Subarachnoid Hemorrhage

After coming home from the hospital I had to use a walker to help me walk because I didn’t have a lot of balance and the walker helped steady me.  After two weeks of using the walker I decided that I had had enough of it and that I wanted to walk on my own.  I practiced walking without my walker by walking up and down our hallway with my mom right beside me in case I started to fall.  I was able to do this and would also practice with my therapist.  Soon I was able to walk without the walker although I still had to hold on to the walls, table, counter, chairs, couch, doorknobs, and anything that was stable.  I wasn’t strong enough to walk without holding onto anything.  Even though I still had to hold on to things I felt like I was making progress. 

During the month of December the feeling in my right leg started coming back.  It had been numb since my surgery so this was a good sign.  My left leg was still numb which was kind of a blessing.  As my right leg started waking up the nerve pain started.  It was so intense and painful.  The only way I can describe it is as an electric shock up my entire leg.  Since it was so painful all I could do was grab where it hurt, rub it, and cry out in pain.  I tried different kinds of nerve medicine but nothing helped.  I just had to wait for my spinal cord to calm down and get back to normal which would take anywhere from six months to a year from the time I had surgery. 

During the weeks following my surgery and rehab stay, I continued to work on getting my muscles stronger and doing balance exercises to get my balance back.  I hated doing the balance exercises so much!  I was so scared that I would fall.  I didn’t trust myself and didn’t think that I could do the exercises.  I hated it when my dad would tell me it was time to work on my balance.  He would put me through different exercises that would test my balance.  He would be right by me so he could grab onto me so I wouldn’t fall when I started to lose balance.  I had a tendency to just grab onto his arm automatically because I was scared.  I don’t know how to explain the feelings and emotions I had as I tried to do simple tasks.  It was really hard knowing that before my surgery I could have done the exercises without any problem but now it was next to impossible.  There were a couple of times where I would go into my bedroom after a hard exercise and just cry.  As I cried I asked my Heavenly Father what I had done wrong and if I was being punished for something.  I felt like I had done something to deserve what I was going through.  One particular night as I was laying on my bed crying, my dad heard me and came into my room to see what was wrong.  I told him that I felt like I had done something to deserve this and that I was being punished.  He talked to me and asked me if I really thought Heavenly Father was punishing me.  I told him no, and came to my senses that I hadn’t done anything wrong.  This was life and it was just something that happened. 

Just before Christmas I went in to see my neurosurgeon for a follow up visit. He didn’t know why I lost the ability to balance and walk and kept apologizing that it had happened.  I told him it was okay and that it wasn’t his fault.  He had his therapist come in and test my muscle tone in my legs and to do some balance tests on me.  The muscles in my left leg were weaker and the muscles in my right leg were stronger.  This was opposite from when I was tested before my surgery.  I didn’t do very well with the balance exercise where I had to stand on one foot for 10 seconds.  I was also asked to get up off the exam table without using my hands and arms to help.  This was very difficult for me.  I couldn’t seem to stand without using my hands and arms to help push me up.  I couldn’t remember how to just stand up.  I felt really stupid because I couldn’t seem to grasp this simple task.  It used to be a piece of cake but now it seemed impossible.  Before I left, the therapist recommended that I start using a single arm crutch to help me walk.  He didn’t think it was a good idea for me to be using solid objects around my house to steady me in my walking.  He said I was “traveling” when I did this.  On our way home from the doctors my dad and I stopped at the Centerville D. I. where my dad found a single arm crutch for $2.  I wasn’t thrilled with having to use it but it didn’t take me too long to get used to it.  Soon I wouldn’t go anywhere without it and I became way too dependent on it.

