Cerebral Angiogram #10

That’s right. I’ve had 10 angiograms. I’m so well-versed on this procedure that the nurse said I could do my own IV Friday morning. I respectfully declined and left the experts to attend to that task.

The procedure was rescheduled for very early in the morning. We had to be at the hospital at 6:30 am, which meant leaving our house at 5 am…which in turn meant the alarm went off at 4 am. I call that the pre-butt-crack of dawn.

As usual the entire staff in radiology at Maine Medical Center is top-notch and I was well taken care of. The only different this time from the last 9 angiograms is that Dave was not allowed in the hospital due to the high numbers of Covid19 STILL active in Maine.

It was very difficult for Dave to not be with me and it was very odd not having him with me. He’s usually a chatty-Kathy with all of the nurses, doctors, and attendants and that creates a good distraction for me. This time it was just me laying there by myself waiting for things to happen. Not awful, just odd. And of course, my thoughts went to those families around the country and around the world who weren’t able to be with their dying relatives and how awful that must have been and continues to be.

My sweet anesthesiologist Ally (not sure about the spelling) was great in listening to me when I expressed my concerns about pain when the catheter is inserted and afterwards if a plug is needed in the incision site. Thankfully, because this was just a diagnostic procedure and there were no implements being entered into my brain, the plug was not needed. And because she administered some pain killer before the catheter was used I never felt it going in and didn’t even realize the actual procedure had started! That’s a first!

I kept waiting for some verbal communication that the catheter was being used and things were getting started, but it never happened. I moved my head slightly, which is a big no-no and the doctor immediately said “Don’t move you head, Heidi!”. It was only then that I realized, “Oh, things have started!”.

The reason for this angiogram was to get a clearer set of images of my first brain aneurysm and determine if the change seen on the MRA from December is dramatic or something small that isn’t a concern right now. He also took some 3D images, which are fascinating to see and can be compared to the series of images taken in 2015.

The contrast dye entering your brain is an odd and uncomfortable feeling. Kind of painful, but not really and it only last a brief time. The 3D imaging is also odd. Not really painful, just a strange sensation and you see little flashing sparkles. At least I think that was the 3D…I may be confusing the dye and the 3D. Hey, I was a little drugged. Both experiences are strange, but thankfully brief.

The good news during the procedure was the declaration from Dr. Ecker that he had a good look around everywhere else and there were no NEW brain aneurysm. Yes, that’s great news! But I was still concerned about the problem child and he quickly indicated that he really wanted to compare the images taken today with those from 2015 before giving us any kind of indication about what’s going on.

My post-op recovery from the angiogram went very well, with no issues. Again, the nursing staff are terrific. One has to lay flat for at least two-hours afterwards to give the incision site time to heal and for the team to make sure there are no issues with blood flow. I don’t recall so much attention being paid to the pulse in my feet before. I know it’s been done before, but it just seemed really extensive this time with two black marks being drawn on each foot, that are still not coming off two days later.

Post-op was strange without Dave there to grab my purse and cut my sandwich…grab water for me, help me balance to put on my socks, etc. The nurses were very helpful as usual and they grabbed my cell phone out of my purse for me so I could send Dave a photo and a text to let him know I was doing okay and when he could meet me outside to go home.

Because I don’t know what’s going on yet, I can’t report much today. The doctor did call Dave afterwards and indicated once he compares images, he may be contacting other doctors he knows around the world to discuss putting a modern stent inside an older stent. It’s not that common, but it has been done and he wants to get their input. I respect that and glad he has some terrific colleagues out there from around the world to draw on their expertise.

Dave also said he told him the artery where my brain aneurysm is, is a challenge due to it’s shape and form. Goody. I know Dr. Ecker has spoken about doing some kind of bi-pass basically shutting down that section of the artery if blood flow can continue to flow normally without it. That would need a BOT or balloon occlusion test….something we were going to do many years ago, but decided not to. It may be needed now. I just don’t know yet.

We got home from the hospital about mid-afternoon and I was exhausted. I lay on the couch resting my leg and fell asleep many times. Also drank a lot of water to get the contrast dye and the happy meds out of my body. I had a slight headache for a day and a half, and the incision site on my groin was a little sore. They must have had to pinch my skin, as a lovely black & blue mark developed well below the site. It’s a little sore, but already feeling better. Still not exerting myself too much and taking it easy for another day. I’m an expert at that.

