Rehabilitation question if you wouldn't mind....

[Jayswife-24]

As you prob all know my husbands story by now as I don't know what I'd of done without all your support I wrote about his muscle wastage after spending so far just over a month in bed would you be so kind to tell me how long it took you to be back on your feet and reasonably mobile I know it's a long process my husband asked me to ask as he is very upset and scared he won't be able to x

[Luckyone]

It's difficult to say as everyone recovers at a different pace, but going on my own experience it took me about a year before I became reasonably mobile, after spending 3 months in ICU I had lost so much muscle that I had to learn to walk again, but by gently exercising every day and physio you do finally get there, but now looking back 3 years later I can see how far I've come.

If you are lucky enough to have a local support group near you I would go along and have a chat with some of the other ex-patients and relatives that know what you both are going through and can offer some great advice and understanding..

I wish both you and Jay all the best for 2014 in his continued recovery.

Bill

[rachelsdad]

I asked my wife only yesterday the question "When i was in Hospital,did i loose weight just down to not eating?"

The answer obviously was yes! The reason i mention this is i was looking at all the weight i have put on over the last 12 months since i started getting better and in turn eating!

Muscle wastage or Fat wastage does look dramatic.I remember when i was in ICU being offered small high protein

milk drinks thinking thats all i want today.20 months later i have just had a huge Christmas dinner and enjoyed it all.

My message to yourself and Jay is you are going to have to allow time.I went back to work too early,3 months after my Heart Surgery and really wished i had not pushed myself to get better but just allowed nature to do the healing!

Tell him that it is not a bad thing to rest, infact it is the best thing! He will get better in his body, but his mind has to tell him that he is getting better first.He has to reasure himself and any reasurance from you will help!

Best of luck

Richard

[ICUsteps-Peter Partner ICUsteps in reply to rachelsdad]

Hi Richard,

Nutrition is a major issue but much of the problem comes from the body's inability to metabolise food when we're so sick rather than a lack of eating. While patients are mechanically ventilated, we can lose as much as 2% of our muscle mass per day. There's some interesting research going on right now into how to prevent muscle loss and improve our uptake of nutrients (we can end up being malnourished due to our body's inability to absorb food).

I don't miss those liquid plastic energy drinks (though the banana flavour one wasn't too bad) but they're certainly needed to build our energy back up as our normal digestive processes recover.

You're absolutely right about listening to your body and not pushing yourself too hard - I learned that the hard way.

Best wishes,

Peter

[vianne]

Hi, I am so pleased that your husband is on the road to recovery. I was in hospital for 6 weeks and it took me approximately 2 months to get back to normal movement but maybe a bit longer for the cough to go and my voice to return to normal, I was 55 at the time and with no other health problems. Obviously it varies from person to person and all I can say is that he will get back to being himself in his own time but please tell him not to worry too much, it might seem a long road but I found that I would feel better as each week went by. Every Friday I would think "Oh I feel better/can do this or that better than I could last Friday". It seemed to help to think that way and be very aware of what you CAN do rather than what you can't do. It is a very scarey time and you have both been through such a traumatic experience but plenty of us get through it and you sound like a very close couple which I'm sure will help. Wishing you both all the best for 2014!

[Jayswife-24 in reply to vianne]

Thankyou xx

[AndJan]

After spending 23 days in CCU then 5 days on a ward I had lost over 2 stone - much of it muscle - so initially needed a zimmer to get around for the first 2/3 weeks. With the physio's guidance it took me around 6 weeks to build up the strength to get upstairs - so I guess patience is needed.

It took around 5 months to get back to normal weight.

Is any assistance re physical rehab available in your area? - if so I would thoroughly recommend this.

Good luck - you will get there !

[Offcut in reply to AndJan]

I was in ICU for 32 days and lost 3.5 stone mainly muscle I was helped to sit up in a chair for a few days. Then stand but could only move about with a zimmer for 2 weeks progressed to 2 sticks for 3 weeks and then one for a short time. I have been told not use one if I can as I have arthritis issues that it agitates.

