So confused over DNR (do not resuscitate)

[BobinTewks]

My bf had TBI on 17/2/17 & they say his GCS has never exceeded 6/7 & most likely never will. They have decided to withdraw treatment. I'm so confused

Bob

[StrawberryCream]

So very sorry to hear that your bf has sustained a very severe tbi. Which will have been an incredibly horrendous time for you since February and confusing and devastating for you that it now seems that the hospital has given up hope of even a reasonable recovery. This decision to withdraw treatment will have had to have been discussed and agreed with whoever is his next of kin. Are you able to discuss your confused and distressed feelings with them?

[BobinTewks in reply to StrawberryCream]

Hi SC, thank you for yr reply. All of Michaels close family live in Malaysia (he is Chinese). So, although we are not married, I am the closet to him in the UK ( we were going to get married this yr in Nov after living together for 20 yrs).

There has been a development since I posted on here earlier. I spoke to the consultant and they have decided that they will remove the ventilator and if Michael starts to have problems then they will jump in with a tracky (this is not were they were intending to do). This is because there is a stalemate with getting his sister over here quick enough. So I'm feeling a bit relived at the mo.

[StrawberryCream in reply to BobinTewks]

Am relieved to hear that you were able to speak about your concerns with Michael's consultants. It's good that they are recognising you as a couple and therefore speaking to you as a next of kin in the absence of anyone from his family as they are a long way away in Malaysia. When I read your first post I did wonder if bf was as I thought boyfriend but I didn't want to assume as it could also be best friend. This must be a devastatingly difficult time for you with 20 yrs together and a marriage planned for this year. Is Michael showing any responsiveness at all? When I was in a coma, and on a ventilator, initially I had the tubes in my mouth but then it was changed to a tracheostomy as apparently is more comfortable and easy to try and bring out of the coma. You are right to not give up hope because sometimes even the doctors are surprised when after months and months I n a coma bi patients show some recovery. However, the consultant specialists have all the scan and test results so would know how extensive the brain damage is. They will always err on the side of caution rather than give unrealistic hope but it is good that they are going to try taking him off the ventilator to see if he can at least breathe independently. I am thinking that the consultant will have explained that even if he breathes independently that will not mean that he will wake from his coma yet. Hope you don't mind me asking how did he sustain his tbi?

[cat3]

My thoughts are with you Bob, and sincere hope for some encouraging signs from your partner.

Please keep us informed of any developments. All best wishes, Cat x

[Kirk5w7]

Can I jump in here as someone who was in a coma GCS scale 3 and not expected to recover. My husband was asked to put DNR on my notes, I understand this as meaning should the patient have a heart attack they will not attempt to restart the heart. In my case my brain activity was so low that they thought my organs would fail and told my husband it would not be in my best interests.

However, it never came to that as I spontaneously started to recover, and their predictions of me being in a permanent vegetative state did not happen, far from it.

I am not saying your bfwill also recover, but that these specialists do not know everything.

I had to be taught to walk and care for myself again, but I have a very good life, I am able to get out independently although no longer drive, apart from severe fatigue and some balance issues, my intellect is intact, I have some sight problems and no changes to my personality.

It has been a long road but one I have been glad to make, my family never doubted that given the right environment I would recover.

My BI was caused by encephalitis and I have lesions on my brain, where bits have died, but I have worked hard to enable my brain to re-wire past those bits.

Your BF's recovery will depend on the extent and where the brain injury has occurred and also his lifestyle etc, before the injury and also his determination to recover afterwards.

My thoughts and good wishes are with you both.

Love

Janet x

[StrawberryCream in reply to Kirk5w7]

Yep Janet I perhaps should have mentioned that as well that my GCS was 3 when I got to the hospital and I was already effectively in a coma but then sedated to be kept in one.

[Kirk5w7 in reply to StrawberryCream]

I forget Caroline, just how similar our illnesses and recovery have been.

I hope you are keeping well, I'm still battling the good and bad days, today is a bad one. I just wish they were more predictable.

