Life After ICU

[Lebabes]

Hi all would appreciate some advice. It's been 6 months since my discharge from hospital after a 4 week stay in ICU & 2 weeks on ward. was admitted due to a epileptic seizure and put into a induced coma as doctors cudnt bring me out of it. Was kept under for approx 3 weeks, resulting in pneumonia & kidney failure which thankfully was treated and sorted. Also had a tracheotomy fitted in 2nd week to help me breath etc. tracheotomy was removed day before my discharge (6 months ago) my voice still hasn't returned to normal is very husky, when I talk I get a lot of irritation in my throat causing me to cough a lot. Also struggling to cough properly and clear my chest. Since being at home I have had no end of infections and colds etc, can't seem to get back on my feet before another illness hits

Me. Has any body else had problems with their voice for this long after tracheotomy removal? Also any tips that may help me try get back to a normal standard of health. I'm constantly tired and ill. Any help would be appreciated

[Luckyone]

Hi Lebabes,

It's quite normal to not to feel your old self after the very traumatic experience of ICU, unfortunately it's not something you can prepare yourself for, 6 months is a relatively short time so allow yourself time to recover, the body looses around 2% through muscle wastage during a coma and it takes time to build it back up.

I've met a lot of people, myself included that had a tracheotomy some have been left with a husky voice or an irritation in the throat making you cough, sometimes it goes with time but for me the irritation still remains at times even after 5 years.

My advice would be try and eat healthily, take gentle exercise and rest when you need to and if you think it would help visit an ICUsteps support group meeting if you have a group near you, details can be found on the website at icusteps.org

It can be a long road to recovery as many of the posts on here will tell you, unfortunately we all belong to an exclusive club where normal is anything but normal, fortunately though we were the lucky ones that survived, I know at times it doesn't feel like that but things do get better with time so don't be hard on yourself.

Best wishes on your continued recovery,

Bill

[Lebabes in reply to Luckyone]

Thank you so much for your reply is much appreciated. This site has really opened my eyes in that I'm not the only one going threw these things. Maybe I am hoping for too much too soon, I just get so frustrated with the way i am and feel at times. Is so difficult to explain my feelings and thoughts to family and friends etc. I think that they feel that I should be back to my old self by now. Is reassuring that I'm not on my own in the way i feel. This site has given me a lot if insight to what is expected in the road to recovery.

[muncii]

Dear Lebabes - I agree with all Luckyone's comments. Especially about the 5 years after a tracheotomy (me too)

6 months on, from ICU, is not a long time (sorry to say that, but I think most of the posts here would agree)

I think we have to get the balance right between 'pushing' ourselves little by little, but being kind to ourselves at the same time. That's an individual thing and what works for one person would not be right for another.

All the practical advice about eating properly, getting some exercise, and resting, is important. I know it's not always easy, but can you avoid being near people who obviously have a cold?

good luck with your continued recovery - in a year's time you will feel a lot stronger

[Lebabes in reply to muncii]

Thank you for your response. I think I'm expecting too much too soon. Is so frustrating though at times. As much as I try I feel my body isn't with me on trying ( if that makes sense) i do a lot of walking but even that at times is such a struggle. I live on my own with my teenage daughter, she has been fantastic but also gets very frustrated that I am so tired a lot. Most days by early afternoon I could fall asleep standing up.!

[muncii in reply to Lebabes]

thanks Lebabes: yes of course it's very frustrating!, especially if you were a very physically active person before your illness. Don't give up - you will have good days, bad days, and terrible days, but it will get better over time.

(And there's nothing wrong with a little afternoon nap , now and then )

I can only say that when I was recovering, I 'delegated' various household tasks to outside agencies (I live alone) - eg I got a gardener, a cleaner, and I bought in ready meals from Wiltshire Farm Foods (I had to eat a pureed diet for three months, it was very boring) and then bought on-line from Sainsbury's. I always found the delivery people very helpful. Shopping can be very tiring - I'd recommend doing it on-line for a while.

Keep going, have patience, and you and your daughter will see a difference in a few months' time.

[Chez01]

Hi lebabes, totally agree with all of the above. It's been 5 years for me too, and I still get frustrated and angry at myself, everything that your feeling is totally normal, and please don't feel like you're alone, anytime your feeling angry or low come in here and write down your feelings, it's hard for loved ones to understand as they haven't been through the same experience (thank god).

