Yesterday was a sad, horrible anniversary. The day Kim passed from a sudden ruptured brain aneurysm in 2008. It was a horrible, horrible, day just a few days after we had spent Christmas with her. One I’d love to forget and wipe from my memory. Unfortunately, just as thousands of other families deal with, it’s a memory I cannot forget.
The police tape, the medical vehicles, the tragic cries of a mother losing her only child…it’s a day no one should have to live through and one that haunts me on this “anniversary”. Yes, it’s a day I’d love to forget.
From the sadness and horror of that day, Kim’s family and friends have had to deal with the difficult task of moving on without her in their lives, just as thousands of other families do each year. We aren’t special in that respect, but Kim sure was. I prefer to remember her smile, her laugh, and her kindness. Not the horrific scenes of that day four years ago.
I know Kim wouldn’t want us to dwell on that day either and to move forward and create something positive out of a horrible event so that her friends and family can heal and provide the kind of help and kindness to others that Kim was so famous for.
Unfortunately, my family has been touched by brain aneurysms. I have two older first cousins who are survivors. I, myself, have survived a rupture and we’re monitoring another smaller aneurysm and possible issues with the 11 mm aneurysm that originally ruptured. Then, only 7 months ago, I lost my sister Dori to a massive rupture. Yes, they CAN be hereditary, but that isn’t always the case. It’s just horribly ironic that Kim (not a blood relative of mine) was also taken in such a fashion. I’ll never forget getting that news of the cause of death. Survivor’s guilt doesn’t even begin to describe it for me. Again…a day I’d love to forget.
After my ruptured brain aneurysm, no events, or groups to help support me were available in the state of Maine. My only solace and assistance came from online message boards where I have met some amazing people who have survived much worse than me but share many of the same issues I did and still do. I found great comfort in my online community. My friends didn’t rally around me at my bedside or offer to start a walk or group to support others. There was nothing…other than my saint of a husband. Most people don’t realize the burden his shoulders have carried since 2006. I’m a very lucky woman.
It wasn’t until we lost Kim to the same ailment that almost took my life, that a decision was made here in Maine to DO something about making people aware of what a brain aneurysm is, what it can do to you, how it can be treated, and how, as a community, we can help other families in the same kind of need I was in in 2006 and beyond.
Sadly, my sister Dori was very knowledgable about brain aneurysms and she traveled to Maine on several occasions to be with me and Dave during my procedures. How tragic it is then, that we weren’t even able to save her life. BUT, she knew there was a community in Maine that was trying to DO something to help survivors and families deal with such trauma. She dealt with that trauma herself and I KNOW the information and support we provided others was also of comfort to her and my family.
In 2009, Kim’s close friends and family organized the KAT-Walk for brain aneurysm awareness and to honor Kim’s sweet memory. As Kim did, it’s a way to give back and to support those effected by brain aneurysms. She was the first one looking up what a brain aneurysm was on the computer after I had my rupture and she was the first one to meet me in ICU when I arrived by ambulance that morning. I had very few visitors in the hospital or at home after my surgery, but Kim was one of those and she had the opportunity to meet Dori during that time as well.
I think Kim would be proud of the efforts her family and friends have made in the state of Maine to bring awareness and support to brain aneurysms. The number of families we continue to touch, not only in Maine, but throughout New England, is truly amazing and quite sad as well. There are tremendous survivor stories and tragic losses, but each year we’re becoming a loving and supporting community that gains strength from one another and finds a way to comfort those in need. I think that’s what Kim was all about – and God knows I needed the community this past September. I walked alone that day, but knew both Kim and Dori were beside me.
So, remembering the anniversary of Kim’s death isn’t something I enjoy doing. I’d rather forget that day and remember the date of her birth in March instead…because that’s when an angel was sent to touch the lives of all those around her, even if it was just for a short time. And she’s still touching lives in a very positive way.
Difficult Post
Over the years since my ruptured brain aneurysm, it has been very easy for me to simply copy & paste links to other people’s aneurysm stories of hope, struggle and survival. However, this particular entry is one of the most difficult I have posted because it affects me and my family personally.
