Category: Support

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.

It’s December

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Wow, December snuck up on me quickly!  Surgery is a little over a month away and I’m starting to get that anxious, nervous feeling…and not in a good way. LOL

One of the advantages of having SCHEDULED surgery is that you’re able to get things taken care of and organized. It has afforded me the time to get projects completed at work and let my co-workers know I will be out. Unlike last time, which left them in a mad scramble for another graphic artist to finish the catalog files. They’ve hired a few more employees who can handle projects for me in my absence. I just hope they’re not TOO good and I’m without a job when I get back.

My family in New York is looking forward to seeing Dave and I over the Christmas holiday. It will be sad and sweet for me all at the same time. The last time I was in NY for Christmas was in 2011. It was the last time I saw my sister Dori before her death 5 months later. I’m hoping it’s a joyous time for us all and not one of sadness or impending doom for my surgery. In my heart I know I’m doing the right thing, but I’m sure for those around me, it’s scary and confusing to understand.

We will enjoy gift giving, singing carols, and the general time together, but I know there will be a twinge in our hearts when we all say goodbye before Dave and I make the 11-hour drive back home.

Then, once we’re back, it’ll be a mad dash cleaning up all of the projects at work and possible buying myself a new bathrobe and some lounge sets for recovery. Might look at some comfy hats too…just not sure what to expect after the surgery. I’ll write down all of my passwords and logins both at home and at work…just in case. Mostly it’s in case I don’t remember them after a few weeks off. LOL

There is only so much I can do, but being given the opportunity to prepare myself and others truly is a blessing. However, it also gives me more time to worry! Let the countdown begin!

Today’s Top Story

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Now that my family, closest friends, and co-workers know, I can let others know about my aneurysm news. I’m going to have my 2nd aneurysm clipped in January.

I found out in April, 2013, right before we left for Scotland, that my 2nd smaller aneurysm was actually visible on the original scans done in 2006 during my rupture of the other, larger aneurysm, but it was never mentioned to me in those immediate checkups with my old doctor. My current doctor indicated he felt we should start thinking about doing something about it. That scared me and certainly gave me pause about our trip to Scotland. Well..it was more like denial that anything was wrong. I was going to Scotland, dammit. Which we did!

The doctor said his office would call when we got back to discuss my options. They did call in June, but I wasn’t prepared to discuss it just yet.

Then, after our annual walk and run for Brain Aneurysm Awareness in September, I met some fabulous survivors and it gave me the strength to make a decision, so Dave and I met with the doctor at the end of September and the decision was made to proceed with clipping.

Several factors with regards to MY aneurysm and history, made that decision easier. I guess:

  • I have a family history
  • I have previously ruptured
  • The 2nd aneurysm has grown in the last six years
  • I’m still relatively young
  • I have great health insurance
  • I want to go to Scotland again!

Even though Dave and I are, sadly, quite educated on brain aneurysms and the treatments, we went armed to the meeting with quite a list of questions for the doctor. Dr. Ecker spent about an hour and a half with us and his recommendation was to go with the more physically invasive clipping procedure over the less-invasive endovascular coiling which I have had previously.

When discussing both options, he just had to many “if”s with the coiling and the aneurysm itself is more rectangular in shape than a balloon or bulb, which leads me to believe keeping a coil in the darn thing to begin with would be tough. The doctor agreed clipping would be more durable and stable than coiling in this case.

Since I have already had a compaction issue with my other larger aneurysm, which now has 20 coils, I really didn’t want to have to go through the endless checking and worry with TWO aneurysms now. I’m very confident that clipping is the way to go with this particular brain aneurysm

So, after surviving another catalog at work, I will be making plans for the surgery. It’s nice to HAVE the luxury of planning and a date for the procedure. With a rupture, there is no advanced warning. There is no indication you’ll be bed-ridden for months. There is no warning your family’s life will be changed for ever.

By deciding to DO something about my aneurysm, I AM in control…not the other way around. Of course, I’m scared. It is open brain surgery, but meeting, and knowing other survivors has given me the strength to show this aneurysm who’s the boss. I’m one of the lucky ones because I know I have an aneurysm.

The doctor showed me my brain scans, drew me diagrams and showed me where the incision will be made. They shave just that part of the head, then remove a 2-3″ diameter part of the skull along my hairline around my left eye. They’ll isolate the aneurysm away from the artery and place the clip on it. Then close up the skull. Possibly a 2-night stay in the hospital, then home for a 6-week recovery period. It’s not an emergency situation so the recovery period is far less stressful and difficult, although fatigue will still be an issue.

I feel fine. There are no symptoms that something is wrong, and that’s the whole point of doing something now. Could something go wrong during the procedure? Yes, but the risks of that are far fewer than if I let the aneurysm continue to grow and HAVE to do something about it during a tramatic event. Been there…done that…bought the t-shirt Pedro.

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.