Monthly Archives: March 2008

You Have Got to be Kidding

Sean was thrilled to have met with Dr. R. Then they lowered the boom. His new doctor on base, Dr. A, would be leaving for three weeks (Sean met him one time) and therefore Sean would be seeing Dr. X.

Wait a minute. . . I thought he was out of the picture. Someone was obviously not telling the truth.

A Second Opinion

Sean was finally able to be examined by a bona-fide GI specialist. Dr. R was concerned about the number of medications Sean had been taking over a seven month period with no relief, or explanation for persistent symptoms.

Sean had a colonoscopy, a small-bowel follow through, and a capsule endoscopy during month two. When all three tests came back with no indication of GI problems or even inflamation, Dr. R did a CT scan which also came back normal.

Dr. R concluded that there was not a problem that he could diagnose, but he would treat to the best of his abilities. He advised that Sean should be under a doctor’s care with an infectious disease doctor as the symptoms were not responsive to the prescribed antibiotics.

Why Not Come Home?

People asked all along, “Why doesn’t Sean just come home?” Well, it was not that easy. First, he was put on medical hold which means he had to stay until he was well enough to come home and do his normal military duties.

Second, Sean was not well enough to come home and go back to work. If they released him from med hold, then his military pay stopped.

Third, military medical can be tricky. If we pursued outside medical advice, the military insurance could write us off.

Finally, to enroll in and doctor with the Veteran’s Administration (VA) Healthcare System meant a 2 1/2 hour drive to see a provider as our town only has a PA, not a doctor.

We were between the proverbial rock and hard place when it came to having the latitude to make other decisions. This is why I was pushing for a move to a different facility or to WRAMC.

I had made contact with the surgeon general’s office for our command. They were not sure that the c-diff was all there was to cause concern. There was talk of parasites, and infectious diseases. They were pushing for a transfer to a facility with a GI specialist and an infectious disease specialist. Since we didn’t know exactly what was causing this infection, we could not be sure that we could find the proper treatment locally.

There were times when Sean wanted to tell Dr. X he was feeling much better and ready to come home. But we just could not take that chance.

Are You Really Here?

Pinch me, I must be dreaming. And if I’m dreaming, I don’t want to wake up.

I spent four glorious days with Sean on base. It was wonderful! We watched movies, shopped at the local Wal-mart and PX. Slept late. Did nothing but hang out.

Sean had a nice room on base, not big, but decent. There was a town on each side of the base about a 10 minute drive to go and do a little shopping or get a meal.

Sean had lost about 45 pounds. His face was hollowed out, as was his stomach. He was walking skin and bones. He moved slowly. Most of the time he slept. I watched him sleep. I checked to make sure he had a pulse and was breathing. He seemed to have pain no matter what time of day it was. It was hard to see him in that shape. I could put my arms around his waist and touch my hands to my elbows on the opposite sides.

As happy as I was to be with him, I also knew it would be over too soon. I was due back at work on Monday. On Sunday I called my principal and told him that I just could not leave. He arranged for a sub again on Monday so that I could stay one more night.

When it was time to leave on Monday, we were both very somber. I dropped him off in the hospital parking lot and tried to put on a brave face. He did the same. Of all the times we had said goodbye, this was the worst. The absolute most horrible of goodbyes. Sean was tired, sick, and depressed and I let him out of the van and I DROVE AWAY.

I drove away and left him behind. Somewhere that he did not want to be. A place that was not treating him well. I cried most of the way home.

I still cannot find the words to describe the ache in my chest that I was leaving him behind. It was one thing to put him on a plane, or see him drive away. But this time, I left him there. What an awful, lonely day that was for us.

Road Trip

At the end of September 2006, I was finally able to go visit Sean! I made arrangements for the kids to stay with a friend, and got a substitute for school. I was excited, nervous, anxious, happy, scared, all in one.

I left late morning, after having a near-nervous breakdown over preparations for the kids, packing, etc. The day was overcast, but otherwise good driving weather. I was very stressed about driving by myself, worried about what time I would arrive, wondering if I could find the base in the dark, and (shocking) missing having the kids in the van complaining about the ride.

One hour down the road and I stopped for a snack. When I came back into the parking lot something came over me and I thought, “I should check my tires.” This is not something I would normally think to do. But, I had a feeling. . . that feeling turned to despair when I saw my flat rear-passenger tire. I drove to the air hose thinking, “Maybe it’s just low,” even though I could clearly see that was not the case. I was in full panic mode. I was at a truck stop, but there was not a repair shop nearby. I didn’t even know for sure where my donut spare tire was (I know, but I’ve never needed to know before). I still had 9 hours on this trip, and now I was thinking maybe I couldn’t even go.

I went back into the truck stop and asked the clerk about a tow and/or repair shop. She gave me a number but said, “It’ll probably be a couple hours before he gets here.” That’s comforting.

About this time, Sean called to say, “How far away are you? When will you be here?” and I lost it. I lit into him about how I was trying to get there but couldn’t have him calling me every five minutes to see where I was. Poor Sean. He had only called one time that morning to see when I was leaving. A little misplaced anger there.

Fortunately, a nice truck driver offered to put on my spare so I could drive 30 miles down the interstate to the next town with a Super Wal-mart and a tire center. God bless that man!! He didn’t even laugh when I said I wasn’t sure where the spare and/or jack were. At least he didn’t laugh outwardly. I said a few prayers of blessing for him and his family and 30 minutes after I stopped, I was back on the road.

