Acceptance

[Tedsdad]

I know this written from the point of view of someone who has been through the experience and survived it as unscathed as I could realistically hope and so have a great deal of sympathy for those going through the very early stages but I do wonder if my recovery may have been helped by a strange set of circumstances which surrounded my hospital admission.

I was meant to go in to hospital at the end of September 2020 for an aorta and aortic valve replacement made neccesary by an ever expanding aortic aneurysm. I was admitted the night before the operation but on the next morning when they came to me and I was expecting a pre med I was sent home. The team due to operate on me had had an emergency the night before and my operation was to major for them to start unrested.

I was told they would give me a call when they could fit me in . I could understand this completely and as the real danger of aneurysms is that they are symptomless it made little difference to me. About six weeks later I got a call to tell me to go back in a week.

Funnily enough I remember absolutely nothing about the time between the initial appointment and the actual operation. I even needed to be reminded that there had been an abortive attempt.

Once I had been admitted towards the end of October.

I have no real memories until the surgeon was standing at the end of my bed ten weeks later telling me that I had even very ill and that the operation had led to a blood clot in my heart which had led to me dying on the operating table and that he was not going to tell me any more at the time as this was enough to take in but not to worry as I was going to be all right now and that over the course of time I would and could discover more about what happened to me. Actually when I was told that I had died and been brought back my first reaction was that ,well that is nothing to worry about, and the second that me coming back had really saved everyone a great deal of inconvenience.

I say no real memories, I certainly have ICU memories. And they are not all bad by any means. At one stage it appears that I was able to speak to my wife on the phone. This was between the operation and the blood clot and tell her that I was going to need another operation. But this was before the hospital had realised this, and I have quite forgotten the whole incident.

Before the need for a tracheostomy arose I did speak to my wife on the phone at which time I was totally convinced that I was in the West Indies the first time and in New Zealand the second time.Now obviously I was wrong and hearing such nonsense from her husband was very upsetting for my wife because she had been warned that I may only survive in a vegetative state. But I would ask those on the receiving end of any report from someone in hospital under these circumstances to be very dubious about anything that is said to them about anything ,particularly medical treatment. The patient may well not understand what is going on the relatives probably won’t either and the chances of just getting in the way of someone who is doing their best in an impossible job are very high.

All of this happened right in the middle of the first lockdown. The hospital is 50 miles away from where I live. But this meant that apart from one time where my wife was called at 4 in the morning to come in quickly to say good bye that I had no visitors or any communication with anyone during my stay. Everyone in my family knew that I couldn’t speak well enough to use a phone anyway. So from my point of view the advice of surrounding someone with familiarity as good as it is for those who feel that they may be able to contribute to recovery does not really hold a lot of water. I wouldn’t have been aware of it anyway. As it turned out the hospital decided to send me home sooner than they would have like to ideally because they could see Inwould be well and sensibly looked after and that Covid was an ever present threat.

As regards what else happened to me, collapsed lung ,kidney failure leading to dialysis, something I cannot remember what is called that needed to be extracted from between my lungs and looked like cottage cheese the inception for which led to cellulitis, bedsore on foot tracheostomy, obviously pain Post sternoctomy, I am sure there was more but my memory has suffered a little as well. But I reached the conclusion that I simply was not interested in reading a list of drugs and procedures, other than on here I try not to talk about it too much. It was as my surgeon said to me,I have a very long road to recovery, you can’t know how far it will go but never think about how far you have still to go just think what you can do now that you couldn’t do a week or a month ago. I remember when a nurse found me sobbing behind a drawn curtain after not being able to stand.It’s all right to be upset, but once you have finished being upset you will have to get on with it!

So I understand why advice is given about reading ICU diaries and about visiting and even revisiting an ICU but, and I am so aware that this is not replicable if you haven’t experienced it, what really helped me through the whole experience was my boys grammar school education in the sixties, where teachers were still those who had been military pilots or ex Japanese POWs and we’re employed by the nation out if gratitude rather than their skill as teachers.Fortunately the skills of putting up with things are no longer engendered in our education system but I realised that the realisation that my recovery was really down to me doing as I was told was something instilled in me years ago.

But even after saying all of this my thoughts remain so much with the people enduring particularly the early days of this experience. I really think it is one of the very worst experiences that life in our contry has to offer.

[FamilyHistorian]

it’s quite interesting your take on what happened to you. My circumstances sound quite similar, I’m slightly older than you - 75 in March and at this time 3 years ago I was coming out of my coma going home in March and into lock down. My visit to icu was relatively unplanned but followed a second admission. My family visited every day but I didn’t know either because of lost memory or being in the coma. In fact I have no memory for 3 months before going in to the coma. In my alternative reality, which is still very clear, I travelled the world though different centuries and some times as a mercenary. I was in several “hospitals” one of which was the Galey motor museum.

However my experience has not been “a stiff upper lip” but very emotional and through CBT has explained many events throughout my life and the standards I live by.

That 3 months of memory has gone and because of the memories developed through my alternative reality I do have difficulty working what memories are real and what are not.

[Hidden]

I guess we are all different in our approach to recovery. For me piecing together what actually happened during my two spells in ICU was important, rather than just the acceptance of well I'm lucky to be around. Also getting my notes and reading my ICU diary really made me appreciate the care I received over a 6 to 7 month period.

If I had not got all this info the only memories I would have are my trips to Scotland, France, the West Indes, Cyprus and Australia........and the nightmares that took place there in my head.

[Lux95]

You make a good point about being prepared to endure hardship, and how that has been lost in many school systems - it certainly has in the US. Most kids and younger adults today in the US seem incapable of living without their cappuccinos and iPhones for more than 3 seconds. I wouldn't wish our experience on anyone else, but at least we have been reminded what matters most in life.

For sure everyone has a different approach to dealing with trauma, grief, and loss. It is true that at some point we have to move on, but how we do that seems to vary a bit. In my case, I assumed once I could walk and see straight, I was ready to get back to work. I was very wrong.

About a year later, I lost my job and everything fell apart. I realized I had been suppressing a good bit of fear and anxiety, trying to appear confident and determined. Not all of the job loss was my fault (perhaps none of it), but the situation was a bit of a perfect storm that I definitely wasn't prepared to handle.

Normally I would have been devastated about the job loss, but instead I was relieved. Then I realized just how much ICU-related stress I had bottled up. Recalling events has helped me quite a bit. I needed to separate what I dreamed/hallucinated from reality because some of the former seems much more realistic than the actual events. I too consider myself very blessed to have come away with minimal physical and psychological impact, but the reminders are still there. It will be a long time, if I ever go to another mall or large crowded event for fear of contracting another cold or flu and end up in the emergency room gasping for breath. It isn't easy to get over the fear that your next stuffy nose will be your last, especially with a history of sinus problems and severe bronchitis.

[Sepsur]

Resilience is never a bad commodity to have in store. Being able to live with hardship without it crushing your spirit is important “fight the good fight”. After ICU you’ll need bucket loads to get through.

What I don’t think is a requirement within that is that we should just put up with what we are left with and be grateful.

It is important that the medical teams intervene to keep us alive but if we are left in such a dreadful state that life seems untenable, then surely we all need to think again.

Anecdotally, some Scandinavian countries use far less sedative and keep people comatose for shorter periods- there is less delirium, less Pics etc etc. I’m grateful and glad to be alive but if our whole experience can be improved….that’s got to be good news.

pubmed.ncbi.nlm.nih.gov/233...

[Mloc in reply to Sepsur]

Very moving, heartwarming and inspirational Tedsdad. I admire you for it.