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Aneurysm Survivor 09/09/2008
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By Rick O'Kelley
October 16, 2008
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I post this to aid healthcare providers, Aneurysms Survivors, and family members and friends of Aneurysm Survivors in their understanding of what I experienced and what my family and friends reported in hopes it may help someone else. Rick
Almost one month before my Aneurysm I had warnings but I did not know what these warnings ment. In late July and early August I experienced double vision and blurred vision and had actually planned to go see my doctor but these did not last long and once they cleared up I forgot about them. I also had a mini event where I had a sudden onset headache that felt like brain freeze and it was so bad that I had to set down but this event lasted only five or ten seconds and once it was over I felt weak but okay and that too was soon forgotten.
September 9, 2008 while working at a client’s office I suffered a anterior communicating artery aneurysm. I was configuring an email account on an iPhone when suddenly and without warning a great wave of pain began just below my ears on the back of my head then almost immediately washed over the top of my head to below my chin. My ears became stopped up and I felt hot. Like a fool, I told my client that I needed to go to my car and I left the office without making her aware I was having a medical emergency. I thought if I could just cool down a bit using my air conditioner all would be well. I walked down one flight of stairs, out the front door and across the street where my car set in a public parking lot. I started my car and turned the air on high and lay back feeling the worst pain, the worst headache of my life. After just a few seconds it occurred to me how stupid I was acting. I pay thousands each year for health insurance and I was trying to self medicate myself with air conditioning. I pulled my phone from my pocket and called 911.
Don’t permit someone to tell you they can find you by your cell phone. 911 was not able to locate me and while I knew where I was, only a few blocks northwest of the town square in Fayetteville Arkansas, I was unable to give direction to my location. I could speak and I could think but I couldn’t seem to connect the two actions so I asked the 911 operator to give me a second to clear my mind then I laid back and tried to clear my head so I could think. I honked my car horn and waved to try to get passer bys to come to my aid. They just waived back and went on. My car was parked in a metered public parking lot and I could have just given the operator my meter number but at the time, my thinking wasn’t clear. As I tried to think I heard two young men talking just outside my car and as I looked I could see they were going to walk by my car window. I reached out and grabbed one of them as they walked by and asked for help thrusting my cell phone still connected to 911 into his hands. All total my phone recorded I was on the phone with 911 for 4 minutes and 54 seconds and I placed the call at 2:15 PM. Soon the Fayetteville Fire Department and Central EMS were at my side providing me much needed aid and then quickly transporting me to Washington Regional Medical Systems where within the hour a CAT scan was done. By 3:50 PM, Dr. Holden, the ER Doctor, informed me that the Cat scan revealed that I had bleeding on the brain and that I would be flown to Coxhealth in Springfield Missouri for treatment. Later that evening, I was flown by helicopter to Cox in Springfield Missouri and was operated on the morning of September 10th. I had a coiling or rather two coils placed into my single aneurysm because the next size up was too large. Little did I know how lucky I was to be alive as 50% of those who experience what I experienced never live to tell the tale and of the remaining 50% who do survive the initial attack, 25% those often die in the days, weeks, or months following due to the brain damage that occurs. Of the final 25% that do survive, many have mental or physical injury, but I appear to have none. My oldest son who arrived at Cox just after my arrival was told I had a 20% chance of survival and if I survived the night, the operation or coiling would be preformed early on the morning of the 10th.
I was in the ICU at Coxhealth South from September the 9th till the 21st. I have no memory of events between the 9th and the 19th. The last memory I had on the 9th was of Dr Holden at WRMS in Fayetteville telling me I was going to flown to Springfield MO. My wife had yet to make it to the ER and I have a record of an email I sent her from my phone at 3:52Pm stating, “bleeding on the brain, might have to go to Springfield”. I recall Dr. Holden telling me that he was going to give me morphine for pain. I have seen probably ever WWII movie made and when he told me he was giving me morphine it brought images of wounded soldiers laying in pain with arms and legs blown off receiving morphine and laying back in peace. I thought to myself, soon the pain will stop; then I felt my arms began to ache and it felt like a bag of feed had been laid on my chest. I looked at Dr. Holden and asked, “was that the morphine”? He said yes and I remember telling him joking, “I want a refund, that stuff sucks, it made my arms hurt and it is harder to breath.” Dr Holden smiled at me telling me he was going to give me some additional drug that I can’t now remember the name of, and almost immediate when he gave that drug to me, I had a 30% reduction in pain. I told Dr. Holden, “that is the drug I want, give me more”.
