Monday, September 02, 2013

Ken's Ordeal: Part 8 -- Changes, and an Offficially Abnormal Test

To start from the beginning, just click on the label "Ken's Ordeal" at the bottom of the post and scroll down.

Last December we knew Ken was dangerously ill.  I have previously written about the strange mix of symptoms he called "episodes."  They had been occurring for years, baffling doctors, but were reaching a point where they were incapacitating.  In January, after a frightening visit in the Emergency Room and a subsequent hospital admission, someone finally realized that he had an extremely rare adrenal tumor called a pheochromocytoma or "pheo" for short.

We were told that it that it had been the source of his increasingly ill health.  We heard that it was often fatal and only discovered at autopsy.  We were dismayed to understand how damaging it had likely been over the years, but we told each other that when the dangerous and delicate surgery to remove it was done and his recovery period was over, we would have a "KEN IS ALIVE AND WELL" barbecue party in our large backyard.  Even though he was quite ill, we were pretty sure he would be feeling well by summer, since the "pheo" was coming out in February.  All would be fine in time for a warm-weather party!  Things could go back to normal.

Fall is nearing, and all is not fine.  Ken recently said to me, half in jest and half in sorrow, "Well, maybe we will just have a KEN IS ALIVE party." 

If you have read my little "Ken" series (sadly, much longer than I thought it would be) you know that some of his symptoms have disappeared or stabilized, but many problems have remained or even worsened, the worst of which is excruciating pain in his back, shoulders, arms and hands. Methadone supplemented with Oxycontin just take the edge off the worst of the pain, the severity of which has made it impossible to do much of anything.  Some days he can hardly talk.

Many things have changed as long months have passed with no diagnosis for Ken.  He has not been able to go to work at his job as a prison chaplain for nearly ten months.  A few weeks ago he went to the prison to get some things out of his office and to talk with someone in the HR department.  Since I'm the driver these days, I went as well.  It was strange. So familiar and yet so different. 

We tried to be at the chapel during a time when inmates would not be there, but that didn't work out.  Many inmates were happy to see him.  Others told us they had been praying.  One looked at me with tears in his eyes, simply saying, "We miss him."  I overheard one say to another, "Oh, is that the 'old chaplain'?  The one that's been gone?" How strange to realize that he had heard of Ken but never seen him. 

The Department of Corrections will finally be hiring a temporary replacement.  When Ken is actually retired (right now he is on disability leave) that person will likely become permanent.  When we went to the administration building we were greeted by social workers, security guards, and others, many of whom have sent cards and notes.  Some have known Ken for years, and it was difficult to see their not-so-hidden surprise at how much thinner he is.

Some people think that no longer being employed in the negative environment of a prison would be a relief.  They are partly right.  Prison can be a toxic place for staff and inmates alike.  The last few years have been especially challenging as changes have come that made the ministry Ken tried to do increasingly frustrating.  He said to me that the inmates themselves were the least of his struggles there.  Ken cared deeply about "the guys" and he felt called to do what he did.  He is good at being a chaplain.  It wasn't easy, but he tried hard to make the chapel a place of grace, of healing, of respect and acceptance, of peace and light in a dark place.  Not being there will be a relief in some ways, but it also means the end of not only Ken's employment but his ministry focus and a large part of his identify.    

Last week Ken's disability insurance company directed him to apply for Social Security Disability immediately.  Otherwise they will stop all payments.  We figured we'd do this soon, but soon has become now.  So I went online and started the process.

Ken's health insurance stopped on August 31st.  Mine too.  I found a high-deductible plan and Ken will use the Veteran's Administration (VA) for his medical coverage.  While many of the doctors and other employees are excellent and very concerned about veterans, others are not.  The worst thing about the VA, however, is the red tape, the seemingly endless forms, referrals, waiting, and so on. Navigating the overloaded bureaucratic system is often a daunting task.  Ken is already rated 100% disabled by the VA, so even though he had not used his medical benefits, he is eligible for them on a "fee based" status.  This meant that he could continue using his non VA doctors and the VA would pay.  We didn't need them to, so we didn't ask.  Ken had good health insurance from the Dept. of Corrections.

