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A terrified husband


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Hi

My wife suffered a SAH on the 6th Jan at 8am. Fortunately (although scary), I found her unconsious and with the help of paramedics managed to bring her round. She was very distressed complaining about a headache and neck ache. She then started to be sick and was taken to hospital.

Aftetr a scan it was decided to move her to Southampton Neuro Centre were she underwent coiling by angiogram due a rupture at 3pm on the same day.

Although she doesn't remember, she was totally with it (sleepy) and could answer questions and passed all the reflex tests.

She spent less than 12 hours in ICU and was moved to the obs bay of the Neuroward. Infact the Friday morning when I went to see her in ICU she was eating toast.

In the obs bay she spent 4 days in the obs bay were she slept most of the time suffering from headaches although she did have moments when she was totally OK.

Following improvement, she was moved to a normal ward were she continued to improve.

She was unable to take the ant Vasospasm pills as these kept dropping her blood pressure and as already has low blood pressure it was decided that taking these tablet could cause more harm than the risks associated with vasospasm.

She has continued to improve and was sent home 1 week and 1 day after her surgery.

At home she seems totally normal although very tired from time to time. She sleeps deeply and doesn't seem to suffer from any headaches much.

Fifteen days after her op, she was getting my daughter ready for nursery this morning.

Whilst I'm delighted with her progress, I'm also terrified as it all seems too good to be true.

I'm scared of this vasospasm occuring or anything else. I don't sleep and watch her most of the night. I so frightened to leave her even for 10 minutes and can't wait to get back to her. As you may have gathered - she is my world!!!!

The fact is whilst she is recovering - I'm the one who's the wreck.

Based on her recovery so far (15 days in) is she still at risk??? is it because we acted so quick she came through this so well?? i need reassurance. She's doing so well - laughing wanting to get up and do things etc. I don't want this to stop. She's always been strong and I'm so pleased that she's got through this without any problems but I continue to be petrified of taking anything for granted.

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Welcome Rog, you have come to the right place.

Reading the posts and threads will help you find answers in other's experiences. No one offers medical advice but the sharing of daily experiences during recovery is a huge help.

I had my NASAH November 10th no aneurysm (it was venous bleed) and was home on the 13th. I'm not moving at my old pace yet but started doing some things like walking the dog (slowly) by the 16th. Your wife will likely want to do some regular routine stuff just to make herself feel normal. I started doing laundry by the 20th because it made me feel normal! That was just so very important to me.

My husband has been beside himself with worry. I think for as hard as this has been on me he's had it worse. He could do nothing in hospital and felt totally helpless. At least when I came home he could care for me which helped his sense of helplessness. He was afraid too, we had no information and didn't know what to expect. He came to the family doctor with me in hopes of learning something but she didn't know anything about what I had!

2 months and 22 days later my husband is now frustrated because I won't rest enough and listen to my body. I'm jeopardizing the one thing in the world he loves the most. Although I logically know that I struggle with finding the balance.

Your wife will want to be 'normal' (how she was before her hemorrhage). Tell her how you feel. Tell her you are scared. And please read the threads. There are other carers here and I'm sure you will feel reassured!!

Please post again, we all care here.

Sandi K. Xoxox

Edited by Sandi K
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hi rog

boy how you ring bells i know only to well how you have felt and still do my lin had hers but was not so lucky as your wife so to speak i am so pleased your wife is recovering so well its such early days yet and she is doing so well so far the sick feeling will be with you for some time and the sleepless nights there are a few on here that were treated at Southampton and they will pickup later and introduce them selfs when they log on yes you will be scared witless but only time will reduce the gut feeling and the fear of it reoccurring which i hope it never does your wife will feel and be very tired for sometime to come its the bodies way of trying to heal and recovery from such a massive injury because that is what she has gone through it again will take time they all say time is a great healer and reading on here that is very true