It was sometime after this I remember my wife walking into the ER but I can’t remember that my mother-in-law was with her. It was around this time Dr. Holden told us that they were going to do a second CAT scan but with dye. Somewhere along the way after my wife arrived and before the second Cat scan I lost my ability to remember but what surprises both my wife and I is I continued to interact and speak with everyone around me, I just don’t remember. There was no indicator to my wife when I passed that mark, I don't have any memory and she saw no changed and wasn't aware that I would not remember. My wife said when I came out of my second CAT scan this time with the dye I told her, “don’t every let them do that to you”, but I don’t remember. I don’t remember the flight nurse prepping me for my flight or my puking my guts out before takeoff. My wife reported that I gave her everything I had in my pockets, including my cell phone, watch, and ring but I retained my driver's license and insurance card so I appear to have been thinking clearly. We said our goodbyes and "I Love Yous" but again, I have no memory. She said I asked for something to puke in as they loaded me in the chopper but I have no memory of any of it, no memory of the flight, the arrival at Cox, or my more than a week in ICU although my family witnessed me speak and interact with everyone around me and they thought I was aware, yet I have no memory of those days. Most people can't believe how much the 10 days missing in my life bother me, I have spent my entire life being in control and often taking control, being in a leadershp position, yet for ten days of my life I not only wasn't in control, I have no memory and this has been a hard pill for me to swallow.
On the 19th, a date I somehow do remember, after more than a week in ICU it was like someone turned on the lights, I became aware of where I was and what I had experienced and it was then that my family became aware that I hadn’t been aware which confirmed what they began to suspect due to some of my strange behavior while in ICU, I experienced ICU Psychosis.
At the time of my hospitalization in Cox ICU, my father was an Alzheimer’s patient and my wife and one of my best friends told me later there were moments while I was in ICU at Cox that I acted more like my father, repeating the same story five or six times in a row and becoming angry over little meaningless things. My family and friends had no understanding that the person they were seeing wasn’t me and my wife later reported that she was afraid that the Aneurysm had damaged my brain so badly that this was the person she was going to receive when I was released. She said she recalled telling one of the nurses after a difficult day with me that they were going to have to fix this, referring to me, that I was the devil and she wasn't taking that home with her. Lucky for both of us the Psychosis was temporary.
I first learned of my strange behavior on the 19th when I awoke to reality. My wife reported that while in Psychosis I was fixed on my cell phone. I wasn't permitted to have it and I became so angry that they had to sedate me. I also had delusions, I believed that I had been kidnapped and was being held against my will and at times believed my family was plotting with the nurses against me. ICU Psychosis wasn’t something my family was warned about or prepared for and it unnerves me that I can interact with people for ten days and not remember those interactions. My son's are very Internet aware and Cox provides an excellent wireless network and it was their independent research on the Internet while I was in ICU that caused my family to conclusion that I was in Psychosis. I suppose the healthcare providers have no method to know when one is in Psychosis, but my family knew something was wrong and their greatest fear was my bizarre behavior was the result of brain damage and this was the way I was going to be. During that time I had no modesty, someone visiting could say something that would trigger me to pull off the covers and pull back my gown to show my catheter. I had a vasectomy in my primary care physician office ten years before and somehow I had connected my current hospitalization and my ten year old vasectomy as the cause of my current stay in ICU. I would tell doctors and nurses that I had been to Cox previously and my current stay was related to my vasectomy although it was untrue. My behavior was so unlike me and because I continued to insist that they contact my primary physician my wife contacted my primary physician and asked him what to do. He suggested to her that she write everything. That if it is in writing I would accept it so she began to take notes. These notes help both of us later when I had left the hospital to have a better understanding of what we both experienced.
I don't know how many other things I did during my Psychosis because my wife wasn't able to record everything but my wife said that she saw the change when I began to come out of Psychosis, I stopped pulling up my gown and I asked her for a pair of boxers. I settled down and began to make more sense. It was about 24 hours after that that I became aware of where I was and why I was there but my adventure was not over, not just yet.
The drain tube in my head was removed on the 20th and on the 21st I was moved out of ICU and upstairs into the hospital. Cox has only rooms that contained two patients and I was moved into a room already occupied with one patient, a man named Tom, who was recovering from an Aneurysm operation. We were well matched, both of us about the same age, I am retired law enforcement and Tom worked in a detention center and we were both in recovery mode so when it became dark outside we would go to sleep and the nurses would come in during the night to check our vitals and my rest wasn't disturbed. Tom was released on the 22nd and that night I had the room to myself and I got some very good sleep. All that was about to change and what followed was my only negative experience at Cox South.
