Surviving a Ruptured Brain Aneurysm During a Worldwide Pandemic

One patient’s story

By Carole St. Onge APRN, Nurse Practitioner

On March 30, 2020 I blew a brain aneurysm. The world was in the throes of a Pandemic which was claiming the lives of millions of people. The Governor of NH had mandated that all elective Health care procedures were to be suspended until further notice. At the time I was working in a day surgery center as a surgical and recovery room nurse. I was unsure how long I would be laid off from my job. I decided this day to try to get a little exercise. I had just finished walking about two miles on a secluded road in my neighborhood when I started feeling poorly. I was almost home and decided to text my friend that I was not coming over to visit as I had planned. By the time I reached my lawn I was beginning to feel like something was really wrong. I couldn’t put my finger on it until my head felt like a band was squeezing it and the top was exploding. I immediately called my husband and 911, both of whom arrived about 20 minutes later. I live in a very remote section and was responsive but just barely when they got to me.

Over the course of the next 4 weeks I was in the Neuro ICU at Beth Israel hospital in Boston Mass. I was basically comatose during this time and underwent 4 surgeries: Placement of an external ventricular drain to clear the blood from my cranial cavity; a brain coiling which involved snaking a tube up my aorta via my femoral artery into my carotid artery and placing metal coils in the aneurysm; a craniotomy for ventricular-peritoneal shunting of excess fluid from my brain down my neck, through my right breast, and into my abdominal cavity; and placement of a feeding tube into my stomach to provide nourishment. In the best of circumstances, it would be safe to say this was a difficult situation for my family members to swallow. During the Covid 19 Pandemic it was excruciation for my husband, two sons, and many friends and family members as nobody was allowed to enter the hospital during the entire month of April and beyond due to the risk of spreading the Corona virus to compromised patients. There was also a shortage of personal protective equipment including masks, gloves, and gowns limiting visitors to only those patients expected to die imminently. This was not reassuring for my husband who put me in an ambulance, said goodbye, and didn’t know if he would ever see me alive again. My adult sons started googling brain aneurysm and discovered that the statistics were not very good of them every seeing me or hearing my voice again. Each year 30,000 people in the US suffer from a ruptured brain aneurysm, only 50% survive, of those that do survive 66% suffer permanent neurologic disability.

Once I became semiconscious again I was able to say a few sentences on the phone to my husband of 37 years. He had called Beth Israel every day for the last 25 days to get put on hold or told the nurse would call him back with an update just to make sure that I was still stable and to find out if there was any progress. Most of the time there wasn’t any progress. He then had to send out text messages to all of the people that we knew so that he would not get inundated with telephone calls when he was too upset to talk to anyone. He took two weeks off of work because he couldn’t concentrate, and wine became his drink of choice. My two sons who were previously happy productive young men developed anxiety and also began to drink a little too much. I guess they were self-medicating because they couldn’t come see me and didn’t know if they ever would see me alive again.

I spent another 2 weeks in a rehab center where again I was not allowed to have visitors in the medical facility because of the risk of Corona virus spread. The nurses were wonderful and set up a system where my husband, sons, and friends could come to my first floor window and talk to me via telephone. This was very reassuring for my loved ones to see me with my eyes open and talking even though I was very slow, wheelchair bound, with half of my head shaved. I’m sure that I looked pretty bad. Over the next month I had to learn to walk, talk, eat, wash and dress myself. This was only the beginning of a projected 5-year recovery from the type of rupture that I had. It was classified as a 4/4 Hunt Hess brain bleed. Essentially this means that the bleeding was so severe that I had blood on top of my brain, down in the fluid filled spaces in my brain, and down my spinal cord.

At my two month follow up visit I was told by my neurosurgeon who was a fantastic 39-year-old man that I was in the top 95 percentile for recovering. Me being naïve about recovering from such an illness asked him when I could return to my job as a surgical nurse. He said whenever I felt up to it. I was concerned about losing my job, even though I didn’t really need to be because it turns out that performing nursing functions and a brain injury aren’t really compatible. So I pulled myself up by the proverbial boot straps and tried to work 3 months out from a severe life threatening brain injury. It was not good to say the least! I was incontinent of urine and stool, could barely keep my eyes open for the 4 hours that I was supposed to work, forgot to hook up the suction machine and never turned on the cautery before my surgical case. That’s when I knew that I had come back way too soon.