rog you must take time for yourself and try and take is easier believe me that is harder than you think try and get some sleep if anything happens which i believe is unlikely you will respond its natural the vaso spasm may never happen not everyone suffers one but the longer it goes on the better chance your wife has they only give the anti vaso drug for 28 days from the bleed so the more days she progress's is good please let her do what she wants within reason no sky diving :lol: but she will learn that her body will dictate what she can do and cant do yes she will sleep longer and more restfully but thats her brain trying to recover the only thing i can suggest is by taking one day at a time you must get some rest if you need to go out is there a neighbor or family member who will sit with her until you get back just to give you some rest and peace of mind you mirror how i feel and im 2 and half years down the line my lin is still with me i cant think of much more to put in for now but you must force yourself to rest and take some time out if you wish lins story is in carers support under my darling lin take care we are here i hope you enjoy the site if possible it may help your wife if she logs on as well take care best wishs

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Hi Rog

A warm welcome to BTG. Glad you have joined this site where you will obtain lots of helpful advice/tips and can read people's experiences of having a sah and also stories from a carer's perspective which you will find useful.

I can understand you being concerned about your wife and it is not surprising - you have both been through a traumatic event - and only very recently. However, it is good to hear that your wife is doing so well. I think you need to be cautious that she doesn't try and do too much in the early days - I only mention this because I know some (including myself) have taken a backward step later on - nothing major - just we tried to carry on as before -a little bit too soon for our injured brains liking and as a result ended up even more tired!

Despite suffering severe vasospasm myself at the time of my sah and taking tablets to combat it, I don't know enough about it to advise, although I imagine it to be highly unlikely that they would have discharged her if there was any risk whatsoever. I am sure your wife will be having a follow up appointment in the not too distant future which will give you an opportnunity to discuss any concerns. Perhaps you could start at list and jot down anything you want to ask as you go along. That way you are less likely to forget to ask the questions when you are there.

Try not to worry too much, just ensure she gets plenty of rests and drinks plenty of water and what's more, you need the rest and sleep yourself -I also think your anxieties will diminish over time. I wish you both all the best.

Sarah

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Rog welcome to BTG, it'a huge help to talk to people who are 'in the same boat'.

I wsa treated at Wessex Neuro too but had my anni clipped but I do know they won't discharge a patient if there is a risk of vasospasm. I wsa in 17 days in total & some of that in HDU after having vasospasm during my op. I was on the tablets for a short while but off them for at least a week before bein discharged. I also think the TDC's (trans cranial dopplers to measure bloodflow in the brain) are important indicators of how well you are doing, I wasn't discharged until my levels came down.

It would be fab if your wife could join us on here & share her feeligns too. I agree about the being tired, 7 months post op & I'm still fatigued. Like your wife I have no physical weakness apart from a problem with my eye (right one) & have tried in the apst to override the warnigns my body wsa giving & suffered the consequneces (total exhaustion for days). I now know my limits & accept I can't do everything I used to.

If you ever need support or advice Lesley ( the SAH nurse specialist at Wessex ) is always available to chat to you. You can always PM me too if you need to.

Take care & huge hugs to you both xxx

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Hi Rog

Welcome to the site! You have found the best place for words of advice and support.

I had my SAH 11th Dec 2009, however I was misdiagnosed and only taken into hospital for scans 15th Dec and was then coiled 18th Dec.

I suffered severe vasospasm during my op; as the hospital had noted my SAH as 15th Dec so would not have realised my op was 7 days post-SAH, which is actually prime time for vasospasm to occur!!

I was on Nimodipine post-op to reduce any further vasospasm.

I had my op at midday on the 18th Dec and came round at what I believe was 5pm. I have since learnt that my op was from midday to 3pm, but it must have taken time for me to come round fully, as i saw a clock above me which read 5pm.

I spent the night of 18th Dec through to 1am on the 20th Dec in Intensive Care and was then transferred to the High Dependency Unit where I spent a further 5 days.

I was discharged at 5pm on 24th Dec 2009, and continued the Nimodipine every 4hrs for 21days, at which time I went back onto my usual BP medication.

It sounds like you did act very quickly with your wifes condition and thus she was operated very soon after her haemorrhage, which must surely contribute towards a very good recovery. Lucky for her you were there and acted so quickly.

It is so easy for us to try to push ourselves too much too soon, but if we do not try to push ourselves to some extent we do not know what we can or cannot achieve.

