Category: Recovery

Day Two: Post-Clipping

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Saturday arrived with an actually quiet 608 ward….at least at 1 a.m. The lady next door soon started her crying jags and feeling like people were leaving her there to day and called the head nurse a witch. Although I understand how the mental issues can effect you because I had that in 2006, it was entertaining and annoying this time when I really needed some sleep. It went on for hours.

I did get some sleep…some more pills…some more ice packs for my face, but was feeling stronger. On one of my trips to the bathroom, I sat in the chair looking out at the night lights of the Portland skyline and started working on the blog. Takes awhile to get it all out, but it’s important for me to record it and to let other’s now how the procedure went for me anyway.

Dave went home last night and called in early this morning, but the shift change had just happened and the new nurse hadn’t even had a chance to introduce herself to me yet.

I ordered a little bit more for breakfast, but OH, was it lousy. LOL Egg omelet was like two sheets of egg with some kind of cheese in it and I had one slice of toast, but kind of forgot about my jaw and had a hell of a time eating it. Fruit cup helped…and of course all of the pills.

Thankfully when Dave came he got me some good tea from the cafeteria and a chewy chocolate chip cookie. Ahhhh….

One of the neuro team visited me this morning and ran some neuro tests. Said the swelling in my face and eyes looked “great” and that it’s very normal for them to see. So I guess that’s good. He did indicate I needed to walk more. So as soon as I drank my tea, Dave and I set out for a walk again and did 7 laps. While doing the walking, the neuro dr. was also still on that floor so he was able to see me and how stable I was….even with the walker.

As we were waiting to see if I was going to order lunch, one of the PA’s from Dr. Ecker’s office visited and asked if I wanted to go home today? Well….ummm…yes, please!!! Really??? Yes! It was right around noon and I thought for sure it would take hours to get the discharge papers and everything together, but it probably took less than a half an hour.

They gave me discharge papers and scripts for the drugs I needed. I had the IV ports removed and was ready to go! Changed into my clothes (goody hospital gown!) and realized both of my feet were very swollen. I looked like crap, but my Scotland hat fit nicely over the incision at an angel and loosened up significantly.

It was also snowing significantly! Goody. We said good bye and I was wheeled out into the hallway for “pick up” to go down to the lobby. Dave went to get the car and I got shuttled down to lobby and into the car. We stopped at McDonalds for a big, fat strawberry milkshake that hit the spot perfectly and headed on our way home.

I was extremely tired by the time we got home and my face and head were burning. The nurse at hospital let me bring home my dirty ice bag, so Dave filled that up, I immediately change into my comfy thermal jammies, climbed into bed, called my mom and probably took a nice, long, much-needed four-hour nap!! Felt great. Can’t wait until I can shower on Monday.

Dave cooked me some scrambled eggs for dinner and I took my pills. So glad, and so lucky to be home. Now I just need to take care of myself and listen to my sore, aching face, head, and body. Let the recovery begin!

 

The More You Know

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This is a public service announcement for those who are interested in the brain procedure I’m having done this week.

Many people still don’t quite understand the previous three procedures I had done were not open brain surgery, but were done endovascularly via the main artery, which means the surgeon entered the brain through my groin. I know….strange, huh?

When my larger brain aneurysm ruptured in 2006, they inserted 16 very tiny platinum coils into the aneurysm to fill it and then the blood clots around the coils and basically seals up the aneurysm. The size and shape of the aneurysm lent itself to the less invasive procedure because it’s actually sitting ON my optical nerve and clipping at that time did not seem like a life-saving option.

However, five years later, it was discovered those 16 coils had started to compact and blood was once again starting to enter the aneurysm. As a result, 4 more coils were inserted and a stent was placed at the base of the aneurysm to keep blood flowing past the bottom of the aneurysm and keep the coils in place. So far so good on that one, but all three procedures were done via the groin.

My second, smaller brain aneurysm has grown and it has an odd shape in that it’s more rectangular and coiling didn’t seem to be the more durable option this time. A small titanium clip will be placed across the neck of the aneurysm. Then the aneurysm will be popped and should simply disappear, but it requires opening up the skull, going into the brain, adding the clip and closing my skull back up. A little more involved than the coiling and will require a little longer recovery period.

I found this great website that describes the clipping procedure in a no-nonsense type of way. I think this will really explain the procedure for those who are still confused. ANEURYSM CLIPPING

Then I found this terrific blog post written by a neuro-nurse on what to expect after a craniotomy. This gave me a better sense of what to expect afterwards in the hosptial and she injected some humor, which always helps. WHAT TO EXPECT WHEN YOU’RE EXPECTING A CRANIOTOMY

I will try to keep people updated on my progress and recovery on this blog.