Two weeks ago, on Mother’s Day, my older sister Dori suffered a serious ruptured brain aneurysm. Damage was done to her brain stem and a secondary part of the rupture created another hemorhage deeper into her brain tissue. If her husband had not been home and close to where she collapsed, she may not have even made it to the hospital. But after a trip to a local hospital, then a helicopter flight to Buffalo General, she is hanging on, but barely. She’s been treated by some of the top Dr.’s in the country including Dr. Snyder and Dr. Sorkin.
They coiled the 6 mm aneurysm with 3 coils, but because the secondary hemorrhage created more blood, a clot had also formed and they had to remove part of her skull to remove the clot from her brain. She has been in a coma since the surgery, non-responsive, on a breathing ventilator and still suffering vasospams and seizures. The heavy sedation she has been under due to the seizures, has prevented them from getting a complete and thorough neurological exam to determine the amount of damage and her chances of any kind of a recovery.
It has been heartbreaking and frustrating. And at times I almost wish I were not as well versed in aneurysm issues as I am because I know the seriousness of the situation as a result. Injury to the brain stem is so severe because it is similar to the motherboard of a computer being disrupted or destroyed. The brain stem, controls consciousness, respiratory (breathing), heart rate, ocular (eye) movement, dilation and contracture of the pupils in response to light/darkness, swallowing and facial movement and all neurological signaling from the brain to various muscle groups. The brain stem literally controls all that we do and how we process the things that we do each day. Right now, Dori isn’t doing most of these things on her own.
She has also developed pneumonia and has been dealing with a fever although we’re hoping that has gone away now. How much can one person be dumped on? Lighten up God, would you?
Dori was with me from day one of my rupture in 2006. She immediately flew out to Maine to be with me and Dave during my surgery. As I have stated repeatedly, I’m one of those very lucky ones who survived her rupture with no further deficits. Dori was there after my surgery as I was wheeled out of the recovery room to ICU and was complaining about how thirsty I was and the tape residue on my mouth from the breathing tube. She comforted Dave through it all. They cried together and they laughed together when I started joking straight out of surgery.
She also flew into Maine to be with me last year when I had my recoiling of my larger aneurysm done. I now have 20 coils in that one aneurysm and another smaller aneurysm was discovered along the way that we’re watching. Dori was able to meet my new doctor, Dr. Ecker, who ironically trained at Buffalo General and most of the Dr’s and a lot of nurses we spoke to there remembered him.
I wasn’t able to greet Dori and be there for her when she went into surgery. Unfortunately, at the time, Dave and I were in England. My family struggled with telling me, but finally decided they had to. We cut our trip a week short and flew home from England as soon as we could and joined my family at Dori’s beside. Truly devastating to see her in the condition I was presented with. Her long, thick hair was gone, shaved to do the clot removal. Her head bandaged and wired, along with a drain. The breathing tube and ventilator doing the work for her. Every type of monitor attached to her that could be. Heartbreaking…..heartbreaking. Why couldn’t she have come through her rupture in the shape I did? Several reasons I believe.#1, God just had other plans I suppose, but #2, I firmly believe Dori was having symptoms of the aneurysm weeks (perhaps even a month) before her rupture. She’s been having back issues since last November and had back surgery scheduled. She was in horrible pain for months and was unable to work. During that time, however, she suffered what she thought was a migraine. My family is susceptible to migraines and both my sisters and I, as well as my mom and some cousins all have suffered them in some form or another. This time, however, Dori knew it was different. Then she had boughts of nausea that went on for a few more weeks. Her husband took her to the ER, then took her to an acute care center. The acute care center was more of a clinic without full medical facilities of an emergency room situation. They were there because they were offered quicker service. Frankly, I’d rather have more completed care, but that was their decision.
Apparently the last time she was taken to the acute care Ccnter, she DID ask to have a CT scan. Either they refused, or they didn’t have the facilities. And even after telling them her sister and cousin had had brain aneurysms….they didn’t even insist she go to an ER. Very, very, very frustrating to find that out because her rupture MAY have been prevented. More heartbreak. And her husband told me after her back surgery she told him she just didn’t feel right. God, she should have been looked at.
