3rd Annual KAT-Walk 4 Brain Aneurysm Awareness

The 3rd annual KAT Walk 4 Brain Aneurysm was held on another picture-perfect, early fall day on Back Cove Boulevard in Portland. Battling heavy off-shore breezes made setting up all of the tents, tables cloths, flags, and banners a challenge, but everyone banded together staking, taping, and securing everything just in time for the walk registration to begin. We will post photos when they’re all available.

With a small committee consisting of family members, some of Kim’s friends, and friends of those who have been touched by aneurysms, to say this walk is a labor of love is an understatement. With no local corporate backing or support, no local professional fundraising support, and no local participation from any medical affiliation, countless hours and money out of our own pockets has been spent to produce an event with great warmth and fondness. As I have said in the past, we may not have the most participants as other larger well-known walks, but what we lack in quantity, we most certainly makeup for with quality and heart.

Each year we have the honor of meeting more and more people who have been touched by this silent killer. For me personally, I have two first cousins who had brain aneurysms, but are survivors. I suffered a ruptured aneurysm in 2006 and had 16 platinum coils inserted into that large aneurysm. Two years later, my husband’s niece, Kimberly, suffered a sudden and massive aneurysm taking her from us at the far-too young age of 32-years old. Four years later that same aneurysm that ruptured for me in 2006 required another procedure and a smaller aneurysm was also discovered that we will monitor on a regular basis.

The KAT-Walk, using Kim’s initials as the name (Kimberly Ann Tudor), was organized to not only honor Kim’s memory, but honor other brain aneurysm victims and their loved ones. This year, our focus has started to lean more towards educating the general public to possible warning signs, symptoms, treatments, and resources.

After my rupture in 2006 the incredible lack of information immediately available to us in the hospital and at my own neurologist’s office was truly shocking. If I hadn’t been able to do online searches for myself while I was still recovering in the neuro-ward, I never would have known other people out there were going through the same thing I was. I was able to educate myself talking to other survivors online. My husband and I came to realize that you can’t expect the medical community to tell you everything unless you ask…and if you don’t know the right questions to ask, how are you supposed to get the helpful information need? Where are we supposed to go? Here in rural Maine, there was nothing.

I did not know that fatigue and depression would be a normal part of my life after my rupture. I did not know that headaches would occur due to dehydration and lack of sleep. I did not know that after my rupture, grocery stores would be an overwhelming experience like no other I had experience before. I did not know that my coils could possibly start to compact and allow blood to flow back into that same aneurysm. I learned all of this either by experiencing it myself, or reading about it online and talking to other survivors on message boards…NOT from the medical community. The two nurses who came to take care of me and check on me after I got home didn’t have tremendous knowledge about brain aneurysms either. They were terrific and a great comfort, but not exactly what I needed at the time.

When I was released from the hospital, they gave me a book on brain injury (not aneurysms) and not much else.

This year we were very moved when another survivor and her family joined the walk committee. By sharing their story with us and their experiences, our wealth of knowledge increased so we could help even more people. They were a tremendous help in setting up the walk venue and she proudly, but gently, made the entire 3 1/2 mile KAT-Walk around the cove and we were all extremely proud of her, especially since she is still having health issues related to her aneurysm.

Raising money and awareness has been our goal. We’ve had marginal success with both the last two years, but a more concerted effort was made to contact the medical community and news outlets for this year’s walk. It’s difficult to gage what kind of effect our efforts made because some people don’t make themselves known to us at the walk. We do not know if all of the hospitals that were sent press packets put out the posters, cards and pamphlets. We do not know if my own neurologist’s office placed posters, cards, and pamphlets out for other aneurysm patients within their offices. We do not know if the OR nurse we made contact with at the Dine 4 Brain Aneurysm event at Friendly’s came with a group of the hospital staff like she said. I’m not sure what else the committee could have done to spread theword and have more people in attendance and bring more attention to the walk and our cause. We do the best we can with the resources available to us. It’s all we can do.

