Withdrawal after a serious hospitalization

LC80 · ‎09-01-2026

Midway through 2025 I was flown to Sydney to ne admitted to hospital with a rare and deadly serious bacterial infection of my windpipe. The short story is during early treatment I went into respiratory arrest, and near death transferred to ICU after intubation. I was sedated for a week and the tube was removed. Due to the rarity of my condition I was kept in isolation in the main during my three and a half month stay. My ongoing treatment as an outpatient will last a total of 12 months of antibiotic treatment, not including the IV treatment I was given in hospital. I have to return to Sydney from my county town every three months for follow up blood tests and a clinic visit for more medication. Since returning home full time I have become more withdrawn, to the point that I avoid going out if possible. Where I was very involved in community radio all I do now is one two hour shift on air a week. I wouldn't call myself depressed, although I have suffered bouts in the past. Life is different because of the after effects of the infection and the damage caused to my trachea after the stent that kept it open was removed. The possibility of tracheal collapse plays on my mind sometimes, if I am having a low energy day. That is a regular occurrence and an ongoing after effect. My friends and wife, although they mean well, don't understand what I went through mentally. They saw the physical side of my hospital stay and it was very difficult for them, particularly my stay in ICU. "That's in the past now" is what I have been told, however mentally it's not.

Croix · ‎09-01-2026

Dear LC80~

Welcome back to the Forum.

I guess I ought to talk about the physical first. I am NOT a doctor so please treat my words with care. Tracheal collapse after your experiences is naturally something you may worry about. I can only say what I'd think of doing.

See if there is any medically supervised therapy to straighten that part of the body

I'd talk to the emergency section of the hospital or ambulance area and find the exact procedure to do in such an emergency , have any requisites always to hand together with a phone that has an emergency locator.(my older iPhone has one). then practice under supervision what to do what to do until qualified help arrives.

Please do not regard the above as competent medical advice -see your medical team and get their thoughts.

If the problem is not an emergency still seek medical aid and rely upon the diagnosis and treatment in the hospital

OK, whats is my very poor attempt to get you to seek the appropriate medical advice.

Now being in hospital for an extended time -articulately with periods of isolation is a bit like being in jail -no matter how nice the staff. You are isolated, you have no real say in what happens, and have to obey directions and routines you may not be comfortable with. All this together with the worry about your condition improving and the discomfort of the treatment.

Isolation due ot being infectious is a particularity way to be, it leads one to think one is not acceptable to society. Your brain knows this is not the case, your emotions may not.

As you have to go back to hospital periodically the whole thing is not really over yet

Anyone will be affected by this, and trying to get used ot the outside word and all the peple in it does not happen straight away, it may well be a series of steps over a long period.

You sound as if you are adapting excellently, you do go out and even conduct a radio show which involves speech. This is a cause for congratulation.

Those low energy days are, as you kn natural consequence and I'm sure you can make provisions and deal with them when they happens

I'm afraid your wife and the others you are with simply have to be given instruction that the matter is not over -for you or for them. Worrying if you are going to make it, and not being allowed near you will have taken a big toll. They may not realise this.

May I suggest you both need counceling, to put the mater into perspective and have a realistic idea of the toll taken. Understand what each has gone through.

I hope you are soon doing longer shifts and enjoying it. Please know you are always welcome here.

Croix

LC80 · ‎12-01-2026

Croix, I do have my emergency contacts and the SOS button setup on my mobile, and our small town ED is just a short drive away. A few minutes. I have spoken with my wife and have now made an appointment to seek counselling. One of my wifes acquaintances suggested I may be experiencing a form of PTSD. I'm happy to stay home and just go out if needed, as I have things to keep me occupied and my brain exercising. But I do stay in contact with my friends who live some distance away in Sydney. Last year was a really, really hard year for both me and my wife. It started off with the death of my adult stepdaughter, whom I let down badly. I copped a fair bit of blame from my wifes family and then a few months later I was in hospital seriously ill. We both were happy to sign off on 2025. I have quite some months still to go on treatment with the associated mental challenges but I always appreciate the words of wisdom in this forum, when I have no one to talk too.

James

LC80

After spending three months in hospital last year and nearly dying, I have been on treatment for a rare illness for fourteen months now with at least two months to go. The daily medication regime is grueling and it has taken a physical and mental toll. I have been receiving counselling for the past five months but there are days when I wished I could just go to sleep and not wake up. Such is my fear of the future after my treatment stops. While on the face of it I have much to look forward to, my health might be so poor that I can do none of it. As I post this my fatigue is so bad today that I barely have the energy to do the simplest of things. Because of the side effects of the multi drug medications, breathing easily is an issue on half the days. I try to make up for what I can't do on the good days, but it a cycle I can't escape from. Sorry for the unloading of emotions, but I have to let them out for my sanity.

Pete66

9 years ago I had a rare condition, I actually like that it was rare, deadly, and had a cool name.
Necrotizing Fasciitis (told you a cool name), rare (about 400 per year in Australia), and kills 25% of people who contract it.
Has it f'ed up my life ? Yep. But there is nothing I can do about it

My only suggestion is to go online, find other people who have your condition, and see how they are coping

LC80

I can top 400 a year. I'm not exaggerating when I say I am the only known case in Australia. That's not to say that there haven't been other undiagnosed cases where people have died. ST Vincents Hospital infectious diseases doctors are writing my case study and a number of experts in the field in Australia have input into my treatment. Mycobacterium absessus infection that attached my trachea. In every other pulmonary case it has infected the lungs. So I am slightly paranoid about the outcome and it's difficult to speak with other people who have my exact condition, however I am in contact with other people who have had respiratory infections.

Pete66

Sorry, when I read your post I did not see the postings from months ago.
"It's all in the past" is a horrible thing to say to someone.
I can only talk about my own experiences, and I would not wish them on anyone. People downplaying what I have gone though have zero understanding. While Doctors say they will answer any questions, I did not even know what questions to ask, and when I did ask questions, I was given generalizations. "how long will I be in hospital?", I wanted hours, days, weeks, months (the right answer) , but what I was given was "some time"
Also being far from home makes it hard, hospitals are big places. I went from country Victoria (where everyone looks like me) to suburban Melbourne (with all the accents), it is like I had been removed from the planet

LC80

Sounds very much like my experience. I was put on a medivac jet from Wagga to a hospital in Sydney. I live about two hours away from Wagga in a small town. I grew up in Sydney but it's an alien place for me now. I needed support from the hospital mental health team on a regular basis just to survive the experience, but as time went by it became a game of not giving in to the voices of despair. My medical support team just give me the facts and sometimes we need more than that. Thanks for sharing your experience with me, because it helps.

LC80

Well, that went well. After a serious bout of difficult breathing this morning I had a panic attack and I was hyperventilating. So, I needed to go the our local ED. I am nearly paranoid my trachea will collapse again, but a CT showed it was stable. The nebulised medication is nearly impossible to tolerate now, but I am only two months short of completing the course. It's a depressing life at the moment, and I am grateful just to be alive.

Pete66

As you say, it is two months, you can do this