Hi I've only just discovered this site and I'm hoping it will help me deal with a few issues since I came home from hospital. I was rushed in 3 months ago as I went into septic shock and placed straight in an induced coma for 10 days, my body went through so much , my lung collapsed, my heart rate was 180 and my temp was sky high. Finally i had a tracheostomy fitted which saved my life and I came out the coma. I spent 5 weeks in icu & 4 weeks on respiratory ward as I still had pneumonia but luckily the PVL had been treated . I'm finally home but suffering with nightmares, hair loss and struggling to gain the weight I lost ? Any tips ?
Thank you
Rosie
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Ticks26
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I'm glad to hear you came through it all but unfortunately no one prepares you for what's to come following discharge and often there is very little support. So many of us have been where you are now, the first thing to realise is you've been through a major trauma and your body will take time to recover as you loose around 2% muscle a day while in a coma and the powerful drugs, they have to use combined with the illness can cause temporary hair loss and contribute to the nightmares, it can take up to 18 months to 2 years to fully recover so allow your body time, I know from personal experience after spending 3 months in ICU over 6 years ago how hard it can be, at times I wished I'd never survived, feeling I would never be the person I was before my illness, but now I look back and think how far I've come from being so close to death, to a reasonable quality of life which is far better than the alternative.
ICUsteps have a free intensive care guide that you can download from the website at icusteps.org/guide they also have list of local support groups where you can meet others at different stages of recovery giving great support to others.
You may benefit from some psychological counselling which your GP should be able to arrange, but be aware there's usually a long waiting time unless you can afford to go private.
The best advice I received was take gentle exercise, eat healthily and look after yourself, things do get better with time and the bad memories fade but are never forgotten.
I was rushed into hospital 11/4/16. I had picked up flu A & Strep A in Austria week before ( around 6th). By Saturday, I had double pneumonia. On the Monday, went into sepsis shock - kidney failure etc. I was put into an induced coma and remained like that for 57 days. My heart, lungs and kidneys failed, so I remained on life support, dialysis and intubated for another 70 days. At some stage I had a trachy. I left ICU - about 20 days later. I picked up severe ARDS, was proned 3 times. I was paddled a few times to stop my heart going into a dangerous irregular beat.
I woke up to acute muscle waist - I was 80kg before & now weight less than 60kg. I could raise my neck, firearms and knees with effort. Plagued by grotesque nightmares whilst unconscious - fortunately up until now, I've only had one since. I ate well - cooked breakfasts ( poached eggs/ grilled bacon) porridge. Plenty of dairy & good balanced diet has returned me to 75kg.
Gentle excercise and physio to more exstensive cardio vascular excercise has improved my mobility & stamina.
My hair was coming out in handfuls - I was told to not be scared to brush my hair - this might stimulate growth. I found this side of recuperation very disturbing. I took multivitamins too - was it potassium that helped?
I now have a normal head of hair - texture might be softer. 😀
It's so reassuring to hear other people's experiences. It still feels so new to me & it's so hard to come to terms sometimes with my feelings and what happened to me. I can get angry or upset but I'm trying my best now to turn all of those feelings into positive ones because I've learnt it isn't healthy for me to always feel like this.
I'm desperate to get back to normal however I know that will take time, I suffered a panic attack last weekend which was scary and something I'm not used to. I feel like that's another set back & im trying my hardest to not let that happen again.
I will definitely try your suggestion for the hair loss as it is something I'm becoming so paranoid about and worrying that people are noticing, I know so silly in the grand scheme of things !
I woke up completely unable to move or talk which was so scary, they told my family a year in hospital and I walked out after 2 months. I'm proud of how far I've come but I almost feel like I've hit a wall now and struggling to snap out of it!
Thank you so much for your reply it's really helped me already !
Push yourself but not beyond what's feesible. I like you broke all expectations. But recovery should be slow and steady. I think my family were pleased and horrified by how gung-ho I was early on. I kept passing out and fitting when I over did it. Reawakening their dismay. I'm still determined to get back to normal - just slower & steadier.
I agree, it doesn't help to dwell on all the crap - onward & upward.
My mom was admitted to the Hospital 15 days ago with rapid breathing and her oxygen concentration was low. She was on doxiI for a small spot of cancer in her lung that traveled from her ovary when it was removed due to cancer there was a spillage when removing her ovaries. They watched her for 6 days she was alert and talking she required an oxygen mask or her oxygen concentration would drop very low. Eventually at the 8th day she had to be intubated cuz she just couldn't breathe they put her on a fentanyl drip and deprivan to keep her sedated. They took her off sedation 2 days ago and she's unresponsive no response to pain, her pupils aren't retracting with the light. They are telling me they don't know why, I'm afraid and confused and don't know if she will eventually respond or what. They did a cat scan it was OK so IDK.. Any advice out there on why she's not responsive ?
I see that you also suffered a PVL infection..They are very uncommon and the only other person I know of who contracted one sadly passed away..(It was someone associated to my occupation in a social care setting and there was a link as established by the local public health agency..) Do you know how you contracted it ? 4 years ago,aged 36 I caught the A flu and then contracted PVL-MSSA in my lungs resulting in Double necrotising Pneumonia,Severe Sepsis, Effusions and a left lung Pneumothorax..I was also admitted straight to ICU for 2 weeks and ventilated for a week then I spent a further 2 weeks on a Respiratory ward before being allowed to go home where I continued my recovery..All in all I was off work for 7months but made a very good recovery .I too suffered hallucinations,nightmares,had to "learn "to walk again and lost some hair for a while.. Everything got better in time so stay positive,give yourself time,look after yourself well and celebrate all your little successes ! I'm now back to all of my previous activities . I wish you the best of luck in your recovery!
My son passed away in January 2008 aged 24 from PVL-MSSA. He was previously very fit and healthy and was admitted to hospital on a Monday and died on the following Thursday. We realise it is very rare so I just wanted to make contact with you. Glad you survived this horrible, horrible thing!
I'm so so sorry to hear about your son. I had never heard of it before and ill never find out how I developed it. It is a horrible illness and has changed my life, however I am now trying my best to raise awareness. Thank you for getting in contact.
Hi Mum of Adam,Thank you for getting in touch.So sorry to hear about your son.. Unfortunately PVL-MSSA has quite a high mortality rate as it's so virulent and aggressive and does tend to affect younger and fitter people. I too was very fit before being ill. Did your son have the Necrotising Pneumonia form of the infection as I had ? Apparently it can also affect the heart,inside the bones but more commonly wounds but it still remains very uncommon and most of the ICU Doctors in the Hospital I was in had never come across it before..One of them even wrote about my case in a medical journal.. Out of interest,what area are you in ? I'm near Belfast; Northern Ireland had around 12 cases of PVL-MSSA as far as I can remember that year (2013).I knew of another person connected to my place of work who also had it but sadly died and I never got to meet her..The local Public Health Agency did an enquiry and my work place got very seriously monitored and inspected.. Thank you for sharing the story of what happened to your son. Take care,I wish you the best,XO
Thank you for replying. My sons death certificate says pvl and necrotising pneumonia as cause of death. We live in Yorkshire but my son was in the Royal Navy and on board his ship in Plymouth when he became ill. All the crew were tested and the ship was forced to delay deployment until it was deemed safe. We were told he probably contacted it through a wound but can't be certain.
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