Conflicting Thoughts and A Long Day

Aug 26, 2019 | 3 comments

Travel Assistance

Today Nyel and I head for the University of Washington Medical Center in Seattle for a second opinion about his “ID”(Infectious Disease) diagnosis and treatment.  At the present time, our understanding (which is admittedly confused) is that he is harboring at least three infections in his fragile old body — two (with complicated names) in his thigh in the area of the surgery, and one (chronic myelitis) in his bones, also in the area of his surgery.

After eight weeks of antibiotics by IV in the hospital, Nyel was released without any follow-up medication.  In the time since, he has been in various degrees of pain — from the excruciating-impossible-to-sleep-and-drugs-won’t-touch-it pain to the minimal “only-when-I-move” variety.  He mostly has no appetite and no energy.  And, of course, thus far no one can say if any or all of those symptoms are caused by the infections or by healing or by something as yet undiagnosed.

Meanwhile, the ID team at St. Vincent’s has given conflicting information as to Nyel’s ongoing treatment.  Twice (and by two different doctors) he has been told that they were doing cultures to determine exactly which antibiotic(s) would be most effective, and twice it was decided to let his own immune system deal with the infections for fear he would develop resistance to a drug he might need in the future.

Causing us further angst is the fact that car travel, even when involving short distances (like the drive to Nahcotta!)  plunges him back into a miasma of leg cramping and unbearable pain.  Or so it seems, though we don’t know why.  Right now (and for the past thirty-six hours) he is essentially pain-free after three sleepless nights in a row.  Both of us feel in our bones (so to speak) that the trip to Seattle is likely to have a dire effect on his fragile pain-free-for-the-moment status-quo.  But… on the other hand…

Wound Care Supplies

The final say, of course, is Nyel’s and he feels strongly that we need to pursue this avenue.  So off we go in an hour or two.  It will be an up-and-back trip today.  A three o’clock appointment.  Picking up food as we go and eating in the car.  Only one car exit for Nyel — at the Medical Center.  More than one in-and-out is way too hard on him and just the thought of staying over night anywhere is a nightmare — wound care and dressings and transfers from wheelchair to walker to who-knows what.

It will be a long day.



  1. Pam

    Hoping for some solid information for Nyel.
    My husband had several significant infections. Never were they left untreated.

  2. Betty kennedy

    Hi Sydney,
    I’m sorry to read that Nyel is having so many health problems. I hope UW Medical center has contacted others to try to solve his resistance to the meds he has received. Is this a top medical center? I’ll pray they can get this solved. I don’t know what happened to Nyel, have only read a few of your posting so I apologize if I’m overstepping. Sorry if it sounds that way.

    I am finding out how tough it can be when you have to try to get him in your car, would an SUV be easier for him? We are considering getting one because Tom’s legs are giving out & he finds it difficult to get in our car. Please take care of yourself!

  3. Mary L. Lyons

    Just reading this at 3:00, picturing you at the UW Med Ctr. which I knew well from my 30 years in Seattle before moving to Longview. And if Nyel is going to have those horrible symptoms today, I hope they occur while you’re there and those highly skilled pros can see it storming in fronting them.


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