Although I know that I still have 3 ½ years of healing ahead it’s very hard to face that I just can’t do the things that I used to be able to do and that I’m not the same. Everyone I encounter who knows what I’ve been through tell me how wonderful I look and that they are glad that I’m OK. This is encouraging but discouraging at the same time. They don’t know that I cry at the least little thing, that I get anxious over every problem, or that I can’t remember telling my sons the same thing 3 times over the course of a few hours. People still expect me to be able to do everything that I did before with the same efficiency and ease. Believe me nothing could be farther from the truth! It takes me 2 hours sometimes to do the groceries, I burn the pancakes because I’m trying to cook and wash the dishes at the same time, I leave the dryer door open when I run to answer the phone and never go back to finish folding the clothes and close the door. These are only a few of the things that have changed in my life. I no longer look forward to doing the things that I used to, especially if they occur in the evening because all of my energy is usually used up by dinner time. My friends and family have been very supportive but sometimes I feel like they have forgotten what I went through and they think that my life is back to normal. It isn’t.

I am left with short term memory loss, neuro-fatigue, depression, and anxiety. These disabilities are minimal compared to what a good majority of people are left with after surviving a ruptured brain aneurysm. For a nurse practitioner it is extremely life changing to have these problems. I am no longer able to function as a health care provider, because who would want somebody with short term memory loss taking care of them or someone that they love. I would also never feel secure that I was doing the best job possible for my patients. My identity and everything that I have worked towards over the last 40 years has been taken away. I am being forced to try to stay positive and find out what my new life looks like. Fortunately, I am relatively young at almost 60, and have been well educated. I don’t know how an elderly person or someone who is not educated in health care is able to negotiate all of the nuances of having a brain injury. Personally I had to battle my workplaces disability insurance for 6 months and enlist the help of a very wonderful Human Resources team before I was able to qualify for disability benefits. The insurance company asked me to fill out multiple forms more than once and make phone calls several times to get all of my records from Beth Israel Hospital and follow up visits. Once they had everything that they requested they came back to me and said that although I qualified medically they would not pay me benefits because I did not work enough hours over the last year. I was required to work 32 hours on average but only worked 31 hours on average. I explained to them that I work in a day surgery center and if cases are cancelled or all of the work is done early we are required to go home to save the hospital money. My health care facility was paying for all of us to have these disability benefits as we were coded as 36 hour employees. None of this mattered and until we were able to make it look like I worked the 32 hours by spreading out my sick time and vacation time over the last year on the days that I went home early they would not pay me. Fortunately, my husband and I had a savings but this dwindled very fast.

Now I am waiting for social security to decide if I am disabled. I have been waiting for a year. They have made me see a spine specialist for my degenerating spine because “It was on the paperwork”. Today, almost one year after I applied for disability due to my brain injury, I received notification that I am required to see a psychiatrist for a psychiatric evaluation for the depression and anxiety. I have already seen a psychiatrist for this and I’m taking medicine. They have these records but they want more. I ask you what do they not understand about brain injury, 3 brain surgeries, short term memory loss and severe debilitating fatigue rendering me unable to work as a nurse. I wish that I could work again, believe me there is nothing that I would rather than to be myself again. I just can’t do it anymore.

One of the hardest things about the last year and a half has been the lack of support from these insurance companies and from the neurologist that I saw who did my neuro-psychiatric testing. I lost my job at one year because I was unable to return, therefor I lost my health insurance. So not only did I pay the $5,000 deductible on my previous health insurance for my follow up visits, but now I had to pay the $3,000 deductible on my husband’s health insurance. I paid my neurologist $650 to tell me that she would connect me to the brain fit club to help exercise my brain to get some memory back, and a specialist in depression and anxiety after a brain injury, neither of which she did. She then told me that she could not fill out long term disability papers for me because I could work as a nurse two days a week 4 hours a day with supervision or I could be a Walmart greeter. What was she thinking? What hospital is going to hire a nurse for 4 hour days who needs to be supervised continuously!? The lack of follow up after such a severe life threatening, life changing medical illness has been awful. I don’t know where my life is bringing me next. I just hope that I don’t have to sell my house and look for an apartment in this terrible housing market just to be able to pay my bills. Sometimes I am so grateful and happy that the wonderful doctors and nurses saved my life. Other times the struggles make me wonder if it was worth it. I know that it was when I see my husband and sons smile and hug me and tell me how much they love me, but it would have been nice to have closer follow up care and maybe a liaison who was keeping an eye on things and fighting for the healthcare and financial needs that this problem can bring.

Thank you to the skilled caring nurses, my nurse practitioner Deidre Buckley, my surgeon Dr. Moore of Beth Israel and to my wonderful PCP Dr. Tanja Vanderlinde for saving my life and being there for me and my family.