Jump to content

Hi, I'm Jerome...


JeromeD
 Share

Recommended Posts

Hi,

I've been a member of this group for a few months. Just summoned the courage to post something.

My name is Jerome, and I'd like to start my SAH story at the very beginning, which means a bunch of other health issues...

Firstly, around 4 years ago, I grew a tree trunk for a left leg. You guessed it, Deep Vein Thrombosis, and therefore Warfarin This led to a Pulmonary Embolism, aka Venous ThromboEmbolism (VTE).

This happened twice, roughly a year between, resulting in hospital visits of a week or so both times.

This culminated in my being prescribed Warfarin for life. Yay me :(

And then, approximately a year after the second PE, along came the diagnosis of a Colovesical Fistula (bowel and bladder joined, possibly due to Diverticular Disease

This has not yet been resolved - I'm awaiting a bowel resection surgery...

All the while, I'd been experiencing headaches growing in severity, initially diagnosed as migraine with aura.

That was until May 4th 2015.

For a couple weeks prior to 04/05/15 I'd had a headache that would not go away, and just increased in severity, plus nausea and vomiting that also increased in severity.

Until the morning of May 4th when I experienced the mother of all headaches and vomiting like I'd never seen.

Time to visit the emergency doctor - it was a bank holiday and my GP surgery wasn't open - who treated me for migraine.

When that treatment (painkillers (Codeine) and anti-sickness pills) did nothing, I was admitted to the emergency ward. A few hours, and much pain and vomiting later, I was given a CT scan.

The scan showed a SubArachnoid Haemorrhage and a pre-existing SubDural Haematoma.

I was ceased Warfarin and given IV vitamin K and something else - plasma I think - to reduce my INR, as it was rather high at 5.5 (International Normalisation ratio and IV Morphine - oh man. That is the best feeling I've ever had. The pain just melted away, and I went into a fuzzy and warm haziness...

I was, of course, held in care for some time.

During this time, after 4 days, in fact, another blood clot formed in my left leg, and so Warfarin was reinstated.

After 3 weeks I was discharged.

During the following month I experienced similar pain and vomiting to the week or so before admittance and was readmitted to hospital twice with an INR of over 6 - target range is 2-3...

And so, here we are, 4 months later, still having headaches and other "symptoms" or "after effects" - sore legs, pins and needles in legs/feet and arms/hands, and twitches... muscle twitches, usually just in my index fingers and thumbs, but occasionally either leg will kick or arm will "punch", and recently my right lower eyelid began twitching...

Hi, My name's Jerome, and I'm a freak and a mess.

And I'm scared.

Link to comment
Share on other sites

Hi Jerome
Welcome to BTG and well done on your intro. I can understand you being scared you have been through such a lot. If it makes the sah side of things any better it is very unlikely to happen again. I think we all worry about 'what if? ' but as Karen the founder of this site has said they have not lost a member to a subsequent sah yet.
What type of bleed did you have and did you have any surgery? Recovery is slow and you are still early days. I am 7 months post bleed now and still not back at work full time and have bad days.

 

Rest lots and drink plenty of water. And keep in touch with the medics re your condition as considering your other problems you need support. Hopefully other members will post with help and friendly advice, it's a great place and helps allay the fear sometimes. You're not a freak just scared and need some friends, you have come to the right place.

Take care
Clare xx

  • Like 2
Link to comment
Share on other sites

Hi Jerome :)

 

A very warm welcome to BTG....Glad you found us and summoned up the courage to post :)

 

I too can understand you being scared, you have been through and are going through so much.

You have come to the right place for lots of helpful friendly support.

As Clare has said it is still very early days for you, recovery is slow and can be very frustrating.

Also agree, keep in touch with your Doctors re your condition as considering your other problems you need support.

Look forward to hearing more from you.

Wishing you well,

Take care

Tina xx

  • Like 1
Link to comment
Share on other sites

Hi Jerome. So you picked Jerry as your avatar, how apt as you really have been through some scrapes like he does but I hope you will also come through it and get your cheese !

The after effects from the bleed are scary and then there is a horrid cycles of the fear and anxiety we naturally have releasing chemicals which further irritate the injured brain and it's all gets pretty terrifying at moments. When it's bad try and breathe slowly and deeply and let it pass. The more times you can let that happens will build back up a little bit more of confidence in your body.

You're not a freak by any measure, you have had medical issues but you are indeed a survivor of something that takes time to recover from. Maybe you could write a diary, it helped me to keep track and each day find three things I was pleased about. It could be the simplest of things but that's the thought you focus on. There will be things that are improving and those are all worth celebrating. Also set yourself little challenges, not too much and don't beat yourself up if you can't do it.

If the sensations are increasing in any way then you should always get that checked out, that's my mantra in all this, if things get worse then don't ever ignore it but do be be kind to yourself Jerome. Sounds like it's been a very hard time for you. We know.

