Hi, in March 2020 I was admitted and placed in an induced coma due to COVID 19. I woke up three weeks later. Found myself with a tracheotomy, couldn’t talk, write or even walk. I remember seeing things, floating between two worlds. Delirium, hallucinations, nightmares, you name it. I also had memory loss or “brain fog” I had completely forgotten that my son had been admitted to the hospital four days earlier, and had been placed in an induced coma due to Corona virus. Nonetheless, I was told eleven days after I had woken up that my son had passed away on March 27, 2020. Imagine my broken heart not being able to be with my son in his last moments. Regardless, I think that these events have slowed down my healing. I’m still suffering from traumatic neuropathy and brain fog. I’m taking Gabapentin, walking, dancing, anything to bring me relief. I’m also under psychiatrist care.
Surviving Covid 19: Hi, in March 2020 I was... - ICUsteps
Surviving Covid 19
Many of us have been through much the same as you. Except we haven’t lost a son- my thoughts are with you. I was in hospital from Nov ‘19 through to mid March not for COVID but nevertheless I was in a coma had a trachy and had hallucinations etc etc. What I found that helped me a lot was to be able to talk to other people who had been through the same experience I found a group cc-sn.org who provided drop ins for both patients and relatives AND various exercise and yoga classes on zoom. Initially I was very emotional and tearful but received support which was non judgemental. Now 18 months later I am still recovering both mentally and physically.
The next drop in is tomorrow (Thursday) at 7-30 see cc-sn.org/drop-in-meetings
I too took gabapentin it works well but don’t forget it is addictive and takes time to come off.
Take care
Good evening, no matter the causes any coma induced or not is debilitating to a person. I’ve been talking to a Corona survivors group and also a bereavement group . Like you I was very emotional and tearful in the beginning. I feel the support from people who’ve gone through my same experience. I also write poems for my son for in those poems I pour out my heart and trying to write a book. The grief together with the pain is indescribable. I thank you for letting me know about Gabapentin, will be seeing neurologist soon and will discuss with him.
Best
Hi, I have a question about gabapentin. I have been on 3 daily doses of 400mg for over a year. Put on it for nerve pain in my right thigh/hip after nerves were damaged when I was put on ECMO.I have been coming off them over the last 2 weeks. First by stopping the mid afternoon 400mg dose. Then after 5 days i dropped the evening 400mg dose. 6 days on ( yesterday) I stopped the last dose.
Have I done this correctly?
I'm not a medical person so I can't say BUT. In my case I was on it twice. Leading up to Jan '19 I had been on a strong dose of morphine for 2 years. To help me come off the morphine I was put on gabapentin 3 x 300 per day but I quickckly got adicted to that. I need help from my GP who supervised me coming off it. It was a gradual reduction over 6 - 9 months. I was In hospital end of '19 until March '20 and had been put on Gabapentin there again the equivalent of 3 x 300 and when I came out I was still on it. I spoke to my GP because I was concerned that I was back on it and she agreed to me comng off it fairly quickly by reducing the dose. I would say firstly you really should have support and you may find reducing them as quickly as you have may be too much. But only you can tell. I have issues with both my spine and nerves so I understand where you are coming from. I also have neuropathy in my legs although that is starting to get better over the last 18 months. I am "lucky" I've had rheumatoid arthritis for 40 years so my pain threshold is quite high but having said that it can get a bit much sometimes. Physical issues then can effect my depression although that is not too bad at the moment Just have to be careful in case it kicks off
🤔
Thank you for the input. I was advised by a doctor at Guys &StThomas, where I was on ECMO who gave me the go ahead to come off the gabapentin as the nerve pain is so far more tolerable and I have been have bad diarrhoea every morning. I was hoping it s cause is the gabapentin cos the upset tummy every morning is getting me down!I have though, for the last 3 or 4 days been feeling low in my mood which is not like me. It's almost like the fact that I I nearly died 18 months ago has suddenly 'hit home'
My family were called in twice because I wasn’t expected to make it.
I was on a ng tube right until the last hour before leaving hospital. Because of a swallow problem I had and partially still have I was on slop for quite some time. It took my stomach ages to get use to first the change from ng feeding and then gradually getting back to normal. Not too sure which is worse the runs or constipation. I also had a catheter up my bum and I don’t think my muscles really recovered.
The group I joined has a zoom drop in tonight at 7-30 you would be more than welcome you can get the log in details from info@cc-sn.org
You don’t need to say anything if you don’t want to but the people attending are either ICU patients or their relatives and have been through the mill for one reason or another.
