Friday, July 26, 2013

Ken's Ordeal Part 7: A Mayo Deja Vu

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

One of the Mayo entrances.
There is little to say in this installment.  Our second trip to Mayo Clinic was mostly for follow-up visits.   

The neurologist had ordered a test Ken had already had done in Sheboygan.  It is a nerve function test, very unpleasant and quite painful.  Ken was not anxious to repeat it, of course.  It was a good thing he had it done again, however, because this time some damage was revealed.  Perhaps the difference in the two tests is because Mayo's is more sophisticated, or perhaps the damage has grown worse and so showed up.  Anyway, he may have a compressed ulnar nerve in both elbows.  This is the result of thickened ligaments/tendons--a consequence of uncontrolled diabetes. Remember the "damned pheo" and how it caused wild swings in blood sugar?  This compressed nerve could be the cause of some of the deterioration, pain, and swelling in his hands and may require surgery.

The front entrance.
He spent time with two orthopedists who examined his shoulders and reviewed the shoulder MRI results.  There is some neuropathy (diabetes again) but nothing that would account for the limit in range of motion and the extreme pain.

As for his general illness, weakness, low hormone levels, low blood pressure, continued weight loss, etc. there were still no answers.

We met again with Dr. Daniels, the internist who started the process at Mayo.  He was dismayed about the Camp Lejeune situation.  He told me he had read the entire article and had then done some follow-up research.  Unfortunately, there are no tests that would, at this late point in time, confirm that the toxins in Lejeune's water had caused any of Ken's problems.  "That doesn't mean they didn't" Dr. Daniels said with a shake of his head, "just that we won't be able to confirm it."

He wants Ken to come back for another round of lab tests that will look for toxins, heavy metal poisoning and other issues and also wants him to visit the Gastroenterology Clinic.  There are other diseases that can cause neuropathy besides diabetes, and some of them arise in the digestive system.

He is concerned that Ken may have neuropathy that effects not only peripheral nerves but also the autonomic nervous system--the delicate workings that we don't think about.  Breathing, heart beat, weight gain or loss, blood pressure, perspiration and so on.  We are trying not to think of the possible consequences of damage to the autonomic nervous system.

We go back in late August, the earliest appointments we could get.

Outside a large street sale was going on with many booths containing jewelry, beautiful artwork, food, and so on.  You can see Ken on the bottom right, waiting for me on a bench.  It was a steaming hot day but the booths were busy.


I took this photo from the 13th floor inside the Gonda Building.  On the left is the ultra-modern Siebkens Building, and on the right is the beautifully historic Plummer Building, both part of the Mayo complex.  Inside the Plummer Building is a little museum with the original Mayo brothers' offices and other clinic memorabilia.  The inside of this building is gorgeous but cameras are not allowed. 

Sunday, July 07, 2013

P.S. to the Last Post of Ken's Ordeal: "Camp Lejeune's Toxic Legacy"

I forgot to mention something in the last installment (# 6) that might be significant to someone. 

The day before we left for Minnesota, I was sitting in the waiting room at my doctor's office and picked up an American Legion magazine.

The cover pictured a little girl who looked strikingly like our daughter, Kristina, at the same age. Opening the cover, I felt a little jolt of surprise.  The title article was the same as this post, "Camp Lejeune's Toxic Legacy." Ken was stationed at the Marine Corp's Camp Lejeune, near Jacksonville, North Carolina, for three years in the mid-seventies.  Our family, at that time consisting of Ken, me, and our baby daughter, lived at Tarawa Terrace, an enlisted housing neighborhood in Jacksonville, about three miles from the base.

I was appalled by what I read, and I grew increasingly angry.  From the mid '50s till the mid '80s,  Marines and their families were unknowingly subjected to alarming levels of toxins, reportedly the highest known levels ever found in the entire nation.

Click Camp Lejeune's Toxic Legacy to see the article for yourself.