As Sarah said, do make lots of notes for when you go for your wifes follow-up consultation. I took loads of notes and questions with me and made lots of notes whilst there too, as my memory was (and still is, to some extent) not brilliant!

Good luck for continued recovery for your wife, and do take care of yourself too.

Take care

Kel x

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Hi Rog sorry to hear about your wifes illness it is a scarey time, my wife had her sah 22months ago now,she had 2 aneurysms and had the first coiled and another clipped a few days later, it was the worst time of my life as i'm sure it was for you, recovery is different for everyone and your wife seems as though she's doing very well, the last 22 months has not been all steps forward there are times when things dont move forward or may seem that things have taken a step back but it was a serious illness and she has come through it but recovery can be long and drawn out for some and for others things seem to go much better so good luck to your wife with her recovery and remember there is no point in worry about what could happen as it probably never will, Best wishes to you both Rod

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Hi Rog

There isn't much more i can say that hasn't already been said, welcome to BTG, you've found us very early on in the journey, hopefully that will help.

The only bit of "advice" I would give is to talk to your wife, be aware that she will be having some pretty weird and worrying feelings, the type of thing a near death experience will give you.

If she is anything like me, these things will take a long time to come to terms with, let her know that you understand these concerns and tell her what worries you. She may well have memory gaps, I lost about a month, and don't even remember getting married, much to my wifes annoyance!

Remember you are at the begining of a long journey, it does get better, but don't worry she will have ups and downs, expect them and know that itr's just part of the journey.

Good luck and stay with us, she's been through the worst, it will now start to get better.

Good luck

Adam

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Hi Rog, glad you found us! What an ordeal you've both been through! Scary is an understatement, right?! I think your wife was very luck you found her when you did and got immediate medical attention. Glad to hear she's home and appears to be doing well. Hope her recovery continues that way. I know it must be very frightening for you. I was in ICU for 10 days and then moved to regular ward for 2. My daughter and partner were terrified when I came home - I was too. I was on the nimodipine for a month following my release. I had trouble taking it as prescribed, as well, my bp would go too low sometimes - and this scared us all. The neurosurgeon told us the first 10-12 days are when vasospasms usually occur. Obviously, we can't give medical advice here, but do check w/your wife's dr.s regarding any questions you might have as to meds, reactions, etc... She is lucky to have you there to care for her. I know it's difficult - my daughter dropped her college courses, moved back home so she could be here 24/7. I think in many ways it was harder on her and my partner than me. While I slept so much of the time, my daughter would wake me just to make sure I was still here! My partner was so overwhelmed, he was unable to do much of anything but go to work!!!

Hang in there buddy, we're here for you and your wife too. Hope to hear more from you as to her progress, and how you're getting on with everything.

Much love to you both,

carolyn

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Hi All,

Thanks so much for your responses - much appreciated.

Paul - I had already read your story and updates prior to posting my wife's situation. Lin has amazing strength. Infact you're both amazing people. Best wishes to you!!!

We're now 18 days post SAH and coiling and it's like nothing has ever happened!!! OK, she gets tired easily and sleeps more but apart from that - everything is so normal.

She's sat right now on the floor playing with our 3 year old daughter.

It's me that's the total wreck. Can't wait to get home to her, so scared when I'm away from her - a complete mess!!!

That said - I'm so proud of her

Edited by Rog
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Hi Rog sorry to hear about your wifes illness it is a scarey time, my wife had her sah 22months ago now,she had 2 aneurysms and had the first coiled and another clipped a few days later, it was the worst time of my life as i'm sure it was for you, recovery is different for everyone and your wife seems as though she's doing very well, the last 22 months has not been all steps forward there are times when things dont move forward or may seem that things have taken a step back but it was a serious illness and she has come through it but recovery can be long and drawn out for some and for others things seem to go much better so good luck to your wife with her recovery and remember there is no point in worry about what could happen as it probably never will, Best wishes to you both Rod

Thanks Rod - I was just reading your story too. Filled me up a bit. I like you and not good emotionally but we get there in the end!!