I’ve been trying to get both of my sisters to get scanned for aneurysms since my ruptured. They’re both at high risk simply by being smokers and having a 1st degree relative with aneurysms (I now have two) and two 1st cousins who have had aneurysms. If discovered, an aneurysm can be treated before it ruptures preventing rupture, stroke and death. I hate, HATE that it takes something like to this open people’s eyes, but I guess it has. We need to get my other sister scanned, and soon.
I am hoping and praying Dori will show signs of something soon. She has a beautiful 15-year old son and husband who need her and God knows I need her. She’s the caregiver for our family…she helps everyone get through tough times like this….we need her here to help us help her. If God has plans for her, I wish he’d let us know.
Angiogram Check Up
I had my 1-year angiogram (video) check-up yesterday at Maine Medical Center in Portland to see
how the stent, re-coiling, and small aneurysm were doing. I was a little nervous, but more concerned about experiencing pain at the onset of the procedure than anything else. So, I expressed my concern with everyone who would listen. LOL You’re not put completely “under” because they need you to be semi-awake to participate in the procedure when they ask you to hold your breath or hold completely still at certain times.
I was given some minor meds that made me very, very dopey, but I still felt quite a bit of discomfort in the groin when they started to insert the wire (video). I have to believe this particular area of the artery has endured quite a bit over the last 5 1/2 years with multiple angiograms, coiling, stenting and recoiling. There MUST be some scar tissue or something there that makes this part particularly painful. Once that part was over I did not recall too much pain.
Dr. Ecker uses a much smaller catheter which means the puncture hole is so small that an angio-plug or seal is not needed. Unfortunately, that means one poor member of the procedure team is in charge of putting pressure on my groin until it stops bleeding after the angiogram. LOL Thank you Brian! The plug is painful…you were not.
As usual, the staff in the Radiology department at Maine Med were fantastic. From the main reception area to the medical team involved with the pre- and post-procedures, they’re very professional, fun, and attentive. I recalled several names and faces and they even remembered me too, which is kind of sad! LOL That means I’ve been there enough times for them to recall who I am, even with the number of patients they must see on a daily basis.
While I was being wheeled out of the interventional radiology suite, they informed me that Dr. Ecker was already showing Dave the 3D images that had just been taken. Because my glasses were taken away from me before the procedure, I couldn’t see anything or make out any faces, but I heard Dr. Ecker’s voice and Dave’s and as I was being wheeled by they gave me the good news that preliminarily things looked good! So that was fantastic news.
Another off-shoot of using the thinner catheter is that the stay for the patient at the hospital is much shorter as well. Only two-hours in recovery where I had to keep my right leg still and flat and couldn’t raise my head too high in the bed. MUCH better than 4-6 hours afterwards. Two-hours was very doable. I was able to eat a yummy turkey & cheese sandwich, a bowl of fruit and a cookie with Dave’s help. Difficult to eat half laying down without making a mess or choking, but we did it.
So, we left the hospital around 1:30 and were home shortly before 3. After calling my mom, I promptly went to bed and slept for 3 hours. I’m sore and sleepy today, but overall pretty good.
I’ll have my follow-up, in-office appointment with Dr. Ecker a week after next because he’s on vacation next week. I’m hoping that after closer inspection and comparison with last year’s pictures he doesn’t find anything of interest and that we’ll still be cleared for our trip next month. I think, and know, that if Dr. Ecker had seen anything major yesterday he would have informed us of it at that point. He doesn’t mess around and is a straight shooter, which I like.
Good!
Got a very good report at hospital. Dr. said things look good. I’ll still have a follow-up in his office on 4/23 but we’re cleared for the trip so I’m VERY relieved. I am sore and need to take it easy, but other than that, no complaints. What a fantastic staff in the Radiology Dept. at Maine Med. Thanks for the prayers and good wishes.
Heidi's Brain Blog 