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My twin Tina


tishacf
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Yesterday I really thought Tina, my twin, was making some progress, even though it was only that she opened her eyes for a few moments and squeezed my hand. I couldn't have felt more happy when I left the hospital.

This morning she was supposed to have a trachyotomy and then said they would reduce her sedatives. When my daughter Kristie and I went to visit her this evening we were both so looking forward to seeing a change for the better, no matter how small.

I was so suprised when we went into ICU and saw Tina still with the ventilator tube in her mouth. The nurse explained that they couldn't perform the operation today because they had emergencies in. She said that it wouldn't be until at least Monday and possibly even Tuesday before the operating theatre would be available. Of course I understand that, but stupidly felt like I was going to cry.

I sat reading to Tina again but today there was no apparent response at all. She was just laying there, totally still. The only thing we noticed was that her right arm and hand was so swollen which the nurse told us was from all the canulars she had had and that they had removed them. She said she would raise Tina's arm on a pillow which should help reduce the swelling.

We sat with Tina and I held her hand but tonight she didn't squeeze it at all.

Logically I kept telling myself that I shouldn't expect too much, but in my heart I was so devastated because all day I was wondering how she'd be and had expected at least that she wouldn't be struggling with the ventilator in her mouth and down her throat. I cannot imagine how uncomfortable that must be.

I feel so low tonight. I suppose I should have phoned the hospital before we visited so at least I would have been prepared. Another lesson.

I sent emails to so many people tonight asking again for them to pray for Tina and to send healing.

One day at a time.

Tisha

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Hey Tisha

I know that you must be feeling really low at the moment, but try to stay positive. Believe it or not Tina has done the hard part - she survived. The next few months are going to be tough for you both and the rest of your family - but remember that the road to recovery is a long one, but she's allowed to make as many pit stops along the way as she needs to. I always say this to people because a friend once said it to me and they were so right.

When I had my bleed in August 2006 I was determined that it wasn't going to claim a year of my life - how wrong was I???? The first year was the hardest and it wasn't until I was 18 months in that I felt I'd turned a corner. I'm still not 100%, I have emotional issues still and if I don't get the right amount of sleep I can have a headache for days.

Think of whats happened to Tina as a heart attack in the head - it needs rest to mend and when she responds it because she has the energy to. Reading to her is a lovely idea, she knows you're there but she doesn't have to respond.

Don't get disheartened as its very early days and Tina will rest and sleep so much in the coming months - for six months I couldn't stay sat upright for longer than three hours without feeling shattered and used to sleep about 12 - 16 hours a day in total.

We're all here to support you both and answer any questions you may have.

Take care - and make sure you look after yourself too.

Love Sami xxx

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Thank you for your reply Sami. It is so good to hear from people who have been through this themselves. Can I ask - are you the man or the woman in the photo? How old where you when this happened?

From reading this site I gather that patience is going to be so important and that is of course something I am going to have to learn. My daughter has always joked that I had a patience by-pass when I was little, so I know I am going to find that tough.

Something Kristie (my daughter) said yesterday was that Tina had told her she had pins and needles and slight numbness down one side for a few days about a week before this happened. Kristie had told her to go to the doctors, but Tina, typically, didn't think it could be anything bad and had too much to do! Do you know if its possible to have any kind of warning of something like this or maybe it was just a coincidence.

Thanks so much for your support.

One day at a time.

Tisha

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Hi Tish

Sorry to hear that Tina has to wait for the Trachi it must have been so disappointing for you seing her still on the ventillator. I agree with everything Sami has said the first 12 to 18 months are really hard in the road to recovery.

I'm like you very short on patience which was very frustrating in the early days as if you push to hard or do too much it completely wipes you out. What Tina felt leading upto the the SAH may have been a sign but a lot of the time it just happens really suddenly without any warning at all.

Carry on doing as you are reading and talking to Tina as I'm sure she knows you are with her even when she can't always let you know. Will be thinking of you all and praying for Tina's recovery.

