My Sister, Wendy
Wendy's sister, who is the author of this narrative, was diagnosed with a brain aneurysm in April 2001: Hellen's story
13 November 2000
My sister, Wendy was diagnosed with a brain aneurysm last Saturday. On Wednesday they performed the surgery and the aneurysm (which is located behind the eye) busted. She was on life support and we were told her chances of making it were very slim and she was in a critical condition. The next morning she was pulling at her ventilation tube, so they took her off life support and let her breathe on her own.
She has astonished the doctors who told us she would be in ICU for at least a few weeks. She can move her hands and legs but her left side is very worrying to me and to all our family. She is very slow with her left hand and her left leg sometime does not move when they ask her to. We have been told that she might have had a stroke also during the surgery and they have to wait for a scan to tell us.
It seems to be every time we think shes doing better something seems to put us back into our place and we realise that this is going to be a long time thing. She can't speak yet and she can't keep her eye open for longer than a few seconds, but when she does she can look straight at whoever is there. So I'm taking that as a good sign.
We didn't know what to expect and the doctors here are pretty scarce on their information. We really need to know what to expect in front of us. I know its going to be a long haul, but I didn't even know about the short term memory loss until I read it here. So I thank you all for sharing you're stories to help the relatives get some kind of idea of what to ask doctors and nurses. I guess its just a case of wait and see what happens in her life and how she copes with it all. She is only 27.
They are going to wait for the brain to return to its original state before they put the piece of bone back into her skull. First they told us it would be 5 days, now the nurses are saying I wouldn't count on it for a few months yet. It's all conflicting advice and the doctor who performed the operation is a great surgeon, best in Australia, but his bedside manner is atrocious, and he is impossible to catch.
Anyway I must get going back up to the hospital and just sit and chat to her. She can squeeze my hand to let me know she's heard me. So I'm guessing that's a good sign. I will keep you posted on her progress
Update 21 Nov 2000
This is just an update on my sister Wendy. Unfortunately she passed away today (Monday 20th November). She had a major stroke again and it was too much damage for her. I do thank you all for you're emails of support and helping me and my family to understand what was going on much better. Please all take care. But her loss was not a total waste, we got to say goodbye and also decided to donate her organs, so some family is going to have another chance. Please all take care and I wish all of you all the best for yourself and for the ones affected by this terrible thing.
It's been a while since I've read this story, but I thought I should add some things to it, as my first narrative was written right in the middle of trying to find information and trying to get "answers" on how to fix it and how long it would be, little did we know that was not to be. So lets start from the beginning.....(sorry for the longness of the story, had to get it all out)
I was rung early Saturday morning in October 2000 by my brother in law telling me my sister was going "nuts", and a ambulance was being called. I could hear my sister in the background yelling, and thought this is really weird, she's supposed to be getting ready to go on her holiday (Wendy was going on a holiday with 2 friends, something she was looking forward to for months) So after getting off the phone, I went and told her son (he was staying with us for the night) that mum was sick and was at the hospital.
I must admit this was nothing unusual for my sister, she had a kidney taken out when she was 17, had many kidney infections. So I rang the hospital later on, as I figured they would be doing tests and the like and probably wouldn't be able to see her till later. I got a hold of the ER desk, and they put me thru to my mother, who told me she was doing OK, but they would be running some tests.
From what we can piece together, she was in the shower and got out and her aneurysm ruptured. She did not recognise anyone including her husband, did not know the house she was in and was screaming for my mother (thats when my brother in law called me). The ambulance came and she started to kick in the walls and basically throw herself around, so they called in back up, and they had to tie her to the stretcher to take her to hospital. (something outta "Silence of the Lambs")
The hospital was going to send her home with some pain relief, but due to my mothers insistence, they did a CT scan, where they found the blood surrounding the brain. My sister was admitted to hospital, and it was then that I went up to see her. She was in a bright room and complaining of the light, I wish I could of turned off that light, but the old lady next to her complained she wanted it on to read.. (hindsight, should of just turned the light off) She didn't remember anything of being at home, and the last thing she remembered was being in the shower. They moved her to a private room, one where she could sit in darkness and we waited for the neurosurgeon on call to arrive.