And yet, we keep meeting more and more people each year who have been effected by brain aneurysms so we ARE able to reach and touch people which makes it all worth while. This year was no exception.

I met a young woman who’s father had a rupture and survived but with issues. She came to the walk to simply show her support and expressed her desire to become involved in some way and to thank us for doing something. Another person we reached! Score 1 for us.

Another survivor drove up from MA just for the walk. We met her at the Friendly’s event last month. She survived a ruptured aneurysm and had major brain surgery and is still struggling, but is bound and determine to bring awareness to the general public and the medical community so that others don’t feel alone and lost. She’s a force to be reckoned with and one I’m glad we found! Score 2 for us!

The story that touched us the most and hit home for all of us who knew our Kim, was a group of family and friends that used our walk to share their own story and grief. Another young woman, age 27, was taken far too soon by a ruptured brain aneurysm only two months ago. She was to be married next month. This wound is so very fresh in all of their hearts and we were very moved they wanted to join the walk and participate, especially since it was such a recent event. I hope the walk, and the people they met there, gave them some comfort. I hope they were able to feel a sense of “community” with other family members who have lost loved ones to aneurysms as well. And I also hope we were able to give them a little bit of knowledge to help them understand and cope with their loss. We look forward to getting to know this family more in the future.

No one on the KAT-Walk Committee receives any money for the work we do. It truly IS a labor of love and sharing our knowledge and insight with others is what matters most to us.

Because I was manning the Brain Aneurysm Awareness tent by myself this year, I wasn’t able to participate in the actual walk around the cove. So, this morning, on the 10th anniversary of 9/11, I decided to go for my own memorial walk on the path my husband made for me out in the wooded area next to our house. I thought about the people who lost loved ones on 9/11 and then I remembered our dear Kim and her joyful smile, her infectious laugh and the joy she brought everyone whose life she touched. It was a nice walk. I heard the birds, the trees were moving, the water was flowing by….it was ALIVE. I’m alive despite that damn brain aneurysm and if we were able to help one person during the KAT-Walk yesterday, it’s a good life.

A Friendly’s Event

Okay, our first Dine 4 Brain Aneurysm Awareness event at Friendly’s in South Portland, ME was a success, but not quite in the way we had thought. Yes, we raised money that will go directly to the Brain Aneurysm Foundation to raise money for research and education about brain aneurysms, and yes, we sold our T-shirts for the walk, and yes, we got a little more publicity for the KAT-Walk coming up in September, but it was the unexpected, random meetings with people that made it all worth while.

Although this particular Friendly’s is in a busy area of town, the number of people who didn’t even know about the event and just came by Friendlys for dinner or ice cream and had personal experience in some fashion with aneurysms, was amazing.

In fact, we found out during the course of the night that 3 employees at that particular Friendly’s branch had been effected by aneurysms or had relatives who had them. Some successes, some not.

Then, a woman from MA who was just there having dinner with her daughter came running up to the booth and said she just wanted us to know she had two annie’s clipped and thought we were doing a wonderful thing raising awareness. She went in to eat them came back out and chatted with us. We were all a little surprised she was unaware of the Brain Aneurysm Foundation, which is centered in MA and I don’t think her medical professionals did a very good job on educating her, but she’s still a survivor and it was wonderful to see her and share our stories.

The big “contact” we made was the head nurse of the neuro radiology OR at Maine Med. She knew my Dr. and spoke very highly of him. THEN she agreed to take a lot of literature and info, not only on the walk in Sept., but for aneurysm education in general, into her staff and area. She was more than willing to do it and apparently told Dave she’d try to get some folks together for the walk. We’ll see, but it’s great she was so receptive and open to doing things. That’s precisely what we were hoping to get. Dave has visited several hospitals and was never really sure if the advertising packets he’s been giving people were being used or displayed. All we can do is try at this point.

We sold a lot of t-shirts for the walk in September and took some names of people and had a nice dinner ourselves. The people at Friendly’s were great. They let us do whatever we wanted, so we set the tent up right outside their door and put some things inside at the PIck-Up counter and inside for people to read while they were waiting. We did take a few donations as well. One little girl came up and gave us a dollar. It was quite cute and another young girl just wanted to help and walk and give us her name.

