Oesophageal Patients Association
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Weak

Hi all my mum was home yesterday from hospital she was in there for nearly 7 weeks with complications ... Where she has been in a induced coma for so long and not done a lot of excercise she has lost all her muscle so is very weak ... Has anybody els had this problem and how long did it take to get it back ?

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I also had a seven week stay in hospital after the surgery. I came home very weak as a result of a major chyle leak. I also had a blood infection and pneumonia. It was just over two years ago. However I was determined to recover. I ate as well as I could. Initially I was on a no fat diet then put on a high protein diet as by then I was malnourished. I became fit by gradually increasing my walking and practising pilates and used light weights. As well as rest! It took a long time. The hospital said it could be two years because of the complications It has taken time but I’m not far off normal. Your mum will get there. She must be delighted to be home. I know I was ecstatic. I had begun to think I would never come home again.

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She is really happy to be home but gets so tired easily ... And the stairs is hard work for her she looks so slim from losing all her muscle but she had only lost 4 pounds in total which is good ... I know her being breathless is normal but I know it will take time ... Also she keeps gagging like clear Sylvia up is that Normal do you know ..

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Yes it is normal for the gagging up of syliva , I had this for over 12 months & still get it occasionally now some 8 years after op if I eat too much.

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Only losing 4 pound, thats incredible I lost over 3 stone but I am now trying to lose weight again as I have put too much back on again! !!

Regards

Jan

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Thank u for your reply ... I'm guessing the syliva is just the lungs ect still sorting there selfs out

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Hi there glad she is home and on her way to recovery. The road ahead is a bumpy one with adjustments to diet and exercise. In the early days walking round the living room /garden was enough for me .Each day trying to do a little more before venturing out up the road. Doing 3 deep breaths a couple of times a day to expand the lungs. I didn’t do any other exercise for a year apart from walking and a few stretches. I used to get extra breaths bit like hiccups!! Yes I used to get clear saliva coming up. Remember little and often food wise. Gagging at food was normal for me and some others a bit psychological.

Remember not to put too much pressure on her to eat she will get there . Trial and error with food. I couldn’t do full fat and a lot of sugar it caused dumping for me.

Good Luck

Debbie

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Also getting up and going to bed I used to have to sit on bed to dress with help as I used to get out of breath. Needed help washing personal care for a while .2years down the line i have only just started doing the housework hoovering/changing beds etc. Everyone is different. I go to the gym through Macmillan exercise 12 weeks free then reduced rate.

You can claim for a benefit called PIP

Best Wishes

Debbie

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Thank u for the advise means a lot

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Hi Calboy. Although I was only in hospital for 14 or 16 days and asleep for five days post-op I lost around two stone and was very weak when I left hospital. My main exercise was walking, and walking more and more each day. Strength came back gradually and I can remember the first time I managed to walk as far as the pub. It takes ages, and regaining muscle takes longer. But it does come back. You get fitter, the fatigue reduces, you can walk further and gradually muscle may return. I think you have to be pretty disciplined and walk every day, even twice a day.

Regards

Haward

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Hi, I am two years post IL.

Was stuck in hospital for three months due to a leak. Lost muscle mass and a belly (24kg)..

Get to the gym, the only way I have found to rebuild, walking is good for breathing and apetit but the gym is the real answer👌😎

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Hi my mum had a leak also the stent is still in she has to go back in 2 weeks to see if it has healed ... She so breathless at the moment but I will suggest this to her when she feels strong enough thank u ..

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Walking is brilliant. Initially from room to room then venturing a bit further each time. The first six months were really hard going. I am a pilates teacher and my first exercises were very very modified. I was glad to have this skill in my recovery. The surgeon told me I would need s rest after each activity at first. So get washed rest get dressed rest! But it does get better. I can only describe it a babies lifestyle. Ie eat something rest activity rest in an endless cycle throughout the day. My weight actually went up in hospital but it was two and a half stone of fluid. I was very swollen. The actual weight loss didn’t show until the fluid came off. When your mother is a bit better and managing well that’s the time to start rebuilding strength and stamina. Meanwhile she just needs to settle back home and enjoy being there. Good luck!

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Thank you for ur reply

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Hi Calboy. Hope you are ok. I assume your mum was seen by a physio before she was discharged home? It doesn’t take long for the muscles to start to waste after not being used regularly so I’m not surprised she feels very weak... I think for now the main aim is for your mum to be comfortable and maybe work towards acheiving simple functional goals with ease such as sitting to standing, walking, managing stairs independently (if appropriate). She could also do some static muscle exercises whilst lying or sitting. For example tending the quad muscles in the thigh by pressing the knee into the bed and pointing the toes to the ceiling. Strong quads will help her to transfer in and out of chairs and beds with more ease. I personally would request a physio home visit for your mum and maybe an occupational therapist so they can assess her environment and give her anything she needs to help maintain her independence. I wish you and your mum all the very best. My father in law is due to have his oesophagectomy in a couple of weeks... xxx

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My last post meant to say “tensing the quads” not “tending” 🙈❤️ Xx

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Thank you for your reply she is getting there now slowly ... She was walking round the garden the other day 😃

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Oh great stuff! Slowly slowly does it and a little bit every day will add up over time and get those muscles strong again. Good to not go out too far from home for now so she has the confidence to push herself a bit - knowing she can just relax and rest if it all gets a bit too much. Lots of love. Xx

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Thank you all best to u X

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So pleased your mum is home at last. She’s had such a rough time that it’s going to take a while to regain any semblance of strength. Others have given plenty of advice so there’s not much I can add - except to say that everyone is different and your mum will need to progress at a rate she feels comfortable with. You don’t say how old she is, but husband is 73 and, although he also had a stent inserted for a leak, he was only in hospital 14 days. After 6 weeks, he then had another 4 lots of chemo. It’s now 4 months since his op and 4 weeks since the chemo finished. He’s walking a little further each day and beginning to regain his appetite and eat more often. In total he lost about 14 lbs but most of that was excess weight anyway!! Your mum will still be seeing the oncologist I’m sure so do ask as many questions as you like - and ask the Macmillan nurses for advice on what exercises would be helpful. My husband was told the importance of doing the deep breathing ones - and also just to walk a little bit further each day. He still tires and gets breathless easily and there is a lot he is not able to do - particularly anything that involves lifting or bending. He also coughs a lot of mucus up. Let your mum do things at her own pace with advice and gentle encouragement. All the best, Kate

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Thank you Kate X

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