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Hi Rog

Sounds like you're going through the mill a bit, I can't imagine what it must feel like being on the other side. I often think my wife had it harder than I did, after all I don't remember most of what happened until a month later....

Don't worry too much about her now, the hard part is over and done with and she's almost outside the Vasospasm period as well (4 to 21 days post event). She is probably still on 4 hourly Nimodipine to deal with that. She really is out of the woods now, all that remains is to slowly let her brain and body catch up.

You both need to support each other, you both went through a very traumatic experience, you as a helpless bystander..though hopefully you were holding her hand; my wife tells me I nearly crushed her hand..she still complains about it.:lol:

Look after yourselves, and if you need to talk to anyone talk to us we've been there, seen it and got the t shirt. There are also several members in the same boat as you, who watched their loved one go through it, as i said it must be very scary watching it from the outside.

You should be aware that there has been a study by Newcastle (I think) University that linked SAH with post traumatic stress disorder, that just shows you're not alone. if you need help or support don't be scared to ask for it, from wherever you can get it from.

Good luck and best wishes

Adam

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Hi Rog

Warm welcome to the site.

Not much I can add either that the others havent already said...

talking it through is good for both of you, you to realise how your wife feels and she you even long after it happens my husband & I talk about when I wasnt me & we laugh at what we've come through together.....

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Good to hear from you again Rog.

Sounds like your wife is a real trooper! :-D

She might find that her energy comes and goes. I was under the impression (incorrectly) that I would build my energy up every day. I guess it kind of works that way but everyone's posts indicate that it's normal to feel depleted when only days before they felt pretty good. I've been more tired over the past couple of weeks than I was a month ago at Christmas.

Both of you need to rest. She'll rest easier if she knows you are ok too.

Take care, Sandi K.

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  • 4 weeks later...

Forgive me for writing but I was hoping for some more reassurance.

My wife continues to improve. It's been 7 weeks since the SAH and coiling.

She's up all day, uses the computer, goes shopping, and takes care of our daughter - all the normal everyday things. Gets a bit of pressure on the top of her head when she's tired but apart from that she's completely normal, she takes about two paracetamol a day.

The only subtle change I've noticed is that she less patient than before the SAH and gets frustrated easier. This we can cope with as everyone used to say she was so laid back about everything so now she's just considered as normal :lol:

I on the other am a total nervous wreck. Still can't leave her for the fear of something happening. I arrange for someone to be with her constantly when I'm not there, be it her Mum or a friend. I am so scared!!!!

I wake up in the night just thinking about it and to check she's OK.

Every noise in the house panics me and I shout her name to check she's OK.

What I said earlier is possibly wrong. She understands my fears and need to have someone with her, so I guess she has still got the patience of a saint!!!

I'm constantly looking on the net for reassurance although sometimes the amount I read just puts the fear of god in me!! I want someone to say she's going to continue to get better, she's going have a normal life expectancy and everything will be OK. Although I know this and even the Specialist Nurse told me this, I still want to hear it all of the time.

I'm desperate for her 1st MRI/Angio to take place. just so I know all is OK with the coil (7mm rupture/puncture on the right anterior communicating artery - SAH grade 2).

I try to stay positive and I'm fine when I'm with her but when I'm not, I'm so scared.

My problem is our 3 year old daughter and I was with her when it happened. We are good and try to make light of it all with my daughter now who seems to fine with everything now and even does impressions of Mummy throwing up all over Daddy :-D but I still re-live every day. I even get dark thoughts of life without her and then I have to kick myself out of it again. I hate it when that happens.

I worry about the coiling. Is it OK, will it last? has it a scar now so it's safer??

My wife on the other hand has such a strong positive attitude. She's of the opinion she’s here with no deficits/problems, she got through it and she can't worry constantly about what could happen and wants to get on with life.

Life is wonderful with her and my daughter right now but I sometimes have this terrible guilt in me that I shouldn't take any of this for granted and must always remember what happened and treasure her because something can take it all away again and this just stabs me in the heart all of the time. I don't seem to be able to accept it the way my wife has.

