Today is a great day! Every day is, but today feels especially victorious.Having had 13 CT scans on my brain since July 2012, I have become somewhat insensitive to the PROCEDURE. The first one scared the heck out of me. I remember leaving my Dr’s office when they were first trying to diagnose the cause of my headaches. He scheduled me for a CT Scan, explained the short list of what he thought could be going on and then this; As I am leaving, he grabs my arm and has these PARTING WORDS: Mike, you are right to be concerned…
Mike, you are right to be concerned…
Now I don’t know how you would feel hearing that but I had a lump in my stomach, couldn’t sleep despite being completely physically exhausted and all kinds of scenarios kept running in my head. The first few days of waiting were more than unsettling, then a peace of understanding washed over me as I turned to my faith and accepted that the story had already been written. After that, I never thought again that this might be the end of my days but I was hit with the certainty that I was about to face the biggest challenge of my life.
My Doctor had already informed me that they would stop me right there if they saw anything they were concerned about. That was my first CT scan, since that time I have had a dozen more and received all kinds of responses from the CT technicians, ranging from sending me home without telling me anything to putting me into a wheel chair and wheeling me back into the ER.
My scan today marked a turning point though. The image to the left is my skull and brain following my second burr hole surgery in December to drain a subdural hematom. The scary looking black dots are not the problem, those are air pockets left over from the procedure. The problem area is the white band stretching between the air pockets. That is fluid, blood or possibly infection, where there should not be fluid and as you can see there was quite a bit left after the surgery. The first burr hole surgery drained about 120 ml of blood from the subdural hematoma in seconds, it instantly relieved the pressure on my brain which had been shifted off center almost 10 mm. The second surgery 6 weeks later was dramatically less effective and very little fluid was drained which eventually resulted in the craniotomy I had in February.
My recovery following both burr hole surgeries was almost identical. I felt increasingly better for about 2 weeks and then I couldn’t tell if I was getting better anymore. I was still incredibly exhausted and was experiencing quite a few neurological defficiency’s that just didn’t seem to be improving. I was off balance, my speech was not clear, I was easily confused and I was continually having small seizure like episodes.
I was believing in and being grateful for my healing every day and when I was asked how I was doing I would always lie, “Great – getting better every day!” with enthusiasm, it wasn’t the truth. My body was healing from surgery but I could feel my energy being zapped as my body was still fighting something. As my recovery lead to more and more sleeping with little improvement in my neurological functions, it became obvious that the story still wasn’t complete.
We already new what would have to be done if another procedure was required and that was opening my skull to expose the problem area and physically remove the collection of blood. A craniotomy is somewhat of a last resort for repair of a subdural hematoma and I was grateful for the fact that the Doctors were reluctant to jump right in and cut a large hole in my skull. However, I had become decidedly eager to push them to go ahead, my life had already been severely affected for 6 months and it felt like everything in our world had been put on hold while we sorted this out.
After going through another round of neuro testing and reviewing the results of another CT Scan and MRI with my neurologist, I was scheduled for a craniotomy for the following week. The next few days I prepared myself mentally, I spent a lot of time praying and being grateful for the blessings in my life. I accepted the fact that God, as the creator and author of my life, had already put his plan in motion to use this setback to my advantage and catapult me with great favor into my future.
I was calm and at peace on the operating room bed. As I inhaled deeply and drifted off to sleep I was thinking about my wife and children and just how fortunate I was to have such an amazing life and how incredible the next few years were going to be.
I woke to the loudest ringing sound I have ever heard, It’s all I could hear. I saw an unfamiliar face but couldn’t hear what she was saying. I dozed in and out and wasn’t sure if I was dreaming as my Neuro surgeon looked me in the eyes, “it’s a good thing we did that Mike, you had an infection growing on your brain.” As I finally came too, my wife explained that I had not been dreaming, they were shocked to find an abscess growing on my brain.
