topic Re: Long term treatment for a rare disease in Depression

Withdrawal after a serious hospitalization

LC80 — Thu, 08 Jan 2026 22:44:24 GMT

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 Since returning home full time I have become more withdrawn, to the point that I avoid going out if possible.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.

Re: Withdrawal after a serious hospitalization

Croix — Fri, 09 Jan 2026 11:08:29 GMT

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

Re: Withdrawal after a serious hospitalization

LC80 — Mon, 12 Jan 2026 01:38:43 GMT

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

Long term treatment for a rare disease

LC80 — Sun, 20 Sep 2026 00:45:32 GMT

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.

Re: Long term treatment for a rare disease

Pete66 — Sun, 20 Sep 2026 11:58:52 GMT

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

Re: Long term treatment for a rare disease

LC80 — Sun, 20 Sep 2026 12:38:41 GMT

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.

Re: Long term treatment for a rare disease

Pete66 — Mon, 21 Sep 2026 00:04:34 GMT

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

Re: Long term treatment for a rare disease

LC80 — Mon, 21 Sep 2026 03:36:08 GMT

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.

Re: Long term treatment for a rare disease

LC80 — Tue, 22 Sep 2026 07:50:24 GMT

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.

Re: Long term treatment for a rare disease

Pete66 — Tue, 22 Sep 2026 11:11:45 GMT

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

Re: Long term treatment for a rare disease

LC80 — Fri, 25 Sep 2026 23:06:37 GMT

I have been reliving what happened to me a year ago, and the past 14 months of treatment, in my mind recently. I am at a loss to come to terms with my "new" life, and the loss of the future my wife and I had planned. It all seems just too hard at the moment, and I am glad to be receiving some counselling. Planning for a different kind of life just reinforces what I have lost, and it depressing.

Re: Long term treatment for a rare disease

Pete66 — Sat, 26 Sep 2026 02:18:38 GMT

Reliving your past, dont do that.
I have been doing that lately, never works
I cope by focusing on what I can do, I go online, talk about my hobbies, the things that interest me.
What i have found it that my depression ebbs with the weather. I have issue walking, so leaving the house in wet weather just does not happen, so the depression kicks in over winter. Also any cuts or scrapes heal slowly, annoying.
But once the good weather turns up, I can get outside, do some gardening. A month ago I felt so good that I actually washed the walls in some rooms

Re: Long term treatment for a rare disease

Croix — Sat, 26 Sep 2026 14:29:25 GMT

Dear LC80~

After such a protracted and serious condition, with much time away from the world in hospital you are bound to feel overwhelmed about making new plans, even with your wife's help. I know I felt that way after I was invalided out of my career with PTSD and all the usual problems

There was no way I could plan, the expereince, which I was still undergoing, was too huge and there seemed no path to anything. The only suggestion I can give from my own experence is not to try to plan too much, take each thing as it comes, bit by bit and importantly reserve a time each day for something you enjoy. Preferably in the evening so you can look forwards to it.

It does not have to be anything particularly big, an episode of a tv show, a chapter in a book, talking with someone about the inconsequential, enjoying a comedian on YouTube ...

It can be hard to think of such things, maybe you wife can help you remember and make suggestions. The important thing it is daily and regular, so you get used to it. It not only gave me a wider view of the world but let me have some sort of control of at least part of my life.

I can sympathise with others not understanding the mental effects, just the physical. It does not mean they do not care, just their own experiences can be limited. My wife had no idea what was happening in my head, and had a very hard time as not only was I difficult to live with but also inconsistent. Even so her constant care was a comfort and a greater help than I realised at the time.

I'm glad your visit to ED on Tuesday went well, even if the nebulizer treatment is very difficult to endure. The results of the CT scan must have been some comfort to your fears.

Croix

Re: Long term treatment for a rare disease

LC80 — Sat, 26 Sep 2026 23:08:52 GMT

Croix,

I honestly feel as though any plans I had for the future are now beyond reach. The treatment has done me in and I truly don't believe I will ever be well again. There is no real joy left in life. At least that is what it feels like. We purchased a new caravan earlier this year when I was feeling well, but that will be sold now without ever using it. Such is my lack of desire to travel again, through fear of what might happen if we are away on a trip.

