Tag: aneurysm

Stop and Visit

Published on by heiditea1 Comment

Each year of our KAT-Walk and Karo-5K I have been at the tent representing the Maine Brain Aneurysm Awareness committee, only leaving it to help other volunteers if needed or if I am participating in the walk itself. Before, during, and after the event, we try to provide people with support, information, and education about brain aneurysms.

SURVIVORS:
If you’re a survivor, like I am, we encourage you to make yourself known at the event by stopping by our tent to say “hello” and to sign in. Each year we’re very encouraged to meet new survivors as well as those who survived an aneurysm many years ago and choose our event to celebrate the fact they survived. We are also very aware some survivors don’t want to draw attention to themselves or make a ‘big deal” out of it, but it IS a big deal. Brain aneurysms kill too many and if you survived a rupture or were lucky enough to have your aneurysm treated before it ruptures, then you’re very worthy of attention at our event.

Please stop by, say “hello”, and sign in. Not only is it a wonderful feeling to know you’re not alone, but seeing, and getting to know another survivor can give newly diagnosed or treated survivors a tremendous amount of encouragement and comfort.

NEWLY DIAGNOSED
As our Brain Aneurysm Support group continues to draw new members, we’re also very aware there may be patients who have been newly diagnosed with a brain aneurysm. Hearing those words can be extremely frightening, especially if one has no idea what an aneurysm is. It’s only AFTER you’ve been diagnosed and seen at the doctor’s office that the questions seem to present themselves.

At our Brain Aneurysm Awareness tent we can provide you with informational booklets and brochures to help you on your journey. The types of brain aneurysms, different treatments, and what to expect after treatments are all part of the learning process when you begin your brain aneurysm journey.

Also at the tent you’ll meet other survivors who can help answer some of your non-medical questions and hopefully ease some of your fears.

THE WALL OF HONOR
Two years ago we started the Wall of Honor where families can place the name of a loved one who has been lost to an aneurysm or the name of a survivor.

If we are aware a survivor is registered for the walk or run, we try to have their name pre-printed and placed on the wall prior to the event, but each year we meet new survivors and we welcome you to visit the tent, write your name on one of the colorful sneaker stickers, and place your name on the board. You survived…you deserve a place of honor.

Wall of Honor

If you’ve been unfortunate to have lost a loved one or friend to a ruptured brain aneurysm, we also welcome and encourage you to remember them with a place on our wall. As with the survivors, if we know family members of one who was lost are registered for the walk or run, we try to honor their memory with a pre-printed sneaker sticker on the board, but if you’re new to the walk and want to honor your lost loved one, please stop by the tent, write their name on a sneaker sticker and proudly place it on the wall to honor their memory.

We try to keep it to one sneaker per survivor or loved one. If the name you’re looking for is already ON the board, we have seen other family members and friends taking pictures with the sneaker with their name on it. The Wall of Honor has become an emotional place for some and a proud place for others. A true brain aneurysm community develops on the day of the event and it gives one hope, comfort, and encouragement.

 

SUPPORT COMMUNITY
Next to our Brain Aneurysm Awareness tent we will have a tent set up for the Maine Brain Aneurysm Support Group.  For those who are unable to participate in the events, we welcome you to rest here and enjoy the festivities with other survivors and family members.

 

What is the difference between an embolism and an aneurysm?

Published on by heiditeaLeave a comment

With the sudden death of Martha Stewart’s youngest sister from a ruptured brain aneurysm, and the tragic loss locally of a young 17-year old from a pulmonary embolism, there has been some confusion between the two terms. They are not the same thing.

According to Dr. Mark Hoepfner on healthtap.com:

“In general, in any location of the body, an aneurysm is a weakness in the wall of the artery resulting in a ballooning or enlargement of that portion of the artery, and not necessarily a blockage of the artery.

An embolism would be a blood clot that forms and travels to the inside of a blood vessel causing an internal blockage of the vessel.”

