Monthly Archives: March 2008

Top-Quality Medical Care

Day 11. I’m trembling with adrenaline as I reread my notes from this most horrible day.

I’m going to give Tonya at Senator Tim Johnson’s office a shout out here. This wonderful woman talked me off a cliff on day 11. Way above and beyond the call of duty on her part. I can’t even tell you how amazing she is. She talked to me almost daily for a while. If I didn’t call with an update, she would call me. She would call and say, “I’m waiting for a call back from the Pentagon.” A little awe-inspiring. I had her on speed dial and she never once ever made me feel like a raging lunatic (which I might have been), or a complainer, or a bother. She treated me with absolute kindness and concern for Sean’s well-being.

Livid. Seething. Raging. That is how I would describe my emotions upon hearing the events of day 11.

Sean was woken the morning by his Platoon Sergeant for an impromtu meeting with MAJ Z, Dr. X, Ms. S (a new case manager), and another MAJ whose purpose I do not know.

MAJ Z asked Sean if he would agree to let Dr. X treat him. She said the hospital was doing the best it could and they were providing top-quality medical care. As this illness was serious, it could take a long time to treat. He may need long-term antibiotic treatment. The hospital and Dr. X were willing to go forward with treatment if no more complaints were filed.

Did I hear that right? Treatment could go forward if no more complaints were filed? Does that sound like a threat to withhold treatment should we exercise our right to inquire about the care he is receiving?

Sean was advised to track his fluids and stools himself. He could purchase appropriate tools for measuring such things at the pharmacy and keep a log book. He should make subtle changes to his diet and track those as well. Never mind that the man was on a diet of ensure, gingerale, and crackers. What should he change?

MAJ Z said that no further lab tests or stool samples were needed. If he had fewer stools, then the infection was getting better.

MAJ Z asked why congressional complaints were launched and why he felt the placement was inappropriate. He had not even been on base for two weeks and already he was complaining about their level of care and making them look bad. Furthermore, they had made arrangements to get him necessary medications, and had scheduled an evaluation with a GI specialist, Dr. D. Scheduled, yes, and CANCELLED!

Sean was told that he is not a doctor, and therefore does not know about his medical needs or treatment (this comment from the doctor who had to look up the condition and said he couldn’t treat it). He was told that he was the most agitated patient they had ever met. He was ordered to have a mental health evaluation because he should have been getting better, but was still complaining of symptoms. It was suggested that if his wife came down and spent a few days to help, “relive your tension,” he would get better. He was told directly, “If you stop complaining, we will start treating you.”

When the meeting was adjourned, MAJ Z gave his case file to Ms. S and told her, “He’s all yours. You had better call him everyday or he will complain.”

Sean asked Dr. X after the meeting, “Is it normal to have this abdominal pain, take percoset daily and have so much nausea?” Dr. X said, “No, it’s not normal, but if the diarrhea goes away, then you will be fine.”

Sean spent the night in his room throwing up.

Week Two–Hell Week Begins

Dr. X ordered a probiotic treatment. Par for the course, the pharmacy on post could not fill this prescription as the stock on hand was outdated. Sean travelled to the next town once again to get his prescription. The probiotic caused increased pain and was discontinued after three days.

Sean went to the scheduled meeting with Mr. L, but MAJ Z and COL Y were not in attendance. Mr. L told Sean that he had spoken with COL Y on the phone and she decided they would continue the course of treatment with Dr. X. The request for transfer was denied in order to exhaust all their resources first. Mr. L also told Sean, “I have spoken with your congressional contacts, so there is no need for you to call them again.” Um. . . excuse me? Are you seriously telling me that I am not to call my congressional contacts?

So I called my contacts and informed them know that Mr. L had tried to ease my workload by making the calls for me. Tattle-tale, I know. Needless to say, these contacts were appalled that he so brazenly told Sean not to make further calls.

I also learned that when Mr. L returned these calls, he provided false information such as a new antibiotic was being started that day, and although the pharmacy did not have it in stock, they made special arrangements to have it delivered to Sean. Remember the taxi rides to the next town? What accomodations!

