Ken Horst

First post: May 24, 2011 Latest post: Jul 13, 2015
Welcome to our CaringBridge website. We've created it to keep friends and family updated about Ken Horst. Get started by reading the introduction, called My Story.

Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.

If you want to send mail, it is probably best to send it to our home or put it in our church mailbox. Family visitors can bring mail down to me, or I can get it when I come home overnight every 8-10 days or so.

The very short version of Ken's background story is that he was hospitalized 4 times from April 28-May 18, diagnosed with viral myocarditis or viral cardiomyopathy. His case is serious because it involved ventricular tachycardia and ventricular fibrillation, which can cause sudden death. He did not respond to medication in typical ways and nearly died two times.

The new diagnosis, as of May 27, is giant cell myocarditis, a very rare, rapidly progressing, and almost always fatal disease.  Ken is now on track to receive a heart transplant. He was officially listed on the transplant list June 7.  As a bridge until that can happen, two ventricular assistance devices (VADs) were installed to serve as an artificial heart. Their nicknames are either Goodness and Mercy or Click and Clack. Take your pick!
Both of us have drawn strength on this journey from each other and from family, friends, prayer, music, nature, and a Celtic Christian prayer book.

Here's a short timeline before he was admitted to Methodist hospital on May 26. Journal entries detail the rest of the journey:

April 28 - Rapid heartbeat after playing racquetball, recorded on small heart monitor from ebay. First hospitalization.
April 29 - Heart cath discovered no artery blockage. No abnormal heartbeats beyond occasional PVCs (premature ventricular contractions). Discharged April 30

May 1  - Collapsed on kitchen floor with ventricular fibrillation /tachycardia. Taken to ER via ambulance
May 3 - ICD installed (small defibrillator near collarbone)
May 5 - released from hospital on two heart rhythm meds: Amiodarone + Coreg.Also Magnesium oxide.

May 6 - ICD fired 6 times in 30 minutes, due to "VT storm"  Taken to ER via ambulance.  7th firing at 1 a.m. in bed.  3rd heart med added: Mexiletine.
May 9 - released from hospital

May 10-12  At home. Gradual increase in mobility, but severe GI problems and some dizziness.

May 13 - Cold sweats, severe nausea, pounding heartbeat, then fainted and could not get up afterward.  Back to the ER in the ambulance, for the 3rd time.
Taken off of Mexiletine and Coreg.
May 17 - Right lung tapped to drain 1.2 liters of fluid, due to congestive heart failure.  Ultrasound scan of heart.
May 18 - released from hospital after adding new med: Tropol, a time-release beta-blocker

May 19-22 At home. Quite weak. Increasing problems with fluid, cough. Increased diuretic dosage, per doctor's orders.

May 23 - Cardiologist appointment. He requests evaluation in Indianapolis, adds a 2nd diuretic and potassium supplements.

May 26 - appointment with Dr. Mastouri at Methodist hospital.

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