Hello,
I am Mrs mauser here. We both reading the posts since my husband got diagnosed oesophageal cancer October 17 and very valuable tips here and thanks everyone for the kind words and supports.
My husband had his Ivor Lewis operation done on the 6th of February. we were disappointed initially on the fact that he had to have this major operation for a tiny tumour. But realised that we left with no choice. I should admit here that we grabbed plenty information from this forum and many informations and discussion here enabled us to mentally accept the life time change post surgery. we are also grateful to the supreme power that they could identify his tumour in the early stage. So the surgeon have told us that this surgery is doing as a curative surgery as its T1. My husband had no other health history and a non smoker and tee tootler. so we including the doctors expected no major complications to happen. He did well for the first two days after surgery. They kept him on ICU for the first 48 hours on 3 litres of oxygen. I even took our primary aged children to show him the next day after surgery. I went to hospital on the 8th morning to take him to high dependency unit as that is the original plan. One of the doctor took me into a private room and told " your husband took an unexpected turn and i am going to put him on ventilator. do you wish to see him?". i just looked at him and my heart got broken into pieces. I couldn't believe my eyes, that the man sitting in the chair last night is very unwell. Drs told me 48 hours. we have no family here in this corner of the world and no great friends circle either. My brother in law just landed india that morning after dropping my mother in law here with me. i do not speak my husbands mother tongue and my mom in law cant speak English. i had no idea how to tell my husbands mom that hes unwell and on ventilator. I just managed to phone couple of my friends, sister who lives in Kuwait and my brother in law who landed half an hour ago in Mumbai airport and was standing in immigration when i phoned to say that brother become unwell and on ventilator now. I could hear him shocked and left with no speech. I only heard he is whispering to himself that i need to return to UK. From that day 8th morning, we family had started a different kind of life, anxiety, and stress and I call it darkest period of our life. I wish no one would ever go through this.
I am a nurse practitioner, so my little knowledge made the situation so worst. I knew exactly what was happening. so Once the first 48 hours passed drs again told me another 48 hours. I could see he has low oxygen level even being on ventilator. he had an urgent CT scan on the 8th and told me he has consolidation in the lower lobe. but they didn't tell me he already developed partial respiratory failure. I could see he was getting more worst day by day. Had urgent CT again on sunday and confirmed severe pneumonia and complete respiratory failure. that's where I heard the word ECMO first time in life. My husband was put on ECMO on the 12th February. But I heard the worst in my life. One of the intesivist took me into room and told this is the CT report and I am going to give him last chance of survival. If this fails to survive him, then I might have to think of turning the ventilator off some point. And again I was on my own in that room to listen this. words are inexplicable to express my feelings here. I personally knew most of those anesthteist as i work with them. So one of them who is my friend came and told me your husband is critically very unwell. the biggest puzzle here was they couldnot identify the organisms causing pneumonia for the first 9 days. It was 4 organisms caused pneumonia and the nasty one found out the last. By this time my husband had developed all possible complications that could happen. pneumonia, respiratory failure, respiratory acidosis, lactic acidosis, complete deranged liver functions, severe hypotension, right side heart enlarged, hospital acquired C DIFF, all other possible systemic and peripheral complications like severe swelling over the body including the eye lids then ? toxic mega colon as a complication of c diff. you name it and he had everything. He was on ECMO for 13 days and he made it. He discharged home on the 19th of march which took one full month of ICU and 3 weeks of HDU and ward. We kind of lost the number of CT scans, chest xrays, bronchoscopies, echocardiograms, ultra sound scans he had and last tracheostomy . He also developed some fluid collection on both lungs towards the last week of discharge and still got pleural effusions and atelectasis. Liver functions are still off, . My poor husband dealing a lot at this moment on top of his surgical recovery. He is a fighter and really doing his best. I feel very sorry seeing him struggling. then I know we are extremely lucky that he is alive and with us and I am able to say the stories to him and to the children.
sorry for the long post. This is a rare event and I thought of sharing this with all of you here. i could write a book about my feelings and emotions i or the rest of the family had gone through. My brother in law who returned to the uk on the 13 th February and just gone back last sunday. we both used to leave home after dropping children to school and spent till late night in the ICU. Our hospital has flexy visiting time, so we were beside him till we leave around 10pm. we both had our prayer books and just sat and pray all day. At the end our prayers are heard and he is at home recovering. its a long road to recovery. I could see that he has good days and bad days. This is our story here. But I know there are plenty people out there, conditions are more worst than my hubby. so no reason to moan. Everything I have right now is a bonus.
Update by Mr:
Home for last 2 weeks. Lost 1 stone and stabilised around 11stone weight. Came with JEJ tube and feeding overnight. Oesophagectomy has contoured inverse V shape cut on tummy and cut on underside of right shoulder. Stapled cuts. Scars all over the body for various punctures.
Had horrible time in last days of ITU, and HDU due to nightmares and hallucinations because of long stay in ITU.
I have no memory from surgery table till end of ITU stay. But watching videos I can connect the hallucinations I had and physical actions during sedation.
Currently recovering from flu and cough. Had lot of retching and saliva build up also there. Managing all variety of food and indulging some spices lightly.can drink milk. Though palpitations and sweating happens after eating. Had issue of hot and cold temperature flashes which was blamed on the ECMO, these have weaned off by now.
Last week of longtec 10mg and short tec, paracetamol. No other Medicines.
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