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Recovery


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#1 davegore

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Posted 28 February 2017 - 06:23 pm

Thanks for accepting me into the group, and I myself am at the same place a lot of other people on the forums and the group seem to be at, asking the question about what can I expect recovery and time wise.

 

My story is that I have something called polycystic liver and kidney disease, about a month ago I had pain in my kidney, just a pain, but after 5 days it turned into a stabbing pain and a trip to A&E where they diagnosed a ruptured cyst, kept me in overnight and sent me home with a shedload of pain relief, all was ok until four days after when I woke up just feeling a little off, and gradually over the weekend went from a little unwell to a 4am 999 call as I was so weak and hot and feverish.

 

I was lucky apparently to get into the hospital when there was almost no other patients about, and the ambulance crew had already worked out that I had sepsis symptoms with their original tests, so less then half an hour after getting there I was on an antibiotic drip, which took over 5 days to get my temperature under control, peaking I think at 40.4 degrees, and after 6 days in i was discharged.

 

The consultant told me they had grown e.coli in my blood samples and this had gone on to be the cause of the sepsis, whether the ruptured cyst was already infected or not they weren't able to tell me, but what 3 doctors have all said is that I was fortunate to get seen as quickly as I was, and they a delay could have been incredibly serious.

 

My biggest concern as I said at the top of the page is my recovery, I only realised when the doctors told me exactly how serious my illness has been did it really sink home, I am only 50, but fit and mostly healthy, cycle to work daily, and do a manual physical job, but in my whole life I have never felt as bad as I do now, almost permanently tired, my body is aching,  never slept so much, and even small steps, like a walk on the beach seem to knock me back when I hoped that they would make me feel better and maybe stronger.

 

In some respects maybe I am looking for some reassurances from other people who have been through what I am going through now, it's actually a little scary too feeling as I am feeling now, but reading through some of your stories has made me feel a lot better regarding what I can expect from myself.

 

Any comments or opinions would be gratefully received.

 

Dave



#2 Gillianflutes

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Posted 28 February 2017 - 07:04 pm

Hi Dave, I had Sepsis in July 2015 at age 53. Like you I am active (triathlete, cyclist etc etc). I don't want to depress you but I don't want to paint a rosy picture either. We are on a long path with lots of bumps along the way. Life is different and I have had to accept that it might not ever be the same as it was. Recently I decided to start creating the 'new' me, instead of harking back to the way I was and beating myself up. Not sure if that makes sense? Finding the right pace is the most difficult thing. As soon as I start to feel good I do too much. But how do you know what is too much until you try? I am back on the bike. Hills are horrendous and I am slow! My bike muscles have gone and it is going to take a long time to build them up again. I am running but again pace is slow and not running for any great length of time. It seems that if I plod (maybe more than plod) I am fine but it is when I push (I think there might be a link to adrenaline but I am not medical so don't take my word for it) something happens and that is when my body rebels and I go downhill, back to the awful heavy exhausted feeling. I have started to write a blog about my recovery. Doing it to help me see improvement (I hope!) but also to maybe help others. I have found it difficult to find anything positive/practical to read during my recovery. On the blog I share the different things I have done to help me get through the past eighteen months. I emphasise that I am not medical but I have always been a very fit, clean living person. The blog is on Wordpress and is called 'Believe!'. I write under the name ' Wisewoodwind62. All the best. Gillian
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#3 Palmiter

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Posted 28 February 2017 - 07:12 pm

Hi Dave!

It has been 7 years since my encounter with SEPSIS. After 4 months in the hospital and 3 months of physical rehab,I can honestly tell you IT DOES GET BETTER! I can remember when making my bed was the "project" of the day, and after that, time for one of my many daily naps.
Currently, the only side effect that still lingers is occasional leg and foot pain. A couple of over the counter pain pills usually takes care of that. The main key for YOU at this conjecture is to be PATIENT with yourself. You body has been to hell and back and will need time to heal.It is important that you realize your limitations now will only improve from here on end. Now, go ahead and take that well deserved nap :)

Bob L.
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#4 hollydollysmum

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Posted 28 February 2017 - 07:59 pm

Iam 6 years post sepsis, lots of complications occurred and left me disabled iam only 39 and always tired and sore. Its different for everyone.
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#5 MarkDUK

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Posted 01 March 2017 - 12:01 am

Dave, welcome to the forum and to the survivors club. Bluntly, sepsis has made a good effort in trying to kill you and would have done so but for top ambulance people,antibiotics and your good health. If someone had met you late at night and kicked you about, strangled you, bruised you internally and poisoned you before leaving you I guess you'd feel dreadful for weeks after and this is what sepsis has done. Beating it early gives you a big chance of a full recovery although in the next few weeks you can feel exhausted and suffer pain. But as I said, it's understandable.
Most folks make a full recovery and often its because they have listened to their body regarding tiredness and done no more than able to do. Keep positive and please share youe ongoing improvements. Mark
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#6 davegore

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Posted 01 March 2017 - 11:14 am

Thanks for all the replies so far, as I said in my post I was almost looking for some reassurance that what I am feeling is probably what I should be feeling (make sense?), I will admit I do find it hard to relax, and even the two weeks I have been off work so far have been hard, but as I keep hearing, listening to my body seems to be the simplest, but not necessarily easiest thing to do, but already I seems to be one step forward then two steps back if I try to do a little too much which I have found to my cost on a couple of occasions, but I am learning, and one of those things is not to set sights on going back to work too early, or rushing it either.

 

Thanks again.

 

Dave



#7 red squirrel

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Posted 01 March 2017 - 01:24 pm

Hello Dave and welcome, from reading your post it sounds normal to me, and from reading all the other replies i hope you feel some reassurance. Its taken me quite a while  and with a great deal of resistance on my part to come  to terms with sepsis and what that actually means as far as recovery/timescale.and for some ongoing issues.Iv read as much as i can both on and off this forum, and iv used the trust telephone when iv been concerned with worrying symptoms and would encourage anyone to do the same.I  work in a very physically demanding environment so iv had to learn to manage my expectations in that regard and make changes where possible.

Its only a few weeks since you were discharged so in that sense its still early days,but your doing really well, although it may not feel like it at times. recovery will come,although this can be painfully slow at times.

Be good to yourself.

Rest when you need to.

Take whatever help is available

 

kind regards ian


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#8 mcc

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Posted 07 March 2017 - 11:22 am

Hello Dave,

 

Yes, it sounds like what you are feeling is normal.  Everyone has a different recovery, but it does take a long time and you have to pace yourself.  Look for small improvements and build on them.

 

I'm a little younger than you, and was also fit and healthy, and cycled to work every day.  My case of sepsis developed after a strep a infection in my throat. I spent 2 1/2 weeks in intensive care, and was in a coma, on a ventilator, and dialysis machine for the most of the first week.  I spent another 3 months at home before returning starting to return to work, and expect it will be another 6 months before I'm working full time again.

 

Physical recovery has been very slow, but steady. I lost a lot of weight in hospital, and it took me a few days just to get out of bed and then to walk.  I've tried to do some form of exercise at least twice a week, starting with basic functional exercises at home and later progressing to a gym. I'm now cycling to work again each day and also going to a gym for weight training twice a week. I'm still a long way from the strength and fitness I had before though.

 

Matt


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