I think we’ve done a good job of getting the word out there and lots of people are TELLING us they’re coming to the Kat-Walk in September, but we’ll see. I hope so. The more we can educate the public, we might be able
to save a life or at least help those who have already been effected by brain aneurysms. From our lips to God’s ear.

The Coiling (Part 2)

I realized Monday evening (two days before the coiling) that I was more nervous about this procedure than I was expecting to be. Not sure why, but I was. Perhaps it was a foreshadowing of the events yet to come and the amount of time I had to wait to get into the darn operating room. Lots of delays and one of my poor sisters Dori, who was flying into Maine to be with me, had two flights delayed and missed seeing me before I went into the OR.

The coiling procedure itself went very well. Dr. Ecker was able to get five more coils into that remnant area on the original aneurysm that had ruptured in 2006. So I now have a total of 20 coils in that one annie. He said the stent that was implanted last month was very secure and he feels the coils will stay secure behind it.

We had planned all along to get some good 3D images of the original aneurysm and the other new smaller one for comparison during future checkups. So after the coiling procedure was completed, he inserted quite a large amount of contrast dye. More than normal I suppose.

As the dye was injected I had an “episode” where my pupils dilated and my blood pressure shot up to 280. I still don’t know what they did to correct the situation….and I’m not sure I want to know just yet, but it was a serious situation because they’re weren’t sure what caused it. I wasn’t aware I have had any issues with the contrast dye in the past and he was concerned I had had another rupture or bleed somewhere. I was immediately taken to get a CT scan for further review and it showed I did not have a bleed, but they were concerned what caused it.

Unfortunately, for my family, the scare it gave the Dr. created a scare with them. He came out to speak to them between the coiling and the CT scan, so he wasn’t sure I was okay just yet. Which scared my sister, sister-in-law and husband a great, great deal. I’m so sorry they had to go through that.

Apparently the Dr. was also concerned about getting me to come out of the anesthesia, but obviously they did. Because of the chaos that occurred at the end of the procedure, he decided to get me right to ICU and that he’d come back later and remove the sheath in my groin then. I was taken to ICU and apparently was quite chatty that first hour when Dori and Dave came in to see me. The only thing I remember is that my throat was killing me because of the breathing tube used during the procedure. I didn’t recall any of these conversations the next morning. LOL

At around 8:00 in the evening, Dr. Ecker stopped by SCU3 to remove the sheath in my groin that’s inserted to allow the micro catheter and coils to be entered smoothly into the artery up to the brain. I was given the option of having him insert the angio seal/plug into the puncture site in the artery (without any anesthesia) and only have to lay flat for 2 hours or having him simply apply pressure for 15 minutes to stop the bleeding, then I’d have to lay flat for 4 hours. Because I’ve had the angio seal/plug inserted once before without any anesthesia and it hurt like hell, I opted to have him apply pressure and have to lay flat for 4 hours….It wasn’t like I had anywhere to go. I was going to be in bed all night anyway. I’m sure he wasn’t happy with that decision, but he relented.

What I was NOT prepared for was how incredibly long that sheath is that he pulled out of the puncture site. 14 to 15″ long. I kid you not!! I said “holy crap” when the nurse showed it to me. We turned on American Idol on TV so that helped pass the 15 minutes. My groin was very sore for quite some time and I have a pretty horrific looking bruise beside the site for some reason.

I stayed in the SCU3 (or Special Care Unit) at Maine Medical Center overnight. I didn’t get any sleep and couldn’t eat much except ice cream and sherbet due to my throat. The nurse even crushed some Tylenol into the sherbet for me. That was brilliant!

We also learned after last month that I have issues with Morphine, so I was going to make sure we didn’t do any morphine this time. Amazingly, I truly didn’t need it. My head pain wasn’t so bad that I needed stronger meds. I had the two Tylenols in the evening and two more in the morning. I didn’t feel good, but thankfully I never got sick to my stomach this time and I truthfully feel it’s the morphine. They marked that I was allergic to it, so hopefully I won’t ever go through that again.

