Never thought that I would be here

Support
1

I guess people join a forum like this because they have had an unfortunate trauma in their lives and I never imagined that I would be one of them, although in a different way than many others here.

I have already been partially introduced in an announcement about new members. Here we go…

Sheri and I were married for just over 25 years. She was the outgoing, loving, people person and I was the one who opened jars, squished spiders and was the curmudgeon of the our pair. She loved to go out to lunch to catch up on people’s lives and us doing that as a couple was very important to her. She had a lot of medical issues, especially this year, and was in increasing pain.

On Saturday, Sept. 2, we were at lunch at one of her favorite places and I had just gotten up to pay the bill. There was a sudden commotion and several people were rushing over to her. She was slumped over on her left side and I thought she was choking but there no obvious signs of that, but what else could it be? An allergic reaction to something?

Paramedics quickly came and hustled her to an emergency room. The doctor there said he was worried about bleeding in her brain based on her symptoms. But, what did that mean? Can’t you just fix it and we can go home so she can take a nap and we’ll continue on with our weekend?

She had her first CT scan and they said that they were going to insert a breathing tube and put a needle into her brain to drain the blood. I was told that the prognosis was poor. Oh, no!

The next meeting with the medical team included the words “end of life” issues. How did things get this serious so fast? Talk was brought up about surgery – coiling – but it was not done. Bugs me why that did not happen.

Once in the NCICU, and I was finally able to see her, she was wired up like the Space Shuttle. I talked to her on her right side and she seemed to respond; I also squeezed her right hand and got a little response. Just automatic nerve reactions or was her brain partially working? Her left side was completely unresponsive. Initially, we were told 21 days in the hospital and a long recovery in a nursing home.

Very early Sunday morning, she had some troubles with her blood pressure and breathing and we think that is when spirit departed. By 7:00 am Sunday, there was zero response from either side. A third CT scan showed blood in her brain stem and the doctors said she was effectively brain dead. At this point, there was a shell of a body kept going by machines and we had a difficult decision to make. We decided, as a family, that the most humane thing to do was to let nature take its course. At that time, the discussion about organ donation came up, which was very disturbing. That might not be appropriate for here and, maybe, I’ll discuss that appropriateness with the mods.

After her breathing tube was pulled and the machines turned off, her heart lasted another 15 minutes while I held her hand and grieved about my wife, who was way more than a wife. 28 hours ago, we were discussing mundane life things and now she is gone!

This is the most difficult time of my life but I have more than enough support from my family.

I see many people here have also suffered from a ruptured cerebral aneurysm and have survived. I am amazed and very happy that you did. I guess my Sheri was destined to be among the percentage who do not.

Thanks you for reading this long spiel. Take care of yourselves.

12 Likes
2

Joe… I can’t believe what you are going through buddy. As an aneurysm survivor myself people have to deal with loads of guilt and grief . I’ve grieved for the loss of the life I used to have and what may have been. The uncertainty and the epilepsy are very much a cross to bare

I also struggle with the hardship my wife and daughter have had to endure for years whilst I’ve “survived “ this.

It’s way too easy to think that we alone have health issues. That in itself is part of suffering

I’m lucky as you have been to have had a wonderful partner. In sickness and in health was my vow and I’m grateful that Carolyn has always been there

I know that Sheri was as strong for you as Carolyn is for me.

Stay strong buddy. She would expect nothing less.

6 Likes
3

Joe, you can discuss anything pretty much here. When we rupture, there’s a high percentage that doesn’t make it, we all know it, it’s part of having a rupture. The odds are pretty much against us for the first two years if we do survive a rupture.

I am an organ donor, but sometimes I think about donating my entire remains to a medical college like my Mom did. I tease my family that I’m going to write a letter to see if the Residents can find all the injuries I’ve done to my body with a little explanation just to help them out. I see organ donation as a way to pass it forward. When I was air lifted to the hospital that did my coiling, I told them several times that I was an organ donor and they told me they weren’t discussing that yet. For 21 days of my 26 day stay, my family was told that I might not make it to the next. That took its toll on my loved ones much more than on me.

I have never known someone who ruptured having the blood drained with a needle. I too wonder about why they didn’t try to coil or do a craniotomy. I know I couldn’t have mine until the next morning as I was given too much medication between the local hospital and the helicopter flight so they had to stabilize me. So about 15 hours from the time I ruptured to when they could get started.

Sheri sounds like she was a fantastic life partner for you and you for her. You both sound like you balanced each other out. It’s not easy to find a partner that can do this with us and I’m happy to read you both did with each other! I’m happy you have a lot of support, ask for help when you need it with them or with us, we are here for you.

I came up with a saying when my Dad was receiving his Last Rights and the retired Priest was going on ad nauseam, death sucks, but only for the living.

