Tuesday, June 21, 2011

The Long Road Home

Sean and I have been married for 15 years.  We have three children, Jordan age 20, Erin 19, and Keeley 17.  Sean has been enlisted in the US Army Reserve since June 1988.  During that time he has deployed in support of Operation Desert Storm (Saudi Arabia), Operation Joint Guard (Hungary/Bosnia), and Operation Iraqi Freedom.

Sean was injured on March 25, 2006 while he was standing in a parking lot with a group of soldiers in Camp Anaconda, Balad, Iraq.  The warning sirens were blaring, but for the wrong section of the base.  Several mortars were marched in from just beyond the fence.  The first blast hit at the perimeter fence approximately 80 yards away. The second was about 50 yards out and the third around 20 yards out. The fourth round landed within 10-15 feet of where they were standing.  Sean reports that he was pelted with rocks, saw stars and bright light, and may have been unconscious for a brief time.  Sean says following the blast he was dizzy, had a headache, marked hearing loss, had light sensitivity, and his night vision was significantly decreased.  These symptoms have not improved over time.

This is what the doctors believe was his most significant injury.  There were also many occasions when mortars and rockets were fired into the ASP (ammunition supply point).  He tells of many nights when he wouldn't hear the blast or siren, but would wake up on the floor of his hut having been thrown from his bunk, or rolling for cover.

The first week of April 2006 Sean became extremely sick.  He was vomiting and had diarrhea constantly. He went to sick call and was treated for dehydration and was prescribed Pepto Bismal and a clear liquid diet for 72 hours.  Sean made multiple trips to sick call in late April and early May as he was rapidly losing weight, and no relief from the diarrhea.  The doctor tried Prilosec to see if he might have an ulcer, but that did not help.  He was eventually diagnosed with salmonella poisoning and put on an antibiotic.  The symptoms did not improve, so the antibiotics were increased.  During this time, Sean dropped almost 40 pounds.  For the next month Sean went to sick call, and worked normal shifts in between bouts of diarrhea and vomiting.  He grew weaker and weaker, unable to sleep due to abdominal pain. Finally, in mid-June his commander took him to the doctor and insisted that something be done.  The decision was made to send him to Germany for further testing and treatment.

After a two-week stay in Germany, Sean returned to the Iraqi theater.  Doctors were unable to find a cause for the persistent diarrhea and vomiting and surmised that his symptoms were due to the severity of his salmonella infection. 

In August 2006 Sean was med evaced from Iraq to Landstuhl again as he was sick as a dog and unable to work.  After a battery of tests, Sean was diagnosed with clostridium dificile (c-diff) infection.  He was put on a new antibiotic and treated for extreme dehydration.  C-diff can occur when a person is taking large doses of antibiotics, so therefore, the c-diff developed due to the treatment for salmonella.  Just as the salmonella went undetected, so did the c-diff which should have shown up in previous tests.
Following another two-week stay at Landstuhl, it was decided that Sean would return to the US for treatment at Walter Reed, however, due to a medical record mix-up he was sent to a military base and placed in medical holdover.  Sean’s medical care on base consisted of 15 minutes with his doctor every one to two weeks.  He was horribly sick, had daily migraines, on narcotics, severely depressed, and having constant diarrhea.  The doctor said, “Take your pain meds and you will be fine.”  He had to take taxis to pharmacies in other towns because the base hospital didn’t carry what he needed.  He was confined to quarters.  I could not get anyone to talk to me despite the release of information he signed for me.  Even the base chaplain took two weeks to get over and visit him.  With a full-time job and three kids (and a husband who was 9 ½ hours away assuring me it wasn’t that bad) I was not able to be with him.  During this time he repeatedly told his case manager he was having!

PTSD symptoms, and it was dismissed.  The psychiatrist told him “You’re the poster boy for mental health!”  It took seven Congressional complaints to get Sean a referral to a GI specialist and finally a referral to Walter Reed for evaluation.  Conditions on base were so bad Sean was told if I quit filing complaints, he would get medical treatment.  He was called a whiner and a complainer and told he made the doctor’s job hell.