Ibuprofen helps immensely but my GP doesn't want me to take it because it is not good for my liver function, so I go to see him next week to see what can replace it. I've waited 3 weeks for this appointment, he is so popular at our practice, I'm hopeful the answer could've amitryptilene which was offered to me when I left rehab but I said I would try to manage without it, but I need something. I will stop being stubborn.

Take are

Janet xx

[Hidden in reply to Kirk5w7]

hi Janet (another Caroline here!) I just wanted to offer my experience with anti-depressants (or Happy Pills as I dubbed them as I had young teen children then!). Amitryp is the usual starting point at a medium dose so view it merely as just that - a beginning. Plus it takes weeks to build-up/settle down - alas most GPs do not explain all this! The onus for monitoring and adjusting the dose lies with you the patient. Invest in a pill cutter as half a pill matters. I had to switch from Amitryp as the max dosage was too low - to Citalopram now Sertraline.

HP's are an invaluable tool to manage psychological pain. They provide a cushion - a distancing. Too high a dose and it leaves one cold and uncaring (not nice especially for one's loved ones!). I wish I hadn't waited so long to start them - so do my husband and children...

All the best!

[Kirk5w7 in reply to Hidden]

Hi Caroline, I've been on HPs on and off for many many years, back to my early 40s in fact. They automatically put me on a low dosage of citalopram, 10mg, in hospital but I've ditched them twice now since. I'm taking 5HTP ATM. And finding that beneficial.

It says amitryptiline is prescribed for migraine and the neurologists think my feelings of pressure in my head may be migrainous so I'm hoping the amitrip will hit a few things at once and I don't mind managing the medication, you have to work out what's best for yourself. I've done that with the HPs for years.

And I possess a pill cutter already, so well equipped.

Thanks for the reply.

Best wishes

Janet

[StrawberryCream in reply to Kirk5w7]

Yes Janet we are both here with very similar causations!

Likewise I have good and bad days but of late its been mostly bad! Much of it because my sons difficulties are escalating and I am really struggling to manage. We have tried to access specialised help for him but there has been funding issues. My tolerance of it all is not good particularly because I have had so many doors to bi help closed on me as well. So had these battles time and time again. I now live like a recluse only going out when essential because when I do connect with the outside world it all seems to go very wrong. My whole situation is compounded by my bestest lifelong, friend, my rock, is now in a care home with early onset dementia. I miss her soooo much. I went and visited her recently and she can't speak at all now and I don't know if she knew who I was or not. It was truly awful.

In the last year I have develop numerous other problems - high bp, high cholersterol, pre diabetic and am constantly in a state of high stress which is probably why! I also now have fibromyalgia and I am on a low dose of amitriptyline. I was in so much pain and high dose ibruprofen wasn't doing anything. It had got to the stage that I couldn't sit or lie down and initially I thought it was because I had changed my sofa! But it wasn't and once I went on amitriptyline it made a huge difference. The downside was that although you take it at night and it should help sleep ........ it did the opposite to me and turn a switch on in my head so that my already dire sleep became non existent. I read up on it and found that in some people it does that and so I started taking it in the mornings. That worked well for me! Since then I found out about circadin helping the sleep cycle now have that as well which has been brilliant as I now get some better sleep! If amitryptiline is prescribed for depression the dose is 150 mgs or more but for neuropathic pain it is much much lower. At the moment I only have 30 mgs a day but that has made a significant difference to my pain. Go for it Janet and give it a try. I was stubborn and resistant to it being prescribed as seem to have adverse effects to lots of medications, but I can honestly say that I was in so much pain for so long that it was making me so miserable on top of everything else, that once I had experienced how much it helped lessen my pain I wished I had agreed to it much sooner!

Very best wishes

Caroline xx

[Kirk5w7 in reply to StrawberryCream]

Hi again, thanks for all the info, it was very helpful.

I too am experiencing more bad days than good at the mo. For no obvious reason either, I was originally told my issues I was left with are not progressive but i wasn't told it would be unpredictable.

I'm just fighting for that normality, whatever that may be!

I too have high blood pressure and cholesterol, but had the BP issues before the BI, and am very quickly affected by stressful situations now so much so that my brain starts to shut down, my sight dims my hearing goes and my speech becomes unintelligible! What fun we have eh?