On fast Sunday in January I had some questions that I really wanted answered so I prayed and pondered until I received an answer.  I was getting better with my walking but still felt that something was missing, so I prayed to know what was missing.  The answer I got surprised me.  I wasn’t expecting it but it was very clear what was missing.  I finally had to admit to myself that I had lost my faith and trust in Heavenly Father.  I didn’t think He was going to help me.  It was a hard answer to get and I felt horrible because I knew that Heavenly Father had been with me every step of the way and wasn’t going to leave me to struggle on my own.  I repented and knew that in order to show my trust in Heavenly Father that I needed to stop using my crutch and just start walking without help.  So I put my crutch in a corner in my room and started walking without it from that moment on.  I also prayed to know why I was going through this particular trial and the answer I got was because I could handle it.  It was simple and it gave me strength.  I could handle it despite how hard it got. 

I started going back to the Temple the first week in January and I had an amazing experience that made me want to go back each week.  So I did.  I still had my fears about being able to balance and did almost fall during my first endowment session but some sweet temple workers helped steady me.  As I went to the temple each week I was able to see the blessings that were coming.  I loved going because I felt so much peace while there.  My dad was right when he told me that I would be blessed for going.  

As the months went by I continued to get stronger and would try new things.  One day in February or March I decided that I wanted to try going down our stairs to see if I could do it.  No one was home but I decided I was going to try anyways (probably not the smartest thing to do).  I was able to do it and I was so excited! I had made a list of things that I wanted to accomplish and when I did I would know that I was getting back to normal.  Going up and down the stairs was one of the things, so I was able to check that off the list.  One of the biggest goals I had was to be able to go to the temple and walk everywhere I needed to without using my crutch.  Even though I wasn’t using my crutch for most things I would still use it when I went to the temple just to help me keep my balance.  In March I was finally able to accomplish my goal of going to the temple without my crutch.  I was still very slow in my walking but I felt like I was making so much progress. 

Towards the end of March I woke up one day with blurry vision in my right eye.  I thought that I was just having an ocular migraine and that the blurriness would go away.  My vision stayed blurry in my right eye for three days so I decided that I needed to get it checked out.  I went and saw an optometrist on a Friday who did some tests and said that the tissue near my optic nerve was inflamed.  I was told that I needed to come back and see an ophthalmologist that coming Monday.  So on Monday I went and saw the ophthalmologist that my mom sees.  He did some tests on me and told me that I had a blood clot in a vessel in my eye that was near my optic nerve.  He took pictures of my eyes and I was able to see the blood clot in my eye very clearly.  I was put on the blood thinner Eliquis to help dissolve it.  I didn’t know it was about to cause some serious damage.

The week after I started taking Eliquis I started having extremely bad headaches.  I couldn’t get them to go away.  No amount of pain medicine helped and they eventually started feeling like a migraine.  I had to put blankets over my windows in my room because I was so sensitive to the light.  I also ended up getting sick and throwing up every day.  My doctor had prescribed Tramadol to help with the pain.  The medicine made me really tired so I slept pretty much all day.  Since my headaches weren’t easing up I went in to see a doctor to see if they could give me anything to make the headache go away.  I had a CT scan done just to make sure everything was alright.  When the CT scan came back normal I was given a shot of some medicine that was supposed to help the headache go away.  The shot didn’t help and my headache persisted. 

Eleven days after I started taking Eliquis, I remember waking up and eating breakfast where my dad told me that he did not want me fasting (it was fast Sunday) because I weighed 98 lbs.  After I finished eating I went back to my bed to sleep because my headache was still really bad.  I remember getting sick just before my parents left for their temple assignment at the Bountiful Temple but was pretty out of it that I didn’t care that they were leaving.  My mom had an uneasy feeling and didn’t feel like she should be going to do her assignment, but went anyway.  The uneasy feeling didn’t go away and stayed with her while at the temple.  My grandma and brother also had an uneasy feeling.  When my parents came home from the temple, they came to check on me.  When they found me they knew that something was wrong.

 

My dad asked me questions to see if I was alright but I couldn’t answer them.  I couldn’t stand or walk either.  So my parents took me to the Emergency Room at Ogden Regional Hospital where a CT scan was done.  The scan came back showing that I had a Subarachnoid and Intraventricular Hemorrhage (brain bleed).  My parents were told that I needed to be transferred to the University of Utah Hospital because they were more capable of taking care of me.  I was transferred to the University Hospital by ambulance where I was admitted into the Neuro Critical Care Unit. 

