Timothy Allen | CaringBridge

Timothy Allen

First post: Feb 15, 2017 Latest post: Sep 22, 2018
Hello all!  So, the story actually begins  a few generations ago.  Tim's paternal grandfather had a curved back, and it turns out that the issue is something called Scheuerman's Disease (for more information here is a helpful website: http://emedicine.medscape.com/article/311959-overview).  Tim's father has a mild degree of this as does at least one of his brothers.  Tim has had a "hunched" back since his pre-teen years and has had pretty constant pain since then.  He never let anything slow him down, though, even when he had another spontaneous vertebral compression fracture in 2012.  I think he maybe missed a day of work for that!   Over time the curvature of his middle back (where the lumbar vertebrae meet the thoracic vertebrae) has gotten worse, so  Nikki has been catching up to him in height (smile).  He has seen physical therapists, done exercises at home, and tried fancy braces, but nothing has slowed down the curvature or improved his spine.   As most of you know, it is pretty near impossible to slow Tim down, however, over the past year he has been far more tired than usual.  He ended up seeing an allergist who did a quick pulmonary test and told him she thought he was developing restrictive lung disease.  He has long had asthma, but that is an entirely different issue than a restrictive lung disease.  For those non-medical types, the test showed that Tim was not able to get enough air into his lungs.  That can be due to lung diseases like pulmonary fibrosis, but in his case the issue looked more like he was struggling to move enough air as his ribs just can't move enough to get air in and out.  As the spine bends forward, the space for the lungs gets compressed and the ribs can no longer expand to allow air in.  Tim saw the pulmonologist who repeated the breathing test and verified that the restriction was real.  He also ordered a sleep study to see if Tim was struggling to breathe at night.  Since Nikki has sleep apnea and uses her own CPAP we knew what we were getting in for, and when they woke Tim up half way through the test to tell him that he did need CPAP we were relieved!  If we could just get him started with CPAP and help him sleep better then we wouldn't need to do anything further.  However, we got a call from the pulmonologist a week later that even on the highest pressure of CPAP they still couldn't get him to breathe through the night.  So, there is no longer any option other than having his back fused to straighten it as much as possible and allow his ribs to expand again and allow him to breathe.    That would require straightening his spine from the back and supporting it from the front, too.  There are only 3 surgeons we have found in the midwest who are well versed in doing surgeries like this, so we are planning to see the surgeon closest to us, in Madison.  

We don't know what the future will hold for all of this, but we are trusting that God is in control!  One thing our family loves is silly stories, so if you have any fun, silly, or memorable stories of Tim's interaction in your life, please share!


Updated August 2018 - Surgery was not an option, so we settled into the new norm with Tim using his BiPAP at night and kept plugging along.  There have been a lot of difficult life changes for us over the past couple years, and we were both worn out.  However, I started noticing Tim was getting more tired and more short of breath than usual in the past couple of months.  I wasn't able to put my concerns into words until August 5, 2018, when in my journal I noted that I felt God was preparing me to let Tim go due to a lot of things that were happening in our lives.  Tim and I talked a couple days later about my concern and we both had a deep sense that God was preparing to take Tim to heaven, but we thought we had years left.  It is now August 17, 2018, and yesterday I was preparing myself to lose Tim.  Today we have hope that there is more time, but we also feel that each day is a gift, so we want to be sure to use each day for God's purpose and for God's glory.  
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