I thought I was prepared for all the eventualities but this somehow took me completely by surprise. From everything I had read and understood about the risks of this type of surgery, infection was mentioned but this had not even been a consideration and to tell you the truth, it more than freaked me out.
This is where this story really starts though, it’s about your health and the responsibility that we each need to take for our own care. Having had minimal exposure to health care before this, I guess I was somewhat naive. I believed that everyone that I came in contact with would have my best interests in mind at all times. Unfortuneatly I have found, this is not so.
We have all experienced situations and places where people are less than committed to themselves, their jobs and the service for which they are being paid to provide. The health care system has proved to be no different, when I expected a higher level of service and commitment to work ethic because it was my health and my life at stake, I trusted for quite a few months that everything that was being done was for my best interests.
The fluid that was discovered on my brain during the craniotomy surgery was no longer a bleed or subdural hematoma.It was a staph infection introduced in the hospital. The bacteria is common on human skin and hair and when introduced to the warm and fertile bath under my Sub Dura it incubated and grew into the abscess that was causing my discomfort and neurological defficiency’s.
This episode of The Fifth Estate on CBC reported that hospital introduced infection is now the 4th largest killer in Canada. When I look back over all of the events surrounding my second burr hole surgery, I have really started to question a number of things that happened.
Keith Ferrazi, author of Never Eat Alone and Who’s Got Your Back talks about creating a relationship plan around every component of your life. Although, it wasn’t a conscious collective at the time. I had a number of people looking out for me at all times during consultations, appointments, and procedures when I was unable to lookout for myself. Heaven forbid, if you find yourself or someone you care about dealing with the health system, make sure your keep a journal. Take it with you to all your appointments, take notes about what is being said, medications, instructions, etc… Make sure to write down your questions so that you have them handy when you have the opportunity to question Doctors and make sure that you always understand the decisions, reasoning, testing and procedures that are planned for your care.
Burr hole surgery for a subdural hematoma is not conducted in an official operating room. It is done in the Neurology ward, the procedure involves an incision in the skin, a hole drilled through the skull, an incision through the dura and then a tube drain placed in the hole tapping into the pool of blood that has collected. The tube is then stitched into place inside of your head for a period of time, usually around 24 hours to allow blood to drain.
During the second burr hole operation, I could tell the Neurology staff was not satisfied with the amount of fluid that had drained. It was approximately 20 ml from my observation compared with about 120 ml during the same procedure the first time. In an attempt to stimulate flow, the stitches were loosened and the drain was adjusted manually by hand to attempt to communicate with the subdural hematoma. This was attempted on two occassions, picture someone moving a tube in and out of your brain. A certain portion of the tube had been exposed to open air hospital atmosphere.
These thoughts combined with a few other experiences and lack of professionalism during that hospital stay have left me certain that this was the point at which I acquired the infection.
The fallout from that hospital stay has been exhaustive. Once determined that I had an infection during my third surgery, I started a relationship with the staff of the Infectious Disease Clinic. Infection aside, my respect, admiration and belief in our health care system and its staff was still very strong and in tact up to this point.
While I was started on a broad based IV antibiotic immediately while still in the hospital, I was informed I would be released with an IV line as soon as they had determined the exact type of bacteria and prescribed the appropriate antibiotics. This took a few days, during this time we were visited by the hospital employed pharmacist that worked in the Infectious Disease clinic. He advised that the costs of the antibiotics required would no longer be covered by Alberta Health care once I was discharged and that these drugs that I was going to require for the next 6-12 weeks were going to cost me about $100 per week.
