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Evergreen

Struggling after Sepsis, would appreciate help and advice

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Thanks so much for sharing your experiences and I'm sure you will get lots of support here from professionals and other survivors.

 

Just to help, I've added a PDF version here as well

 

Evergreen.pdf

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Hi Evergreen,

I'm not surprised you're feeling really awful after going through all of that! I won't comment on your treatment in the first hospital - except to explain why you probably had difficulty breathing after your operation.

Very occasionally( I've known it 3 times in 38 years of nursing) a patient will be over sensitive to one of the drugs used in giving an anaesthetic - we use a sedative to put you to sleep, gases to keep you asleep during the operation and and a 'paralysing agent' to enable the breathing machine to breath for you and enable the surgeon work. This drug completely relaxes all your muscles, including the ones used for breathing.In the majority of cases, this is reversed easily by other drugs at the end of the operation and you wake up breathing normally. Very occasionally the paralysing agent hangs around in a patient's body for longer than normal - the patient is sensitive to the drug and as you said can take hours to wear off. The medical team will have noted this and the drug will not be used in any other surgery you may need. It would be good for you to know the name of the drug used (there are different ones) so you could wear an alert bracelet with the info on.   

As you have had two quite major surgeries, you are likely to get stomach pains, be swollen and possibly feel quite tight in that area for some time. When you have sepsis- your immune system takes a real knock which can leave you having sweats, palpitations, dizziness etc. which in turn increases any feelings of anxiety, quite understandably. It can take weeks for your liver enzymes to settle down again, so don't be too alarmed by that - but if your skin or the whites of your eyes start to go yellow just get checked out, so the doctors can keep an eye on it. The absolute exhaustion is normal too. 

You are at a very early stage in your recovery. It can often take a couple of years to feel your normal or near normal self again but you will improve bit by bit as you go along. Keeping a diary of what you can do often helps to see how much better you are getting.  

Try some relaxation tapes and set aside several times a day to completely relax. There are some good relaxation exercises available these days. Anxiety takes up an enormous amount of energy - which will stop you recovering as quickly. I know it's easy for me to say but the more you can relax, the better you will feel. The anti depressants will take a few weeks for you to get used to them and start to work - so give them time. Have you seen our sepsis booklets - there's one for patients and relatives and a post operative and survivors one on our website you can download or phone the office on 0845 606 6255 and the girls will send you copies. They explain what to expect after sepsis.

Keep in touch and let us know how you are going.

Take care, Libby.

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Hi Evergreen

 

Before I read your letter I noticed the time you had sent it. In the middle of the night. I am sure so many of us have done that because it's a lonely time to be so unwell in the night. No one to talk to and our minds going into overdrive. Well I'm speaking for myself too.

 

You have had such a rough time and it's too fresh for you to be feeling anything but how you are. Mine is a lot longer it gets a little better then returns either because I have overdone it or maybe that's just how recovery is..

 

I think ...I do question we should be feeling a lot better. In some ways harder on ourselves because some people around us think we should. I went through and still do about the thoughts of family, dying and I know that slows down recovery but our thoughts wont be any different until we feel better and that takes time. That's difficult isn't it ?

 

Interestingly enough my GP put me on a low dose of antidepressants too, I ask each time I go shall I come off them but no. I am lucky to have a good practice of nurses and doctors, I hope you have the same or at least one person to 'hear' you.

 

Don't let that experience you had of that doctor put you off he was not the normal.  I know too well when you are very ill you are not to' with it' to ask more questions and be more assertive but you can't. So like you I have these conversations in my head as if he were standing in front of me. You sound as if you'll know what I mean. . its only after you get home and start thinking of what happened it all comes flooding back.

It's a shock to the system, one minute you are so ok and then next precious life can be changed.

 

Not being a medical person I know, but I would think its very ok as it will help the recovery. Mmmm again,as usual I am very good at giving words and am still struggling myself.

 

I'm not sure that I have helped but wanted you to know someone has heard and listened. :)  I am here. Take care and REST when you need to

Best wishes Isabel.  

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Hi Libby and Isabel,

 

Firstly, I am so sorry I was not able to reply to you earlier and say Thank you- I have not been well enough to be online. Thank you both SO MUCH for taking the time and caring as you did to write back to me and help me in the ways you did.

 

I am so thankful for everything-your thoughts and advice, empathy and understanding and knowledge. You've helped me so much in many ways and it's amazing how two people can make such a difference! I would like to write more back but just for now wanted to say THANK YOU - for your heartfelt kindness and understanding.

 

It helps more than I can express to know I'm not alone, to know that others understand and to have that support. And I also hope I can offer that to others as well especially in the future. I'm really grateful for this forum.

 

Thank you and hope to write again soon,

 

Kind Regards,

 

E

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Hi Evergreen,

Thank you for your kind words - I'm glad we were able to help. Do keep in touch and let us know how things are going.

BW, Libby.

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I am sitting contemplating the past year. What a year, mainly because of Septic shock and a stay in Intensive care etc etc. I do feel lucky because I feel I got good care throughout the worst part. The district nurse was also very good in her after care. The main issue has been the continuing fatigue and the associated psychological affects. I do hope you are beginning to feel a bit better. I do feel I have progressed. My immune system is not brilliant so I have picked up a bad cold and it is taking longer to go, but my energy levels are slowing returning. I am up to five 1/2 days at work and will add to that after the holidays. Mindfulness has also helped me hugely. Worth looking it up.

 

The best bit is that we are still here and I try to keep looking at the positives (not always easy) and be grateful for what I have. Take care of yourself.

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Hi Gillianflutes,

Glad to hear overall you're feeling a little better. The chronic fatigue can take a while to resolve. We now have an information sheet on Chronic Fatigue which may provide a few helpful tips. You can download it from our website in the 'Recovering from Sepsis' section or we can send you a paper copy if you'd prefer. Just ask the girls in the office on 0845 606 6255.

 I'd be really interested in your thoughts on Mindfulness - and anyone else's experiences with this therapy. I've heard good things about it.

I hope your cold goes soon.

Have a wonderful Christmas.

BW, Libby.

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