We do have a Wall of Remembrance here Wall of Remembrance

2 Likes
4

Thanks for the replies and support. I have learned that there are a lot of very good people in the world and one does not have to look very far to find them and often all one has to do is to give them a chance.

As far as the surgery – coiling was mentioned within a couple of hours of the “event” – I assume that she was not stable enough to undergo surgery. Maybe they told me but I do remember asking about it the next morning, after her spirit had left, but the doctor said surgery then would for sure kill her. I should have asked why it was not done the previous day but my mind was in a total fog during those rough 28 hours.

In Ohio, maybe this is common in other states, she did have organ donation on her driver’s license which she chose during her renewal. When we met with the medical team to discuss the last CT scan and the fact that her brain was dead, my daughter, son and me talked for some time and we decided to let Sheri go in peace, or whatever peace was possible, We left a private consultation room somewhat at peace ourselves that her suffering was over that we could cross over to the next stage, whatever that was.

I was talking to some extended family members who were sending me pleading texts wanting to know what was happening. I told them all what we were going to do. That was when somebody from whatever group handles organ donations interrupted me and asked to talk.

Long story short, donating organs would mean that Sheri would continue to be hooked up to machines for some indeterminate time while suitable people in need were found. That meant that I would be continuing to troop back and forth to her NCICU room to see my wife, who was no longer there, being kept “alive” just so that she could be cut up. I am being very harsh here, and I am sorry for that. But, there would be no certainty about when or if suitable recipients could be found. My kids and me, again, talked a long time about that issue.

I really wanted to hold her hand while the machines were turned off and her heart gave out. I would not be able to do that while she was in an operating room. All the while, I would be outside wondering when, exactly, the final end came. I could not accept that.

Call me selfish, unfeeling, whatever, that is OK. The whole thing was just a very unpleasant issue that I did not expect to deal with on top of everything else.

Also in Ohio, and maybe in other states, when one chooses organ donation on a driver’s license form, if that person is declared legally brain dead, the surviving family has no choice but to let the organ donation happen. Sheri was not at the legal stage of being declared brain dead and the doctors said it would take at least a day’s worth of tests to do that.

So that is my organ donation story. I do not want to discourage anybody from choosing to do that, it is very generous. But you should probably find out how that works and discuss it with the people who will be in the hospital trying to deal with all the complexities going on when you are near the gate of passing on.

Joe

6 Likes
5

First most, I’m so very sorry for your loss. I kept reading your very descriptive narrative looking for the happy ending. I’m sorry it was not.
I am a survivor in the sense that my aneurysm was repaired before it ruptured. That was eight years ago this past July. I am one of the lucky ones- I know that- and as a result, I’ve tried to spread awareness to my neighbors, friends and acquaintances about brain aneurysm statistics. I also have continued to donate to this organization because it was so helpful to me during a very difficult time in my life. I still get emails with notifications from BAF and I read many of them and occasionally I respond, trying to offer whatever help I can. I like to stay connected because I know the information I obtained was so very helpful in deciding how to proceed with my particular aneurysm, which was quite rare at the time.
May I add, that I know your life has been thrown into a whirlwind, and there is so much grieving to be done. However, I know that after my aneurysm repair, it was recommended that my young adult daughter and son be tested through MRA since very often these conditions are hereditary. They both tested clear and it was quite a relief to me. I’m not exactly sure, but I know they need to be checked again in the future at some time. You also mention a son and a daughter. I continue to be monitored as well and so far so good. Please, take care.
Patty.

5 Likes
6

Thanks for the condolences. The doctor did tell our two children to be screened or tested or however that works. Thanks.

3 Likes
7

They do an MRI and check the arteries on a screen. My Neurosurgeon also told us to contact my family and tell them to get tested. My oldest niece asked her Neurologist who said they’d check the next time she had a bad migraine, my youngest niece told her son’s Neurosurgeon I think it was and she and all her boys had an MRI within two weeks, my nephew thinks it can’t effect him. My oldest niece did contact my two remaining siblings and they also blew it off. Unfortunate since my remaining brother had an ischemic stroke a few months later. I wonder if the MRI would have shown his blockages.

I do know that all the information that the hospitals slammed BH with the day I ruptured was overwhelming. The hospital I was flown to gave BH a few pieces of paper that were misplaced and have never been found. BH couldn’t remember much except they warned I probably wouldn’t make it and if I did I may very well be a vegetable or close to it. Then after my procedure they still weren’t sure I’d wake up or know anyone. When I did wake up, all the Residents were hanging around it seems, BH asked who I knew and if I remembered the promise we made each other on our first date some 30 years ago now. (We promised each other we’d dance in the streets when we’re 80.)