So, I sit and wait for word. This isn’t anything new for me, and that’s frustrating because this same aneurysm is still being an issue 15 years later. I’m hopeful recent medical technology and procedures can assist in making a more permanent resolution.

In the meantime, I continue to LIVE with brain aneurysms. Stay tuned and thanks for the kind thoughts and prayers I have received on social media.

Lending a Hand

We spent the day yesterday down in the beautiful coastal town of Wells in the southern Maine attending a fundraising event for a Well’s resident who suffered a ruptured brain aneurysm in March.

Due to Covid19, our MBAA group have not attending any of our usual brain conferences, fairs, and support events since March of 2020. So, we were looking forward to pitching our tent once again. And hugging! There was hugging!

About two weeks ago, I saw a news report on TV about fundraising efforts benefiting Bob Hoffman, who along with his wife, and another couple, own and run the Living Wells Farm, a horseback riding and boarding center. Bob suffered a serious brain aneurysm rupture in March and continues to heal with rehabilitation therapy at home.

Once we saw Bob’s story, we wanted to make sure he and his family were being looked after and had all the information and medical assistance they needed during this critical recovery period. The #BobStrong Fundraiser offered the opportunity to introduce ourselves and offer our help in anyway.

A small segment of the #bobstrong team

We contacted Katie from CrossOver Fitness Maine who, along with her husband Andre, were organizing the event for Bob at their fitness center in Wells. Thankfully, there was a quick response which also led to Bob and his wife attending a timely brain aneurysm support group meeting with us over Zoom this past week.

It’s so important for survivors and their caregivers to know they’re not alone during these critical periods of after-care and healing. We were really please when Bob and Amanda showed up on our computer screens for the support group.

Everyone is different. Every aneurysm is different. And everyone responds to a ruptured brain aneurysm differently. Some are receptive to help, others can walk out of the hospital on their own and never look back or look into what may have caused the aneurysm and how it has effected their brain and their families. You can lead a horse to water, but you can’t make him drink. You can lead a survivor/caregiver to a support group, but you can’t make them share their story or be open to receiving assistance and education.

Thankfully, Bob and Amanda were receptive to our group and were engaged and open with us. We were also highly impressed with the path to recovery Bob is currently on and the services he has been offered through some very tenacious efforts by Amanda and their rehabilitation center, Rehab Without Walls.

Yesterday’s fundraiser was a beautiful example of a community coming out to support one of their own and how they have wrapped their arms around this young family in their time of need. We met Bob’s parents and children and some of the good friends helping the family on their brain aneurysm journey. I am reminded, yet again, how the physical brain aneurysm happens to one person, but the entire family suffers the results as they are often confused and scared by all they have seen.

Our group tries to assist survivors and families in understanding the recovery period and what one can expect. We NEVER give them a timeline on when their recovery will be complete. No one can tell you that. But, if you put in the time and educate yourself on how best to help the survivor, it can make that journey easier and perhaps quicker to achieve better results.

Dave and I were joined by two of our committee members, Amy and Linda for the day and we were impressed by the over 200 people who participated throughout the day and brought such a loving and caring attitude. We were asked many questions and met a few people who had also been touched by brain aneurysms in their own families.

Linda, Dave, Heidi, Amy, and new survivor, Bob

Bob is a very fit and strong individual. Both of those traits should benefit him greatly during recovery, but it’s not a quick process. Reading my own blog from my first few months is a quick reminder of how frustrated and depressed I got. Having that strong support group around you is a huge benefit and I think Bob is one very lucky man after what I experienced yesterday.

Spending the day with Linda and Amy also allowed us some catch-up time and the chat was mostly about our experiences with brain aneurysms and our combined efforts in the state to educate people. I have something in common with both of them: Amy is also a survivor and Linda lost two loved ones to brain aneurysms – both of her parents. It’s interesting how easy it is to discuss these difficult topics when you know the person you’re speaking with has also endured similar difficult experiences.

Linda, Dave, and Amy

It felt GOOD to be out there doing GOOD again. It felt GOOD to load up the car, pitch that tent, lend a helping hand where we could, and hug people again.

