I also was given a tracheotomy. I have improved a lot since the op and went back to work part time in October. I still have discomfort after eating every day and also have palpitations when I get pain or discomfort. I can still only eat tiny amounts, less than half a ready meal for 1, and rarely feel hungry. I also get very tired and sleep a lot more than I used to. I have had blood tests and am not lacking in anything and my heart tests are also fine. I spoke to my specialist nurse to ask when will I stop being this tired and having pain or discomfort daily. She said I was an unknown quantity as she had never known anyone have a cardiac arrest after the op. Originally, I was told I should be ok after 12 months and as it is past that marker it is starting to get me down. Has anyone else experienced the same or know of someone who has?
Thanks
Sue
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SuzyJ
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I had op with all oesophagus removed March 9th 2011.For pain,tiredness eating it took me over 12 months to start to feel normal.I still struggle with eating but it is getting better week by week although will never eat as much as did before due to the smaller stomach! Put that cardiac arrest in the past now as obviously your doing normal in recovery.My surgeon,nurse and OPA say 2 years before I feel normal but can still have a few things but all those can be adapted to.The op is one of the most invasive ops you can have.Note.I still sometimes dont want to eat and when I do very small portions but learning thats how it will be.I consider myself lucky as am still alive and thats the main thing for me.Trust me It does get better and times I didnt think there was any hope making me down.Things you say 99% of us have had them or had them.Hope that helps
My experience is not exactly the same as yours but there are some similarities.
I had my oesophagectomy in June 2006.
Whilst initially I was doing well after 4 days it became apparent that I had a leak and started to deteriorate rapidly.
After 6 days they had to perform another operation to investigate the problem which lasted 5 hours.
I was in a bad way. My lungs were suffering and I was also put into an enforced coma with a tracheotomy.
I spent 40 days in intensive care and 60 days in hospital in total.
I was on a feeding machine for 3 months whilst I was nil by mouth.
Like yourself I was constantly fatigued and wondered if I would ever recover.
It did take me longer to regain my equilibrium than most others who have this surgery.
Maybe as long as 2 years rather than one.
But I did achieve it and managed to return to some of loved pursuits such as skiing after 2 years and scuba diving after 3.
Today aside of the normal side issues caused by this type of surgery I lead a full and active life.
I know it is hard and I really empathise with your position and frustrations.
Hopefully the next year will see you regain some of your former self.
I wish you well and do let us know how you are getting along.
If you have any further questions or would like to chat on the phone let me know.
Larry
If your tiredness is not caused by lack of iron / anaemia etc, and from your blood tests it sounds as if it is not, then I think you might have to think that it is your body just taking longer to recover. You cannot rush it, but I am sure you will say that this is a totally different timescale than you had expected! It might help to try and think back to how you were last week, last month etc. It seems compulsory for us always to think that it is taking far longer than it "should"
I do think that you are doing well to be back at work. Work tends to be tiring for all of us! So give yourself a pat on the back for that!
Not feeling hungry might possibly be to do with how the nerves around your stomach have been affected.
Palpitations, pain and discomfort! This sounds like it might be dumping syndrome. No wonder you don't feel like eating and having to put up with the consequences!
I would feel inclined to think about a food diary to try to work out what foods are better or worse than others. Ready meals might contain something that has a disproportionate effect on you perhaps? Think about low glycemic index foods. And ask your medical team, preferably a specialist dietician, about taking something like liquid immodium to slow things down a bit perhaps? It might just be that your system is creating sugar spikes. All this is entirely speculative on my part. I have no idea about what extra complications the heart attack will have caused, but I do not think that you are outside the normal range of how people would feel at your stage. Things tend to get better, but very slowly, and it does mean adjustment to a different pace from your life before all this lot hit you.
I had my oesophagectomy in July 2007 and it took me two yrs before i could say that i was near enough back to normal!!. however i still suffer occasionaly from late dumping but i get about 5/10 minutes notice when i feel i'm not right, i then normally sit down and i've found that a small bottle of apple lucosade certainly helps me get over it. takes about 15minutes in all. on the subject of fatigue yes after 5yrs i still find it difficult to accept that my body say's stop rest(snooze) and then start again.My Dr. has put me on a course of iron tabs due to my last blood test saying i was anemic. However frustrating it is we are all still here and going strong. all the very best.
Verry frustrating, the mind is willing the the body is not, you are still early days for an op like this one, but as others have well demonstraded there is life out there for the taking. Stretch yourself by all means but above all listen to what your body is telling you and you won't go too far wrong. Time is your best friend and I know you are feeling things will not get better, but take heart from those who have gone before you.
Ime due to get this op end of month due to Achalsia. Ime now starting to feel very anxious as this is a major op. I know we r all different but how long do you think recovery is if all goes well. x
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