Category: Milestones

The Next Chapter

Published on by heiditea4 Comments

Yesterday was my 12th cerebral angiogram in 16 years. That’s a lot of images, a lot of stress, many procedures, successes, and even failures. Brain aneurysms don’t care what else is going on your life…they show up whether it’s snowing or not.

It was snow that greeted Dave and I yesterday morning as we were up before the sun rose to hit the road to Portland, a 60 mile drive south. Thankfully, we drove out of the snow about a quarter of the way there as a driving rain greeted us at the door of Maine Medical Center.

When multiple members of the hospital staff remember you from previous visits over the years, that should never be a good thing, but it is what it is in my case. I supposed it’s a comfort to see familiar faces who know my story.

Down in radiology, I was prepped for the procedure, hooked up to an IV, and answered everyone’s questions. Dr. Ecker came in to greet me and indicated he was excited to see how the flow diverter he deployed back in April was doing. Well…yes, I was too! He even opened up the images from the procedure on the computer in the prep area to view them with me and Jack, the PA, who has assisted Dr. Ecker with several of my other angiograms. Again…they know me here.

The procedure itself went very well. No issues and no pain or major discomfort. I was a good girl and didn’t move this time as some lovely classical music accompanied the staff in the endovascular suite.

While still on the table and hooked up to everything, Dr. Ecker said that things looked great, then he said “What Eddie Kwan started 16 years ago, ends today!”. Dr. Eddie Kwan was the doctor who performed the original coiling on my ruptured brain aneurysm in 2006 with 16 coils.

“What Eddie Kwan started 16 years ago, ends today!”

Dr. Robert Ecker

At first, hearing those words brought tremendous relief and joy, then I saw the last 16 years flash before my eyes in a rapid succession of images…the fear when it ruptured, the loss of my husbands niece, the loss of my sister…my second brain aneurysm, the clipping, the recoiling, the stents…all of it in a millisecond of memories and feelings indelibly etched into my heart, brain, and soul.

20 coils, 1 clip, 1 stent, and 1 flow diverter

After that wonderful declaration by the doctor, a few more images were taken to get a good look at everything else then the doctors left and went to speak with Dave in the waiting room. While the rest of the staff were busily performing their post-procedure routines and unhooking things and cleaning me up, the tears started to unexpectedly flow.

My arms were still hooked up to things and down at my side within the arm guards, so one of the nurses touchingly came and dabbed the tears away from my eyes and face with a tissue for me. They were very comforting, in what was quite a personal and emotional moment for me, and I’m very thankful.

Dave was very surprised and concerned to see tears in my eyes when he joined me in the post-op area about an hour and a half from last seeing me. I assured him they were tears of joy, but he also knew why it was emotional for me because he has been with me through it all.

I was glad to learn what I heard from Dr. Ecker in the radiology suite matched up with what he told Dave seeing how I was a little drugged at the time. The flow diverter (pipeline) did it’s job. It adhered nicely inside the old stent and had paused the flow of blood from getting back into the neck of the aneurysm. He said it was “Done” and I wouldn’t need to go back for five years and it would just be the less invasive MRA scan next time.

The images that were taken yesterday will need to be closely looked at again just to make sure there isn’t anything else we should be concerned about, but during the doctor’s first look on the table, things looked good and it was a great report. I’ll have another follow-up in his office in December.

I pray this is a start of a new chapter in my life where I don’t have to worry about this damn aneurysm anymore. The rest is up to me…live life better and take better care of myself. I am lucky to be here at all.

I am so grateful, thankful, and blessed for the improved medical advancements in treating brain aneurysms and the skilled hands of Dr. Ecker and his stellar care over the last 10+ years. He knows what I’ve been through.

Two Fun Side Notes: Stephanie, my nurse in the pre & post care area is a Buffalo Bills fan and shared photos of her dogs dressed in Bills attire. What are the odds that two Bills fan, in Patriots country, run into each other in the hospital? Then I ran into Sara, our former brain aneurysm support group facilitator on our way out of the hospital. It was great to see her face. Again…they know me here. 🙂

Happy Annie-Versary

Published on by heiditea2 Comments

16 years ago today I didn’t know if I’d survive to see another sunset after suffering a rupture brain aneurysm. Tonight I was greeted by this stunning rainbow shard over the water and two cardinals at the feeder. I am blessed. My brain is wicked tired, but I am blessed.

15 Years and Counting

Published on by heiditeaLeave a comment

15 years ago today my first brain aneurysm ruptured. The previous day, I had just finished the initial layout for the entire catalog. What a huge relief to finally know it would all fit after a stressful five months. I still had a great deal of work to do yet on the catalog, but my brain had other ideas on that chilly October morning.

