Category: Family

That Kind of a Day

Published on by heiditeaLeave a comment

I think I kind of suspected a day like I’m having today was coming, which is why I chose to take the day off work because Dave was going to be out all day. Don’t get me wrong, I adore Dave and he has been my rock and my angel, but I think I knew today needed to be a “me” day and no amount of comfort was going to help me get through it. I just had to “do it” as my nephew Ian used to say with great conviction. And I needed to be alone.

Since losing my sister Dori to a ruptured brain aneurysm, I’ve really only cried three times. That probably seems like a very low number to many people. I know my own family members have cried on a daily basis at times. For some reason, since my own rupture, my crying mechanism isn’t the same as it was pre-rupture. I can’t explain it, I just KNOW it is. I also know crying takes a lot out of me since my rupture, so maybe subconsciously I try to avoid crying at all costs….I don’t think that’s it though. My emotional triggers are just “different’ for lack of a better word. I am very sad, very emotional, but crying just doesn’t come as easily as it used to.

I could start to tell I might need a good cry the last week or so. I’ve been quite depressed and lacked motivation to do anything…even make a proper tea, which is very unlike me. Just plop the bag in the mug and I’m done for today. Gasp! Dave left for Portland this morning and I didn’t even hear him leave God bless his heart.

However, the kitties had other ideas and kept coming in to wake me. I knew I needed sleep. I was over-tired and had been having trouble getting to sleep, so I forced myself to stay in bed and get some sleep. I dreamt about Dori though, which always makes me sad when I wake up. Thankfully, when I dream about her, she’s healthy. As I did after my Dad died, I dreamt of him when he was healthy, not as I last saw him in the hospital. I’m glad I don’t dream of Dori in the hospital. It was very difficult to see her in that condition when technically, we had already lost her.

So I woke up already sad and went from there. I listened to music, read outside and tried to just relax and rest. I went out to the road to get the mail and a trigger in the mail started my tears of grief. Several years ago I purchased a Christmas gift for my nephew from the “Adopt A Loon” association in the Adirondacks. I’m not sure if Dori, Jon and Ian ever located their adopted loon, but I knew it was Dori’s favorite bird and thought they’d get a kick out of that. Every year since then I get the newletter from the association in the mail and today was that day. I started to open it, saw the headlines announcing upcoming fundraising events and couldn’t finish opening it. In fact, as the tears started to flow, I ended up just throwing it in the trash.

The next 30 minutes were howls and shrieks of questions that no one can answer. No one. There are no answers for the questions I ask now. No one knows why Dori was chosen. No one knows why the Dr.’s didn’t check her for brain aneurysms. Why didn’t they? What was the excuse given when it was requested? Why didn’t the neurologists look into it before her back surgery? Why? Why? I don’t understand and there is no one who can answer that question for me. Why didn’t I die after my rupture? Why did Kim have to die from hers too? I don’t understand.

I tried to get my sisters to get scanned after my rupture in 2006. It isn’t something I can MAKE them do, but if Dori had…they would have seen the aneurysm and chances are she’d still be here today. I’m having a very, very difficult time with that one. I haven’t been in the position of having to actually make that decision to see if I may have a potentially life-threatening condition, but I’m sure fear is the overriding concern. And I guess I didn’t do a very good job of projecting the advantages of getting scanned prior to having it rupture to my sisters. Now….I have lost one. Do I blame myself? A little bit, yes. Could I have pushed more and become a real pain in the ass to my sisters? Yes, I could have, but I didn’t. And now my older sister has since lost her job and has no insurance. I HATE that health insurance is now the only reason preventing her getting scanned.

She may not even have an aneurysm, which would be great. And even if she does have one, that does not mean it will rupture and ever become an issue, but she can monitor it and she’ll KNOW it’s there and perhaps take better care of herself. Wait…do I take care of MYSELF better now that I know I have another brain aneurysm sitting there? No, not exactly. I still drink wine with dinner, I hardly exercise, I don’t eat that great…..life can really suck sometime’s can’t it? Even the healthiest of individual can be taken by ruptured aneurysms. They didn’t KNOW they had them though, that’s the difference.