Other links of interest are The Few, The Proud, the Forgotten and Camp Lejeune's Marines Put in Cancer's Harmful Way

An internet search will lead to several disturbing accounts of the water contamination, the slow response of Lejeune's leadership, the lackluster warnings, and the continued efforts to establish links to many mysterious diseases.  The little girl pictured in American Legion Magazine died of leukemia.  Cancer is the most obvious of the diseases that have been suffered by Marines, former Marines, and their family members in alarming numbers.  However, there are many more.  To say I am disgusted does not even begin to describe my emotions upon reading this article and doing some subsequent research.

Will we find some definitive link between Ken's pheochromocytoma, or the other issues he is now struggling with?  Likely not.  But perhaps this information can be of use, or can help answer someone's long-held questions.

We will always wonder. 

Saturday, July 06, 2013

Ken's Ordeal Part 6: The Mayo Clinic

To start at the beginning, click on the link at the bottom of this post, "Ken's Ordeal."

Among other doctors, we visited an allergy specialist, wondering if perhaps Ken's continued illness could be due to some sort of food or other intolerance.  This doctor didn't have any real answers, but he did suggest Ken try out a gluten-free diet.  We have both been gluten free for well over a month.  No change.

He also said, "You really need to get to Mayo."  But he gave us a "doctor to doctor" phone number and specific instructions of how to proceed.  We followed his advice, got a referral from Ken's new primary-care physician, and got an appointment for June 27th. 

We already are incurring some significant medical bills.  Our insurance does not extend out of state; Mayo Clinic is in Rochester, MN.  We made inquiries to our insurance company with no success--and then it dawned on us both that Ken is rated 100% disabled by the Veterans Administration and so has the VA "gold card."  We don't usually access the VA system, since Ken has insurance through the Dept. of Corrections, but after numerous phone calls to the VA, we finally were given the go-ahead for Mayo.  The Veterans Administration would pay the bill. 

Then Ken developed cellulitis in his leg.  That is a story in itself, and I won't take time to share it.  However, this is a severe infection that has twice landed him in the hospital; the last time was for over a month.  We were told he would require at least a month of antibiotics and would not be able to travel.  However, things cleared up much more quickly than expected, and the infection specialist told us the trip would be all right. 

We awaited the journey, feeling hopeful but also afraid to be too excited.  We had been happy to get the referral to the Marshfield Clinic and that visit had been a deeply depressing disaster.  The Mayo Clinic, however, is generally acknowledged to be one of the best in the world.  Their history is fascinating, their research is wide-ranging and impressive, and their staff is numerous. Since people come from all over, the doctors there have a wider range of experience than elsewhere.  Mayo Clinic, Saint Mary's Hospital and Rochester Methodist Hospital form the largest integrated medical center in the world, providing comprehensive diagnosis and treatment for about 350,000 patients each year.

Noah and Lawnmower 
We drove to Minneapolis and spent some time with our son, Joshua, and his family.  It was fun to see our little grandson, Noah, and to catch up with Josh and Stephanie and to spend some time with Keith, Ken's brother.  Ken had purchased a bubble-blowing lawnmower toy for Noah, and it was a big hit.  We tried not to think about the trip to Mayo.

But the day arrived, for the two-hour trip to Rochester.  The weather was beautiful with temps in the mid-seventies.  The countryside was beautiful too, with rolling, lush green landscapes.   

We were grateful not to have to spend money on a motel.  It is expensive to stay in Rochester (a beautiful little city) despite "Mayo Clinic rates."  Ken has a friend who lives in Rochester and he and his wife were away for the week and graciously allowed us the use of their home.

We were a bit overwhelmed with the enormity of the Mayo Campus.  When we passed the Welcome to Mayo sign, I got teary-eyed.  I don't know if it was relief, hope, fear or all three. 

Flowers are everywhere.  So is artwork.  There is sometimes music. The entire campus is beautiful and there is an atmosphere that is full of hope.  It is different than any other medical facility I have entered--almost a sense of being somewhere sacred.  Nearly everyone we encountered, from doctors to technicians to nurses to janitors and volunteers, were smiling and helpful.  I expect their training in personal relations must be pretty extensive, since people come from around the nation and the world--and often are very ill or very mystified about what is wrong with them.  All of the doctors took their time and listened carefully.