Soul Searching

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As I have been psyching myself up the last three months for my surgery on the 16th, a sudden and tragic event almost put a stop to the whole process. On January 2nd, I lost my older sister Rhonda to cardiac arrest. I am now an only child and my niece has lost both of her parents in her young lifetime. Only 19 months ago, I lost my other sister Dori. Just too soon…..

My familyThankfully we all spent a joyful, family Christmas together in New York. I’m so glad I went home, but it doesn’t make it any easier.

After some soul searching, and with the prodding and support from my mother and niece, I am going to go ahead with the surgery. I suppose one can grieve just as easily during recovery. I already have the time slated off from work. I was most worried about putting my family through more stress, but they have assured me that wanted me to take care of ME and move on. Let’s hope that’s the case for all of us.

So, it will be with a heavy heart that I go into my surgery next week. Hoping that this procedure will prevent putting my family through more pain further down the road and Dave and I can continue to LIVE life and enjoy it. As we’re both so well aware…life can be very short. It can be very unfair and it can be a wonderful, beautiful thing as well.

Keep those prayers coming. We’re all going to need them.

Seven Year Itch

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Seven years ago last weekend, my larger 11 mm brain aneurysm ruptured. Each year I have tried to do something special to remember that day and celebrate my life. Some “celebrations” have been more elaborate than others, like treating myself to a spa day, and others have been low-key affairs mostly due to the time of year because I’m so busy at work in October.

This year proved to be one of those low-key affairs. I had been working long hours on Saturday for a few weeks, but my annie-versary this year fell on a Saturday. So, I took this day off. Then went out for dinner and a movie with my Maine Man. Nothing incredibly special, but it was a night out. I’ll take it.

However, this year, I got grumpy. Almost ticked off. Not AT anyone per say, but I’m a survivor and no one took much notice. (how were they supposed to know anyway?) I guess I need to climb mountains or run major marathons to get acknowledged, as one local woman did and received a huge article in the paper as a result.

The last few years, at our annual KAT-Walk & KARO-5K, I have met survivors who have survived multiple aneurysms and are beating the odds simply be being alive, much less driving and taking care of their children. Some have more help than others and some are dealing with more issues related to the brain aneurysm. Don’t you think they ALL need some attention and love from the state?

I guess that’s where my celebration of life turned to the dark side. A Twitter friend sent me the link to the local newpaper article. It’s a wonderful story of survival…it truly is, but it rubbed me the wrong way especially on the day of my anniversary. It had nothing to do with the fact a survivor had such a strong light shown on her, and it was truly deserved. I think it’s because I see the volunteers (ALL volunteers) put their blood, sweat, tears, and hard-earned money into publicizing our event every September and this article came out in October. September is Brain Aneurysm Awareness Month in Maine. The article would have been terrific the week prior to our walk – which is the only one of its kind here in Maine (MaineBA.org). It was all about the timing of that article that bothered me.

I don’t know what else we can do to try and get the medical community and media community involved. We’ve made them aware of the events. We’ve given them brochures to hand out. We’ve sent them to our website and Facebook page, but actually getting someone to film, write, and participate in our event and has been a huge struggle. I guess we need a celebrity…oh, wait…we’ve even tried contacting with them too! No Patrick Dempsey or Joan Benoit in our camp to help bring in coverage – just a terrific group of volunteers.

If I HAD the money, I’d name a hallway in Maine Medical Center’s 608 Neuro-ward and call it Heidi’s Hallway. I spent many hours walking that hallway….sometime’s running into the walls, somethings only making a few steps with everything that was hooked up to me. I’m one of the lucky ones, but I’m unable to get more focus on the people who have survived ruptured brain aneurysms. If I had more money, I’d sponsor a car in NASCAR for Brain Aneurysm Awareness and get to yell “Drivers, Start Your ENGINES! with a group of survivors”. If I had more money, I’d sponsor a night at a Portland Pirates game for Brain Aneurysm Awareness and have survivors come out on the field and be recognized…together as a united, strong front. If I had more money…I’d have my sister scanned to make sure she too, doesn’t have a brain aneurysm like our sister Dori had. But I don’t, I haven’t, and I’m unable to.

All I can do is continue to bring awareness to brain aneurysms without much money and support from the state or medical community, but through the kindness of family members, friends, and complete strangers who have been affected by brain aneurysms. I HOPE our efforts have helped save some lives. I HOPE other survivors see our stories…read our stories, and come to share THEIR stories with us at the KAT-Walk & KARO-5K each September. It’s all we can do with limited funding and a large group of caring volunteers here in Maine.

So, you’ll just have to forgive my selfish rant that an article wasn’t written about ME on my 7th annie-versary. I should get an award just for survivor the months of August, September and October at work. But I’ll take a quiet dinner with my Maine Man and a movie – that’s probably more than a lot of survivors get.

Stay strong, be proud of your accomplishments, and tell people your story…it could save a life and help other survivors know they’re not alone.