Life after getting out of the hospital?

[Ponigirl]

I am very curious about a couple things- this may vary from UK to States or other countries.

 

When I was released from the hospital and rehab I feel like I was given very little if any instructions on what to do now. I went from ICU to "step down" then to rehab. I do not have any memory of any of that or even the weeks/month before I had my SAH. When I was released from Rehab (at Kernan) I was pretty much just told to go home and come back in 2-3 months to see the neurosurgeon; no mention of driving or not driving, etc.

 

Before I saw the neurosurgeon I had to bring an updated CT scan of my brain, he said it was fine. When I saw him he told me I could return to work (no restrictions), he said driving was up to me, and that I did not need to see him any more or make any follow up appts at all. I felt very "lost".

 

I returned to work  3 months after my SAH. I started having more and more memory problems, I had a hard time understanding and comprehending. I was in tears almost everyday (now I've read the emtions are normal after a SAH),  I wish I had known that at the time!  

 

I called the neurosurgeon and told him all this, he asked me if I had a neurophysc test, I couldn't remember- so he checked my records and said there was not one done- so he scheduled me to have one done.  It was very extensive, 8 hours total - they let me take it on one Friday and come back the following Friday to complete, and it was also very expensive $$$$$, lucky we have very good insurance. 

​Believe it or not but I felt so much better when I failed it, because I felt like a crazy person. 

 

I wish when I was released I was given a "How to live with having SAH for Dummies" Book - or something like that. I noticed that so many people get on line right away after having their SAH/BI but I never thought to do that. I felt like I was floating in a cloud or something. I didn't even find an online support group until at least a year after mine. I just had my 2 year and there are so many things that I am find out now that I wish I had known a long time ago.

 

I would really like to hear what your experience is/was and what your thoughts are on a book for when people get out of the hospital. 

 

Thank you!!

[Super Mario]

Even in the UK we are given very little information on discharge. Just a case of go home and get on with your life is pretty much normal.

Some members have had a specialist neuro nurse whom they can contact regarding any worries although as far as I can ascertain that does not happen for everyone. Also some areas in the UK have support groups attached to their hospitals, it is not a blanket thing all over the UK, just lucky if you happen to be in an area where there is one. 

 

Time and time again on here has the subject of having a support leaflet or booklet for after discharge has come up but as far as I am aware very few hospitals have one for post SAH although they do for many other conditions e.g. following a heart attack.

[Gill C]

We were pretty much the same although we were given the brain and spine foundation booklet. To be honest the booklet really deals with physical recovery (ie healing from the bleed/surgery) and not much else. Btg is signposted in there but I found it going through the brain and spine foundations forum.

We had a Neuro nurse to ring but I felt silly ringing for every little twinge or hiccup. I thought they would think I was silly and as they were so busy they wouldn't have time to deal with me. I never rang and wish so.much that I had earlier on.

I was told about headway and put off ringing them as I thought it was for people with brain damage and I didn't have brain damage!! I tried for 6 months to cope on my own and just didn't really cope, I truly thought I would be better after the 3 months recovery was supposed to take.

In Jan 2011 realised I wasn't managing on my own and rang headway. My assessment was tearful and tiring but my intro meeting was a revelation.all the things I felt were what everyone with a brain injury get, I want going mad after all.I attended several courses there which were so helpful and supportive but sadly now, due to funding cuts, most of those courses are no longer available

Headway and finding btg saved me I'm sure

[Louise]

Yep little to no information with me either, and I didn't know about internet or how to use it when I had mine, I was 6years down the line think it was when (by this time did know about internet) I did a web search and this wonderful place was first one - such a blessing in the state I was in at the time.

 

I too was in hospital HDU then went into rehab then out patient at rehab for a bit, but after that and the odd appts it was very much get on with life - so easy for them to say harder, much harder as we know to do so.

 

I think there should be more information out there definitely but not long winded simple plain facts...

[iola]

Hi,

 

My surgeon was wonderful but the literature provided was awful.  I remember when they told me I had an SAH and of course I had never heard of and I asked what that was.  I had no idea how life threatening this was.  The doctors did make me aware I was critically ill but still could not grasp what they were telling me.

 

When I was released I was told I would have headaches but should be fine and could go back to work in 4 months or so.  .I could not drive for a about two or three months.  Not until after my third angio and was off all meds.    It was when I got home I started researching.  I did it day and night.  I felt very safe in the hospital but when I got home I was terrified for a long time. My emotions were a mess.

 

After about six months I went back to see my surgeon and asked him very direct questions.  I received more information because now I knew the questions to ask.  He also told me to stop researching the internet because it would only scare me.  Well, I still research. 

 

I believe time gives us the opportunity to formulate more educated and direct questions that are deserving of answers. 

 

I do have a neuro at home since my surgeon is 4 hours away.  He is good but cannot understand why I believe my headaches are from the injury.  Honestly, I don't understand why he does not understand.

 

iola

[Carolynusa]

How sad and so very annoying that so much of the medical profession including hospitals are so quick to dismiss our problems once they think "the worst is over"  It's not new however.  If many of us think back in our lives we can probably come up with at least one person that was "treated" and "released" from medical care and it all blew up a little down the line because there was no proper follow-up.  I can think of quite a few because of my age and the fact that I worked for Health Care Insurance for 15 years.  I've heard and learned so much.  I quit health care insurance because of exactly that type of thing - that, and the fact that it was so sleazy.  There was no care for the patients - it was all money.  

 

The main thing to me is - and I say this to people all the time - "You have to be your own advocate".  If you feel something is wrong or has not been addressed, call them up - or go down there and sit in their waiting rooms until they talk to you.  It's YOUR life we are talking about.  Nobody has the right to dismiss you or your feelings.  Shame on them for not preparing you better when you were dismissed from the hospital.  

 

I am not a "support group" kind of person generally speaking but I had so many weird symptoms when I got home.  I knew I would feel weird while I was healing but it was still scary - as you know.  I found BTG and it set my wrecked mind at ease in most cases.  

 

My neuro team was actually quite wonderful and they have spent a lot of time with me - even after coming home.  I was so shocked as I have really disliked the hospital/clinic for years because of my history with them in insurance.  They charge a lot and seem to harass people about their bills more than any other.  But, my God, they are wonderful!  I wish you could have had a better experience in that way.  My bill ended up (so far) being 1.4 million dollars (sorry about pounds but Ponigirl will get it).  They wrote off almost the whole thing.  

 

I'm not saying it was perfect, Ponigirl.  But...what seemed to have happened to you is absolutely shameful.  I would say to "get after them".  Ask questions.  Take any help you can get.  My doctors wrote on my discharge papers that I was not to drive for 6 months and that I would not be able to work for at least 1-2 years.  They were specific.  Try to get some answers and keep after all of it.  If you get a "twinge" look it up online right then or call the doc if you are really scared.  

 

Take care or yourself first and foremost.  Maybe you can make a lot of notes through research for a perfect "Post SAH for Dummies".  It would have helped me for sure!  lol

 

Be well.  Carolynusa

[Ponigirl]

I really appreciate everyone's input/ideas/suggestions. This is very helpful. I was actually expecting these exact responses. Since I am not working I am going to try to do something about it. I want to contact someone at University of MD Hospital in the near ICU. I would like to work with them to come up with some generic booklet on brain injuries. Hopefully it will help others to have a heads up on whats to possibly happen and change in their lives.

I need an upbeat and positive project to work on and this will be it. I'm sure it will take me quite some time, but thats ok.

Thank you very much!!!