We are all very different at the start, so the times will very much depend on how strong you were before ICU and how much muscle and were it was lost.

It takes time but do not overdo it.

Be Well

[Offcut]

I was in ICU for 32 days and lost 3.5 stone mainly muscle I was helped to sit up in a chair for a few days. Then stand but could only move about with a zimmer for 2 weeks progressed to 2 sticks for 3 weeks and then one for a short time. I have been told not use one if I can as I have arthritis issues that it agitates.

We are all very different at the start, so the times will very much depend on how strong you were before ICU and how much muscle and were it was lost.

It takes time but do not overdo it.

sorry replied twice used to old system at the bottom reply

Be Well

[Jayswife-24 in reply to Offcut]

This is very helpful thankyou he has been in a chair and stood up a few times but it's all very overwhelming I think he believed thAt if they just helped him up he would walk out but as he's spent over 4 weeks in bed he know understands it's not that simple the weight loss is scary he must feel it as he refuses to look in the mirror x

[ICUsteps-Peter Partner ICUsteps]

Weakness is the main common physical issue after critical illness. Being on a mechanical ventilator can cause muscle loss of up to 2% per day and while we're so sick, our body doesn't absorb and process food normally. Together these factors can make us incredibly weak but it does recover in time but it is a slow process.

The main things to remember are to listen to your body and don't push yourself too hard. It can be frustratingly slow but comparing your progress against the previous days or weeks can help let you realise that progress is being made.

Our patient information booklet has a section on nutrition which may help and we also have a physiotherapy supplement.

icusteps.org/assets/files/I...

icusteps.org/assets/files/b...

Best wishes,

Peter

[Jayswife-24 in reply to ICUsteps-Peter]

Thankyou so much for the links very helpful x

[Jayswife-24]

Thankyou all for sharing your story's I will show him this when I go in later he needs to know that people have been there done that and are now much better so thankyou from both of us! He keeps worrying as his pulse rate has been at 116 bpm now for over a week he thinks he's going to have a heart attack but his bp is fine so I assume this is high anxiety and his new love of coffee and 7up! I tell him to drink more water but he just gets mad :/ hopefully they will let him go home for a few hours new year were trying to see if this is possible as he thinks he's going insane but with all your help and support reading your story's has really helped him so again thankyou xxxxxx

[Barbarajoy]

i was unable to walk or even get my breath for several weeks but i am an old en 63years I was in hospital for eight weeks and like your husband got very upset and anxious but gradually day by day it started to get better, my lungs are damaged but i make sure a little exercise helps. Remember you take small steps every day before you can run. i do hope your family has a happy new year and best wishes to you all x

[Jayswife-24 in reply to Barbarajoy]

So glad your ok now! Hope you had a good Christmas and thankyou xx

[Lynn2010]

Its a long, long road and there will be setbacks. I was in hospital dec 2010 with swine flu, pnuemonia and then i caught a ventilator aquired infection in hospital. i was seven weeks in icu 5 on a ventilator in a coma and one week being weaned off the ventilator then three on a general ward. I came home on a Zimmer frame and tried the first night to go upstairs i couldnt lift my leg however much i tried. It took Six weeks until i was able to crawl up on my hands and knees. It takes determination. I had to learn how to walk and use my hands i couldn't feed myself for weeks i was like a baby i got more food in my hair! I also peeled abanana and was so worn out i fell asleep before i could eat it. Three years on i still have lung problems, my short term memory is horrendous and ican walk around 20 ft before getting breathless i see several consultants but im still alive and im supposed to be dead. That keeps me from getting too fed up with life as however bad it is its better than the alternative.

The main thing i found is there isno point dwelling on what you can't do but to try and be thankful for the things you can. I guess ive always been an optimist so maybe that helps. I cant play football with my kids but i can still cheers from the sidelines.

I hope jay continues to make good progress just try to remember its a marathon not a sprint. He has you so he is halfway there i couldn't have done half of this without the love and support of my husband and children so Jay if you read this give your wife the biggest hug you can because i believe icu is worst for the families than the patient.