#bobstrong

Bench Warmers

13 years ago this week, my first brain aneurysm roared into my life with an early morning rupture during the busiest and most stressful time of year for me.

I had heard the term before because my cousin in Philadelphia had her un-ruptured brain aneurysm coiled a few years earlier. But I truly didn’t know what it was, nor how serious it could be when the ER doctor told me I had a brain aneurysm. I just remembered thinking it wasn’t a good thing.

After my coiling the next day and the subsequent 21 day stay in the hospital, I had LOTS of time to think about aneurysms and try to learn more. Even after I left the hospital I was very confused about how they were able to get the coils up into my brain from the right side of my groin when the aneurysm was on the left side of my brain. No one drew me a diagram or showed me a graphic…I just didn’t know. And no one in the medical community shared any of that kind of info with me or my boyfriend (now husband).

In rural Maine at that time, there were no resources available for brain aneurysm survivors. Although I wasn’t able to read very well yet, or type very well, I had my laptop with me in the hospital. “Friends” DVD’s really saved me during that time, but I also discovered an online brain aneurysm support group. It wasn’t associated with any foundation or national organization, but there were survivors from all over the world chatting about brain aneurysms. I FINALLY had some questions answered from people who were going through the same things. It was a revelation.

It was there that I met Julie from New Hampshire. She was still recovering from her own rupture three months earlier. She was taken to Maine Medical Center and had the same procedure and doctor as I did. It was so nice to speak to someone who knew the struggles of the 608 neuro ward as well as the fatigue, emotions, and recovery process associated with a ruptured brain aneurysm.

There were men and women of all ages from around the world in this group. Some had more serious issues, which was unsettling when I’m still actually IN the hospital, but it also allowed me to see I was not alone and that there were survivors out there who were many, many years out and thriving. They gave me hope and comfort.

I kept in touch with Julie after I was discharged and we continued to speak online and share our struggles and recovery. When Dave’s niece Kim passed away from a ruptured brain aneurysm and her friends and family created the KAT-Walk in Portland, Julie drove over to attend one of the first events. Her support meant a great deal to me and it was great to meet her in person! Social media apps and cell phone capabilities weren’t as active then as they are now.

We also befriended Lori, another survivor from Florida who was having a very difficult time with a massive brain aneurysm. The three of us met in person for the first time in 2011 in Massachusetts at a brain aneurysm awareness event along the coast. The three of us walked the course, shared survivor stories, laughed a lot, and hoped we’d have another opportunity to see each other again.

Lori, Julie & myself in 2011

Both Julie and Lori have had other medical issues since I met them. Julie has another brain aneurysm that is being monitored and has survived breast cancer. Lori is a walking miracle having endured multiple, highly dangerous brain surgeries and has a brain filled with hardware. Both of these terrific ladies are an inspiration.

Lori was a good resource for me when I had my craniotomy on my 2nd brain aneurysm in 2014. She called to check on me and gave me the best advice about ice being your friend! SO true! Even today, when I’m overtired and feel my face swelling where I had my surgery, I place ice there and always think of Lori. She certainly has had her share of ice.

That same year, Julie and Lori made the journey to Maine for our 6th annual KAT-Walk & Karo-5k for brain aneurysm awareness. I was thrilled they were both coming. Julie helped in the brain aneurysm awareness tent and Lori did the run with her new service dog Tober! It was great to meet her husband Ralph. What a fun couple.

It was a cool day on the Maine coast and sun-lover Lori was very cold! They were all so nice to stay afterwards to help tear down the circus, but since we’re all brain aneurysm survivors….we tire quite easily and silliness ensued! Having a seat on one of the benches along the Back Cove was a nice respite where we could rest, chat, and cuddle to get warm. I don’t know what precipitated the see no evil, hear no evil, speak no evil photo, but it worked at the moment.

Julie, Lori, Ralph, and Tober joined us for our after-party and the silliness and good times continued. When you meet people you just click with, even if you don’t see them or speak to them that often, it just works. Good, good people.

The after party – 2014

Since 2014, our lives have changed a lot. Some worse, some better, but we’re still thriving and surviving. Julie has come to the walk several more times to support us, even when her husband was struggling with a serious health issue. Lori had plans to join us one year, but a pesky hurricane kept her close to home in Florida. We are no longer members of the online support group, but keep in touch via Facebook.