Take care and don't be too hard on yourself. X

[Lebabes]

Thank you all for your responses is reassuring to speak to people who are/ have been threw the same. I have also been diagnosed with PTSD in the last couple of weeks. Is so difficult dealing with everyday life at the moment, the flashbacks I experience at times are horrific. Eg. Shopping in tescos and certain items being a trigger to things that happened to me while in a coma. The fear is so real causing me to have full

Blown panic attacks, resulting in me having to call family members to rescue me.! I really hope that things start to improve as I am becoming very much house bound, not wanting to go out for the fear of it happening again. I struggle to understand how debilitating it is. I thought surviving and being discharged from hospital was the biggest battle, how wrong was that way of thinking. The real battle begins after discharge x

[angelrock]

Please be kind and compassionate with yourself, it took me ages to feel alright still feel like poo. I had a tracheotomy too and recovered well from that also.

[Offcut]

I was 32 days with tracheotomy and I had a husky voice for some time. It was mainly put down to the throat skin joining the windpipe together. If I eat or sucked in to hard it bought on a coughing fit. If I swallow now 8 years later it will still move in a little but rarely makes me cough now. I do still lose my voice sometimes but I do have lung conditions to contend with that can affect my throat anyway.

I found slight lifting of the chin help stretch it into some form of normality.

Get well soon

[Pandora8]

Hi Lebabes,

I was in ICU for 2 weeks with PVL-MSSA double necrotising Pneumonia ,The A-Flu and Severe Sepsis 3 years ago.. I stayed in Hospital for a further 2 weeks and was off work recovering for 7 months afterwards. I didn't get a Tracheotomy as I was able to have my ventilator removed after 7 days. Just like you my voice suffered and didn't go back to Normal for about 4-5 months afterwards ! I was recently able to go back to singing in a Choir..after nearly 3 years my ''singing voice'' is finally stable enough ! Sometimes when I laugh hard I get a coughing fit still and since my airways were damaged and some widened I get obstructions and cough ( sounding like a smoker's cough even though I've never been a smoker !) Be patient with yourself and give your body time to recover and heal itself ; Things do get better !

All the best and take care.

[Lebabes in reply to Pandora8]

Thank you so much for your response. This site has been such a help, has put my mind at ease so much. I find that I get out of breath so easy doing simple things, not sure if that is down to the pneumonia or my airways being damaged due to tubes etc. i hope this message finds you well. Thank you again x

[Haly]

Dear Labebes,

I hope you are feeling better now. I have posted two comments already so I won't repeat myself. I have also spent 3 months in the hospital including time in ICU and Acute surgery unit. My voice was very weak after I woke up from my coma and it took a long time before my voice came back. Even today, 8 months later, I am still whispering. My doctors have encouraged me to speak softly and often. I have been told my my home care nurse recovery takes time and when we are out of the hospital, it is even more challenging to give ourselves the care we needed. I use my Microsoft outlook calendar to remind and motivate me to follow my daily schedule. Every time a reminder email appears, I am motivated to have a meal, drink a glass of milk, dish of yogurt, or do the things I have scheduled to do on a daily basis. Both my surgeon and family doctors encouraged me to eat a healthy diet, high on protein and iron, to help me get stronger. After I came home from the hospital, about 5 months ago, I was also very tired and couldn't walk very well. I am still using a cane. To get more energy, try to have more high protein snacks, enjoy some fruits throughout the day.

Throat: drink warm water with a little honey and dash of lemon juice. Hope this suggestion will help you a little.

Be kind to yourself. Give yourself time to enjoy your new day. Wishing you all the best and warm regards. Haly from Canada.

[Lebabes]

Hi all thought I would post a today as previous responses helped me considerably.

Having just been discharged from hospital again due to another episode of seizures, thankfully after 6 hours they managed to control them resulting in discharge after a couple of days.

I mentioned before about problems with my breathing, throat irritation and voice issues. I have now been diagnosed with subglottic stenosis as a result of tracheotomy. Currently waiting for a date for a op to widen, fingers crossed won't be too long. Has anybody had this procedure? Recovery time etc?

Also in the process of trying to claim PIP for the 2nd time after being refused originally as not enough points scored. Any advice on this mine field would be great.

Having to have soembody with me 24 hours a day, not being able to walk any distance with shortness of breath, can't do any personal care, cooking etc safely unaided isn't enough to qualify apparently

[Hellabelle]

I had no problem with my first and second tracheotomy. But after my second one healed, I was extremely short of breath, and when I got it looked at, it turns out that there was so much scar tissue from multiple intubations, and my vocal cords are paralyzed shut, which means I can’t speak, and my airway is so narrow the trache was my only option. It was supposed to be temporary, but now they seems lost as to how to fix my vocal cords, and are switching me to a permanent one. Communication is very hard. I miss having a voice...I’d take any voice over this opening my mouth and speaking...but nothing comes out. Doctors say that in time, my vocal cords may just fix themselves. Not helpful, I suppose. Sorry.