Day Five–Things Are Looking Up

Sean met with Mr. L who was in agreement with our concerns. He submitted a request for a transfer to a facility with an infection control doctor and/or a gastroenterologist. He arranged a meeting with Dr. X, MAJ Z, a case manager, and a COL Y, the hospital director. The meeting was set for the following week as it was now Labor Day weekend and a four-day military holiday.

Day Three–We’re Not Gonna Take It

Day three and things were changing rapidly. Dr. X brought Sean into his office and told him that he had researched c-diff and could indeed treat him. He said further tests for the presence of infection were unnecessary as the infection is considered gone when symptoms subside. The doctor in Germany had said three negative tests were needed to confirm the absence of c-diff infection.

He switched from flagyl to vancomycin for antibiotic treatment. According to his research, the new antibiotic would clear the infection within 10 days and he would be home by Labor Day.

Dr. X did call the CDC and they recommended confinement to quarters as c-diff is infectious. Sean would stay in his room with the exception of making the 3/4 mile hike to the hospital three times a day and attending formation each morning. He was not to spend time in the medhold dayroom with other soldiers.

Dr. X also cancelled the appointment with Dr. D because he felt (with his vast knowledge of the infection) that the new antibiotic would clear it up. Sean had to travel to the next town by taxi to pick up the new medications because the pharmacy on base did not carry it in stock. As an added bonus, since he was not given the prescription through the post pharmacy, he had to call and argue with TriCare (military insurance) to get them to authorize the prescription and pay the cost.

I decided that instead of taking a “wait and see” approach, I would be pro-active and get things moving quickly. I called the offices of our US Senators and Representative for South Dakota and asked each of them to make an inquiry regarding Sean’s care and possible transfer to an actual medical facility.

Within an hour, I had the name and number of a patient representative on base and a meeting was arranged between Mr. L and Sean for the next day. One thing I have learned through this experience is that nothing makes things happen like a call to the Senator’s office.

Day Two–Very Reassuring

Day two started at 6:30 AM when my phone rang. The caller ID showed the incoming call was from the base hospital. Stomach in throat, heart racing, I answered the phone. “Hello?”

“Is SSG Johnson available?”

“No, who is calling?”

“This is Dr. X. I was trying to locate SSG Johnson.”

“Um. . . I’m in South Dakota, he is on base in the medhold barracks.”

“Oh, yes. I will try to find him there.”

Ok, feeling extremely unsure of the situation now. Shouldn’t the Dr. be able to find the patient?

Later that day Sean went in for a meeting with Dr. X. During this appointment Dr. X looked up c-diff on his computer. Sean sat there as he reviewed the information on the screen and then said, “I can’t treat that.” Good to know.

Dr. X arranged an appointment in town with Dr. D, a GI doctor, who agreed to perform a one-time evaluation and then make recommendations to Dr. X on how to treat. Very reassuring.

Sean was sent to the ER to reclaim his medications that the staff had “found” overnight.

I was greatly concerned that there was no monitoring of fluids, medications, stools, or food intake. No one was scheduled to check on him throughout the day. He was given narcotics for pain, while in a depressed emotional state and sent to a room to spend most of the day alone. Sean said if he didn’t show up for formation in the morning, then someone would come to check on him.

I decided to locate the post chaplain and ask for some assitance. I visited with him, explained the situation, and asked him to please arrange for someone to check in with Sean periodically as he was sick, lonely, and depressed. The chaplain assured me that he would take care of it. No one ever came. Approximately two weeks later the chaplain made it up to Sean’s room to visit with him. He apologized for the delay, saying it was a big base and man-power was thin. Sean did like the chaplain and later made a few trips to his office and got some good reading material.

Don’t Mess With My Wife

Day 1 did not leave a good impression with me for obvious reasons. I couldn’t sleep last night after posting, it affects me so deeply still. We joke about it, tell the story, but when I think about the way Sean, a three-time honorable veteran, was treated it makes me physically ill. He has stopped reading the blog now because he does not want to relive this stage in his life. Can’t say I blame him.

