And the Stories Continue

Five years ago I wrote, what I contend, is one of my more poignant blog posts about all of THE STORIES I have heard about brain aneurysms. Stories from many different people from all walks of life and at very random times. We heard a new one last week.

As my husband and I were in the pre-op area at the hospital waiting for his colonoscopy to begin, the anesthesiologist came in to speak to Dave prior to the procedure, which is normal. As Ron was talking he noticed the brain aneurysm survivor pin that was on my purse and Dave’s KAT-WALK bracelet and asked who was the survivor.

We proceeded to share my story, which was top of mind for both of us because it was 16 years to that day, that I had suffered my ruptured brain aneurysm. Then sadly, Ron told us HIS story about losing his wife to a ruptured brain aneurysm 12 years ago.

Suddenly Dave and I were no longer patients Ron needed to tend to during his daily routine prior to the procedure, but human beings who had both suffered losses due to this horrible disease. Ron leaned over and rested his elbows on the metal railing of the hospital bed and proceeded to tell us the sad story of his wife, his children’s reactions, the day it happened, the treatments involved at the time, and the tragic outcome.

Obviously, for Dave and I, we could relate to Ron’s pain and the suddenness of losing someone to a rupture brain aneurysm. Ron even mentioned meeting someone else who survived and how that person had survivor’s guilt. I too, have suffered from that.

Dave wears his KAT-Walk hat and bracelet almost daily and I always have my survivor pin on my purse. These pieces of “swag” can result in moving stories of sadness and triumph from complete strangers. Stories we never would have known had they not seen the small trinkets and asked about them.

Five years ago I wrote that blog post because of the anniversary of my sister’s death. This year was the 10th anniversary of her death. 16 years ago last week, I celebrated my annie-versary of my rupture. That is MY story, but there are so many others out there and we continue to realize the importance of sharing them.

Ron congratulated me for surviving multiple times and said I “looked great’, which was very sweet considering he had never met me before and had just shared, what I am sure, was not an easy story to tell. We shared our sympathies with him and thanked him for taking the time to tell us about his wife.

All of these stories are meaningful. All of these stories effect us. And all of these stories get added to the long list of people we have met over the years who have been effected by brain aneurysms.

Days of Rest

Eight days after my brain stent placement, I’m doing very well. I went back to work on Tuesday and worked four full days. I did take two 15-minute breaks a day to step away from my computer to sit and close my eyes. It did help.

Thankfully, I didn’t come back to an excess of projects that needed my immediate attention. There was just enough to test my eyes. And it was my eyes that felt it the most. After a couple days of headaches, those eased, but fatigue and eye strain weighed heavily on Friday. Based off previous non-emergency brain procedures, none of this is unexpected.

I went to bed early every night, listening to my brain and body. Sleep was welcome and thankfully my kitties let me sleep in this Saturday morning.

During the week I received two special “Get Well” boxes in the mail from family & friends back in NY. I appreciate that they took the time and spent the money to do something to help in my recovery. Tea, tasty bites, and heart-felt messages remind me I’m not forgotten and I welcome the support.

I won’t know for SURE if the stent is secure and stable for another six months when I’ll have ANOTHER angiogram. In the meantime, I’ll continue to live each day, try to take care of myself, and be careful to avoid any injuries.

As we celebrate Easter tomorrow, I too, celebrate another battle with this brain aneurysm with hope, renewal, and new life with more brain bling.

Stents & Socks

FYI: These posts are half typed and half using the terrific keyboard dictation feature.

My family is the type that can find humorous moments during the darkest of times. Some may call that inappropriate, others may call it a coping mechanism. In our case, I believe it is the latter.

Like when we were at my grandfather’s funeral in an outside room waiting for the service to begin. My mom was using some Binaca Breath Spray, which was very popular at that time. However, she didn’t have the spray in the correct direction and instead of spraying inside her mouth…the spray went all over her cheek. My sisters and I saw it as it happened and we all got the giggles.

When my father almost died from a ruptured intestine, my sisters and mom and I spent over night in the hospital waiting room. To pass the time we counted ceiling tiles. Then when we knew he survived the surgery, we needed to stop at a store to get “supplies” to go to a hotel. Things like saline solutions for contact lenses…underwear, etc. We were so tired it was like a very slow march of zombies. As we caught the reflection of ourselves the glass of a display case…we got horribly silly. Awake for 24-hours was not. a good look.