My sympathies with dealing with your problems and coping with your son.

My youngest has just completed his degree, we found out just a couple of months before his final exams that he is on the autistic spectrum. So has worked so hard through this only to walk out of one exam when the stress level got too much for him. Now he may fail the course and have all that debt and feel that the last 3 years was for nothing! We are fighting for consideration for all he has dealt with unknowingly, it would be so unfair if it all hinged on ones 2 hour exam.

Take care Caroline xx

Janet

[BobinTewks]

Thank you SW, Cat & Janet. It's taken me over 3 mths to post something on here & now I have I wish I had done so sooner. I tried to put more details on my 1st post this morning but it kept giving me error msg so I thought it was because too much text and so I cut it down. I'll try again...

My boyfriend fell at home in the bathroom and suffered a severe TBI. We don't know why he fell but about 2-3 wks prior he had dropped a frozen box of calamari on his head at work. He was operated on 12 hrs later (which is a question on it's own) and then lay in a coma for 4 wks. Since his initial operation he has suffered the MSSA virus, had a tracky put in then later removed, an ulcer which they clipped, 1 shunt opp, another shunt to readjust position, another shunt opp to replace with programmable one, plate put in (wrong position and caused a bleed) and lastly an opp to remove the bleed and put back plate.

I was so excited that the plate was in - now they could get the pressure correct and he will be on the road to recover. The day after the opp my world was blown apart again, I was asked to meet the consultant and he told me they had a decision to make, to do another tracky or to just remove the ventilator and hope for the best (not his words). In the following week I had 4 meetings with the consultants where they tried to bring me round to their way of thinking - not to proceed with tracky. At the time the Dr told me Michael had not gone above GCS 6/7 and that is why they had made the decision. Yesterday another Dr said he had gone to GCS 8 at some stage - conflicting information!

During the 3 mths Michael has, at times, opened his eyes, looked around the room, followed me as I moved, smiled, pulled the food pipe from his nose (3 times I think), scratched his nose. But now he's had 6 operations and the Dr say this has caused more damage, hence the GCS 6/7.

On Monday he had his eyes open for a while and when I spoke to him I did see them move rather than just stare ahead. This has given me a boost but with all that I'm being told am I expecting too much?

[Kirk5w7]

You know, I'm a great believer in where there is life there is hope. The doctors told my family I was not responding at all when in fact I was. They were told it was just wishful thinking, I would respond by moving my tongue on request to my family when I couldn't squeeze a hand or blink when asked by the medics.

It sounds like your partner has not had the best of treatments, and it has been a long road already for you. As to, are you expecting too much,I am not qualified to say.

Have you asked just where is the damage in his brain, and what will it mean should he come round from this.

I know my situation was different but I had to ask my consultant what long term effects I would have so I knew what to expect of myself, no one in the family had asked this even after I started to recover. The professionals don't like being pinned down and are very wary of volunteering too much.

Please do take care you have toe strong for your partner, you have to fight his corner, he can't do it.

Janet x

[Kirk5w7]

Another thing, are you doing all you can to stimulate his brain when you are not there to speak to him?

Hospitals are so busy and they don't have the time, my family asked the nursing staff to put my iPod on me when there were no visitors. There wasn't just music on that there were recordings made by my children, grown up, reading to me. So audio books would be good as well as his favourite music.

It does work, as you drift up and down in that comatose state things do register and you hear, but not always remember, what is going on round you.

Love

Janet x

[jacs17]

heard amitriptiline,being mentioned as a depress sent over 60 mg,an a relaxant below,warning if you have breathing or heart problems,take heed as I was put on them an caused me to stop breathing,they don't say but when you have had breathing or heart operations or illnessesses,they should be giving you ecgs,as it accelerated my heart rate only on 40mg,to were I had to be rushed in an put on oxygen an warning notice on my notes,slight heart attack which would of been worse had I not pressed 999 back then,

[Kirk5w7]

Thanks for this Jacs it is something I'll bring up xx

Janet