In all the years I have been on this site, there’s only been a handful of members who have been able to get a procedure the day they rupture, most of us have to wait until the next day.

In NC, we do have the organ donor on our license, it’s a red heart. I did not know that they kept the body alive for more than a few hours after the individual was pronounced dead to dole out the organs that could be used. I thought the organ banks kept them on ice. I will definitely ask my PCP about that, thank you so much for sharing your knowledge! If such is the case here in NC, I will go with the donating my body to a medical school as I wouldn’t want BH to have to go through the waiting. I’ve had several relatives in my parent’s generation that were organ donors, usually they could use their eyes and it was done very quickly. Seems like we will be having a long discussion about that, again thank you so very much…

8

The way organ donation was explained to me is that the heart is the critical organ; it has to be transplanted quickly and cannot be “iced” or preserved for very long. Testing has to done on both the donor and potential recipients (presumably already done) and a match found. Then the recipient has to get to a hospital stat and be prepped for surgery then the heart transfer can take place. I don’t know how long a heart can remain viable outside of a body or how far away the living patient can be even with air transport. A lot of steps.

Kidneys, livers and other vital organs are not that time sensitive and can be banked for a short time while recipients are found.

The testing process alone was going to take some time and we were exhausted and really wanted her to go in peace. Yes, we were probably selfish. So many things I am feeling like a failure about. That was one more.

9

Make sure your kids have an MRA. It is on the same machine as an MRI, but it is a critical distinction. The A stands for angiogram which is necessary to see aneurysms. They do not all show up on MRIs. Mine did NOT and I was told by a neurologist i was fine. Luckily i kept complaining of issues to my GP who reviewed what was done by the neurologist and she mentioned that aneurysms and AVMs don’t always show up on those, and ordered an MRA. Lo and behold, i had aneurysms. Had I listened to the neurologist (supposed experts) and just dismissed everything since i had supposedly had it “all” done, I may not be here. Mine was caught just in time.

CTAs also show aneurysms.

1 Like
10

Yes, Judi, mine was misdiagnosed for 6 months after having two MRIs as a meningioma by two neurologists, 2 neurosurgeons, and 2 radiologists! Like you, I persisted and a third neurosurgeon finally suspected an aneurysm and ordered a CTA. You are correct in that the MRA is the way to go for screening. Some are done with contrast, some with out.

11

My BIL was up in Chicago for a triple transplant, it was the only hospital that would do a triple organ transplant. No one in Georgia would contemplate three, just two. Unfortunately someone in the ICU sent him down to the ER without notifying his specialist. He was supposed to stay isolated from everyone as he had no viable immune system. Staff and family had to wear gowns, gloves and masks. He contracted a cold, yes a simple cold, which was pretty rampant at the time of year. Three times he was set up to receive a transplant he was running a fever and couldn’t get the new organ. Gary was born with a hole in his heart and had undergone multiple surgeries. The medication that kept him alive all the years did his liver and kidneys in. His wife was there and his two siblings when they too had to make the decision to pull the plug. I tried to prepare them for the release of muscles that occurs, but no one is really ready for that the first time.

There is nothing selfish about allowing someone to go with a bit of peace and dignity. I thinks it speaks volumes of the love you have. Please don’t kick yourself for showing your love, we understand and in my spiritual belief system, so does Sheri. I know you’re exhausted and probably not sleeping well. There’s been a lot on you since Sheri ruptured and then the funeral arrangements. It’s exhausting just to hear so many people tell you they’re sorry for your loss. They don’t know what else to say. My Dad’s family who are of Irish decent always say “I’m sorry for your troubles”. They also have a wake which I enjoy, hearing all the stories to me it’s honoring the individual. I’m raising a glass to Sheri.

12

I’m so sorry for your loss Joe, and I too, don’t understand why they didn’t coil or clip, but every situation is different.

And if I may be totally honest, I fight with the fact that I survived, almost daily. I’m grateful that I have been given a second chance at life, more time with my children, and grandchildren, however, a lot of the time I wish I hadn’t, because everyday task, are now a challenge for me. Ive lost family and friends, because I’m not the same person I was, and likely never will be, this is hard for people to understand. I miss the old me!

From the heart…

25 years of marriage, 2 children, and what sounds like, great friends, and many memories. You will grieve, you will cry, you will be angry, but consider the way she would have wanted it, take the time to enjoy the memories you made together. :heart:

Karen

2 Likes
13

Sincerest Condolences to you Joe🙏🏽
I am so very sorry to hear if your loss.
I pray you find comfort here, as we all are here to listen, share and offer support.
May God Bless and Keep you in his care❤️

2 Likes
14

I agree with losing family and friends and wanting your old like back. I hear from very few friends anymore. I miss my social like. I just don’t know what to do with myself every day. Besides the coiled cerebral aneurysm I also ended up with Orthostatic tremors. It’s a whole another world of complicating crap. I’m surprised my aneurysm didn’t burst. Really. So I guess I’m here from a reason. Just wish I knew what that reason was. Because currently I hate life. I hope something will bring some spark back to my life.