He arrived, with his resident, and proceeded to tell my sister, my mum, my dad and step-mum and my sister's husband that "if you don't have this surgery you're going to die, but if you do you might die" Ok family almost died right there, sister didn't look too stressed, ok I think...this isn't good. Somebody ask questions, nobody asks, so I figure, you've got some kinda brain in there...use it when its important, so I ask the doctor, "well whats the chance that she could die?" Oh roughly 10% he replies. Kinda changed everything when he said that, figured that was damn good odds, looked at it as if ok 90% she'll be fine...nothing to worry about, she'll be bossing people around soon enough. Doc left and was left to talk to the resident, asking as many questions as I could without alarming the family (thank goodness I took biology at school) My sister signed the consent form, and the surgery was to be on wednesday (this was saturday by the way)
Got ready for the surgery, visited my sister a few times and called her Hannibal, due to the reference of her being bound in the ambulance. Tuesday night the surgeon comes in and says, won't be doing the surgery tomorrow, and walks on out. Ok...but this wasn't helping my sister, the headache she had was tremendous and no pain relief was working. Friday comes round and they decide today would be the day, I never got the chance to see my sister before she went in, figured all would be ok, and not much use going beforehand as it'd be too busy with friends and stuff there. Got the phone call about 3pm saying "get up here right now your sister is on life support and its not good" Lets just say the hospital is 20 mins away from my house, I was there in 5mins.
Funny how people look at you when you run into a hospital. Ran up to intensive care to find so many people there, with no one with a answer, found my mum amongst the people, where she told me they don't know whats going on apart from the surgery didn't go well. Finally an hour later a nurse came out and said the doctor would be coming to speak to us very soon, but we were allowed in two at a time. My mother and brother in law went in first, and when they came out I could tell by their faces this wasn't good at all. I went in on my own, and saw my sister laying there in a way I never thought I would see, tubes everywhere, I'm sure you all know the scene. Now normally I wouldn't cry, but this broke me down. So I turned away and pretended to look at something else, then sorted myself out and walked into the room. Wendy was awake, and I knew if she saw me break down, then things weren't good. She squeezed my hand and I sat just stunned for a while, then talked to her. I can't remember what about, probably stuff like God Wendy, if you wanted attention you should of just asked.
My partner arrived at the hospital, so my comfort had arrived, although it seemed like it was me comforting everyone. Finally the doctor came out to see us and told us they went in to operate and the aneurysm ruptured. They managed to clip it but they wouldn't be sure on the extent of the damage. They weren't sure if she was going to live or die, and everything was a case of wait and see basically. The aneurysm was on the right Communicating artery
It's funny how they said that to us, but we all knew Wendy, if anyone could pull out of this, it would be her. I went home and got her son, and told him what was going on and drove with him up to the hospital.(he's 6 years old) I explained what mum looked like before he went in, and his dad took him in, where the nurse explained all the tubes to him and what they all did. I walked in and sat and held his hand, and we talked to wendy for ages. She woke up and started pulling at the ventilator tube, and it was really bothering her, so I told her to squeeze the pain into my hand, just like she had done to me when I was having my kids. Must say it was the only time I was happy that my sister was hurting the hell outta me. I asked the nurse if they could take it out, and they called the doc, a few hours later, it was out and she looked a lot more comfortable.
Ok things were looking good, they told us she might not make it and here she was astonishing them all. I returned many times mostly at night, at ungodly hours, as everyone was visiting, something we had to stop. Sometimes she was awake, if she was asleep I would just leave. Then it dawned on me, no one has told her what happened, shes probably laying there thinking, whats going on. So I sat and told her all what happened.
The next day she was getting better and we got a call from my aunties in Scotland saying they were coming over. Had a joke with my sister that gee they couldn't come out for your wedding but they could come out for this. She smiled , so we knew things were going in, but she couldn't speak, so that was a worry to me.
A couple of days later they moved her down to the normal ward, and were really happy with her progress. At first her left leg would hardly move, and her left hand was a little slow to reacting. As for the normal ward, don't really have a good word to say here, she was never ever looked at the whole time I visited her. I had to chase a nurse down to get answers, and when my mother came later in the night when she asked how wendy was doing, she got "I dont know", which well sent my mother over the top. This was supposed to be the nurse looking after my sister, and she didn't know? It was when I got a hold of a nice male nurse who actually sat with me and explained everything. It was then I decided to search the internet for some answers, and found this site.