Both my sister were/are at high risk because of their age, they’re both smokers and they have a 1st degree relative who has aneurysms. I’m beginning to sound like a broken record….I’m tired of it too. Right now, I lack the energy to fight the system, or God, or whomever it is I feel like I’m fighting to get answers. I don’t know….at times I don’t care. If people choose not to get scanned, that’s there business. All I can do is present them with the pros and cons of knowing you have a brain aneurysm and let them lead their lives. I just hate….HATE that my sister Dori has now become one of those damn statistics. But this particular “statistic” was one I spent my entire life with. This particular statistic left behind a beautiful 15-year old boy and a husband.

I don’t understand it and never will….it’s just grief and I know that, but it sure stinks.

Even More Difficult Post

Published on by heiditea4 Comments

Those damn aneurysms have claimed yet another beautiful person; one of my older sisters, Dori. The damage done during the rupture was too severe for any kind of a recovery so we had to let her go. Our hearts are breaking.

Such a vibrant, fun-loving individual, my sister was an incredibly hard worker and usually put other people’s needs in front of her own. She will be missed by more people that even she realized I’m sure.

I’m going through so many emotions of not just losing my sister, but of my nephew losing his mother, my brother-in-law losing his wife and my mother losing a daughter.

Then there’s the aneurysm aspect. As with Kim’s death in 2008, I’m faced with my own mortality and reality of my two aneurysms and it’s disturbing and frustrating. Why did I survive my rupture and those two beautiful individuals did not.

I have to use Dori’s death as an example of what can happen in a familial situation if a sibling is not checked. I hate that I have to use her story because it IS so personal and effects me so deeply, but I have to. Dori supported me so much and I need to support her now…even if it’s far too late.

And we need to celebrate her life, not mourn her death. Rest in peace dear sister, I love you.

Difficult Post

Published on by heiditea2 Comments

Over the years since my ruptured brain aneurysm, it has been very easy for me to simply copy & paste links to other people’s aneurysm stories of hope, struggle and survival. However, this particular entry is one of the most difficult I have posted because it affects me and my family personally.

Two weeks ago, on Mother’s Day, my older sister Dori suffered a serious ruptured brain aneurysm. Damage was done to her brain stem and a secondary part of the rupture created another hemorhage deeper into her brain tissue. If her husband had not been home and close to where she collapsed, she may not have even made it to the hospital. But after a trip to a local hospital, then a helicopter flight to Buffalo General, she is hanging on, but barely. She’s been treated by some of the top Dr.’s in the country including Dr. Snyder and Dr. Sorkin.

They coiled the 6 mm aneurysm with 3 coils, but because the secondary hemorrhage created more blood, a clot had also formed and they had to remove part of her skull to remove the clot from her brain. She has been in a coma since the surgery, non-responsive, on a breathing ventilator and still suffering vasospams and seizures. The heavy sedation she has been under due to the seizures, has prevented them from getting a complete and thorough neurological exam to determine the amount of damage and her chances of any kind of a recovery.

It has been heartbreaking and frustrating. And at times I almost wish I were not as well versed in aneurysm issues as I am because I know the seriousness of the situation as a result. Injury to the brain stem is so severe because it is similar to the motherboard of a computer being disrupted or destroyed. The brain stem, controls consciousness, respiratory (breathing), heart rate, ocular (eye) movement, dilation and contracture of the pupils in response to light/darkness, swallowing and facial movement and all neurological signaling from the brain to various muscle groups. The brain stem literally controls all that we do and how we process the things that we do each day. Right now, Dori isn’t doing most of these things on her own.

She has also developed pneumonia and has been dealing with a fever although we’re hoping that has gone away now. How much can one person be dumped on? Lighten up God, would you?

Dori was with me from day one of my rupture in 2006. She immediately flew out to Maine to be with me and Dave during my surgery. As I have stated repeatedly, I’m one of those very lucky ones who survived her rupture with no further deficits. Dori was there after my surgery as I was wheeled out of the recovery room to ICU and was complaining about how thirsty I was and the tape residue on my mouth from the breathing tube. She comforted Dave through it all. They cried together and they laughed together when I started joking straight out of surgery.

