Tim’s Story

Site created on December 7, 2019

I am creating this page at the request of my dear wife Carrie.  While I know this is a great way to communicate, right now I am just trying to save my wife's hand from typing everyone about what is going on.  I have to admit though, I have had a couple family members and a couple friends use CaringBridge, and it has been a great way to stay informed about their journeys.  I guess I never thought I would be one to have a story to share.


As most of you know, in September of 2016 I was diagnosed with heart failure.  I fainted while walking into a football game, busted up my face pretty bad and went to get some stitches.  Fortunately, the doctor who was going to stitch me up recently went through a similar situation with her husband and sent me downtown to the hospital.  I was admitted for an abnormal EKG and for my heart going into v-tach.  (Lower portion of the heart beats faster than the top.)  Basically, my heart was not contracting as much as it should.  About a week later I was heading home with an implanted defibrillator, a handful of medications and many upcoming doctor appointments.


The following year I was taken off blood thinners.  This is common practice, but for me it caused me to have a stroke.  After returning from the hospital and doing some therapy, I was back at it.  But my heart continued to deteriorate.  My ejection fraction was bouncing around 30% or half of what a healthy heart contracts.  This past May while I was lifting weights, my defibrillator went off.  Six times!  It felt like a major league baseball player hit me across the chest with a bat.  I literally sat there absorbing the shocks thinking I was going to meet God and see my friends and relatives who are already in their eternal home.  But after another hospital stay, change in medications and a new defibrillator I was back home.  Since then, my body has been compensating considerably less.  Now I find myself in the hospital in an ICU room waiting for a new heart.


It is amazing how much the Lord has watched over me through all of this though.  Not much more than a decade ago, the only way I would have been diagnosed was through an autopsy.  From the first doctor I saw and the experience she had with her husband, to all the great doctors and medical staff I have seen, the Lord has been very present.  I am so blessed to live in a town with a great hospital that does heart transplants and has phenomenal cardiac care.    

Newest Update

Journal entry by Tim DeGeest

Hello everyone!  It has once again been a while since I last wrote.  I am not sure how much I will continue to write as most of you know this is not my favorite thing to do.  However, I feel I need to fill everyone in on things that have been found out about my condition and what it means for me going forward.

First of all, it was determined that I am the first person in the world to be recorded having this certain gene or variation of it.  The closest they could find on record was a French Canadian couple with a different variation.  The gene they found that I carry deteriorates the heart around the age of 40 and it can also effect the muscles in the extremeties.  No one is exactly sure what will happen.  The neurologist I saw does not think I will ever lose my ability to walk.  But who knows, I am the first person on record and presumably the first person to be treated for it.  The treatment plan is for me to see the neurologist again in a year.  That is it. (They already replaced my heart.) 

The second thing that is going on is my muscle atrophy in my right shoulder.  This is from a nerve that was cut during some procedure I had at some point.  I am told that the nerve should heal over time.  We will see.

The third thing is my heart.  I received my 8 month biopsy result back and again have a mild stage 1 rejection.  This is treated the same way as no rejection.  So I am thankful for that.  I am back to life as normal.  I still feel side effects from all the drugs.  Although, my drug count is down to 30 some pills a day.  I can not run like I used to either.  The running thing I am told can take as long as 18 months to get back to normal.  I am sure some of it is a mental road block for me as well.  

I also have some very sad news to report.  My brother-in-law's Mom was called home to be with the Lord.  It is sad for those of us left here, but I can only imagine how happy she is right now!  We were neighbors for weeks in the ICU.  Literally neighbors as our rooms shared a small window between them.  Ironically, I was on that floor visiting with some nurses and doctors when Carrie Kent was called home the other day.  We were laughing about how we would have the entire floor of nurses and doctors cracking up when we would go into eachothers rooms to visit eachother.  They said they never had that before.  One nurse said our balloon pumps were in synch.  Carrie and I prayed a lot for eachother and with eachother.  Carrie was an awesome nurse in the Emergency Department.  Whenever I was there, (A fair amount over the last 5 years with some pretty serious stuff) Carrie was always there.  (Her daughter, also a nurse, was often there as well)  They were such a light to us in some pretty dark times.  And wouldn't you know it, while I was in the ICU for weeks waiting on a new heart and the few weeks after, Carrie was there as well.  I wish her outcome would have been different, but I will never forget those times with her in the hospital.  She loved the Lord and you knew it the moment you were around her.

Thank you for all your prayers and help!  It meant so much to us.

Numbers 6: 24-26

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