As you can guess, I love her so much and we have had so much bad luck these last 6 months. In Sept last year I too was rushed into hospital and diagnosed with a condition called ITP. Platelet count down to 2 (should be 150 to 400), haemorrhaging and ended up in and out of hospital and on lots of steroids and a splenectomy. Just got our lives back on track and was being tapered of the steroids when this happened. But hey - we're still here!!!

Sorry for going on XXXXXX

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Hi Rog

Have you spoken to your GP about your anxieties? If not then maybe it would be a good idea for you to have a word and maybe ask for some counselling. You have been through such a lot and it might be helpful to you to get some support.

My youngest son came to pick me up when my aneurysm ruptured and found me slumped in the street unable to walk. This had a huge impact on him. When I came home from hospital he wouldn't stay in the house if it was just him and me. Later I discovered he was terrified that it might happen again. SAH survivors can suffer from post traumatic stress and so can their relatives. My son did and it can slowly get worse over the following months. He eventually started showing signs of depression and when we sought help for him we discovered that it was this incident that triggered everything off. He was 17 when I had my SAH. Counselling has helped him a great deal. My other two children coped with things really well but they weren't living at home at that time and have said that they found that a relief

Your wife seems to be doing amazingly well for only being 7 weeks post SAH. However, is she noticing your anxiety and putting pressure on herself to be 'normal'?

When I came out from hospital it took me 3 weeks to be able to stand in the shower, I had to come down stairs on my backside because my brain would get very confused and not know what leg to move next and I would fall over. I couldn't open doors with my left hand (I'm lefthanded) because my co-ordination was terrible! But 10 months post SAH I went back to work, as a secretary in our local general hospital. So the future is looking very bright for your wife.

The chances of having another bleed are very very slim. Doctors don't keep things from us these days and if there were any reason for them to think that the operation was not a success then they would have told you. You will read posts from SAH survivors on here who have had coiling and either require more coils or have other aneurysms waiting to be coiled.

You know after my SAH when people heard what had happened they would say that it must have been very scary for me. I tell them that it was by far more scary for my family. They had to watch me go through this.

I hope this helps a little but do take care of youself.

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Hi Rog

Welcome to the site so glad that your wife is doing so well. My husband would be able to emphasise with your feelings completely even after over 4 years I think I still worry him sometimes. Your feelings are perfectly natural especially as the statistics can be very frightening you should discuss your feelings of anxiety with your G.P and counselling if you can get would be helpful. Look forward to hearing more from you.

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Hi there

Your wife is still very early on in her recovery and has a long road ahead of her. It's perfectly natural that you worry. My husband and daughter were with me when mine happened and it took months for my daughter, who was nine at the time, to be able to talk about it.

Your wife's attitude and personality may well have changed and this is normal too - she's had a near miss with death - I look at it as meeting death and telling him to get lost:lol:. Things will improve and settle down in time - I'm nearly five years on (2 annis one ruptured both coiled). I used to be stressed about the smallest things and then after nothing bothered me - for a couple of years - my family tell me I'm nearly now completely my old self :roll:

Counselling would benefit you both so much - that and this site helped me a great deal.

We can't guarantee anything in life unfortunately but take heart in the fact that she's done the hardest part - she survived. Now it's recovery and that takes time, but with love (which you obviously have in abundance), support and patience she will get there.

Don't apologise for "going on" thats what we're all here for. And don't feel guilty, this is something that has happened and no one had control over.

We're all here for you and your amazing wife.

Edited by Skippy
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Hi Rog

Sorry to hear you have been having such a scary time, both with your own diagnosis and then your wife's SAH.

It does sound like your wife is having a great recovery from her SAH, and it does get better with time too. I would agree with Liz and Janet that it sounds like you need some counselling to help get through this awful time you have experienced.

I had counselling after my SAH and coiling (my annie rupture was on the Right Posterior Communicating Artery and measured 13mm x 8mm x 8mm) and the 1st counsellor I saw confirmed that I was suffering from Post Traumatic Stress. Once she had said that and I read the leaflet she gave me and info online I started to be able to deal with it more. Initially I couldn't understand why I was feeling the way I did but that helped me understand it a little more.