Janet x

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Hi Tisha

I'm the woman in the photograph and I was 35 when I had my bleed. I'd been experiencing a really bad headache all day on the night I had mine - but headaches are not linked to SAHs for some weird reason!!

I've never had any patience at all - always had a very short fuse and got easily worked up about things - since I've had my bleed and realised that I can't control everything in my life - I've kinda chilled out a bit and come to accept what has happened to me and that I'm never gonna be the person I was before. Another bit of excellent advice is - make sure that Tina keeps her sense of humour through her recovery - try to make her laugh and smile on a daily basis - all to do with endorphins really but its a mental thing - laughing really is the best medicine and it helped me to come to terms with things a lot easier than stressing about them = such as the memory thing - I laugh know about being an air head and forgetting things whereas before I'd get really upset and down about it - before the SAH my memory was superb - I never forgot a thing - appointment, phone number, birthday, anniversay nothing - now I write everything down (which is more habit than need now as my memory is nearly back to how it was pre SAH, but there are still things I forget).

Always here to offer support and understanding hun - feel free to ask anything you want to or to get anything off your mind.

Take care

Love Sami xxx

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Guest ElaineW

Hi my mum had her SAH a year ago and your Tina has done so well to have come this far. I honestly cannot tell you things will be easy, the hardest thing I found to keep my chin up with was a good day followed by bad. There will be lots of ups and downs but you will get through them. My mum did not communicate for about a month - she was 2 weeks in pretty much a coma and then she also had a trachestomy so communication was only by nodding until a speaking valve can be introduced. The best advice I can give you is just try to take each day as it comes, if you get to the hospital expecting better things and find Tina has made no progress or things are the same, don't get downhearted - things will improve it just takes time - and lots of it. Just take in photos, talk (rubbish if necessary) I know I rambled on lots of the times, read her the news, rub her hands and her face, she will open her eyes again or give you some response, I am sure they know you are there, even take in some of her favourite music. I know how upsetting it makes you feel when you are sat around a bed looking at someone you love looking so lifeless but she will get there. Look after yourself too, it is so easy to fogret yourself - she will need you when she comes home. Thinking of you both

Elaine & Maggie

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I have just come back from seeing Tina again tonight. We were so disappointed that since last week they still hadn't done the trachyotomy but as its turned out it looks like she won't need it. Today they removed her ventilator!!! I couldn't believe it when I went in and she had an oxygen mask. Her eyes were open and she definately focused on me.

The nurses said she was doing really well but that they couldn't get her to speak at all. I started chatting to Tina and asked her to say hello and she did!!! All the nurses were smiling and clapping and Tina looked so please with herself.

She did come and go a bit, at times looking totally lost, but at others looking so pleased to see us. She tried to say something else and repeated it twice but not a whisper came out - but lip reading it looked like she was saying "I'll phone you" - who knows??

She did spend quite a bit of time just staring at the wall, but when I asked her to look at me she turned her head and did, even if it was very slow. Also when I told her we had to leave she gripped my hand really tightly - so she obviously understood.

I pray that her progress continues. For the first time in ages I felt that my sister was "back".

What I wondered was, for those of you who have had this themselves, is it frightening becoming more aware whilst you are in ICU? Do you have any memories of that time?

One day at a time

Tishax

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Hi Tisha

That's good news about Tina :D

Things can be up and down in the early stages and it sometimes seems that recovery goes back a step but it is quite common. I remember almost nothing about being in ICU, except when they removed the ventilator and I started to breath for myself and I don't recall being frightened. Once I was moved to HDU (High Dependency Unit) I would have times when I was quite lucid, but also times when I was very sleepy and didn't respond much to visitors or even remember them. The lucid periods gradually become longer.

As you say, one day at a time. Don't be worried if some days she is not so responsive.

