A few weeks ago Dave and I attended the 35th Annual Atlantic Partners EMS Seminar at the Samoset Resort in Rockport, Maine. This annual event provides education to the most dedicated emergency medical service personnel, hospital staff and firefighters from Maine and New England. There were pre-conference courses, over 100 continuing education classes, and co-sponsored one day conferences from the Maine Ambulance Association, Maine Committee on Trauma, and Maine Cardiovascular Health Council.
We attended the Friday and Saturday sessions participating in the vendor area where we set up a Maine Brain Aneurysm Awareness table/booth. Not only is it a good way to help raise awareness for brain aneurysms, it’s also a wonderful way to connect with local EMS personenel and medical staff to alert them to the possible symptoms and signs that someone may be experiencing a ruptured brain aneurysm. Because of the nature of my own personal story on the morning of my rupture and my sister’s misdiagnosis and subsequent death from a rupture, Dave and I are particularly sensitive to educating EMS crews.
The morning of my rupture in 2006 presented me some classic stroke symptoms. Upon repeating our story throughout the two days, we saw many eyes being rolled, jaws dropped, and stunned expressions when we told them the ambulance crew did not take me to the ER. They basically left it up to us to go to the ER. I’d like to say I believe some of the protocols have changed since then, but at our monthly brain aneurysm support group meetings, we continue to meet some people who have had some of the same issues, or have been misdiagnosed. So, there is still work to do.
In hindsight, it is so very easy to say that I SHOULD have gone to the hospital. And those shocked expressions from the EMS members we met and THEIR insistance that they would have transported me, certainly made us feel good, but the crew that came to our house couldn’t have realized the seriousness at the time…unless they asked some very pointed questions. I need to cut them some slack; they’re only human despite the fact I could have died later that day, or the next day…..
The MaineBA Booth
Dave and I met some terrific people who devote so much of their time to helping others and making sure the health and well-being of the general public is a top priority. Some important connections were also made with individuals who can truly make a difference in the state’s regulations and protocols. There were several invitations from local groups for us to come and speak to them about our story and make them aware of what CAN be a serious issue if it’s not addressed in a timely manner.
One of the classes on Saturday afternoon was held by Dr. Evie Marcolini. Her main focus that day was to discuss difficult neuro cases and brain aneurysms were one of the topics. She stopped at our table a few hours prior to her class and spoke to us. Once Dave and I knew she would be addressing brain aneurysms and expressed a deep interest in our story, we felt it necessary to go the class. We both did a good job of making sure we kept to ourselves. This wasn’t a class for us, but for those people who are on the front lines of very difficult situations and we needed to maintain restraint in putting in our two cents.
Dr. Marcolini’s class was really wonderful as she provided several case studies of patients that would have altered mental states and questioned the class on what they would ask, how they would react, and what they would tell emergency room personel. It truly is that communication between the 911 responders and the patient that can set the ball rolling for precise care and attention later on.
What I took away from the two days was how dedicated those folks are and many are volunteers. I was surprised and pleased with the number of people who thanked US for being there and raising awareness. The number of people who knew someone or had a family member with a brain aneurysm was certainly eye opening. It’s a far more prevalent issue thoughout the country and our state. We even think we were able to convince one woman to get a scan. She had a family history and she could be highly succeptable to developing one and it’s far better to know you have it and treat it, then to have it rupture and potentially die as a result. THAT was one of our big messages: make sure EMT personal and 911 operators know of any family history of brain aneursyms and to let them know if a headache is the “worst of your life” and very different than any you have had previously. That’s assuming you are able to speak.
On our drive home, I realized I was tired of hearing my own story. Dave and I both retold it many, many times over the two days and I compared it to show and tell: I was the “show” (look at me, I survived and here are a few scars to prove it) and Dave was the “tell” (here’s what happened). There are those times when I just need to step away from brain aneurysms and take a break. It’s difficult to do since I live with them on a daily basis, but I was glad I had Sunday to detox and reset. It wore me out.