More tests were done and a feeding tube was placed because I was malnourished.  The angiogram that I had done on Sunday showed that both of my Carotid Arteries were occluded (blocked).  Because of the brain bleed the cerebral spinal fluid (CSF) wasn’t getting absorbed like it normally does.  The doctors didn’t know how much pressure was being put on my brain because of the fluid build-up, but if I went unconscious they would know there was too much pressure. 

According to my dad I became more “active” Sunday night and started turning from side to side until the early morning hours of Monday.  After being “active” I once again became out of it.  Early on Monday morning physical therapy was sent up to work with me but they had a hard time waking me up.  As they were trying to get me to wake up I had a seizure.  The seizure caused me to become weaker on my left side as well as causing left sided facial drooping.  The doctors knew that the fluid around my brain was putting pressure on it, although I had not gone unconscious.  On Wednesday it was decided that the fluid needed to be drained.  The doctors came into my ICU room, shaved a three inch patch of hair on the top of my head, and then drilled into my skull to thread a tube along my brain to drain the fluid that had built up.  When they drilled into my head the fluid started coming out so it was a good thing that they were placing a tube.  The fluid drained for a week and then the tube was taken out.

I don’t remember any of this but was told by my parents everything that had happened.  I don’t remember coming around until later in the week.  I remember my bishop and stake president were there to see me.  I can also remember pulling my feeding tube out three times but only remember the nurse putting it back in once.  My hands were restrained to the bed which I hated, but it had to be done to make sure that I wouldn’t pull the tube out of my head.  I didn’t even know I had a tube in my head for the longest time.

As the days passed I worked with physical, occupational, and on occasion speech therapy to strengthen my walking, griping, and understanding.  Every couple of hours my nurse would come in, check my eyes, make me smile, and ask me a bunch of questions.  At first I had a hard time answering the questions and didn’t always know where I was.  Towards the end of my stay I could answer without difficulty and got tired of them asking me. 

Multiple doctors came to see me every day.  The neurologist who was over me wanted to figure out why this had happened to me, a mostly healthy, young 25 year old.  Multiple blood tests were done including a genetic test.  Because of what was found in my angiogram of my neck they believed that I had some form of vasculitis.  A couple of Rheumatologists were assigned to my case and came to see me at least twice a day telling me what kind of vasculitis they thought I had.  It changed on a daily basis.  They could never figure out what I had and to this day I still don’t know.   

During my second week in the ICU I had another CT scan on my brain, and then I was also taken over to the Moran Eye Center that is right by the University Hospital.  I had tests done on my eye to see if I had cotton wool spots (white spots that are found in the retina of the eye).  Having cotton wool spots would help support the theory that I had some type of acquired immunodeficiency syndrome.  The tests on my eye showed that I did not have cotton wool spots and that the blood clot in my eye was no longer there. 

After being in the ICU for twelve days I was finally discharged. Once again I came home on a walker because of my left sided weakness.  I only used the walker for a couple of days before I decided that I should just try and use my crutch.  Because I was still pretty weak I did end up falling twice within the first week I was home.  After a couple weeks I started getting better in my walking although I never fully got off my crutch.

In June I had my follow-up appointments with the neurosurgeon and neurologist who were over my case while I was in the ICU.  I had another CT scan that showed that my brain was fine.  The genetic test that I had done came back and showed that I have an abnormality with one of my collagen genes, but they aren’t sure what it means.  My neurologist ordered an MRI (which had to be done at Primary Children’s Hospital because of my pacemaker) because he believed that I may have had some mini strokes.  I was surprised to hear this and wanted to see what the MRI showed.  I had the MRI a couple weeks later and when I read the results (and googled what I didn’t understand) I found that I didn’t have any mini strokes, instead I had had an actual stroke.  I was told that the stroke was not recent and that it was probably caused by my occluded carotid arteries.  My dad and I believe that I had a stroke the night of May 6, 2015, and that’s what started all of my problems.