|I found I was always in fear of choking and so found sleep very hard and uncomfortable.
|Main problems were with the physical issues, specifically uncomfortable, but I knew it was necessary. Removal of the tracheostomy tube was easy and a relief.
|Frightening, terrifying, very stressful, caused quite a lot of pain, tried to remove it but had to leave it, was on oxygen overnight, not being able to breathe, sucking out debris bothered me, still very sore, wanted to ask but was frightened.
|I know what I was getting myself into but when I woke it was like leading into a black tunnel and then horrific pain to which very much to my surprise someone was there to relieve it. I thought that hygiene was first and foremost and also I was still in agony when awake.
|I had major surgery twice. This has left me with facial and neck scars plus a large and very deep tracheostomy scar. As a young person this has been and still is very hard to live with, People look and make comments. Once I woke with the tracheostomy tube I was worried it would block. It is only now that the scars are so awful and what the public do and say that bother me.
|Waking up with one fitted was a terrifying experience, the noise, and the feeling of not being able to get my breath is something I still don’t like thinking about. Whilst I was told before the operation I would have one fitted, I was not prepared for the reality of it. Did not understand what was happening. I didn’t cope well with it at all whilst I was on the ward.
|I was aware I was going to regain consciousness with a tracheostomy but was not greatly worried about it. My major concern was the surgery on my tongue which was the focus of cure. The reality was that the tracheostomy was the worst thing of all of the invasive procedures carried out on me. On waking there was mild coughing and eventually this stopped and I learnt to breathe from the top of my lungs by inter-costal movements rather than diaphragmatic breathing. I was consciously aware of dirty, cold dry air entering my lungs. Healing was very slow taking six weeks to heal with dressing changes during the day which I was able to do, this impaired my speech as I had to learn to structure sentences, change breathing patterns and spoke much like a darlek. As the tracheostomy closed I then had to relearn sentence structure, word flow and emphasis and still tripped myself up with speech.
|Immediately coming around from operation quite relaxed due to drugs. Later on the mucus building up on the chest, couldn’t breathe, felt like drowning, induced panic. Lying down immobilised does not help this, very drowsy initially now social problems. On the ward there was a sense of drowning and panicking, feeling continued throughout time of having the tracheostomy in. The most distressing part of the whole operation was the tracheostomy, horrible sensation that seemed to add to the trauma of the whole experience. I had my tube in for four to five days.
|I had prepared myself with pen and paper to communicate. I was OK with it emotionally but my friends were very shocked and upset as they were not prepared for the visual reality by the ward staff. I was frustrated not being able to speak until the tube was changed to a variety where speech was possible. I was nervous about catching it on something and the thing coming out with my movements so they were very tentative. Information about how it might feel immediately post op and a more accurate expectation about the length of time would have helped. Perhaps viewing some photographs pre-op and explaining about the different types of tubes and how they affect speech would help.
|Waking with the tracheostomy I was surprised and it hit me emotionally as I don’t think I was told previously. I couldn’t speak, I found it difficult attracting attention. Much later shown how to use it, felt easier and more in control. After struggling for some time with communication with a pen and pad, told to stop the opening to be able to speak. My five year old daughter didn’t recognise me until I was able to speak. Removing the tracheostomy was a very happy day. The most difficult was the feeling of choking, the inability to get urgent attention to suck clean the tube, otherwise the communications issues were secondary.
|Horrendous. I used to be a nurse with children and you don’t realise what it is like. I would sooner be dead than go through it again. It is a horrible, fearful, horrendous feeling especially when coughing and sucking down the tracheostomy. It was difficult to get a comfortable position getting the oxygen, alright when removed, over quite quickly. You don’t know what it is like unless you have had it done. The feeling of sucking out was awful.
|It felt funny and strange, so so scary. I knew it was going to be there, if I hadn’t known it may have been very different and even more frightening. Because I knew it was going to be there it was not so frightening. It was impossible to speak and had to write everything down. I felt very lonely, felt left out because I could not form a conversation. When you are a patient you chat to one another. Once removed I didn’t stop talking. It has healed healthily and feels alright.
|The enormous vulnerability especially when the nursing staff were making decisions for me and I couldn’t control them, eg asking questions I couldn’t answer, choice, not understanding. I need to communicate by writing at least. Powerless not able to negotiate. Inability to be understood.
|Not being able to communicate. Impacted on me socially, can’t interact the same, tracheostomy in four days, beforehand you didn’t realise how emotional it was. The big thing was when I woke up. They tell you about it but not how bad it is. They say that you get used to it but I don’t think you do. The thought of having another one I would sooner go. I wouldn’t do it again, not sure what the alternative would be apart from death.
|My only response “horrible”.
|1 st time scared when suctioning (fear of unknown) next couple got easier.
|Blocked once but was attended to very quickly. It was a very unpleasant feeling.
|Can’t remember how many days trachy was in, I am guessing 3 weeks. Apparently I ripped mine out after operation. I don’t really think it was that bad after I was in main ward. Changing it was horrific. I was petrified, felt I could not breathe. Taking it out was easier than I expected and was quick.