After my father passed away many years later, my mom and I made our first public appearance at our church’s Maundy Thursday service. Mom wasn’t looking forward to all the sympathy faces and comments of expression from people, so our plan was to arrive late and sit in the back, but there were no seats available, so we had to sit closer to the front. One of us sang something “off” in one of the hymns and we got the uncontrollable giggles. As we were both trying to hide our giggles, the obvious shaking of our shoulders probably made it seem we were both crying…and that WOULD have been appropriate since my dad has just passed. Nope…we were giggling.

Well, long story short….I think my family of angels (dad, mom, and both sisters) had some fun with me on Wednesday after I was admitted to the hospital for my latest brain procedure: inserting a flow diverter/stent inside my existing stent.

After checking in and walking down to the radiology department, I felt something hitting the back of my knee/calf. My rain jacket wasn’t long enough to hit that area and I couldn’t figure it out. Turns out it was something INSIDE my pant leg – a SOCK that hung on in the wash apparently. I’m still shocked I didn’t notice it before leaving the house, in the car, or the walk from the parking lot to the hospital

I couldn’t believe it. Too funny and something my family would do. I promptly extricated the offending sock from my pant leg and handed it off to Dave where it kept it for safe keeping. It surely helped lighten the mood.

I’ve been to this area of the hospital many times and I was SO glad that Dave was allowed to come in with me this time. We arrived promptly at 11:45 and proceeded to the pre-op area where I was asked more questions and prepared for ROUND 4 on my original, biggest brain aneurysm.

As usual, the staff at Maine Medical Center were top notch. Highly attentive, hard working, and kind. I met with part of the team that would be assisting with my stent placement and we made sure to mention I had a history of becoming quite nauseous. They promptly ordered up a nausea patch and gave me pill as well. I can happily say both were highly successful.

Part of my team was Jack, who is a PA and Dave and I were happy to see him. He has attended our brain aneurysm support group many times in the past and I was happy to see a friendly face. He explained the procedure to us again and that he was very confident we’d get it all done today which helped ease my anxiety. And I was anxious….more in previous days than today. Having a stent placed inside of another stent wasn’t something I had heard a lot about it.

IV’s were set up, my groin area was shaved, I gave Dave a kiss, and off I went to the endovascular radiology suite. It’s a bright and busy area with a fantastic team of technicians. I was quickly put under and my next memory is of waiting up in the PACU (Post Anesthesia Care Unit.) recovery area hearing Dr. Ecker’s voice saying the procedure went very well. I guess Dave saw me briefly when they were moving me there, but I don’t remember

Afterwards I had to lay flat for two hours to avoid any issues with the groin incision site. Then another two hours in recovery. During the wait, my main nurse was able to take a much-needed 30 minute break. Elaine was filling in for her. While reading up on my case, she noticed I worked at Johnny’s and mentioned how much she “loved their magazine”. It gave me great pleasure to tell her I was the one responsible for the layout. She said she’d tell people she met the person who does the catalog.

Dr. Jack came by to check on me and talk about the procedure. He said the flow diverter placement went very well and there were no issues. Also gave me a brief cognitive exam and was pleased. I was finally able to eat something. I ordered up an egg salad sandwich that hit the spot and didn’t cause any nausea, thankfully.

My throat was very sore and my voice was raspy due to the intubation/breathing tube they inserted during the procedure. I didn’t have much pain, just discomfort at this point. As expected, the groin and head were the main offenders.

Even though Dave was allowed in the hospital, he was not allowed back to see my in the PACU. So, I called him on my cell phone. By the time I was transferred up to a room on the sixth floor neuro ward, it was 8pm and visiting hours were over. So, I wasn’t able to see Dave again that day. He ended up driving back home. I called him several times in the evening.

This area of the hospital was once very familiar to me. I spent almost 20 days here after my ruptured brain aneurysm in 2006. It was called the 608 ward back in the day. It was not my favorite place. Noisy, chaotic, and crowded. Since a remodel a few years ago, is it now a quieter, less chaotic place with private room and strong sliding doors. I felt like I was in a the Plaza compared to those days.

Once I got settled in and introduced to the crew assigned to my corner room, Brittany and J.J. I was starting to feel some pain. I ordered up a hot black tea with a Tylenol chaser. As long as the Tylenol took care of the job, I did not need the stronger pain meds that were offered.

