Saturday, August 30, 2014

New complications

Home hemodialysis is going well.  John and I have been doing it at home without nurse support (other than an occasional phone call), and are becoming more confident.  It is more challenging than either of us expected--partly because he is not feeling well.

After the most recent hospitalization, the fever returned for about a week.  Some nights it was over 104!  Although I accused him of just wanting a sponge bath in the middle of the night,  several times it was frightening.  He continues to take the vancomycin (an antibiotic administered intravenously) after dialysis.  He has not had a fever in 7 days.  He is still experiencing a high heart rate (155-140 resting) and a cough.

The high heart rate has been troublesome for many reasons, but practically because it is difficult to be comfortable and to sleep.  This past week it felt more urgent, and our nephrologist sent John for an EKG.  This brought a new diagnosis:  Atrial Fibrillation.  His heart is stuck in an abnormal rhythm.  It is likely because of the whole mystery infection he is fighting, and not a permanent symptom.

Next week he has an appointment for another transesophageal echo, and then they will try and shock his heart back in to sinus rhythm.  In short, they stop his heart with the idea that it will restart in normal rhythm.

He is also being treated for Adrenal Insufficiency, adding an endocrinologist to his list of doctors.  This is a rare disorder probably caused by a lifetime of taking steroids for his kidney disease.  Two of the doctors disagree on this diagnosis, which we will need to sort out after taking care of this more immediate cardiac issue.

John has taken a leave from work to focus on his health.  He is intending to go back as soon as he can--he has never been a person to hold still for very long.  We need to figure out how to make this work financially for now, planning on getting the house on the market as soon as possible. The other three family members are back to school with Lil in grade 8, Dawit in grade 7, and me teaching grade 6. That's a lot of middle school.

The big picture remains the same:  John needs a kidney.  These are some glitches in preparation for a transplant. The last transplant lasted for 22 years.  That is amazing! John was not hospitalized once for any kidney issues during that time.  In fact, many of our friends and neighbors had no idea of his medical history. Our entire married life he has been well.  Feel free to check in--staying connected is really important to regaining health and strength.  It has been lovely to get a couple of cards in the mail and phone calls from family, and visits from friends who feed us.

Gratitude and love for positive thoughts and prayers and many gestures of support.





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