[Hidden]

Hi, I am a healthcare professional and work in Intensive Care. What is really important is that the strength will come back but it needs working on. Take things gradual and work up. What i say to all my patients is that you loose a great deal of muscle mass loss whilst in bed and on a ventilator, it is not just down to being in bed but also the loss of protein from the muscle mass store. this protein is used to provide energy whilst critically ill. It may take up to a year to build your strength depending on how long you have been ventilated for, but it does get better just keep positive and think how far you have come. Often patients discuss hallucinations and dreams, yes we need to sedate patients and this will have an effect but also critical illness causes this, infection, low oxygen levels even some antibiotics. Sadly just being critically ill, what is important that you have information and understand. The information on the ICUsteps website is very useful and there are some supplements which may help. Good luck and keep strong, sleep and nutrition is very important and keep talking. Hope this helps.

[raffles]

Hi Jayswife-24

If I can tell you my story it may help you ( and others ) it also involves the other points you have raised about moving from ICU to a normal ward and weight loss--its a little involved but please bear with me.

In May of 2012, I suddenly collapsed at home with intense pain in my abdomen, I vaguely recall telling my wife to call an ambulance, the next thing I remember is waking up in bed in ICU, my wife was talking to me and telling me I had been in a medical induced coma for three weeks as a result of necrotic pancreatitis. She had been told three times that I was unlikely to make it through the night and to send for the family. I woke up with a trach in and, tubes in every orifice, I could not speak because of the trach, my lungs had collapsed, I had pneumonia, and other organs were failing However although still dangerously ill the docs considered I was stable enough to be moved to HDU, but because of the coma I had ( and still do not have any ) no recollection of my time in ICU.

I spent a further 9 weeks on HDU, where I experienced all the problems/difficulties that others have mentioned--hallucinations, hair loss, confusion, reaction to medication (--at one point I was moved to a side ward because I had developed an infection because my immune system was failing ) etc etc. During that time I had a total of 5 operations to remove necrotic tissue, after each one I was very ill, but the Doctors and all the staff were very supportive and telling me to keep fighting. I could not eat and lost a total of 5 stone in weight ( a very effective diet, but not one I would recommend ) At one point I was taken off antibiotics because I was building up resistance to them, after a week I was put back on antibiotics of industrial strength.( which had their own problems )

During all this time I was being fed thro a tube, and although my wife, who is an excellent cook and, prior to her retirement, taught cookery and is a very skilled baker ( but I would say that would n't I) kept bringing me my favourite things I just could not eat them ( mind you, the nurses benefitted from her cooking)

Because I had been in bed for so long, my muscles had wasted away, I could not even move about in bed, the nurses had to do everything for me ( and I do mean EVERYTHING---very humiliating ) I had visits from the physio people every day, starting with moving my legs, then hips, lifting my arms, then helping me to sit up. The big day came when they said they were going to get me to stand up--after several failed attempts they sat me on the bed again. Prior to my being taken ill, I was a very active walker, regularly hiking miles across the Pennines where I live, so not being able to stand was very frightening for me, I became very depressed, My wife, daughter and other family members and good friends did their best to lift my spirits, but it was my eldest granddaughter ( 9 yrs ) who reminded me that I had promised to take her hiking to the Peel Monument, which sits on the top of a nearby hill, that really hit home. The next day when the physio people came I managed to stand( with a little support ) and then over the weeks, I was able to make good progress, from standing to walking a few steps to eventually a tour of the ward ( all with the aid of a zimmer and support from the nurses because I was still wired up to two drips, an intrav. drug feed, feeding tube and several monitoring leads).

After I left HDU to a general ward, the difference was unbelievable---lack of attention, failure to appreciate and understand what a dreadful experience I ( and my family ) had gone through--at one point I was severely rebuked by a nurse for asking for a commode instead of going to the loo-- I pointed out to her that I needed a zimmer frame to just stand up and was still wired up as described above, I asked her how did she expect me to use a zimmer, push two intrav drug trees, a monitoring recorder and carry a catheter bag, all whilst holding the various wires attached to my body, she became very aggressive, but did bring me the commode ( she left me on it for along time ) I intended to take the matter further, but I never saw her again. All the other members of staff on that ward were good, but grossly overworked--hence the feeling of neglect I sometimes experienced, having said that, I do feel that it was a case of being a " big fish in a little pond whilst receiving one to one nursing in HDU to becoming a little fish in a big pond where I was just one of many.

