Struggling for Survival After Subarachnoid Hemorrhage and Traumatic Brain Injury

27 Feb

Struggling for my survival at home following an untreated subarachnoid hemorrhage of the brain and spine was more than I thought I could do. But, I did not know what was happening to my physical being and maybe ignorance was a blessing.  On the other hand, I would encourage everyone in this situation to keep returning to the emergency room until you receive treatment, even if you need to call 911. It is an Emergency, so do not minimize your symptoms!  I say call 911 because I didn’t have the energy to get anywhere let alone out of the house.  It’s a test of futility!  It’s amazing what the power of prayer can achieve. The real healer is a higher being.

Now that I was home and could barely breathe I still needed medical intervention.  After all, I could not walk, could not urinate, and my symptoms escalated over the next few days.  Besides the excruciating burning sensation down the front of my torso I also had sensational thirst.  I couldn’t drink enough water to keep me hydrated and I was sweating severely.  When I speak of the thirst, I am talking about at least a liter of water every hour. This went on for over a week.  I never felt this thirsty in my entire life. What a  sensational thirst for water!  In retrospect, if you or a loved one is suffering any of these symptoms…get help!  Do not make an appointment and wait for that appointment to come and go.  A delay in diagnosis and treatment may become a poorer prognosis and clouded with a multitude of other issues and symptoms as time goes on.  The best outcome is to improve significantly with treatment. Even with treatment the outcome can be bleak.  So, who is to say what the best treatment is?  I did survive…but barely! You or your loved one needs to be assertive until you get medical treatment or at the very least someone to listen to your complaints.

I am doubtful I could survive this again, but I am certain I would not want to either!  Thirst was only one of many symptoms over the next two decades.   And…for the next 18 1/2 years I struggled with excessive thirst …but not quite to degree it happened December, 1991.  To conquer this sensational overwhelming thirst on a daily basis I used a camelbak everywhere I went and drank about a 500 cc of water hourly.  I simply followed what my body was requiring.  What else would one do?

A camelbak is a small backpack to carry a supply of water.  At home I had thirst bottles in every room constantly filled.  A glass of water was never enough. My family kept these thirst bottles filled. I still require excessive amounts of water, but has been greatly diminished following onset of hormonal treatment and daily injections. If anyone were visiting it’s likely I drank your water too!  The memory was deplorable and it’s a place I never want to visit again in my life.

Immediately following my hospitalization in December 1991 when the subarachnoid hemorrhage was misdiagnosed as alcoholism I attempted to make an appointment at the world renowned heart center in Northeast Ohio. I was only 20 miles away, but it took nearly 2 decades to get the proper medical attention…but it did happen and I am blessed for that.  Only after leaving the state of Ohio to get treatment in Michigan.

Anyway, when I literally was in critical condition at home and needed medical attention in Ohio there was still a delay of another week before I was to be seen by another physician.  The nurses notes clearly document my calling in to see a neurologist, but it was determined that I didn’t need an appointment until the following week. Of course, it was the holidays and healthcare is extremely short staffed.  Believe me, I did not choose a subarachnoid hemorrhage or an assault let alone a time that is busier for the majority of Americans. I also had teenage children and a spouse.  I am Christian and we celebrate Christmas and New Year’s also.   And regardless of my religious background, it’s a holiday for everyone in America.  Thank God I believe in the power of prayer.  This can happen to anyone, anywhere and anytime!

I was told before I was discharged from the suburban hospital that they would call and get me in to see a specialist at this facility.  That never happened, and no where was it documented that the intention to get me help occurred either. Unfortunately, I was dependent on others following through with what they promised.  Lesson learned…don’t count on others to help you when you need it most!  It’s just a money making business for the majority of healthcare providers. I’ve been fortunate to find a few that are dedicated and listen.  Thank God for these physicians that truly listen and care. Lesson here…keep getting opinion after opinion until you feel better.


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