15

It is hard to understand the differences between events of the different people who rupture. Saying I am sorry for your loss just never seems to be enough but I truly am sorry for your loss. Take care of yourself and be safe.

2 Likes
16

Please reach out to a therapist, there’s absolutely no shame to seeing one and they can be quite helpful. When we’ve dealt with an aneurysm just to get another rare thing to deal with, it can be extremely overwhelming, frustrating and just one straw too many on our back. I hope you can find the joy in the simple things again.

2 Likes
17

Bless you. There are no words to heal your heart. Just know your in my thoughts and prayers.

18

I am so sorry to read this. When mine ruptured they told me they had to stabilize me before they could operate. I would say that is common

1 Like
20

Hi Robin,

Every single day, I ask the man above, WHY? It’s been 3 years now, and for a while there, I was so lonely, still am, but I finally found something to do with myself. I was in Staples one day, there was a display set up with a 12 x 12 piece of canvas, actually, there were 6 of them, and each one showed the steps on how to paint a simple flower. I thought, I can do that, and I had canvas and paint at home. It wasn’t the best, but it wasn’t half bad. I’ve been painting ever since. It takes me away, I can sit there for hours, it’s so calming, and the crazy thing is, I’ve never painted, or was able to draw, a day in my life.

It took me a long while, to realize the old me wasn’t coming back. I made drastic changes, that I shouldn’t have, I left my husband, moved to Colorado, and I even lost my family, including my adult children, they just didn’t want anything to do so with me. I went into a deep depression. It was at this time I started learning, teaching myself, I studied, I read other peoples survival stories, I read a lot about cognitive behavior, I listened to doctors on podcast, and I read books on just mental health, I was like a sponge. I also started journaling. (This was at my 3 year mark) I was determined now, and I wanted my kids back, it’s always been the 4 of us, and I wasn’t going to lose them permanently. At this point, my main goal, was to find out why, why it happened to me, why am I angry all the time, and how do I fix it? In my eyes, I no longer had a purpose, I no longer wanted to be alive.

I’m sharing this with you, so that you’ll know there’s hope, but it’s a lot of work, and it will consume your days. Maybe something I’ve done, might work for you. Also, I’m definitely not saying that I’m good now, but I’m a lot more educated, and I’ve learned how to catch a situation before it happens. I stay calm, and do my very best to change my thoughts to positive. I sometimes have to stop, and just breathe, it helps me relax, I’ve made a lot of progress, and all on my own.

I had a Subarachnoid Hemorrhage, with a stroke, and laid in bed for 4 days before going to the hospital. I was diagnosed, at the time, with mild cognitive impairment, my short term memory wasn’t good, and when I got angry, I would black out.
I too have another health issue called “CRPS”, which I’ll have for the rest of my life, I found this out 6 months prior to the rupture.

Skipping to now, which is about 8 months later. I learned that I need to love who I am, before I can love anybody else. This was a little difficult, because I’m still angry about it happening, and my whole life was ripped away from me. I found a couple of support groups, which I feel are a must have, because we can all understand each other. I couldn’t find anywhere to stay, so I ended up at m ex-husbands house, he didn’t want me either, I begged, so this is where I’m at. I spent a couple of months trying to find some type of home for people with my condition , but what condition is it? I finally called Medicare and told them I needed help, or I was going to take my life. I received immediate help. I started with a neuropsychologist, at The Brain Wellness Institute, she actually did two intakes with me, and then they had me go in for a 5 hour long cognitive testing appointment.

As of today, most of my family is speaking to me, but it’s no longer the same, don’t know if it ever will be, and at this time, I don’t want to see any of them. I got my cognitive results, and I have some issues.

I’m overstimulated by my environment, I have attentional challenges (ADHD), I have Mild Vascular Neurocognitive Disorder, major depression and anxiety, and sometimes I can get so angry, that I somehow, mentally black out. I’m currently waiting to see a psychiatrist, cognitive behavior therapist , physical therapist , and occupational therapist.

I’ve changed even more since I’ve been here,
I haven’t had an anger outburst in about 7 months, and with the cognitive studying, I’ve learned how to catch it before it happens.

With all this being said, it’s a tough road, but you can do it if you give it your all.

I hope some of my story might help, and If you ever want to talk, I’m always here.

Karen

1 Like
21

Karen, You really painted the road to recovery very well. The challenges we face everyday requires determination and you have become one very determined young woman!