Regards

Keith

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Hi

Brillianat news :)

I dont remember being frightened i think the tiredness and the need to sleep and to heal takes over so try not to worry about your sister being frightened. Its brilliant news thats shes off the ventilator thats a positive step forward. Take each day as it comes and keep reading to her and talking, well everything you are doing it will comfort her and you. Take care

Love luck and laughter

Michellecxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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Hi Tisha,

Brilliant news :D I don't want to dash your hopes but please remember it is a rollercoaster recovery ride and there will be days when Tina isn't as great as the day before.

As for the ICU bit, I instantly remember coming out of theatre into ICU as I had a really bad reaction to the anaethetic (spelling??) and was bouncing off the bed. They had to wrap me in a heated blanket and it was really hot :lol: but it stopped my reaction! I also remember my mums shocked face when she saw me in ICU and Simon in a silly gown :lol: Funny the things you remember.

When I was moved to HDU, it was the same time as Richare Hammond's car accident so I remember when that was too. Could win me a quiz!!!

I agree with Keith though I slept loads and often far asleep on people when they came to visit!

Stay positive

Love and hugs

Laura

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Thanks for all your replies. It is so nice to know that Tina will not, hopefully, be frightened - because of course to me ICU looks so terrifying with all the machines and all the drips and drains etc etc

Tonight I saw Tina and she had just been moved to HDU which I suppose is yet another step in the right direction. She didn't look at all well, and every so often she started shaking. The nurse explained that she had had a seizure this morning and that they increased the medication to control them. I would have asked some more but the nurse seemed very busy. She also said that Tina has a temperature and she is on two types of antibiotics until they get the results of blood tests she had today to see what type of infection she has.

Tina looked so tired tonight and although her eyes were open sometimes she didn't appear to be focusing on anything. I really don't think that she was aware that we were there at all.

Thank goodness for all your comments because I understand that there will be good days and bad days so I tried not to get too down tonight.

One day at a time.

Tisha

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Guest ElaineW

A move to HDU is most definitely a big step forward, she is doing well. Let's hope a few better days will be round the corner.

Elaine

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Hi Tisha,

I must admit, that I didn't feel at all scared when I was in hospital ...... the care in HDU is pretty much 1 to 1 and I felt quite "safe" .... Just glad that somebody was looking after me and sorting out my head.

I also had seizures, but can barely remember them ..... they certainly didn't hurt and I had no pain even though I felt a bit "weird, shakey & spacey" before they happened, they certainly weren't a scary experience for me .... I just blanked out... but probably a lot worse for those members of my family that were looking on .... all I can remember is being put on oxygen and my head feeling "clear" ..... I can remember the nurses pulling off the mask and me pulling it back on, as it was such a lovely feeling!

Just to say, that the seizure meds can also make you feel drowsy .... I doubt if your sister will remember any of the seizures ..... they're a lot worse for people looking on, then those that are suffering them .... I was on anti seizure meds for 10 months after the SAH, but was allowed to come off them, due to side effects ..... I've been seizure free, for over 3 years now.

Love K x

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Thanks again everyone for your replies - the comfort your words offer is immeasureable to me. I find it so tough to even imagine that Tina might one day be well enough to sit up and talk, never mind being able to leave messages on a forum like this! And yet so many of you have battled through this, either for yourself or a relative and come through which such positive and caring attitudes. You really do keep my hope alive.

Thanks so much Karen for talking about your seizures - just the word is worrying - and its so nice to know that you have recovered and sound 'normal' after all you went through!

I think I'm so afraid of ICU because our Dad was in an ICU unit when he died, 6 years ago, so every day it brings back some very frightening and sad memories. I can feel myself tensing up as we drive closer to the hospital and everyday, by the time we are walking towards the neuro dept my tummy is in knots and my legs feel like they are going to give way. Every time one of the machines attached to Tina bleeps I worry. Last night Tina yawned and both my daughter and I jumped! What a couple of wooses (spelling?) we are.