She also flew into Maine to be with me last year when I had my recoiling of my larger aneurysm done. I now have 20 coils in that one aneurysm and another smaller aneurysm was discovered along the way that we’re watching. Dori was able to meet my new doctor, Dr. Ecker, who ironically trained at Buffalo General and most of the Dr’s and a lot of nurses we spoke to there remembered him.

I wasn’t able to greet Dori and be there for her when she went into surgery. Unfortunately, at the time, Dave and I were in England. My family struggled with telling me, but finally decided they had to. We cut our trip a week short and flew home from England as soon as we could and joined my family at Dori’s beside. Truly devastating to see her in the condition I was presented with. Her long, thick hair was gone, shaved to do the clot removal. Her head bandaged and wired, along with a drain. The breathing tube and ventilator doing the work for her. Every type of monitor attached to her that could be. Heartbreaking…..heartbreaking. Why couldn’t she have come through her rupture in the shape I did? Several reasons I believe.#1, God just had other plans I suppose, but #2, I firmly believe Dori was having symptoms of the aneurysm weeks (perhaps even a month) before her rupture. She’s been having back issues since last November and had back surgery scheduled. She was in horrible pain for months and was unable to work. During that time, however, she suffered what she thought was a migraine. My family is susceptible to migraines and both my sisters and I, as well as my mom and some cousins all have suffered them in some form or another. This time, however, Dori knew it was different. Then she had boughts of nausea that went on for a few more weeks. Her husband took her to the ER, then took her to an acute care center. The acute care center was more of a clinic without full medical facilities of an emergency room situation. They were there because they were offered quicker service. Frankly, I’d rather have more completed care, but that was their decision.

Apparently the last time she was taken to the acute care Ccnter, she DID ask to have a CT scan. Either they refused, or they didn’t have the facilities. And even after telling them her sister and cousin had had brain aneurysms….they didn’t even insist she go to an ER. Very, very, very frustrating to find that out because her rupture MAY have been prevented. More heartbreak. And her husband told me after her back surgery she told him she just didn’t feel right. God, she should have been looked at.

I’ve been trying to get both of my sisters to get scanned for aneurysms since my ruptured. They’re both at high risk simply by being smokers and having a 1st degree relative with aneurysms (I now have two) and two 1st cousins who have had aneurysms. If discovered, an aneurysm can be treated before it ruptures preventing rupture, stroke and death. I hate, HATE that it takes something like to this open people’s eyes, but I guess it has. We need to get my other sister scanned, and soon.

I am hoping and praying Dori will show signs of something soon. She has a beautiful 15-year old son and husband who need her and God knows I need her. She’s the caregiver for our family…she helps everyone get through tough times like this….we need her here to help us help her. If God has plans for her, I wish he’d let us know.

Aneurysms Be Damned….

Published on by heiditeaLeave a comment

Aneurysms be damned…we’re taking that trip to the UK finally!

Although Dave and I had planned on waiting a year after our wedding to take our official honeymoon to the UK, we hadn’t planned on my large aneurysm raising it’s ugly head, the discovery or a new aneurysm and the addition of more coils and a stent to my brain. Those little item resulted in a longer delay for the honeymoon and we had to put it off for another year.

Well, the “one-of-those-days” moments is about to arrive and we’re really going to do it. Tickets, hotels, guides and flights are all booked and ready to go. We’re as ready as two people can possibly be for an overseas trip. Hell, we’ve had long enough to plan for the darn thing!

And even though I know it won’t happen, I can’t help but think all of that metal in my head will set off the metal detectors going through airport security. LOL I know it won’t, but I’ll still think about it for sure.

I love that we’re taking this trip with so much love, support, blessings and prayers from our families, friends, and co-workers. I am truly thankful for it all and for the Dr’s who have provided their expertise and skill to prolong my life and give me another chance to LIVE! So many aneurysm survivors are not able to enjoy living their lives to the fullest, but the majority of us DO try and this is a big step for me. I haven’t flown since 2005 when I flew to visit my friend Gwen in Canada. Little did I know during that trip that I had a 1/2″ diameter aneurysm waiting to blow.

Now I DO know what’s going on and I’ve been given the “Green Light” to travel by my Dr. So…LETS GO TO LONDON BABY!