After four months, Sean was finally approved for evaluation at Walter Reed at the Deployment Health Clinical Center.  We spent a week in Washington, D.C. for his evaluation.  At the end of the week he was diagnosed with “Medically Unexplained Physical Symptoms (MUPS).”  He had chronic pain in his abdomen, intermittent diarrhea, chronic migraines, visual disturbances, constant nausea and dizziness, along with depression, anxiety, anger and sleep issues.  When we met with the psychologist, his PTSD symptoms were dismissed once again and chalked up to the experiences he had suffered over the prior nine months. 

In February 2007 Sean traveled to Washington D.C. for a three week Specialized Care Program for pain management at the Walter Reed Deployment Health Clinical Center.  The doctors at Walter Reed recommended that due to Sean's lingering health problems he apply for CBHCO (Community Based Health Care Organization), a military program which allows soldiers to return home for their medical care, while remaining on active duty.  At the conclusion of the program, Sean returned to the military base where he remained for an additional three months for a total of nine months.  He was given three choices:  go home on CBHCO orders (he was denied as he had too many medications and would need long-term care), begin the medical board process (this offer was later revoked as MUPS did not have a code for the MEB/PEB), or return home as he was, return to his civilian job, and seek care at the VA.  As a firefighter and paramedic, Sean was in no way healthy enough to return to work, but the, Army powers that be at the hospital told him, “It’s not our job to get you well enough for your civilian job, just to get you well enough to deploy or serve the Army.”

So Sean came home in May 2007 and went back to work on light duty until he eventually had to take a medical retirement from the fire department due to his chronic pain, memory problems, confusion, decision-making problems, and anger issues.  We started care with the VA in June 2007 and he went through extensive GI workups without any concrete results.  He was diagnosed with IBS, and chronic residual abdominal pain due to multiple long-term infections.  He had what they called a “rapid transfer bowel” meaning whatever he ate went right through him.  He was having migraines daily and a constant need for sleep.  I was repeatedly telling every doctor, nurse, and psychiatrist we saw that he was not right.  He had too much pain, was angry, depressed, couldn’t attend or process information, he couldn’t remember conversations, was having weird episodes where he was non-responsive, having nightmares and lashing out at us.  Eventually his psychiatrist diagnosed him with PTSD and made !
a recommendation for some more intensive treatment (that was 2007 . . . he was finally sent to inpatient treatment more than two years later).

Finally, in December 2007 a nurse at the VA asked the magic set of questions:  "Did you ever experience a fall?", "Were you near any blasts or explosions?";"Were you ever unconscious?" Sean was answered yes to each of the questions.  The PA sat down with us and explained that he suspected some of Sean's symptoms were due to a concussion, or multiple concussions, he may have experienced from his falls and exposure to blasts from mortars.  Sean was referred to the polytrauma unit at the VA Hospital for additional evaluation and testing.  In January 2008, Sean was diagnosed with a mild TBI due to blast injury. 

Now that we had a diagnosis, I thought we would make progress and things would get better.  How wrong I was!  Throughout 2008 Sean’s vision slowly decreased.  Sensitivity to light, photophobia, no night vision, blurred vision, double vision, nystagmus (“bouncing” of the eyes), and decreased peripheral vision.  He also was losing sensitivity to light touch in his extremities.  In December 2008 Sean experienced stabbing eye pain and marked loss in his vision, only able to see colors and shapes and shadows.  Steroid treatment, multiple tests and doctor’s appointments later, he was declared legally blind with vision of 20/400.  He spent three months at the Hines VA Blind Rehab Center in the beginning of 2009. 

He spent the last 2 ½ months of that year in the St. Cloud VA PTSD inpatient program.  Sean suffers from night terrors, night sweats, flashbacks, “vacant” episodes, anxiety, depression, and anger.  He is on high doses of medication to control his symptoms.  He smells smoke, hears sirens, and hears and sees people who are not there.  He gets out of bed in the night to run to the bunker.  He cannot be in the dark.  He cannot be left alone for long periods of time.

I took a leave of absence from my first grade teaching position in February 2010 and resigned in December 2010.  While we have a VA clinic in our hometown, the majority of Sean’s appointments are at the VA hospital three hours away.  We travel weekly much of the time, and have additional appointments for his MEB.  Prior to my leave of absence I started taking Sean to work with me.  We were having problems with him making multiple phone calls to me during work, confusion during the day and/or not knowing what  he had done all day, and he was falling more frequently.  One day I came home to find him walking on the roof!  The next day he became a volunteer at school.  The kindergarten teachers quickly claimed him and he has been working with them a couple hours a week ever since.  Eventually, I could not keep up with the kids, Sean, work, and our travel schedule and I took a leave of absence.  Although it was a difficult decision, I resigned at the end of the year. 
This will allow me to continue to be available for Sean and while we work together to figure out where our lives will go from here.

