Had a pretty tricky last few months, was diagnosed with endocarditis at the start of November (had been feeling ill for a few weeks before), the infection responded well to IV antibiotics over a 6 week period so that was a positive.
However due to several other developments I also needed OHS towards end of December for a valve repair & to deal with an issue with my aortic root. Ended up spending just over 2 months in hospital overall.
Coming up to 6 weeks post surgery, I feel like I’m doing ok physically but just wanted a bit of a sanity check to see if I’m progressing well.
I’m driving, can walk maybe 3500 steps a day, doing some laptop work & light housework. I get tired each day but can’t sleep easily at all. In fact I’m writing this at 330am unable to sleep due to all the things going on in my head.
I have a million thoughts going around in my head whenever I try to sleep. Financial stuff, work stuff, excitement but impatience about getting back to a normal life, how my family felt while I was in hospital, just wanting to get my old life back really. I also have PTSD (GP has already said I have this) from what I’ve seen (and now can’t unsee) at hospital & definitely feel some survivor guilt as well.
Being able to switch off is just so difficult! I’ve tried zopiclone (prescription sleeping tablets) but it hasn’t worked for me very effectively at all.
Did anyone else have the same issues at this stage? And any general progress advice would be much appreciated.
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DanW79
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I hope I can provide you with some of the sanity you seek.
My back story began at the age of 55 in 2017:
6 months before a diagnosis of Bacterial Endocarditis, by which time I only had about 2 weeks left to live according to the Cardiologist.
4 months in hospital when finally I was well enough to undergo Aortic Valve Replacement.
6 months recouperation before being diagnosed once again with Endocarditis, this time Fungal, There are only about 5 cases per year of FE in the UK.
3 months in hospital for further treatment.
1 year later I had a mild heart attack due to some of the infection breaking off and blocking an artery at the back of the heart.
3 years after this I finally had a procedure to correct a leak around my replacement valve.
Since then I have been able to exercise and hope to get back running again, (previously 5k twice a week and 5 a side football once a week).
Apart from a few other minor things along the way that sort of sums it up.
Regarding how you are doing, are you waiting for rehab? I found this extremely helpful and would recommend it.
Sleeping can be difficult, I have always slept, even as a youngster, with a radio on and an earphone so that I don't disturb my wife. I find listening to a comedy station on the internet distracts any overthinking in the quiet of the night, Pumkin FM is the one I use but there are a couple available.
After about 10 months in total spent in hospital I have seen lots of things, a lot of them unpleasant but I wouldn't say I had PTSD as a result but that is just me and my outlook, life just is unpleasant sometimes.
I don't have survivor guilt either, I thank the hospital staff for their dedication and skill in keeping me alive and the NHS for spending over £350,000 which has allowed them to treat me. Without them I wouldn't be here.
So far I am over 6 years into my recovery but having to retire through ill health I have had to learn to be patient.
One last thing, How did you get infected in the first place?
Thanks so much for your reply, and I’m really pleased that things are improving for you now in terms of exercise.
In terms of picking up the infection, no one really knows how I got it. They suspected via the dentist initially although I was checked over by a specialist who said that there was no evidence of this being the case. I have a bicuspid valve and was on immunosuppressants too so I guess there were a few ways it could have developed.
I didn’t mention in my original post that the same thing also happened to me about a bit of the infection breaking off and causing a heart attack too. I’ll never forget that day.
I was offered rehab but was told there would be a fairly lengthy waiting list. And as I’m planning to get back to travelling a lot with my work (a necessity) and that it is tough for me to plan a schedule much in advance, I told them I wasn’t hugely worried about rehab currently.
Take a look at the link above, it provides information that will help you get antibiotics when you visit the dentist in future.
Were they aware of your condition?
If you were a moderate risk previously, though the immunosuppresant medication might have put you in the high risk bracket, you are now certainly at high risk and need them for any work that goes below the gum line including a scrape and polish.
If they won't give them to you, find another dentist who will!
Good point about dental work. Covered on pages 63 and in the resources links on p91 in the AD Patient Guide, which includes patients with artificial heart valves. aorticdissectionawareness.o... The Scottish guidance there postdates the Nature article, and is accepted by NICE
At 6 weeks out after 2 months in hospital, I'd say you were doing pretty well! Eespecially on top of endocarditis.
I had my aortic dissection at Xmas 2017 and needed a new valve, ascending aorta and arch, and was in ICU for 6 weeks, followed by 2 weeks on a ward before discharge. The ICU stay was horrible, with hallucinations, delirium, intubation, a cardiac arrest and more, which like you left me with PTSD. Bearing in mind that both the event I had and the surgery were mammoth, it took me much longer to be doing the equivalent of 3500 steps. I eventually got a course of CBT for the psychological difficulties. One thing which did really help was the Cardiac Rehab class, to be with others also looking to overcome their challenges, the care and understanding of the nurses there, and the monitored route to improving fitness - although it took me 5 months to do the 8 week course! I also have sleepless nights, again Zopi is of limited use, though at least I was & am retired so don't have the stress of needing to get back to work.
You should qualify for Cardiac Rehab as you've had a new valve. See if you can get referred. Also if you can get referred for the PTSD too, as that can also help with sleep. In the meantime, have a look at the Australian web site cci.health.wa.gov.au/Resour... as their self-help resources are based on CBT.
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A new path - 6 weeks after Aortic Valve and Root Op
Oh ok, I admit it - not doing all that well the now
what am I supposed to do now
problems with foot after surgery.