I want to take a moment to describe my mental state at this time. It was the end of August 2006. My husband had been away from home for 13 months. I had not seen him for five months, but had spent those five months hearing every few days about how sick he was. I knew he had dropped at least 40 pounds, but had not seen him with my own eyes or touched him with my own hands. I mentioned before that my husband does not get sick, does not take sick days, and certainly does not complain (that is my job in the family–one I do well, I might add). So when I hear that he is sick, in the bathroom 10+ times a day, losing weight, not eating, doubled over with pain at times it nearly drove me insane!

I have a child who does not, under any circumstances want to go to school and rebels constantly. Pierced lip, ears, breaking curfew, skipping school, fighting at home, you name it. This teenager had some serious separation anxiety issues and pushes others away just to see who will return and still be there. I have a child who was transitioning to a life in a new town with us as the full-time family. There had been a hard road for this one for such a short life. We were adjusting to each other and dealing with residual issues as well. I have a child in the middle feeling left out because one sibling is acting out and one is having difficulty with the move and middle child is unhappy with the changes. The middle child is used to being the youngest child. The youngest child was formerly the oldest child in that household. The oldest child was acting out. And while I am not a single parent (praise to those of you who are), I was very much on my own.

I was starting a new school year with a class of 26 students. Typically, I get the few students who are more challenging because I have a background in special education and previously worked with students who were emotionally and behaviorally disturbed. 2006 was no exception.

The Family Readiness Group, of which I am the assistant leader, was planning for an October homecoming for the unit. I didn’t know when my husband would be coming home. I attended the meetings and helped with the preparations, but my heart ached at the thought of the soldiers coming back and mine not being one of them.

My husband just arrived in the United States, and I could not see him, comfort him, or care for him. I remember Sean calling home that first day and I think he was in tears (not that he would admit it) as he described how incredibly alone he was feeling. I sat down and bawled after that conversation. I did not sleep that night. All I could do was lay there and think, “How am I going to get him out of there?” I was feeling overwhelmed, exhausted, and in no mood to mess around with stupid people.

I don’t mean to say that everyone Sean came into contact with was stupid, but as you read, you may be able to pick out a select few.

The Finest (Lack) of Care the Military has to Offer

585 miles from home. 10 hours away. Sean was back on US soil and although I couldn’t be with him, I knew that he would be getting the best care possible and would soon be returning home to us. After 5 months of battling illness, Sean would be recovering and on his way home.

This could not have been farther from the truth.

Disclaimer: The military does offer top-quality care to its soldiers. However, this was not the experience we had at this particular military facility. I wish to tell our story which involves lack of care and a fight to get the medical treatment my husband deserved. Please do not take this as a generalization of all military facilties or military healthcare.

Sean arrived at his destination on August 27th, 2006. I had contacted the hosptital to see if they could let me know when he arrived. Of course with privacy policies, they could not. They did offer to give my number to the paramedics on the ambulance so that if Sean asked them to contact me, they could.

The ambulance picked him up at the local airport and transported him to the emergency room on base. Two doctors met with him in the ER. The first doctor wanted to admit him to the hospital, give him some IV fluids, and review his records. The second doctor, who will be known as Dr. X, discharged him and sent him to the medical holdover barracks.

Sean had been told in Germany that he would be seeing a GI specialist to treat his illness. Dr. X told him there was not a GI specialist at this facility. He reported that records from Germany said nothing about the c-diff infection, rather had him categorized as irritable bowel syndrome (IBS). Dr. X said there was no need for continued fluids, medication, or isolation (he had been in isolation in Germany due to the nature of the c-diff infection). He told Sean, “You’re fine.”

The ER staff took his medications for pain and nausea for inventory and later refused to return them. Sean was told they had “no record” of any pain medications for him.

And so begins the fight. Sean will tell you, “Don’t mess with my wife.”