When the famous Mayo Clinic gave Ken the go ahead to become a patient, we knew that to try to get his state insurance to pay would involve a battle.  Therefore, we decided to utilize his VA benefits for the first time.  He made seven phone calls to the VA, trying to get verification that his Mayo visit would be covered. He left seven voice mails. Weeks later, with not one call having been returned, he finally connected with a person on the other end of the phone call. She was very helpful.  I'll call her Val for VA Lady.  She assured him that the VA would pay for clinic visits at Mayo.  That was in May, just before our first trip to Rochester, Minnesota.
On Tuesday, the day we were leaving for his third stint at Mayo, Ken came into the bedroom just as I was finishing loading my half of the suitcase.  He had a blank look on his face, and he said, in an oddly flat tone, "I just got a disturbing call from the VA person."  The details were complicated, but the upshot was that Ken was to immediately stop going to his current providers.  He was to appear at an appointment scheduled in Milwaukee (about 70 miles away from us) with a physician who would become his primary care doctor.  He would have to be assigned the various specialists he might need and appointments would eventually be set up.

To say I was stunned is not adequate.  I can't describe my despair.  I felt like a wall caved in on us.  I was deeply afraid, and I was furious.

I lost it. 

Losing it is not something I typically do.  But I immediately called Val and told her I was extremely angry and upset.  I told her just what I thought.  I told her I could not drive Ken to Milwaukee for his numerous appointments.  I told her I had a job.  I told her Ken was too sick to wait months for the VA to get him scheduled with all the people he would need to see.  I told her some other things...and then she interrupted me. 

She said sternly that she did "not appreciate being yelled at after trying my best." She informed me she had been working hard to get Ken what she thought he had asked for. 

Turned out that for whatever reason, Ken and Val had a huge failure to communicate a while back. Neither of them realized that something was set in motion that Ken did not want.  I don't think I was yelling, but I can understand why it sounded that way to Val.  I know how it feels to be chastised unfairly.  I also know how it feels to be part of, or dealing with, a bureaucracy and to be trying, in the middle of red tape, to do a good job for people.  I was embarrassed and ashamed. 

So then I lost it in a different way.  I tried to swallow the huge lump in my throat, tried to hold back my tears, tried to stuff my sobs back inside.  I failed.  I couldn't speak for crying.  Val, on the other end of the phone, asked, "What do you need me to do?"  I couldn't respond.  I was afraid she'd hang up on me, but she must have realized that I was sobbing, even though the phone was away from my face. Eventually I managed to pull it together enough to speak.  Thankfully, Val listened.  She said she would undo what she could of the process she had begun.  She would cancel the appointment in Milwaukee.  We could continue to visit Ken's docs here, for now.  The day will come when that is not allowed.  We don't know when that day will arrive, but she told us to expect a phone call soon from the local VA clinic. For now, outpatient procedures at Mayo would be allowed, but any surgery would have to be approved and would likely have to be done at the VA hospital.

Numbly, we loaded the car with our suitcase, our satchel of medical paperwork and a small ice chest. Once more, we headed west for Rochester. After a frustrating day with many delays we arrived and found our motel.  We were mostly silent as we ate a late dinner, unloaded our stuff and went to bed.  Neither of us slept well.  When I did sleep, I had bad dreams.

Next morning we walked the short distance to the clinic  It all had an eerie sense of deja vu as we made our way down a wide passageway lined with drawings of the Mayo brothers, into the beautiful marble-floored Gonda building and under the Chihuly glasswork. This time Ken could not walk far so I pushed him in a Mayo wheelchair. The flowers were more lush than last time, but otherwise all was the same--beautiful buildings, helpful volunteers, interesting artwork, music in the sun-drenched atrium and the exhausting routine of being a "Mayo checker" which means sitting in a clinic hoping they will fit you in so you can get more accomplished in less time.  Almost everyone at Mayo is from somewhere else. 

Ken had a gastric scope, some more lab tests, and a strange test to check function of the autonomic nervous system.  We have appointments in September with rheumatology and the hand clinic to talk with the surgeon who expectes to operate on his elbows.  "Checking" at those clinics was not successful.  We hope we don't hear from the VA prior to mid September when we are scheduled for the actual appointment. 