On the 23rd Paul was moved into my room. I felt right at home with Paul and his family as I learned that our paths had cross some 30 years earlier. Paul had a back operation and was in my opinion in terrible shape. On the night of the 23rd he vomited most of the night and because he had pneumonia the nurses would come in all hours of the night and perform a breathing treatment on him. They would come in at 1AM, flip the lights on over Paul's bed and do the treatment often talking in full voice. Due to this and all the vomiting, I got about 4 hours sleep on the night of the 23rd and this process was repeated on the night of the 24th. The breathing treatment was so disruptive that I would just get up and go across the a hall to the library and read about my Aneurysm. I had been told that I too had battled pneumonia while in ICU and I had some concerns that I may become re infected. Having beat the odds, I saw no reason to risk more so I really did want badly to go home. I am one of those who have to have 8 hours sleep and in my condition, after two nights of very little sleep, concerns that I may be exposed to possible infections that could further risk my life, my progress was in my opinion was beginning to reverse. It wasn't as if my my doctor had no concerns, he had authorized a sleep aid on the night of the 24th, and I was given Ambien but that would only put me to sleep, it didn't help when they would come in and light up the room causing me to awake and not be able to return to sleep. My inability to be able to sleep seem to puzzle the nursing staff and my doctors. This didn't surprise those who knew me as I am a life long country boy, heck we don't even have a yard light, we live off the road so we don't have cars driving by so and when my wife and I go to bed, rarely are we disturbed until morning but being in Cox with a sick roommate was like being at Wal-mart at 2AM. Nurses were coming in an out all night and it wasn't Paul's fault, he was like me, just trying to get well.
Finally on the 25th I had enough. Ashlyn, my day nurse came in and made the comment that I looked terrible and wanted to know if I was okay. I told her I was suffering from a lack of sleep. I needed to go home. Since the 22nd, I had been showering independently by myself, I was walking unassisted, the catheter was out, and even my nurses were puzzled as to why I hadn't been released to go home. All they could do is relay my desires to my doctor. On the morning of the 25th when my wife came in, I asked her to make sure my doctor came by to see me that morning so I could express my needs directly to him. She did and when Dr. Workman came just before noon, I made him aware that my current situation wasn't contributing positively to my recovery and I put it to him directly, "either release me so I can go home, or find me a cool dark room where I can have eight hours of undisturbed sleep". To my surprise I learned that Cox South didn't have such a place so Dr. Workman, I believe reluctantly, released me and that truly began my first real day of recovery. The nurses at Cox were great, they tried many things to aid me. Ashlyn my main day time nurse, gave me peanut butter she bought for her personal use because I wanted a peanut butter sandwich. John bought me a yogurt and who knows how many others did things I know nothing about. I can't say enough good things about the men and women who cared for me at Cox but in the end the one thing I needed was what they didn't have and couldn't provide and sadly this brought images to me of a long ago time that I still remembered when at night in the hospital sleep was considered the greatest cure-all and nurses wore the shoes that allowed them to walk quietly around the hospital which had its room and hall lights dimmed, and nurses carried flashlights and talked in low voices so the patients could sleep. It appears those are all things of the past, if one wants to sleep in a hospital they must depend on drugs which is not something I preferred to do. I was going home and for me, tears of joy flowed down my cheeks as I mounted a wheel chair and was wheeled out to the car. I remember telling my wife as we pulled away, "don't look back" as I feared it would all be a big mistake and someone would come running out to take me back in.
While in Cox South I was asked by a member of the hospital staff how I came to be transported to Cox, I was told they don't get many referals from WRMS in Fayetteville. I came to be at Cox South because my daughter-in-law, Brandi, once worked for Dr. Regan Gallaher and thus my wife requested Dr. Holden at WRMS consult with Dr Gallaher and they made the decision for me to be transported to Cox, a decision that I believe may have saved my life but certainly impacted my life in a very positive way. The parts of my stay at Cox that I do remember and will remember for the rest of my life was how well the nurses cared for me. I wanted for nothing, they treated me more like a favorite uncle than a patient. They made special milk shakes for my meals to get me to eat more as I lost 30 lbs in a little over a week. While in ICU they allowed my family to bring in food from the outside to encourage me to eat. My older brother who came and stayed several times with me when I was in ICU summed it up the best. He told me that he had never experienced a hospital where so many were so completely dedicated to the healing of its patients and the needs of the family. The people at Cox cared not just for me but went out of their way to explain to and calm the fears of my family while seeking the best for my survival and healing. My brother would know, he has spent countless days and nights at many hospitals setting with the sick and injured. I left Cox not just with a positive expectation for my life, but with a renewed hope in goodness of my fellow man.