We have been working toward his MEB/PEB since 2007 and just last week were told this is the beginning of the process.  Wow.  We are waiting on a referral to the National Intrepid Center of Excellence which might give us a definitive diagnosis (the Army doesn’t believe the VA, hence the MEB hold up) we can submit to both the DoD and the VA along with an updated treatment plan.  It would be reassuring to know that we are doing everything we can to help him recover as fully as possible. 

At present Sean is legally blind, his TBI has been upgraded to moderate, he has chronic migraines, chronic abdominal pain, IBS, persistent dizziness and nausea, sleep apnea, tinnitus, depression, anxiety, and PTSD.  He has decreased sensation in his arms and legs and poor balance (falls at least once per week).  He suffers from night sweats and night terrors and within the last year has started seeing people and hearing voices that are not there (or has started admitting to them). He is on a hefty medication regimen which helps to keep the symptoms in check, but never fully relieves any of them.  We have tried several times to alter and/or reduce the medications, but it has been disastrous every time.

We are working with his psychologist to get him on a daily schedule and work reminders in throughout the day to build independence.  At times he is more like a child, so needy and clingy that when I do get a break, it is short lived. 

Fortunately, we now have an excellent case manager at the VA and were assigned a Federal Recovery Coordinator last year.  They are both wonderful at their jobs, but sometimes it feels like too little too late.  Where was the help when I was Googling every diagnosis, researching TBI and PTSD and writing my own treatment plans as I would write behavior plans in the classroom?  Where was the support when he came home from his unit?  Where was the support from our family and friends?  No one understood what we were going through.

We have a lot of uncertainty in our lives.  We no longer have our career paths, our children are growing and will move on.  We don’t know what is in store for us, and that scares me to death.  We have been battling for five years and I am still looking for the “answer.”  Guess I haven’t reached “acceptance” yet.  Sean still asks why this happened, why he is like this, why he didn’t die, why he has to live this way.  I get stuck on the losses:  two careers, his military career, friends, relationships, damage to relationships with the children, loss of our marriage relationship as it transformed to caregiver/patient, activities, time with our kids as we traveled for appointments, independence, self-confidence. . .

I read and read and hope I will find something that brings me peace and understanding, but I always come away feeling like something is missing. 

We have had the opportunity to testify before the House Committee on Veterans Affairs Subcommittee on Oversight and Investigations regarding the “Seamless Transition” between DoD and VA in January 2010.  We have since been invited to speak at the Canadian Embassy twice at symposiums focused on Wounded Warriors and Caregivers.  Things I never would have thought I would do.  Each experience is more rewarding than the last.  Our hope is that by sharing our story and our struggles we can bring about change that will serve others

Sean is starting to get involved with the VFW and DAV through a friend who is also a member.  He attended the VA Winter Sports Clinic last March and then Lakeshore’s Operation Alpha last summer.  He enjoys these adventures and attended a sports clinic last July with the United States Association of Blind Athletes (USABA) where he became interested in tandem cycling.  He went to a “Learn to Cycle” camp and then competed in the Rocky Mountain State games where he and his tandem pilot won a gold medal!  This week he is riding in the USA Cycling National Championships in Augusta, GA.  My son and I will fly out to watch the race on Saturday.  Sean has found a sponsor who helped him purchase a stationary bike and pays for an Olympic coach to work with him online.  Sean has ridden 3,000 miles since December!!
Unfortunately, he is still waiting on the VA to provide his tandem bike. . . he has people in town willing to ride with him, but it’s a numbers game.  This has been HUGE for Sean and a wonderful opportunity for him!  It’s exciting to see him interested in something again. 

I know there is hope for our future and like I tell Sean, “We’ve got 40 or 50 years left in us, we will have to find a way to live with this!”  I believe that by raising awareness of PTSD we can do a service to all our veterans and their families.  Things have changed a lot over the past five years and although sometimes it feels like that change is painfully slow, what I see happening is good.  Every single person who is able to get help where we couldn’t is one less person left behind.

~ Melissa Johnson

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