I hope we made an impression on people and that their next emergency call for someone with a horrible headache will result in them asking if they’ve experienced anything like that before or if there is a family history of brain aneurysms. Those two simple questions could save a life and get someone to the ER in time to prevent devastating brain damage.
Thank YOU to everyone who goes out there to help save lives!
On a fun side note:
The celebrity guest at the conference on Saturday was Randolph Mantooth from the 1970’s show EMERGENCY. He played the lovable Johnny Gage and I grew up with that show, so I got a little girl-silly when I saw him. He’s a huge supporter for the emergency medical community and the money raised from his autograph session was going directly to local funds here in Maine.
I actually got in line twice. First time to get the autograph and a 2nd time because my camera wasn’t working on the first turn through. LOL He was very sweet and still looked darn good for 70 years old and fighting cancer.
A local EMT also bought and redid an old Dodge truck and turned it into an almost exact replica of the Squad 51 truck. I flipped when I saw it Friday night before we left the vendor area. I did a double take and saw it and realize it was THE truck. On Saturday morning, I wanted to take a photo of it and right after I took a photo, the gentleman who worked on the truck, came immediately up to me and held his hand out like he was going to take my camera away from me because I took a photo! Instead, he took my camera, but also grabbed one of the fireman’s hats off the truck and took MY picture with the truck. Pretty neat.
My angiogram to check on my aneurysms has been scheduled for February 18th. Of course, I’ll be nervous the day of the procedure hoping that all goes well and all looks good.
Thankfully the angiograms at Maine Med aren’t the all day events like they used to be. They have improved the tools & procedure and you no longer have to lay completely still and flat for hours and hours afterwards. There still is a significant recovery period, but nothing like it used to be.
However, I’ve had so many angiograms since 2006 that the initial puncture is quite painful due to scar tissue in those exact spots I think. I usually ask for extra meds as a result.
I have to get some labs done next week. Been there…done that!
Friday all day was rough. Sick to stomach most of the night until we were able to get it calmed down with drugs. Finally able to eat something and keep it down early Friday morning, but it was only very bland hospital oatmeal and apples sauce. Not a hell of a lot of nourishment, but it stayed down, so that was an accomplishment.
Not able to eat much that requires a lot of chewing due to sore jaw. That was something I wasn’t expecting – cutting the jaw muscle.
Looks like I went 12 rounds with Mike Tyson and he won.
Face is getting a bit more swollen and left eye is starting to close up. Head pain is coming and going. Taking lots of pills, but having trouble getting comfortable in the hospital bed because I have the automatic compression socks on both legs and their wires and weight make it hard to sleep on side. I can only sleep on one side anyway.
The staff in the 608 ward is fantastic as usual. And boy, they have to be a special breed. Two men needed special care in the ware and all the while the older woman next to me was having serious mental issues and cried most of the night and went on and on about how she couldn’t get her coffee until 7 a.m. when breakfast was ordered. Drove me nuts, but nothing I could do about it.
Dr. Ecker visited this morning and did a short exam and said the swelling was completely normal and that he got some great pics of both aneurysms and got all of the 2nd smaller aneurysm with a great clipping job. Love him.
The catheter was taken out at 6 this morning so I now had to get up and walk myself to the bathroom…with a walker. An occupational therapist visited mid-morning and we attempted to go for a walk with my walker, but we didn’t get too far. I was really shaky and just not up for it, as much as I wanted to. With very little food and more drugs in my system, it wasn’t going to happen. She said she’s stop by on Saturday to see how I was doing, so I had my work cut out for me.
Thankfully lunch was coming up and I was feeling good, so I ordered the backed mac and cheese and OH, that was good and hit the spot. Also a fruit cup. All stayed down and in the afternoon Dave and I took a good walk around the floor. Pooped me out, but felt good to get out and up. Had some pretty good head pain today and that required more pain meds.
