Endocarditis in 2016.  We began treatment immediately, utilizing a combination of antibiotics.  We finally got to the end of the road, which is the big one.....Vancomycin.  It's incredibly expensive.  My sons have been helping when they can and my Grandmother, who passed away on the 18th, also was helping cover some of this cost.  But, we have only been able to do it hit or miss.  Sometimes I would stop for a week or two, and then we put the money together again.  Sometimes, I took half the dose required.  The cost is $870 for 6 weeks, which is the maximum they prescribe at the full quantity discount, utilizing GoodRx.com to get it to that reasonable of a price.  I have applied for every program I can think of, including the Pfizer Patient Assistance Program and the Pfizer Rx Pathways.  This medication is not available on either program.

I am attempting to get 3 straight rounds of the meds so that I can fully get the infection under control. Then, I can finally get the teeth pulled and implants installed.  If they attempt to fix my teeth with the current level of infection, I am likely to have a stroke.  The infection would immediately enter my blood stream.  At the point that the damaged teeth are removed and repaired, the Endocarditis normally goes away.  My Cardiologist, Dr. Heinzman, keeps assuring me this is the best and only approach that saves my heart from being cut open for full valve replacement, even though the cost has been and, is drastic.

I know this is a lot of information, but I feel that sharing my full story, and being transparent, is only right when asking for this kind of help.  This year, we lost my Brother, Larry Joe Logan, on February 4th, then my Grandmother, Jacqueline Sue Logan, just under two weeks ago, on September 18th.  My Grandma was so good to me and I miss her with all my heart.  I would give anything to have her back here with us. Her  passing has meant that the financial burden has dramatically increased.  The financial strain on my Parents and my Sons has been enormous while I am in the process of awaiting Disability.  We are simply at a point where we are having to choose between keeping me healthy and paying monthly bills for basic life necessities, like utilities.  Any help given, no matter how big or small, would be greatly appreciated.  I am humbled and in awe of how wonderful our friends and family have been and, I am so sad to even have to go this route.  But sometimes you just have to ask for help.  Thank you for listening and God Bless You All.
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Organizer

Jodie Deutsch 
Organizer
Austin, TX
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