I am slowly becoming someone who doesn't like to leave the house because of my compromised health. I am live in constant in fear and I'm nervous about anything and everything. I am scheduled to stop treatment in late November after another procedure and the availability of good test results. But what then? In early 2025 life was good, and now I am barely coping day to day. What a mess it has become.

James

Re: Long term treatment for a rare disease

Pete66 — Sun, 27 Sep 2026 02:41:06 GMT

I know you have said it is a rare condition. But I know for myself it was helpful to find people who had gone through similar situation. Talking to real people, rather than medical staff or psychologists, was helpful for me.
You are still in treatment, and it is hard to see that there maybe (I am not a medical expert) a way through this

Re: Long term treatment for a rare disease

Croix — Sun, 27 Sep 2026 11:50:17 GMT

Dear James~

As Pete66 says you are still under treatment, the whole matter has not come to a hopefully successful conclusion as yet. Under the circumstances it is perfectly understandable to be very worried about a relapse and wanting to be near the right sort of medical help. Even so I'm not sure your home is the only place you can be, and still be in reach of ED.Being at home all the time does tend to concentrate one's thoughts with little fresh input.

I do know my attitude changed after I was given the correct treatment and I became less apprehensive of my behaviors and being triggered. While my circumstances were not like yours I'm trying to say that one's attitude can change after things go from being up in the air and a change to a more stable set of circumstances.

In the meantime it is overwhelming and trying ot see any way through to a better time can seem completely hopeless, which is why I suggest having a regular evening time to do something you have liked or at least been occupied by in the past. It takes experimentation but can lead to realizing there might be more to life that you currently imagine.

It can help with your daily struggle.

Croix

Re: Long term treatment for a rare disease

LC80 — Mon, 28 Sep 2026 22:37:12 GMT

I have had a lengthy conversation with my Sydney based infectious disease doctor about what I am experiencing physically and mentally. He guides patients through some grueling medical treatments, and he is well aware that I am at an end with nothing left to give. He suggested that I am showing all the signs of PTSD and will need to be treated. He is referring me to the psychology team at the same hospital to get me help. I am extremely frightened about my life and my future and feel like I have no control anymore. I live in a small rural NSW town without any real friends locally. I just have my wife to fall back on and I do not want to burden her with my mental health issues, or I try not too. Life is just a mess.

Re: Long term treatment for a rare disease

LC80 — Tue, 29 Sep 2026 23:30:57 GMT

I can sum up my thoughts about daily life this way. We rent, I have a chronic rare illness that requires a grueling treatment regime and I am a burden on my wife.

Re: Long term treatment for a rare disease

Pete66 — Wed, 30 Sep 2026 11:02:03 GMT

i understand your feelings, but you can still contribute something to the universe.
I cannot walk, but my fingers work great, I can assist people who enjoy the same hobby as I do. I can read stories to my grandkids

Re: Long term treatment for a rare disease

Croix — Wed, 30 Sep 2026 12:14:50 GMT

Dear LC80~

Pete66 is right in what he says, and you are going though the most difficult phase of your life you will ever have to face, it will get better, mine did.

My own wife has to compensate for my physical disabilities (spine plus more), doing all the heavy work and a lot of the lighter stuff around the house too. I did not mention my physical condition before, just my mental one, but as I'm similarly situated to Pete66 thought it was worth talking about relying on others.

My partner wants to help and does not see it as a burden as I try to make up for it in other was, being cheerful and being fun to be with, getting outside help when things are piling up, and generally making her glad to be a very essential part of the home - plus I have my own interests in much the same way as your pubic radio (which may well become more of you life in the future).

This did not all come at once, but has built up over time and works. At the moment it would be very difficult for you to do this, however it will come in time if you want it to, and makes both you and everyone else in contact with you feel better

I know I'm talking about things that may not seem to help at the moment, I felt that way too.

Croix