I had a great dinner…even by hospital standards. Meatloaf and gravy and steamed broccoli and milk. Tasted soooo good and it all stayed down. Dave and I then did 4 laps around the floor, which was great. I felt good, but tired after that and I wasn’t nearly as wobbly as I was this morning. Things were looking up.
Dave, as usual has been my angel getting me GOOD tea from down in the cafeteria instead of the crappy stuff that comes from the kitchen and even some cookies. He stayed overnight in Portland last night and was there very early this morning. I made him go home early because I was tired and it appeared the night nurse tonight wasn’t particularly in the mood for hangers-on who weren’t patients.
Every two to four hours, I’d get my vital statistics taken and they’d do a neurological testing for my vision and balance. I believe I was doing all of those okay. Just needed to get up more. I was still drinking a lot of water which meant I had to get up and go to the bathroom more frequently, which was a pain because I was still hooked up to a few things, an IV tree and vital statistics monitor.
Thankfully, the IV was stopped in the evening, so one less thing hooked up to me.
Saturday arrived with an actually quiet 608 ward….at least at 1 a.m. The lady next door soon started her crying jags and feeling like people were leaving her there to day and called the head nurse a witch. Although I understand how the mental issues can effect you because I had that in 2006, it was entertaining and annoying this time when I really needed some sleep. It went on for hours.
I did get some sleep…some more pills…some more ice packs for my face, but was feeling stronger. On one of my trips to the bathroom, I sat in the chair looking out at the night lights of the Portland skyline and started working on the blog. Takes awhile to get it all out, but it’s important for me to record it and to let other’s now how the procedure went for me anyway.
Dave went home last night and called in early this morning, but the shift change had just happened and the new nurse hadn’t even had a chance to introduce herself to me yet.
I ordered a little bit more for breakfast, but OH, was it lousy. LOL Egg omelet was like two sheets of egg with some kind of cheese in it and I had one slice of toast, but kind of forgot about my jaw and had a hell of a time eating it. Fruit cup helped…and of course all of the pills.
Thankfully when Dave came he got me some good tea from the cafeteria and a chewy chocolate chip cookie. Ahhhh….
One of the neuro team visited me this morning and ran some neuro tests. Said the swelling in my face and eyes looked “great” and that it’s very normal for them to see. So I guess that’s good. He did indicate I needed to walk more. So as soon as I drank my tea, Dave and I set out for a walk again and did 7 laps. While doing the walking, the neuro dr. was also still on that floor so he was able to see me and how stable I was….even with the walker.
As we were waiting to see if I was going to order lunch, one of the PA’s from Dr. Ecker’s office visited and asked if I wanted to go home today? Well….ummm…yes, please!!! Really??? Yes! It was right around noon and I thought for sure it would take hours to get the discharge papers and everything together, but it probably took less than a half an hour.
They gave me discharge papers and scripts for the drugs I needed. I had the IV ports removed and was ready to go! Changed into my clothes (goody hospital gown!) and realized both of my feet were very swollen. I looked like crap, but my Scotland hat fit nicely over the incision at an angel and loosened up significantly.
It was also snowing significantly! Goody. We said good bye and I was wheeled out into the hallway for “pick up” to go down to the lobby. Dave went to get the car and I got shuttled down to lobby and into the car. We stopped at McDonalds for a big, fat strawberry milkshake that hit the spot perfectly and headed on our way home.
I was extremely tired by the time we got home and my face and head were burning. The nurse at hospital let me bring home my dirty ice bag, so Dave filled that up, I immediately change into my comfy thermal jammies, climbed into bed, called my mom and probably took a nice, long, much-needed four-hour nap!! Felt great. Can’t wait until I can shower on Monday.
Dave cooked me some scrambled eggs for dinner and I took my pills. So glad, and so lucky to be home. Now I just need to take care of myself and listen to my sore, aching face, head, and body. Let the recovery begin!
Heidi's Brain Blog 