The tea really hit the spot, but the caffeine may not have been the best choice at 8:30 in the evening. In addition to the offering of tea, the lovely compression wraps were also slapped onto my lower legs to help alleviate the development of any clots and keep the circulation flowing. I have a love hate relationship with these things. I know they’re needed, but they make sleeping difficult as the wraps expand like blood pressure cuffs every 30 seconds and they’re wired up to the end of the bed, so some movement is restrictive. I’m a side sleeper and they just weren’t playing nice.

I was still hooked up to one IV pumping fluids into my body, but hydration wasn’t an issue today. So, at some point during the night, due to my successful urination visits, the nurse removed that IV. It felt great to have the arm free again.

I had a surprise visitor at 9pm — Dr. Ecker! I never saw him prior to going under in the operating room but I did remember hearing his voice afterwards. He and Dr. Jack both went to speak with Dave after the procedure which I know Dave really appreciated. The docs mentioned it was a good decision to have the procedure done after getting in there and really seeing what was going on. Dr. Ecker explained to me again that he felt everything went very well, BUT that we’d discuss it in more detail on our follow up in two weeks. I will also be having an angriogram in 6th months to make sure everything has healed as it should. It was great to see him and I appreciated him coming to check on me at that hour. It was his birthday today as well.

My discomfort in the bed continued and I got very little sleep overnight. Brittany was terrific and I had some pudding early in the morning for my next round of Tylenol. They performed neuro checks every four hours. With the usual “what’s your name”, “where are you”, “smile for me”, “stick out your tongue”, “raise your arms”, “touch your nose” and some strength test with my arms and feet. I passed them all with flying colors. I even got the date right after midnight.

Sometime after 3am, I was able to finally sleep, but then was awakened at 4:30 to go down for a CT scan. I knew they were going to do the CT scan, but wasn’t expecting it quite that early. They had a wheelchair all ready for me and I was whisked down for the scan and 10 minutes later I was back in the room on the 5th floor.

I was wobbly on my feet and there were some sensations visually that were bothering me. Then right after the scan, I got an ocular migraine. Thankfully it lasted the usual 30 minutes and didn’t develop into something more. Perhaps the contrast die from the CT scan triggered it..or it was just…you know…my brain was fiddled with earlier the previous day.

As dawn broke, there was a shift change on the floor and I was introduced to Kellie. Then things started to happen in rapid succession. I called Dave and he was already in the car driving down to visit me for the opening of visiting hours at 8am. I ordered up a tasty breakfast of cinnamon French toast, diced pears, orange juice and hot tea which tasted like coffee. Boooo….

Then Jack came in and gave me even more details of the procedure and to see how I was doing. He drew me a diagram of the anatomy of my aneurysm and to show the funky curves of my arteries. The placement of the new stent fell a little short he said and it may or may not cause some issues later on. I really appreciated him taking the time to explain it all and the drawing he did.

Dr. Jack’s drawing with my text and color embellishments

Then he said the CT scan looked good and all reports back to him via the post-operative staff and the neuro ward crew looked great and that he’d put in the order for discharge. Yay!

The nurse raised the shade in my room. The sun was shining and I was reminded of the bigger, badder world out there as I noticed a window opposite me had a Ukrainian flag and a heart in the window. Yes, I just went through my fourth procedure on this one brain aneurysm, but there were people both sick and healthy around the world in much dyer situations. I am blessed.

I slowly got dressed, Dave went out to pull the car around, and off we went for the hour and a half drive home. The drive pooped me out so we just drove through the drive-thu for a quick meal. I got home, promptly said “Hi” to the kitties and crashed on my own bed for a 3-hour nap. Oh, and I enjoyed a GOOD cup of hot tea.

This is now Friday and I’ve had a slight setback with regards to discomfort, some swelling, and lack of sleep. And now there is abdomen pain I’m dealing with on top of head pain. My groin feels pretty good. Yes, my groin hurts after brain procedures. That’s how they access it.

OH, and when I was being moved from PACU to the Neuro Ward, I discovered I was missing one of the hospital-supplied socks I was given upon entry into pre-op. What was it about socks and this trip? I think it was my family of angels having some fun with me. Well played….well played.

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.