Now, I am a pretty simple guy. In my business if we screwed up it was always up to me to make things right, at my own cost, without any questions. Just get it done, make sure the customer is happy and make sure that I have honoured the original commitment that I had made to them. To be told, by one Dr. that I received an infection during a medical procedure and then be told by another employee of the same hospital that we were going to have to pay for it just about put my wife and I through the ceiling. It was absurd, completely ridiculous but they were serious. They were NOT prepared to arrange my discharge, install the appropriate equipment and hook me up with the meds until I agreed and we had arranged payment. Consider yourself in this situation, you can’t help but question your trust of the hospital and staff after receiving an infection while in their care but on the other hand, staph infection is serious – having it on your brain is a concept I pray none of you ever have to deal with. I had no choice but to continue to trust they would now fix their mistake, we worked through the paperwork and details and the arrangements were made. It wasn’t the money that made me mad, it was the fact that nobody was accepting the responsibility for what had happened to me while in their care.
A PICC line was installed in my right arm. This is a catheter like tube that was threaded through my body to within millimeters of my heart. I was connected to a portable pump that worked on a timer to discharge Ceftriaxone for a period of 1 hour two times per day through this line into my heart to pump it out to all the tissue in my body. Ceftriaxone is an antibiotic designed to destroy positive and negative bacteria, it has the ability to move through the blood brain barrier and absorb into the tissue where the infection was located in my head. The normal side affects were explained to me by the prescribing Infectious Disease Doctor and I was discharged from the hospital with an appointment to return to the Infectious Disease clinic in 4 weeks. I asked this Doctor directly how they would know if the drug was taking care of the infection and if they would be testing my blood. I was informed that he would look at the follow up CT scan that my Neurologist was arranging for 6-8 weeks out and that bloodwork was NOT necessary. This was another critical point in my care. I left the hospital uncertain as to how they were going to assess if the antibiotics were treating the infection, I didn’t even think to question if they would be monitoring me for a reaction to the antibiotics. I was just sent home. We bought a weeks worth of meds at a time to put in the fridge for safety, trained how to change out the bag daily and arrangements made for the Home Care Nurse to visit two times per week to change the dressings and care for the PICC line. That was it – I was happy to be headed home and feeling like I was finally starting to put this all behind me.
The next four weeks weren’t great, on top of recovering from surgery, having a sore and swollen head and my skull feeling mushy every time I moved my jaw the antibiotics were causing diarrhea, upset stomach and in between almost hourly naps I felt like I was in a fog.
I arrived early, I always do, for my 9:00 am Friday appointment at the Infectious Disease Clinic. As I am puzzled why they would bring me in for a 9:00 am appointment only to have me sit in the waiting area for 3 hours I observe all of the people coming and going. Several people carrying the fanny pac and pump, the same as the one that has been strapped to me for the last month that I have grown to hate. Some people looking very sick while others appear to be fine. Having arrived at this clinic though, I realized they all had something serious going on inside their bodies, I wondered what their stories were.
It isn’t until after the noon hour that I am escorted into a room inside the clinic. The nurse takes my vitals, comments on my high heart rate and I tell her that I’m probably just nervous. I wait another two hours to see a Doctor… I had really developed my patience through this entire ordeal, especially as it pertained to the hospital and their lack of inter departmental communication. That said, my wife, was having a meltdown that we had been sitting there all day and essentially nothing had been done yet.
Finally, mid afternoon, a Resident Doctor shows up. I appreciate the training that is required to become a Doctor, I honestly do but at this point in my care I had experienced a Neuro Surgery Resident ineffectively wiggling a straw inside my head, another one botching the stitches on my head and getting blood all over my face, back and freaking my sister in law out as I am fleeing a blood soaked hospital bed in search of the shower just as she is arriving to visit. I was tired, I just wanted the real Doctor to figure out what they were going to do with this line sticking out of my arm.
I outline my symptoms, tired and still having a nap multiple times per day, diarrhea, my wife says my heart rate seems high… Wait another hour for the Doctor in charge, he says OK we are going to check your bloodwork, we are going to do an EKG and then we will keep you on the meds until we see your CT results next week. I agree, somewhat disappointed that I have waited around all day to learn basically nothing but that is what I have come to understand about dealing with illness, health issues and hospitals. There is a lot of waiting, there always seems to be more questions than answers, the delays and the not knowing can take the wind out of your sails over and over and squash your hope very quickly.