  • Like 3
Link to comment
Share on other sites

Hi Jerome,

 

Welcome to BTG, you have been through it haven't you.

 

Its still early days for you yet so take it easy, keep posting here and you will see

that this is a brilliant place for help and support.

 

I would just say make sure you get plenty of rest, make sure you drink plenty of water

and take each day as it comes, you are a survivor as we all are, we have to embrace

still being here

 

GOOD LUCK with your recovery

 

Love Michelle

  • Like 2
Link to comment
Share on other sites

Hi Jerome,

 

I am a Freak Mess lol xx

 

I'll tell you about my typevvriter first ...The VV and the key next to it doesn't vvork so I am putting 2 v's  together to make a VV

 

It's natural to be scared,  After my fight vvith SAH then Ventriculitis then Sepsis I vvas so scared, then I found BTG  had helped my daughter as she came on here, scared of her Mum being so ill. 

I do not knovv much about DVT's but SAH is scary and I am glad I remember none of it as vvhen I vvoke up  after shunt fitted, my hubby told me vvhat happened to me.

 

Keep typing and keep smiling, never give up vve are here to say vve made it xx This site gave me hope vvhen I thought it vvas over for me.  I have laughed so much on here and given vent to my problems,  it vvill help you and I promise not to sing to you,   yet !!

 

I'll save it for Later !!  Listen to the others they are right,   VVater drink lots and keep a smile for a dovvn day xx

Good luck on your recovery take baby steps at first then later on you'll be able to do more,  but keep avvay from people vvho have troubles to tell you, just be happy if possible.  You can even  laugh at my post xx Surround yourself vvith happy thoughts.

 

Love

VVinb143 xx Sorry about computer being mucked up hope you can understand post lol 

  • Like 3
Link to comment
Share on other sites

Hi Jerome,

 

Welcome to BTG.

 

You have had a rough few years and have my sympathy. I had my SAH in January following heart surgery for a congenital heart defect - just when I was dealing with one medical issue another one crops up! It is exhausting and it is difficult to balance the various issues that comes from them all.

 

I too found that I had muscle twitches and other things after my SAH. These have got better over time to a certain extent but as others have said on here if you are unsure or worried do see your doctors to get reassurance.

 

Good luck with your recovery.

Take care,

Gemma

  • Like 1
Link to comment
Share on other sites

Hi Jerome

 

Warm welcome to the site, glad  you found us and so pleased you took that huge step in posting well done you...

 

Wow you've been through it, but you are in no way a freak or a mess we've all probably felt like that one way or another.

 

and just ditto what everyone else has said.

 

hope to hear from you again soon...

  • Like 1
Link to comment
Share on other sites

Thank you all for your warm welcome and kind, caring words :)

Usually I'm very willing and able to talk with people about anything and everything... but all these health issues, I struggle. So I'm glad to have found you all :)

 

@ Clare: I have no idea what type of bleed I had and didn't have surgery. I've been told, and been able to find out, very little about any of my conditions, but especially SAH.
I have an appointment with a Neurologist on 30th this month (which I had to wait almost 3 months to get) so, hopefully, that will shed some light.

     On a sidenote, is there anything any of you can think of that I should ask for or about?
     Things on the list for now are - side effects and/or other symptoms (twitches etc.), and what type bleed.
 

@ Tina: Support around here seems poor at best, or even non-existant. Bouncing from one GP to another and unable to get specialist appointments for weeks or months if at all. I've asked a few GP's if there are any support groups in the area for SAH, getting an answer of "None that I'm aware". Next time I'll give them this website address so they'll at least have something for others in future.

 

@ Daffodil: Hahahah yes. Jerry does seem kind of apt. And I do love cheese :D
You might have something with that diary idea. Simple and quick, not too much thinking, which is a good thing ;)

@ Winb143: Don't worry about the dodgy W. Your post is perfectly legible :)
Sounds like you and your family have been through a rough time, too (as everyone here has to some degree).
I did chuckle a bit at your threat of singing, and I look forward to "Later"! :D

@ Gemma: Absolutely! It is exhausting. And balance? What's that? :P
Glad to see another "twitcher" LOL

Thank you all, again. Very, very much.

  • Like 2
Link to comment
Share on other sites

Jerome,

 

That vvasn't a threat  it's a promise I vvill keep lol  

 

Make a list for Docs as there is alvvays something you forget to say and if anything llke me you vvill come out of Docs and go oh bleep ! I never asked that question.

 

I vvish you vvell and no Stress x 

 

Regards

 

VVinb143 xx xx

Link to comment
Share on other sites

Jerome, I think its quite normal to wait 3months for your appointment they leave it like that so things start to settle down..

 

Any questions you have write them down because once your in there your mind will just go blank...

 

I think we all leave hospital not really knowing or understanding what has happened to us, with little information given, and yes to the support groups (as you say that their aware of)

 

I have a day to day diary on the computer its a great way to remember things, and to see how your progressing.

 

Take care

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...