Perhaps without realising you still had not come to terms with your diagnosis and recovery and then your wife's SAH hit and you have now got this anxiety and fear overload.

When is your wife's 1st check up due? I actually booked my own follow-up appointment via the Patient Liaison Service at the hospital, as I just needed a follow-up asap and get some answers.

Good luck with both yours as well as your wife's continued recovery.

Take care

Kel x

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Hi Rog, I'm glad you are back. I was wondering how things are going so thank you for writing again.

Liz asks if perhaps your wife senses your anxiety so she's acting normal. It's also possible that she is using all her energy to get through her day and she's not aware of just how freaked out you are. Peter has taken to hiding his anxiety from me and I'm surprised when he tells me things like he was up at 2am worrying about me. He might not be hiding it from me, i think maybe I'm just so wrapped up in myself lately I don't notice! Either way, I agree with the suggestions of counseling. These feelings of anxiety can be overwhelming and a counsellor will help to bring some calm back into your life. I live in a rural area and didn't want to drive for face-to-face counseling because I would be 'done' by the time I got there. I had my first session over the phone last week and found it very helpful.

Sandi K.

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Forgive me for writing but I was hoping for some more reassurance.

My wife continues to improve. It's been 7 weeks since the SAH and coiling.

She's up all day, uses the computer, goes shopping, and takes care of our daughter - all the normal everyday things. Gets a bit of pressure on the top of her head when she's tired but apart from that she's completely normal, she takes about two paracetamol a day.

The only subtle change I've noticed is that she less patient than before the SAH and gets frustrated easier. This we can cope with as everyone used to say she was so laid back about everything so now she's just considered as normal :lol:

I on the other am a total nervous wreck. Still can't leave her for the fear of something happening. I arrange for someone to be with her constantly when I'm not there, be it her Mum or a friend. I am so scared!!!!

I wake up in the night just thinking about it and to check she's OK.

Every noise in the house panics me and I shout her name to check she's OK.

What I said earlier is possibly wrong. She understands my fears and need to have someone with her, so I guess she has still got the patience of a saint!!!

I'm constantly looking on the net for reassurance although sometimes the amount I read just puts the fear of god in me!! I want someone to say she's going to continue to get better, she's going have a normal life expectancy and everything will be OK. Although I know this and even the Specialist Nurse told me this, I still want to hear it all of the time.

I'm desperate for her 1st MRI/Angio to take place. just so I know all is OK with the coil (7mm rupture/puncture on the right anterior communicating artery - SAH grade 2).

I try to stay positive and I'm fine when I'm with her but when I'm not, I'm so scared.

My problem is our 3 year old daughter and I was with her when it happened. We are good and try to make light of it all with my daughter now who seems to fine with everything now and even does impressions of Mummy throwing up all over Daddy :-D but I still re-live every day. I even get dark thoughts of life without her and then I have to kick myself out of it again. I hate it when that happens.

I worry about the coiling. Is it OK, will it last? has it a scar now so it's safer??

My wife on the other hand has such a strong positive attitude. She's of the opinion she’s here with no deficits/problems, she got through it and she can't worry constantly about what could happen and wants to get on with life.

Life is wonderful with her and my daughter right now but I sometimes have this terrible guilt in me that I shouldn't take any of this for granted and must always remember what happened and treasure her because something can take it all away again and this just stabs me in the heart all of the time. I don't seem to be able to accept it the way my wife has.

As you can guess, I love her so much and we have had so much bad luck these last 6 months. In Sept last year I too was rushed into hospital and diagnosed with a condition called ITP. Platelet count down to 2 (should be 150 to 400), haemorrhaging and ended up in and out of hospital and on lots of steroids and a splenectomy. Just got our lives back on track and was being tapered of the steroids when this happened. But hey - we're still here!!!

Sorry for going on XXXXXX

I.m a SAH survivor for five years. My husband found it very difficult at the begin and I would text him regular throughout the day to reassure him I was fine.

He still worries but not as much these days, but it still remains at the back of his mind.

I can understand that he feels like that and maybe its a natural reaction to a terrible event.

Just take one day at a time and enjoy being together.

Take is a great healer.

I think your wife is recovering really well.

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