Its three weeks today since Tina had her coiling op. I still can't quite believe what she has been through.

One day at a time.

Tisha

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Tisha

My heart goes out to you and I am sending a massive hug x x x

Me and my sister are really close and I know she was there for me everyday x x I can remember when I came round that my sister was right there x x x

I dont know if you are allowed or not but when i was in ICU and can remember opening my eyes from time to time and seeing photos in front of me on a beam of my family and I know this sounds strange but I do believe that helped me alot x there was a photo of me and my 2 year old Jack and I smile eveytime I see it now x x Every little helps x x x

Keep positive

lots of love

donna x x x x

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Hi Tisha

I only lost consciousness for about 4 hours when I had my SAH but I have no memory of about 10 days or so. From my earliest memories, I don't recall fear. I think I was in denial as I didn't really believe I'd been that poorly. Tiredness was a big thing for me, I just wanted to sleep. Even now, nearly 5 years on, I still get tired quickly. Then confusion sets in and I repeat myself. My family know when I'm tired as I sound like a broken record.

Apparently I had a seizure in ICU, although I have no memory of it. I've not had one since.

Tina will need time to recover and she's lucky to have such a caring sister to look after her. It is very much a 'one day at a time' process.

Take care

Kim

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Guest ElaineW

Glad to read your laatest update and that things are lookin gup for both of you. I can relate so much as to how you feel when you approach the hospital and hade feelings identical to you. My car "beeps" if I don't put on my seat belt and even that reminds me of the hospital buzzers going off even now. I think a lot of it is the uncertainty of how you will find things, I couldn't wait to get into the hospital but then when I was there I just wanted to turn back. I think ICU is very daunting. Mum has no recollection of her hospital stay at al but I can remember each day so vividly. I hope Tina continues to make good progress, though she has done brilliantly already. I kept a diary for mum when she was ready to read it, it took some time before she wanted to be told anything. Will look forward to hearing more from you. Take Care

Elaine & Maggie

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Yesterday my brother-in-law Woody went to see Tina and she was non-responsive again and very tired so I decided not to go last night, which I actually found really tough. As much as I dread the hospital I'm always so pleased to be able to see Tina and missed her so much.

Today it was Woody who couldn't visit because one of their children has a highly infectious virus, and it looks like he'll be unable to go to the hospital for at least a few days. Better that though than give Tina any more problems.

This evening Tina looked so much better than on Wednesday. Her colour was good and her eyes were wide open and very clear. Although she slowly moved her eyes I did feel she was actually looking at me on several occasions.

The nurse explained that she still hadn't spoken to anyone, apart from saying hello when I was there on Monday. Well that was all about to change!! She started by repeating some of the words I was saying and then I was talking about people we knew when we were little, and in particular an Uncles rather odd son, Rupert. Not only did she repeat his name several times, she then said as clear as a bell 'I remember Rupert' I was just grinning from ear to ear. Then the nurse came over and asked Tina how she was and Tina asked the nurse how she was too!!!

She made a few more comments about various things I was talking about and her face was also making different expressions. It was obvious she definitely had some understanding of what I was saying.

After about half an hour she was beginning to look very tired again so I told her we would be going and said bye and couodn't believe it when she said bye too!!!

This is all well above my expectations today. I know she was still coming and going a bit, and at times seemed completely in her own world but I do feel there was such a massive improvement tonight. The nurses were delighted too. She also had a scan and they said that there is no further deterioration in the brain, which again is such good news.

Such highs and lows all of this, and who knows what tomorrow will bring, but for now I am so thankful.

One day at a time.

Tisha

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hi tisha

im so pleased you are getting such a response from tina and that the scan is ok i know how it feels to get the eye contact and what it means to you and the family and that you are getting some good news abit a little at a time

i can only hope and pray tina comes round more each day and that tina talks to you more fantastic to read the news take care hugs and cuddles to you both thinking of you take care

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