The EKG nurse says my heart rate does appear high but doesn’t see anything wrong. They draw blood and I am released with an appointment booked for the following Friday. We walk over to the pharmacy where we had been doing doing drug deals every Friday, drop another $100 and make the 45 minute drive home. I am exhausted, I go for a nap. At some point I hear the phone ring and my wife talking, the conversation ends, she comes into the room, her face can’t lie, there is something wrong. The clinic had just got my bloodwork back, my white blood cell count was dangerously low.
I arrive back at the clinic Saturday morning at 8:30 am. Understanding that I am vulnerable to any kind of bug and that I now have to visit the Infectious Disease Clinic where they treat the life threatening types of infections, I decide to wear a mask. This time, I am urgently escorted in. I meet a different Doctor who immediately gets on my good side when he tells me someone screwed up and they should have been testing my blood weekly. He conducts a very thorough review of my history and explains the blood work to us. That is when it really hit me, even at the level of Doctor, there are people that take their jobs seriously working right along others who don’t in every walk of life. This guy meant business though and he was going to get to the bottom of it.
I am immediately taken off the antibiotics, (that we had just spent another non refundable $100 on the night before) the PICC line is removed from my body and I feel a few moments of freedom as I lose the fanny pack, pump and tubing that has been strapped to my body 24 hours a day for the last month. I have drug induced Neutropenia, my Neutrophil count is 0.3 compared to 3.8 four weeks ago, just prior to surgery and 4.0- 7.0 in a regular healthy immune system. Ironically, Neutrophils are the white blood cells that fight off infection. While treating me for infection, they managed to kill my bodies natural ability to defend itself. Severe Neutropenia is anything below 0.5, at these levels bacteria that occurs normally in your mouth and digestive tract can cause serious infection.
I am given a shot of Neupogen to jump start Neutrophil production in my bone marrow and begin a daily ritual of getting driven to the clinic (I still can’t drive due to recent brain surgery) to have my blood tested every morning, followed by home quarantine. I seriously couldn’t make this stuff up if I tried, first they don’t want to see me and then I need to be there every day to make sure my counts don’t go lower, the brain surgery is almost forgotten, one problem leads to the next.
If you Google Neupogen, you see words like Chemotherapy, Leukemia, Bone Marrow transplants, stem cells…
The next day my Neutrophil count is 0.2 – What could possibly happen next ?
Then it starts rebounding, the day following is 1.7, then 3.2 then 4.5, by the end of the week after starting myself on ProBiotics, and drinking a case of Monavie I am over 6. The week after that despite a racing heart rate, the Infectious Disease Clinic signs off and I am sent back to my family Doctor to sort out the heart rate problem.
If you are still reading, it is a long story, that brings us to present day. As I have received my final CT scan revealing all is good inside my head and clearance from my Neuro Surgeon, I am still facing the fact that now there is something not quite right with my heart. Neurology referred me back to the Infectious Disease Clinic to investigate my continuing heart rate issue, they have refused to see me despite her request and one from my family Doctor. Once again, it is left up to my family Doctor to start sorting out a problem that sure seems related to everything else that has happened to me. Specifically the the bad reaction to the medication…
Last week I was fitted for a Holter Monitor for a day to record the activity of my heart, I have already gone for an Echo Cardiogram which came back clear and tomorrow I visit a Cardiologist for the first time to review the results from the monitor and talk about what needs to happen next.
All told, this story has now been going on for almost 11 months. An entire year of my life has been taken and although the original cause of the Sub Dura Hematoma still remains a mystery, I have been the anomaly statistic in almost every test and procedure that I have been a part of. In my humble opinion, there have been numerous and severe mistakes, errors and outright malpractice that have occurred at my expense, delaying and prolonging my recovery.
I am grateful for all of the amazing people that have had my back and continue to be there for us and my parting words are to make sure you have your relationship plans in place and for Heaven’s sake Do Something With Life Before Life Does Something With You.
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