|Despite the discomfort mainly due to very tight stitches, I realised the procedure was inherent in my recovery so tried to work with it. Once tapes had replaced the sutures it was completely comfortable apart from when I had to use the suction pipe. Healing was prompt apart from site of stitches which cause sores on the thin skinned area on my collar bone, and these were worsened during radiotherapy. Overall I think that had the trachy not been so tightly secured the whole episode would have been made more comfortable.
|I did not actually have to manage the trachy myself apart from not getting it wet. I had worries about my own suctioning while in hospital. I would have felt better as the worse feeling was choking and panic! Felt awful if had to call for nurses to do the suction more than once a night.
|Healing took much longer than I anticipated. Good care was given by the community nurse in dressings.
|I believe I pulled the tracheostomy out and didn’t need it again!
|I found the frame very tight and the removal of the frame was very painful and would benefit from some kind of pain relief.
|I had a horrific experience one night, when my trachy got blocked up and I could not breath, I had to throw a bottle at the door to get attention from someone to help me!
|I have had the trachy twice now on 2 major operations. I have to say it was the worst part and it frightened the life out of me. Suction blocking is the worst part. Also the built in heater was so uncomfortable. I think this survey is such a good idea. Thank you for doing this.
|I only had a trachy in place for a few hours as I vomited and it dislodged and had it removed whilst in ITU.
|I was not aware of some of the side effects which resulted from having a tracheostomy, therefore I did not cope too well. Suctioning and lack of speech were not explained to me. However I coped and soon learned the hard way, by experiencing these problems.
|It has been 22 months since this procedure but can honestly say I had no fear or side or ill effects.
|It is a necessary evil, you have to endure to get to a better place but boy it feels so good when it is taken out, the feeling of complete euphoria.
|Less than was expected. People that have had a trachy previously say to me that I can’t believe I have had one – hardly any scar mark.
|I did not enjoy the experience.
|Nursing staff need to be more aware of the psychological impact that inability to communicate can have on a patient.
|On leaving hospital nurses had difficulty dressing the wound mainly due to not having correct dressing or expertise.
|It was very noisy which made sleep difficult. I was very apprehensive when time came to remove trachy. There was social isolation because of unable to speak. The discomfort was due to lot of mucus production, the yanker sucker was my best friend. The trachy is not a pleasant experience and knowledge of how it will be will not make it any easier for me – my apprehension will still run riot.
|The first time I had the trachy removed it was stuck and the doctor who removed it was very forceful removing it – maybe could have used a lubricant to make it easier to remove. It was a very frightening experience.
|There were 2 things that I found particularly distressing – not being able to communicate with healthcare professionals particularly in the first days after the operation. I felt incredibly vulnerable and frightened. I could not communicate my concerns. Secondly the tube getting blocked with secretions. It was a miserable experience especially at night time. When I tried to alert night staff on three occasions I was told that there was nothing wrong with me, when I believed I was choking to death. They would not allow me to write my concerns so that I could write my concerns. I eventually asked a nurse to show me how to use the suction pipe so I could relieve the problem myself. I had nightmares for months afterwards.
|There were times when I needed suction, then it was difficult and frightening and I felt I could not breathe.
|They took tracheostomy out after 5 days but oxygen levels were down and they tried to put it back in twice but could not. Not very pleasant. I was on oxygen for a day and left 2 days later. All goes well.
|Trachy scar could have been neater.
|Was glad to have it removed to speak.
|When the device was removed, the scar did not heal well, I had to have the wound cauterised.
- 比预期的要少。以前接受过气管切开手术的人对我说，他们简直不敢相信我曾经有过气管切开 – 几乎没有疤痕。
- 这是非常嘈杂的，使得睡眠困难。当到了移除气管切开管的时候，我非常紧张。由于无法说话，导致社交上的孤立感。不适感是由于大量痰液产生，吸痰器成为了我最好的朋友。气管切开并不是一种愉快的经历，对于它的了解并不会让它对我来说更加容易 – 我的紧张情绪仍然会失控。
- 第一次去掉气管切开管时卡住了，取出它的医生非常用力 – 或许可以使用润滑剂使其更容易拿掉。这是一次非常可怕的经历
- 有两件事情特别令我痛苦 – 在手术后的前几天无法与医护人员交流。我感到非常脆弱和恐惧。我无法表达自己的担忧。其次，管子被分泌物堵塞。尤其是在晚上，这是一种痛苦的经历。当我试图在三个场合向夜班人员求助时，他们告诉我一切都正常，而我却认为自己快要窒息死亡。他们不允许我写下我的担忧。最终，我请求一位护士教我如何使用吸痰管，以便自己解决问题。之后的几个月，我做了噩梦。
- Rogers SN, Russell L, Lowe D. Patients’ experience of temporary tracheostomy after microvascular reconstruction for cancer of the head and neck. Br J Oral Maxillofac Surg. 2017 Jan;55(1):10-16. doi: 10.1016/j.bjoms.2016 8 06. Epub 2016 Sep 3. PMID: 27596013.