Despite the remarkable care and service in SCU3, I didn’t get any sleep during the night. I’ll just say it was a good 8-hour “rest”. I needed the sleep, but there was too much talking, bells, alarms and bustling in the ICU….as it should be. They do an amazing job. I was hooked up to all sorts of monitors and had the leg massage wraps on to keep the blood circulating in my calves to avoid any clotting. I was hooked up from head to toe so just laying on my back was about all I could do for many, many hours.

I was able to eat breakfast the next morning, so that was huge (compared to last time) and I was sitting up in a chair when Dave and Dori arrived giving them a huge surprise.

Dr. Ecker gave me the clear to go home the next day, but another neurologist wanted to make sure there was no neurological reason for my “episode” so they wanted to run an EEG before they released me. I was very tired, had a headache but was functioning as normally as I could at that point.

The EEG took about 20 minutes and they were able to do it right in my EEG-accessible room in ICU so I didn’t have to go anywhere,which was nice. They hooked up electrodes on my head and upper torso. No pain, just makes horrible mess out of your hair. My baseball hat went on immediately afterwards. Results of the EEG came back very quickly and all looked good. I was free to go as soon as the final papers were signed. That took HOURS for some reason, so I never got out of there until 2:30 or 3 in the afternoon. I had been dressed for several hours prior to that. I did get a good lunch though and I know it’s odd to have people released directly from ICU, but it was still a long, long wait. I was very, very tired and hurting at that point and knew we had another hour drive to get back home.

My sister-in-law Nancy offered her home to us so that I could spend some more time with my sister before she flew back home and we headed north. It was nice to spend some time with her and chat and I was grateful she came in for the surgery, even though she had a hell of a time getting to Maine. Nancy agreed to pick her up at the airport and take her back, so I’m also grateful to her for that.

It all worked out in the end. I was wiped out when I got home and the next day. A good day to lay on the couch and watch the royal wedding. I then decided I should remove the bandage from the groin incision and clean that up to avoid any infection or anything. I discovered a pretty horrific looking bruise there. That was new!

I’ll have a follow-up appointment with Dr. Ecker in June.

Getting Ready for Round 2

As I’m getting ready for the round 2 coiling procedure on my brain aneurysm remnant, I’m reminded after reading a brain aneurysm foundation post, about just how fortunate and blessed I am.

So, get ready, I’m going to count my blessings!

  • My initial rupture of this damn aneurysm didn’t kill me: Blessing #1
  • There was a local Dr. who came back from vacation to insert 16 coils into the aneurysm saving my life: Blessing #2
  • My then boyfriend (now husband) was by my side every day of the 20 days I was in the hospital, even driving back down to the hospital only a couple hours after he left…over an hours drive: Blessing #3
  • My rupture didn’t leave me with any deficits or loss of functions, so I was able to able to return to my job 3 months later: Blessing #4
  • I was able to enjoy four uninterrupted, annie-free years of working, living, gardening and loving life after my rupture: Blessing #5
  • I was married last year to my Maine Man, my angel, and my best friend who has continued to care for me on a daily basis and be so, so understanding and patient: Blessing #6
  • After losing our only Dr. who did coiling in the state, a new Dr. has arrived in the state who does both brain procedures, coiling and clipping: Blessing #7
  • Unfortunately, an issue has developed with my original ruptured aneurysm from 2006 and another smaller aneurysm was newly discovered, but, I KNOW about them and we can monitor and DO something about them before they rupture: Blessing #8
  • I’ll have coiling on Wednesday, by a Dr. who I have a tremendous amount of confidence in. My sister is flying in to be with my husband during the procedure: Blessing #9
  • My family, friends, co-workers and completed strangers who I have befriended on message boards are praying for me: Blessing #10
  • -If all goes well, I’ll be back home on Thursday and recovering nicely….hopefully Blessing #11!!