Ken by the welcome sign. 
There were about a dozen building in all.  Some are for education, research, and more.  There is a building for primary care physicians who serve the Rochester community.  The Gonda Building and the Mayo Clinic Building are connected and are where most out-of-town patients are seen.  The Mayo Clinic is really many individual "clinics" (at least one or more for each of the various specialties).  This tiny picture of the connected two buildings that I found on their website gives you an idea.  Each building is larger than most hospitals.   The two hospitals, both large as well, are not in the picture.  This is just the clinics.


Artwork from the great glass-blower genius, Dale Chihuly, lines the ceiling of the main entry to the Gonda Building.  I couldn't help looking at it every single time we passed beneath it. The atrium, part of the connecting hallways between the Gonda and Mayo building,  is full of music each day at lunch time.  The sculpture on the wall is called "Man and Freedom" but it made me think of prayer. 
One day, waiting for Ken to finish up some lab tests, I sat in the atrium for nearly two hours.  There is a beautiful grand piano there.  A middle-aged Asian man sat down at the piano, smiled, and began to play what seemed like a soundtrack of my life.  He played hymns and a few contemporary worship songs, theme music from Disney classics, Broadway tunes, and some classic rock arranged for piano, just for good measure.  An elderly lady seated in an chair near me hummed along, and soon I was humming along too.  We chatted, and I learned she was from Indiana, and she had been at Mayo for three days.  When Ken returned, I thanked the piano player and he nodded and smiled and kept playing.  His musicianship was extraordinary, and here he was spending time playing at Mayo.  I wondered about what he did for a living.  I hope he gets paid, somewhere, for making such beautiful music.

Another day when we passed through from the Gonda to the Mayo building, someone dressed in surgical scrubs was playing, "There's Just Something About That Name."  I hadn't heard that worship chorus it in years, and the beautiful melody washed over me like a sweet breath of Heaven.
The days were long.  After our initial meeting with a an internist, Ken had consult appointments scheduled for mid July.  Of course, we (along with most others) came a long way and didn't want to go home and come back later.  Getting into each of the clinics for a consultation can be a bit like waiting for a "stand-by" seat on a plane.   Doctor visits are longer than the industry standard.  They take their time and they are wonderful about answering questions.  Since all the individual clinics are in one location, you can often access several specialists in a matter of days instead of weeks or months.  The schedulers do their best, but they can't always get patients into each clinic.  So Mayo uses a system called "Checkers."  Checkers are people who sit in a clinic and wait, hoping that if someone doesn't show up for a scheduled appointment, they will be given that appointment time.  Every day, each clinic has many such checkers.  We were among them, and we expected answers.
Some, like a woman from South America, were angry at the wait.  Her daughter approached the counter in the neurology clinic and loudly demanded that her mother be seen immediately, asking, "Do you know how much it cost her to get here?"  I felt bad for the South American lady, and bad for the staff at the counter, who each day are confronted with a room full of people waiting for appointments and often an equal number of people hoping someone doesn't show up.  Most of the checkers seemed tired but philosophic about it.  Everyone is glad to be a patient at this amazing place.   Puzzles sit on tables.  Sometimes we would see someone curled up in a chair, sound asleep.
The week was boring, fascinating, interesting, hopeful and depressing by turns.  It was an emotional and physical roller coaster.  For Ken it was often extremely painful.  Ken was seen by an internist, two neurologists, a rheumatologist, and an endocrinologist.  He had many lab tests and several MRIs.  We don't have all the results yet, but those we do have are normal.   The rheumatologist disagreed with the one we'd seen in WI who was guessing Ken has Rheumatoid Arthritis.  Lab results indicate no inflammation, and steroids had no effect.
And no, we do not have a diagnosis.  What is causing his pain, weakness, weight loss, muscle atrophy, hormone depletion and more? All five doctors who saw Ken know he is very ill, and each one is mystified as to what can be wrong.  We are returning mid July for a visit to the orthopedic department, the one requested consult that didn't take place.
We are trying not to think beyond that.