I am still around today for several reasons:

  • My bleed didn’t kill me instantly
  • I listened to my own body and had Dave take me to the ER
  • The quick work of the attending physician at Maine General who immediately sent me in for a CT scan where the blood on my brain was detected
  • The high-speed and safe driving of the EMT ambulance squad who got me to Maine Medical Center in record time
  • The skilled hands and eyes of Dr. Eddie Kwan who performed the endovascular coiling on my 1/2” brain aneurysm the next morning
  • The compassionate, and hard-working nursing staff at Maine Med who attended to me for 21 days
  • The many prayers from my family and friends
  • My Maine man, whose constant care and attention gave me the strength to get up each morning

Dave, my rock, my constant companion for over 20 years. I am so fortunate that I was discovered on AOL by this GOOD MAN in 1998. Not only am I amazed, blessed, and thankful by the care he provided ME while in the hospital and in recovery, but also by the time and attention he pays to other survivors we have met over the years. The world, and MY world, is a better place because of you, Dave. THANK YOU!

Brain aneurysms don’t discriminate and my story isn’t unique. There are thousands of people just like me around the world. Brain aneurysms don’t care how old you are. They don’t care what race, gender, political leanings, or financial situation you are in. A ruptured brain aneurysm can happen to anyone.

Although I started sharing my story on https://heidisbrainblog.com as a way to keep my family and friends updated on my recovery, it became a therapy of sorts to fight my way back, relearn the computer, hand-eye coordination, and connect with others going through the same thing.

It was wonderful to discover I was not alone and others were going through very similar struggles. I’m so thankful to the other survivors I have met over the years. Each of their stories have touched me and given me strength.

I am not a glorious survivor. I haven’t run marathons to prove my incredible physical strength, or started podcasts proclaiming a new-found energy and awareness for life. I haven’t shown the world my face on tons of YouTube videos (okay, I have a couple out there) or written a book, but I am surviving every day….and I think that’s pretty damn good.

15 years…and counting! Happy annie-versary to me.

Perspectives

Published on by heiditeaLeave a comment

Our group held its second brain aneurysm support meeting tonight since the start of the pandemic. Held outside, with proper spacing, and all wearing masks, we enjoyed a stunning, summer evening in Portland.

July brain aneurysm support group meeting

There are regulars who attend the meetings every month and there are those who try to attend when they can. So, we never know who is going to attend each month. Sixteen people attended tonight with two new survivors and a neuro nurse who brought a unique perspective to the group.

At last month’s meeting, our first since February, our group facilitator asked us to find something positive that has happened during the pandemic instead of trying to focus on all the negatives…because there certainly are a lot. It was a wonderful idea and gave us a chance to catch up with one another. I don’t believe the words “brain aneurysm” were even mentioned that evening. We left feeling “good” and grateful for those positives we were able to mention no matter how small they might have been.

Tonight we were asked to share something we have done this summer that has allowed us to get away from the chaos and uncertainty. We also went around the “room” and shared our brain aneurysm stories again. With new people in the group it can put them at ease to hear other’s stories, know they’re not alone, and it allows us a chance to offer advice and comfort if needed.

After 14 of us shared our relationship to brain aneurysms and added our “summer story”, we then met Elizabeth who has been a neuro nurse for over 30 years and who currently works at Maine Medical Center. It was fitting she was the last in the group to share HER story after listening to all of OUR stories.

She was not a brain aneurysm survivor and didn’t have a relative who had a brain aneurysm, but because of the field she is in, Elizabeth has seen the effects that a brain aneurysm can have on patients and their families at their most vulnerable stages: admittance to the hospital and during emergency and elective medical procedures.

What she does NOT see is how those patients fair once they leave her care and guidance in the neuro ward. So, tonight it was an eye-opening and rewarding experience for her to hear from survivors themselves, how they’re coping, how they’re surviving and thriving after their first, second, and sometime’s third experiences with brain aneurysms.

Elizabeth eloquently shared her feelings regarding our group and the survivors who shared their stories and how it gave her a new perspective and insight into healing and recovery. A perspective she never would have got had she not joined us tonight.

It also dawned on all of the survivors that, of course, a nurse who cares for these patients for a brief period during the ugliest parts of the patients experience would wonder how is that patient doing now? How is their family coping with this trauma? Did they regain their memory? Were they able to walk again? One forgets they must see patient after patient and not really get any kind of resolution or closure because THEY aren’t the ones who meet us during our followup appointments at the neurosurgeon’s office.

Elizabeth also shared that they don’t really remember the type of brain aneurysm we had, or its location, but they DO remember the family and the people around the patients and perhaps their initial struggles. She remembers the patient…not the medical condition.

What an eye opening perspective for us all to hear. We thanked HER for sharing that perspective and she thanked US for allowing her to hear our stories about our lives and healing after our initial brain aneurysm experiences. She also realized that the healing and PROGRESS can occur well after one or two years.

Many survivors are told they’ll be healed and back to “normal” in a year or two or that after two years, you got what you got. Many survivors also know this is NOT the case. You may look normal, but your brain can still be struggling with many, many different smaller deficits that, in time, WILL and can get better. But it takes time…lots of time.

I am so glad Elizabeth and the new survivors joined us tonight and shared their stories. It’s a good reminder of how fragile life is and those stories continue to inject new perspectives on SURVIVING and THRIVING with brain aneurysms.

Love & Peace