I am a 56 year old over weight male who has never spent a single day in the hospital. I take no prescription drugs and can count the number of times I have seen a doctor during my adult life on my two hands. For me to call 911 is a testament to how desperate I had become but to actually go and stay in a hospital amazed everyone that knew me. I came to Cox with low expectations and left with great admiration of those who have dedicated their life to heal others. I was expected to remain in ICU for two weeks and then in the hospital for another two weeks but I believe because of the excellent doctors and nursing care I received at Cox, I was released on September 25th, our 36th Wedding Anniversary, to go home. I probably could have been released on the 23rd but to be sure, my doctors waited an extra 48 hours to see how I would react when removed from some of the drugs I had been taking. Now at home I feel great and every day since I get stronger. I have experienced no physical or mental disabilities as a result of my event and I left the hospital with only one two week prescription and for an over weight man my age, I think that is remarkable.
My arrival at home did bring some unexpected events. The first night home, I wanted a lot of light which isn’t normal for me. While I lay in bed, I had the hall, bathroom, and a small bedroom lamp on. This passed after a few days but now three weeks after being released I still have what I believe is an unnatural fear of my head being injured. We have a large Hickory tree in the front yard and the nuts are falling and I take care not be in the strike zone unless I have on a bike helmet or have some other protective cover on to avoid having a nut fall on my head. I suspect this too will pass.
My first week at home I was weak, and I would sleep 9 to 10 hours then take day time naps. I am not a day time napping kind of person so this was a new reality for me. I have read that when the brain is injured it will force one to sleep more so it can put energy into healing. My primary care physician told me that my brain was still swollen and it could take six months and even longer for my brain to return to some kind of normal. My wife and I looked at each other. If I had been told this before I didn't remember it and after we got in the car I asked my wife if she had been told this and she also confirmed this was the first she had been made aware. I do remember Dr. Workman telling us on the day of my discharge that he expected me to be back to normally and healed within six months but I now began to wonder if what he was telling me was different from what my primary care doctor was telling me. Maybe Dr. Workman was speaking only to the physical healing of my aneurysm and was not speaking about the long healing process due to brain injury as the result of the aneurysm. The napping passed beginning about the middle of week two. Now three weeks out of the hospital I have a lot of my leg strength back, I no longer feel the need to nap in the day, and I sleep about 9 hours each night, very soundly which is more normal for me. For the most part I am normal but I do find sometimes when I walk to the mailbox which is about 200 feet away, I will forget why I am there for just a few seconds. I also forget to sometimes shut doors or lock locks and I have to go back and check myself often. I have a small area on the top of my head that is numb to the touch and the temp in my right ear is 95. My doctor thinks a nerve was damaged that controls the temp in that ear and he said it may or may not return to normal but wasn't anything to worry about. I gained back about 5 lbs of my 30 lbs weight loss and I am going to try to maintain that loss but I don't recommend my weight loss program. There are far better ways of loosing 25 lbs than laying in a hospital ICU for 10 days.
Probably the hardest part of this recovery is not being able to depend upon my mind. How can I know what I think or what I think I remember is correct? I can't recall what I experienced from late afternoon on the 9th till the19th so how do I know I will not have future gaps in my memory? I don't know so I depend on my friends and family to make me aware if they see me acting in ways that are not normal for me. I am lucky to have them and they have been critical not just when I was in the hospital but now in recovery which is another new reality for me. I am a type A personality, I am the one who leads the charge, gives the orders, makes the decisions and now I must depending upon others to aid me in making decisions. It is a new reality that I am adjusting to. My wife has always been important to me but now she has become my right arm, she ran our business while trying to visit me and provide support to me 145 miles away which I was in the hospital and she now is my anchor during recovery. I don't know how anyone can get through such that I have experienced without the aid of a devoted spouse.
I would like to single out some of those who cared for me at WRMS and Cox for their excellences but how can I? Each and every one of the doctors and nurses that I came in contact with excelled. It was like being cared for by ones family. Being at Cox was the next best thing to being at home. I have nothing but praise for the Fayetteville Fire Dept, Central EMS, Washington Regional Medical Systems, Dr. Holden the WRMS ER Doctor, Dr. Regan Gallaher who referred me to Cox Health in Springfield MO, the flight crew who flew me to Cox, Dr. Workman who did the coiling at Cox, and all the nurses who care for me in ICU and in the both Hospital. All the professionals came to my aid, for me the system worked and I have no complaints. I am lucky to be alive and thanks to all those who came to my aid, I am.
So why have I posted my experience? I want to let others know if you experience the worst headache of your life, get help. If I had delayed or waited I may not be alive and well today.
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