He visited an orthopedist who examined his grossly swollen left knee and told him it would need immediate replacing.  The knee replacement he had about ten years ago was a dismal failure, but no one has wanted to do surgery again on that knee--too many possible complication due to Ken's many leg infections and blood clots.  Well, now he is losing bone and the pain is intense and it "must be done, and soon."  It was refreshing to be told something specific and to be given, however unpleasant, blunt directions.  The kind-faced older doctor was telling us how he would confer with a "surgical colleague to get this scheduled quickly" when we interrupted with a short version of the VA story.  "Ah," he said.  "Well, they have resources in Milwaukee.  They will not let you come here.  I'll send my recommendations to your home address.  You can contact the VA with my consult notes."

Our last visit was with Dr. Daniels, the internist who has coordinated Ken's many tests and consultations with specialists at Mayo.  We both like him very much.  He told us that the autonomic nerve test was "abnormal."  The autonomic nervous system controls all those things we don't think about; heartbeat, breathing, sweating, digestion and so much more. 

It is strange how it can be a relief to hear bad news.  Bad news is better than a continual morass of pain and illness with no diagnosis. 

Peripheral neuropathy is common in diabetic patients.  It causes pain and loss of sensation, usually in the feet and sometimes hands and legs.  Apparently, Ken has neuropathy of the nervous system on a much deeper level.  This is probably due to the undiagnosed effects of the pehochromocytoma, the nasty and rare little adrenal tumor.  Since the surgery to remove it in February, his blood sugar levels have been largely stabilized.  But the damage is done. 

Dr. Daniels forthrightly admitted that he does not know what that means, exactly.  Could it be the cause of weight loss?  Low blood pressure?  Fatigue and general illness?  Extreme pain?  Low hormone levels?  He did not know.  He also did not know what measures could be taken to deal with neuropathy of the autonomic nervous system.

He will confer with a neurologist this week.  He will also try to expidite surgery on at least one elbow on an outpatient basis, before things stop and all depends on Uncle Sam and the Veterans' Administration.

Speaking of veterans, the day we left for Mayo we received a notice from the Department of the Navy about the water toxicity at Camp Lejeune.  They are trying to find all the vets who were stationed there so that they notify people about the possible health effects.

We are longing for normal, but we both know life will not return to how it was.  We are not, and will not be, the same.  Change comes, and things never go back to how they were.  There is only forward.

So we, once more, wait.  This time we have a diagnosis.  We hope for a plan to cope with the nerve damage.  We hope to not hear from the VA until we have done all we can at Mayo.


Chris said...

Still praying, dear Dorcas! Please continue to keep us updated. WE CARE!

Mary Beth said...

Still praying. Holding you up in prayer.

LoieJ said...

Oh dear. I was so hoping that magic Mayo would find something that everybody else had overlooked, the magic pill or something. Well, diabetics have AS worse than the rest of us. That is Aging Sucks.

I doubt that I ever told you that my husband was a VA doctor these last 7 1/2 years. He worked for a company that contracts with the VA to provide outpatient clinics. His departure from the VA wasn't entirely his choice. The contract with one company was up on 6/30; the subsequent company offered him employment, but there were too many things not to his liking about that company, things I can't post here, so he declined the job offer. Not so great to have a job end when you are 64.75 years old. He would have been content to work part time a few more years with the first company, but the VA's red tape combined with other issues caused him to decide he needed a change. But anyway, he talks often about the Veteran's Service Officers, or some such title, that, at least here in MN seem to be county employees or assigned to each county, to help the veterans negotiate their relationship with the VA. That sort of person might be a resource for you. You might also contact someone that I know you know through blogging whose partner had to negotiate getting surgery though a place closer than the VA hospital. Maybe you can get some hints. AKA E2 and E1.

Crimson Rambler said...

Walking along with you...and swearing from time to time (the cat is out of earshot)...fingers crossed that you will meet with more kindness and more competence, maybe even both, as you go.

Unknown said...

Dorcas, I am thinking of you both and praying for you.

stinuksuk said...

Holding you both in prayer.((OOO))

Dorcas (aka SingingOwl) said...

Thank you so much. I don't know how this can go it is worse. Much worse.

Chris said...

Here's a link to one of the blogs I read having to do with RA. Hoping it will help in some way.