If a large blood clot (embolism) blocks an artery, blood flow may be completely stopped, causing sudden death.

A ruptured aneurysm releases blood into the spaces around the brain, called a subarachnoid hemorrhage (SAH). SAH is life threatening with a 50% risk of death. Blood in the subarachnoid space increases pressure on the brain. At the same time, the area of brain that previously received oxygen-rich blood from the affected artery is now deprived of blood, resulting in a stroke.

With the two terms sounding so much alike, I can understand how people can get the two confused. Sadly, they can both result in sudden death. It is disconcerting that when news reports discuss a cause of death from either of these issues, they choose not to explain what they are or how they are diagnosed, treated, or any risk factors that may cause them. Knowledge is power and it could save a life.

The 5-Month Mark

Published on by heiditeaLeave a comment

Five months ago this morning, my brain aneurysm was clipped. After two nights in the hospital, I spent 8 weeks recovering then was back at work. The report so far is good and I think I’m doing well. I know I still have a ways to go and the upcoming months will begin to test my fatigue and stamina as work efforts will increase.

But, until that happens, the progress is good considering everything that could have happened. Fatigue, both mental and physical is still an issue and I cannot determine exactly which type of effort tires me out more. Grocery shopping is a chore. I used to go grocery shopping after work, but have yet to do that since January. Working a full day and driving 60 miles is still difficult and if I were to add groceries to that, I fear my attention to driving would be severely diminished. As a result I wait until the weekends, and usually give myself a day to rest after the work week on Saturday, then shop on Sundays. So far that seems to be working.

20140616-224105.jpgMy incision is basically invisible. I can feel where it is and it’s obvious where the incision was made due to where my hair was shaved, but it’s doing good. I’m still a little self-conscious of the dent at the side of my eye and the visible screws underneath my skin on the left side of my forehead, but I’d rather have that small issue than have to go through another rupture. There….so shut up about it Heidi!

20140616-224326.jpgNow, my hair growth from the shaved area is taking its sweet-ass time growing in, which is frustrating still. At 5 months it has grown a whopping 2″. At least it isn’t sticking up quite as bad as it had and I can finally dry it so it lays flat. Progress, but still weird to deal with. My next cut may be short, with some color. I hate my hair short, but it’ll grow back (maybe!).

Bending over too much and lifting heavy things are exhausting and I think…THINK the feeling in my scalp is finally starting to come back. The only reason I’m starting to think that is that my scalp is hurting now. It’s not an ache-type of pain, but if I scratch, touch, or brush that part of my scalp where the skin was peeled back, it feels tender and almost like little needles, lightly pricking my head. I’m hoping that feeling is all of the nerves reconnecting where they were cut. It was a large area that was cut for the incision and peeled back, so there is a lot of reconnection that needs to occur.

I’ve been told by two doctors that it will probably take a good year before I feel back to “normal”, whatever normal is now. So that means a tiring fall and winter. Goody! But I’m still here.

The Old Two-Day Meeting Test

Published on by heiditea1 Comment

Well, nothing like an hour and a half drive and two full days of meetings to test one’s fatigue and stamina!

I had to attend a two day conference where just getting there was a first test. Driving an hour and a half away was the longest I have driven along since my surgery. It’s an easy drive, but one must concentrate on staying focused while driving. I did…I arrived…I was tired. I would have preferred to close my eyes for 15 minutes, but the agenda would wait for no one.

Paying attention, listening, interacting, taken notes, and just plain old thinking took their toll on me both days. We have very few meaningful breaks where I could rest properly and one day we worked through lunch while we ate, so I had not chance to leave and rest. I made the drive home and promptly just wanted to settle into a hot tub and soak my tension away – which I did!

I don’t expect anyone to understand what I’m going through and I certainly hope no one thought I was bored or falling asleep those few times I actually had to close my eyes during the meetings, but I had to take care of ME. I’m only a little over four months about. I may look fine, but I still have my days and times when it’s a struggle.

Well, at least I look better than I did four months ago! 🙂