I spent the next 30 miles with visions of my tiny spare tire suddenly jumping off my van and sending me into the ditch. Things like that can happen, you know.

I called and apologized to Sean while I spent an hour browsing in Wal-mart waiting for my new tire. I felt so defeated. I could have laid down in the aisle and bawled. Sean told me if I didn’t feel up to the trip I could go back home. That was all I needed to hear. Go home? Are you kidding me? And just who are you to tell me to go home? The trip was on!

Back on the road and things were going well. Then it got dark. The good news is, I couldn’t see what must have been ominous storm clouds. But it wasn’t long before the radio stations started handing out tornado and thunderstorm warnings about 20 minutes behind me all the way there. It rained, poured, thunder and lightning, the whole show. I changed the radio station with every town to hear the latest update. The worst of the storm stayed about 20 minutes behind me. A smart person might have stopped, but I was an exhausted, irrational woman on her way to see her husband after six months. What would you do?

I arrived at base around midnight. I was feeling so very proud of myself for not getting lost! I pulled up and handed my registration, ID, insurance papers to the guard. I was asked to pull to the side and wait. What the hell? Turns out my license was expired!! I almost died! So they had to call the building where Sean was, have him get a ride to the gate, and drive the van onto post. Our reunion was a hug in the parking lot at the gate surrounded by MPs. They were very nice about it and told me who to call to get an extension until I made it back to SD.

Month One Comes to an End

One month came to a close with no answers. Pain persisted despite soft/liquid diet. Medicated for pain and nausea, but no further investigation for a cause. Dr. X told Sean, “you’re getting better, wait and see.”

Ms. S, Sean’s case manager, talked to LT D, hospital director, and arranged at appointment with a civilian GI specialist in a city an hour away.

COL S, the hospital commander, responded to the congressional inquiries with a letter that basically said she was satisfied with the care her facility was providing for Sean. That’s a relief! As long as she was satisfied with his care. . .

Sean’s mental health evaluation was unremarkable. The psychologist said, “you should be agitated due to the lack of care you are receiving.”

I received a phone call from LT. D. She wanted to know exactly what our concerns were for Sean and what they could do to improve their care. Finally! Someone who would listen, who wanted to help! I reviewed the past month with her and expressed our concerns about Dr. X who continually said, “just take your meds,” the meeting where Sean was attacked, threats to withhold treatment if congresssional complaints continued, the whole kit and kaboodle. Little did I know that she was the right-hand-woman to COL S.

LT. D contacted me the following day and informed me that Dr. X would no longer be seeing patients due to administrative restructuring, not due to any concerns regarding quality of care. She said that a second opinion by an outside GI doctor was warranted and had been arranged.

She also told me how lucky Sean was to be at their facility where he could receive personal care (huh?) and not at a large facility like WRAMC where patients stay in hotels and shuttle back and forth to the hospital. A large hospital like that could not possibly give Sean any individual attention.

Although I was not convinced he was lucky to be where he was, I celebrated the victory that Dr. X was gone and a second opinion outside of the military would be arranged. It was a day for dancing and singing!

And then I heard that LT. D.talked to Sean and told him that he needed to quit whining. He had gotten his way, so now he needed to be quiet.

I should have known better.

Just Take Your Meds

Week three began with an appointment at Dr. X’s office. Sean asked again if he could see a GI doctor. Dizziness and nausea had gotten worse. Dr. X agreed to set up an appointment with Dr. D. I’m began to wonder if this Dr. D was even a real person, or a figment of Dr. X’s imagination.

Dr. X said he did not want to let this infection linger and would consider sending him elsewhere if necessary. In the meantime, “take your meds and you will be fine.”

On day 15 Dr. X met with Sean. He could find no explanation for the nausea and dizziness. “Just take your phenergan (for nausea).”

“Your diarrhea is improving, so you must be getting better.”

“Just keep taking your meds.”

Day 16 and Sean met with Dr. X again to discuss a possible transfer to Brooke Army Medical Center (BAMC). After talking to a GI doctor at BAMC, Dr. X said they would not accept his case as it was not serious enough.

Sean was tested for the c-diff infection and this time the test came back negative. Thank God! At last some good news.

The diarrhea, nausea, and dizziness persisted. Dr. X had another medication in mind to clean out the intestinal tract, but the pharmacy–are you ready for this–could not supply it as it was out of stock and they would need to order it.

Dr. X also decided that since the test for infection was negative, he did not need to see GI Dr. D as there was nothing more that he would do. Sean was visibly upset that once again the GI appointment was cancelled. Dr. X told Sean, “You are the most agitated man I have ever met.”

Now I ask you, who among us after 13 months of deployment, 5 1/2 months of illness, coming out of a war zone, and being treated poorly would not be agitated?

Day 22 Dr. X discontinued antibiotic treatment as the infection was cleared up, and the antibiotics were not helping with the current symptoms. Sean was told, “You’re doing well. Just take your meds and you’ll be going home soon.” Really? Diarrhea, nausea, dizziness, abdominal pain so bad that all he can do is lay down is “doing well?”

Sean put in a request with Ms. S for an outside second opinion.

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.