All this time I was continuing to receive physio treatment

I was eventually discharged as an out patient, I was also referred to the physio. dept for several weeks.

.

The way I dealt with every day whilst in Hospital was that I set myself targets--walk a little further round the ward each day, then when I was eating again, I would ask my wife to bring me something each day in addition to the special diet the docs had put me on. When I was discharged I set myself targets for walking ( still with a stick )-a little further round the garden, then up the drive where I live ( the neighbours would come out to cheer me on ---very emotional )--after a few weeks of this I went for the big one---I drove the car to the end of our drive.--what a feeling. I started going for longer and longer walks until in January of this year I went for it---I made it to the top of the hill to the Monument--the sense of achievement was unbelievable--I asked another walker to take my photo which I later gave to my consultant ( I had promised him that I would make to the top of the hill and send him proof --he has it on his wall and shows it to other patients--or perhaps just throws darts at it ) Each time I hit my target, I congratulated myself on another " victory "--sometimes my wife would pick the target and when I hit it, we both celebrated

In October of this year, I had another flare -up of pancreatitis, but not as bad as before, but I ended up back on the general ward I had been on last year, many of the staff were still there and remembered me, I must say they were great--still overworked, but great, nothing too much trouble and very attentive, which makes me think that the " big fish/little fish syndrome does apply sometimes.

I appreciate my approach to recovery will not suit everyone, and it was very hard at times, with two steps forward and one back, but it worked for me--I have put back on a lot of the weight I lost ( probably too much )--I still have one or two problems--shortage of breath, sometimes tiring easily, difficulty sleeping etc, but when I consider the alternative, I will put up with those--I am still here, there were many poor souls who did not make it, I consider I have been very fortunate

I hope Jay continues to improve--it may well be a long and, at times, a rocky road even when he is discharged, but with your support he will make it eventually--It is very important to remember that other members of the family suffered, a lot of support is given to the patient, but sometimes close family members are forgotten, I am sure that in most cases of recovery, that recovery would not have been as rapid, or indeed possible, without the support of family and friends--so you take care of yourself as well and get all the support you can from wherever you can

Best wishes for a continued recovery ( to you both )

Raffles

[Jayswife-24 in reply to raffles]

Thankyou so much for your horrific but very inspiring story it brought tears to my eyes! You are a very strong amazing person who has gone through so much and come out the other side! Jay will be very inspired when he reads this ill show him later he may have some neurological damage we are looking into it but what ever happens I will be right beside him every step of his journey he's coming home for a few hours tomorrow we are very excited and I have a lot of support to help lift him and move him so very excited for that!!! From the bottom of my Heart thankyou for taking the time to share your story it's a great comfort to is that your doing well now! Happy 2014 love Paula, jay, Ella & jj xxx

[Skippyc]

Hi me again!

I was in hospital for 4 weeks & have now been home for nearly 4 weeks.I had also had a fasciotomy on my lower right leg to try & find the infection (cut it open to the bone) so this affects my mobility a bit. but I am walking around the house with a stick & standing in the shower. Because of my heart damage I can't walk for very long & if I stand to long I do get tired but I definitely feel I can manage to do day to day things with a nap after lunch & regular breaks & snacks to keep my energy up!

Hope this helps x

[Twoblu]

Hi. That is. A million dollar question. Everyone has a different journey. I would say, make sure you push for intensive physio. That to me seems the crucial thing. Try doing exercises while you visit. Move his arms in and out stretch if you can. It may be good to ask a physio to show you what to do. Each movement ought to help.Best wishes.

[Twoblu]

I wish your Husband the best. If he is able to push for intense physio daily

Keep on trying to move even if it is a wiggle of his fingers. It will take time.

Stick with it my friend