Thankfully we were all able to get together again this year for the 11th annual KAT-Walk & Karo-5k. As it was five years ago, the weather was chilly and a few showers moved through. Lori dressed appropriately, Ralph wore shorts, silly man! Tober is his usual amazing doggy self. What a good, good service dog.

Ralph did the walk with Tober, Julie helped me out in the brain aneurysm tent and Lori ran/walked the 5-k. She’s amazing.

We decided to recreate our “bench photo” from five years ago to mark the occasion. I’m five years older and about 10 pounds heavier, but we still had a lot of fun.

Then they joined us for the after-party which was filled with laughter and medical stories. Survivors LOVE to share & compare their stories and to give great details – myself included. The great thing about these ladies though, is that there is great empathy for one another. Yes, brain aneurysms brought us together, but we’re now connected in other ways and we respect and care about each other’s families. Now THAT is a support group.

So, as I “celebrate” surviving my ruptured brain aneurysm 13 years ago, I also celebrate finding these two terrific ladies and THANK them for helping me get through my recovery, healing, and living.

It’s Show Time!

Because this is MY blog and I can write whatever I want, allow me to toot my own horn for a wee bit.

For many, many years, we have tried unsuccessfully to reach out to local print & television news outlets for coverage of our organization’s efforts to raise brain aneurysm awareness in the state. We have provided stories to the right people at the right times, but there has never been coverage of our annual KAT-Walk and Karo-5k.

Last summer we FINALLY received some television love after I responded to a local news reporter’s story on Twitter. She immediately responded to my reply and Dave and I ended up hosting the reporter in our home for a short interview and two very short spots on the local news station that evening.

NewsCenter Maine Video 1 — WATCH NOW

NewsCenter Maine Video 2 — WATCH NOW

A few people saw these videos and commented and we have no idea of knowing how many people actually saw the report and subsequent videos on social media, but if one person saw them, listened to what we said, and went to the hospital to get checked, it was worth it. We haven’t heard if anyone came to our KAT-Walk & Karo-5k as a result of watching the story either, but we still want to get the word out there.

When Mira, one of our committee members who lost her 27-year old daughter Karolina to a ruptured brain aneurysm, was trying to solicit sponsorship funds for our walk & 5K last year, she met a Portland, Maine lawyer. Derry Rundlett offered up his services in the form of impersonations of Elvis and Jerry Lee Lewis at our Dance for Awareness event in March, in exchange for a television appearance on his monthly cable show in Portland.

Derry is 75-years old, full of energy, and was extremely generous with his time and money at the dance. His performances were great fun and fit in perfectly with this year’s Rock n’ Roll theme!

Dave agreed to be on his show some time in April. He asked me to be a part of it as well, so we drove down to Portland, met Derry for lunch, then walked over to the studio to film the 25-30 minute show.

Because Dave and I have spoken to so many groups and organizations about brain aneurysms over the years and how we came to be involved with raising awareness, speaking to Derry came naturally, it was just in front of cameras and in a studio this time. Neither of us were nervous but we certainly wanted to make a good impression, represent our organization well, and raise awareness about brain aneurysms. I think we were successful on all counts.

We had a rough outline of the show, but weren’t aware of exactly what questions Derry would be asking us.

Watch the Derry Rundlett Show about Brain Aneurysms in Maine

WATCH SHOW – approx 25-30 minutes long

Although I have spoken to many people about my own experiences with brain aneurysms as well as about my sister’s death from one, for some reason after this taping I was quite sad and subdued on the drive north back home. Dave and I chatted a little bit, but I really wasn’t in the mood to chat. I have yet to figure out why talking about it on this specific day and in this arena made me sad. I suppose it just “hits me” on some days. I also think because Derry expressed such an interest and appeared to be deeply touched by our stories and our efforts, it rubbed a nerve/emotion that had been resting comfortably for awhile.

And, as usual, I don’t hear much feedback from my friends or co-workers when these shows are brought to their attention, which also depresses me. I need to stop expecting that support. If I stop expecting it, then I won’t be so disappointed when it never comes. You’d think after 12 years I’d learn….oh, well. You can lead a horse to a computer or cell phone, but you can’t make them watch things, right???