Category: Strength

A Friendly’s Event

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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.

Arterial Challenge 2011

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The main reason Dave and I traveled to Massachusetts this Memorial Day weekend was to participate in the
10th Annual Arterial Challenge Run and Walk to benefit research and awareness for brain aneurysms through the Brain Aneurysm Foundation in MA.

For those of you who don’t know, I’m a ruptured brain aneurysm survivor and two years after my rupture, we lost Dave’s niece to a massive rupture. So, we’re very involved with trying to raise awareness so that perhaps some lives can be saved. We also have our own walk in September in memory of Kim and to raise money for research and awareness. In fact, at one point along the walk, before Kim’s name was even mentioned, I felt her hand in mine and felt her right beside me. It was strange and wonderful at the same time.

I was also looking forward to meeting up with a fellow survivor. Julie and I came to know one another because we had the same Dr. perform our life-saving coilings back in 2006 in Maine. She has participated in our walk and we’ll both be “celebrating” our 5 year annie-versaries this year. We befriended one another on a message board, and she also befriended another survivor, Lori, who would be at the walk as well.

We all met up in the registration area. Thankfully, although it was still warm and muggy out, it was a cloudy morning. Perfect weather for a walk and run. We were participating in the walk part of the day. It was a 1.5 mile walk through a lovely area of Humarock, MA along the ocean.

Everyone received their t-shirts for the walk and we started promptly at 9:30. We all chatted throughout the walk and took it at our own pace….pretty slow. LOL Hey, I just had a brain procedure about 4 weeks ago, Julie still has issues and Lori is a damned walking miracle and is about to undertake her 5th (I think!) open brain surgery in a couple of weeks. Slow was just perfect for us.

It was nice to get to know Lori. She’s been through such a tremendous ordeal. Something like 10 titanium clips have been used on her one aneurysm, which is a massive 4cm. (about 1.5″). My 8mm one is barely 1/2 inch. She has endured so much and has such a fantastic attitude and is living life to the fullest! She is unable to perform her job, but her sense of humor has certainly remained fully intact and you have to love that. I won’t be complaining about my black and blue marks or my measly 5 pills I have to take every day anymore after meeting her. She showed us a list of about 15 pills she has to take…TWICE a day.

After the walk, many people who had participate in the walk and run met at local restaurant and chatted about their personal stories and congratulated one another for completing the walk or run. The sun even came out. A very nice gathering and good company.

Julie brought her mom who drove every day from MA to Portland after Julie had her rupture. They’re both very warm and outgoing women with great strength and passion. Lori was traveling from Florida with her very good friend Cindy. What a magnificent wealth of friendship Lori has in Cindy. I envy that. She is truly blessed and rich in that regard. Cindy is a gem. And I had Dave with me. My angel, my chauffeur, my go-to-guy and love. We’re ALL survivors….caretakers included.

According to their Facebook post, the Brain Aneurysm Foundation said this about the walk: “We had almost 600 participants, including 270 runners. Thanks to all the fundraisers and teams who helped The Brain Aneurysm Foundation raise over $50,000 at the Arterial Challenge.”

I’d say that was a HUGE success! I think just having other survivors and caretakers meet with those who have gone through the same thing can bring great comfort and we can continue to spread the word about the signs and symptoms (if you’re lucky enough to have them) to the general public AND health professionals.

And I pray Julie continues to heal and solutions are brought forth to ease her discomfort. I also pray very hard for Lori who will undergo a serious bypass operation in June. She HAS to come through that because she’s going on a Disney cruise to Hawaii next April!

The Coiling (Part 2)

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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

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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!!