My sister was down in the ward for a few days, and thats when we noticed a complete change in her, her weakness had moved from the left side to the right side, and she was very shaky, and would look at me and my mum like we were complete strangers, and try and pull away from us. That was hard to deal with. They moved her back upstairs after we reported to the nurses about the weakness changing sides, and was back into intensive care that night. We were called upon by the doctor, who proceeded to tell us about vasospams and strokes and death. Wasn't liking this guy by now, and now it was touch and go.
The next day they told us that they were going to send her down to Royal North Shore Hospital in Sydney as they had some kinda new technology where they could open the vessels, so the vasospasms would stop shutting things down. So they were getting ready to send her in a helicopter, and I sat with her while they were getting things ready. She seemed to recognise me again, but was still very shaky with her hands, The helicopter crew came in and I noticed my sisters shaking got worse, so I held her hand and explained the situation , who they were, where she was going and why. She calmed down, and I joked with her, well you wanted to go on a holiday, ok this isn't the one you wanted, but hell its flying first class. I kissed her goodbye and they wheeled her out. Little did I know this would be the last time I would see my sister awake.
I drove to her sons school and picked him up and saw them loading her into the helicopter and her daughter (who's 2) kissing her goodbye. I asked her son if he saw the helicopter and he replied yes so I told him his mum was in it and going to Sydney. My brother in law and my father drove to Sydney straight away. We decided they were going to do this surgery and she would be asleep anyway, so we would give ourselves some time to recover from the no sleep, stress and goings on.
That night the hospital in Sydney rang and told us to come down tomorrow and to bring the kids. I guess we all knew what was going on , but just didn't want to face it. So at 4am I woke my nephew who was staying at our house and drove to my mothers house to pick up my mother and aunties and then drove down to Sydney with my father stepmother and brother-in-law following. We got there to find my sister completely asleep and again with all the tubes coming out.We were sat down by the doctors and nurses and told that there was a lot of damage done by the vasospams, and they tried their best, and would be doing a test tomorrow morning to confirm brain death. Ok this wasn't what I wanted to hear. It was then that they suggested I should get tested for aneurysms myself. We walked out of that room all a little stunned, and I asked my nephew if he knew what the doctor was saying. "Yeh it means my mum might die" I had to explain to him that his mum was going to die, and we both went off into a private corner and had a cry, wiped our tears away before anyone could see us.
We booked ourselves in for the night at the accommodation place, and I kept my promise to Wendy's friends and rang them and told them it was time to say goodbye. I promised to let them see her before it was too late. I took them all up and let them have their time, must say I don't know how I managed to stay together, but I did. Guess I was numb from the whole thing. Wendys children went up to say goodbye, her son understood, but her daughter didn't... that bit broke me up.
My partner arrived after finding a babysitter for our kids, and the family sat down and let it all sink in. I went back up to visit Wendy, and her hand was still warm. Ot was hard to believe that this was actually happening, and I told her the things I needed to say and kissed her goodbye. Before I left her hand turned cold.
We all settled in for the night, but late late at night we had to get something to eat. So I drove down the street and found a pizza place open, but a bar nearby. So me, my partner and my mother's friend and her daughter all sat down and had a drink. It would of been something wendy would of done, and it sure did help me sleep later that night.
We woke in the morning and went to visit Wendy, at 10am they were taking her for her test. Oh I so wanted it to be wrong, for her to still be with us, but deep down I knew she wasn't. Around midday they came back and sat us back down in "that room" and told us there was no blood going to the brain, and it was then my brother in law discussed organ donation. It was what Wendy wanted, any more kidney infections for her and we would of been the ones wishing someone would say yes, and after the whole family agreed, we sat and filled in the forms and it was all over.
I went back in to see my sister, I knew she was gone, but I would never ever see her face again. I did go back with my mother just before the funeral and saw her without the tubes, without the beeping machines. Three days later we had the funeral, and all her work friends, friends from bands and her old teachers from school were there. I guess it was a strange feeling organising a funeral for my sister, I had never ever imagined I would be doing it.
Wendy was 27 when she died,she was a service manager in a large automobile company and was a singer with a lovely voice, but most of all she was my big sister.
With a couple of local people who felt there is not much help for AVM and aneurysm patients, we have set up the Newcastle Aneurysm & AVM Support Group.
Discussion, comments, or questions: Hellen McMaster
© Copyright 2000 Hellen