There is also a private FB group
Critical Care Support Network
Wow,more similarities! I too had catheter up my rear! And like you, I feel I still have very little control with the need to poop, especially as it is constantly loose! I had no tube removed the day before I left hospital. I was though, rushed out ahead of schedule as covid was taking a hold and it was deemed safer to be at home than on the hospital ward.I may well try and get onto the
Drop in this evening.
Thank you so much for you help.
I had the poop problem throughout my stay in icu and not until I went to a community hospital and given immodium did it start to improve. It finally cleared when I was moved to a care home for 4 weeks and given really good food 3 times a day did it clear up. It was one of the worst aspects of my experience.
I’m so sorry to read your post concerning the death of your son @Del20 - I cannot imagine, how awful that must be. Tomorrow is the 3rd anniversary of my Mother’s death which ended with an autopsy because her death was unexplained & alone. During lockdown, & 15months not seeing my Father, has meant that his Alzheimer’s has progressed to the point that he is mute & bewildered. My sense of grief & guilt is so profound.
It wouldn’t surprise me that what has happened to you and your family has greatly affects your recovery. I hope you manage to regain your mojo - this time has taken me to the darkest places you can imagine. In the last few weeks, I’ve started to re-emerge.
Good evening, I can empathize with you 100%. The knowing that our loved one died alone or even not being able to see a loved one who is suffering must be and it’s definitely the worst feeling one can feel. I like you have and I’m going through grief and guilt. It’s been a year and a half and I still cry everyday. I’m hoping to regain my mojo by being more involved with my loved ones, by dancing, writing and walking. I don’t know if I’ll ever be the same but I’m trying. I try to socialize a little more and to always be on top of my health. Please take care and I wish you the best with your father, I will keep you both in my thoughts.
Sincerely D.
Omg you have had a beyond tough time.I hope given time you will get better, so sorry for your loss. X
Good morning and thank you for your condolences. Yes, it’s been pretty tough, tougher that I would have ever imagined. The most painful thing is having lost my son, the second the knowledge of what my daughters and immediate family had to faced. Imagine both your mother and brother in the hospital at the same time. Both their lives hanging by a thread, the only mode of communication with doctors via phone. Doctors doing the unimaginable to keep them alive, losing their brother and and then being asked of my wishes for end of life. I’ve righted this by getting a living will so that none of my daughters is ever put in a position of having to ever choose. In the meantime, I keep going with a broken body and heart, raw still I feel them every day. What’s more, I, like a lot of the people on this post have some of the same symptoms, the runs, constipation, stomach issues, numbness, memory loss, ptsd, confusion and so on.
Best, D
Hi I just wanted to say how sorry I am about the loss of your son and how hard it must have been for you to experience so much trauma. You are a survivor and so resilient even though it may not feel like it sometimes. Huge virtual hug. Our Mum died of Covid in February this year and 2 weeks later my sister contracted it and was in ICU in an induced coma and on a ventilator for 52 days. There were so many days when I was told she would not make it. She is getting there despite numerous health complications. Yesterday she moved to a rehabilitation centre and can hopefully go home in a few weeks.
I have found the drop in zoom meetings for relatives so helpful and as soon as my sister is home, she will join the meetings for survivors.
Thinking of you and your family and wishing you strength going forward 🙏
Hi and thank you for your condolences and your wishes for my family and me. I’m also sending you my condolences for your mom and will keep your sister and you all in my prayers. I guess yes that I am a survivor and have been strong because of my family and the good wishes of people like you who unconditionally, while having been on the same journey as me take the time to think of others. Eleven of my family members were struck with Covid-19. My grandson 27 was hospitalized and most painful to me were my two my great grandsons 6 and 11 who went through a hard time.Finally, I will say that our feelings are unique and that even though we are separated by a virtual screen I feel like we are united in our hearts. I also wish you and your family strength and health. I’m also sending you a big virtual hug.
Sincerely, D
I'm so sorry for the lost of your son and for everything you are going through., I myself was hospitalized for 2 in half months due to covid was on an induced coma for 9 weeks on a ventilator and had a trachea placed., I had to relearn how to walk again and dealing with Nueropathy., I also take Gabapentin., I'm thankful that I made it out since alot of people didn't make it out., I wish you so much light on Ur journey to recovery., bless u.
Good evening, thank you for your condolences. I’m sorry that you had to go through so much trauma. I understand 100% what you are dealing with and believe me I know it’s not easy. Like you I often think of those that didn’t make it out, mainly for the pain their family members had to endured. I pray for each and every victim of this virus, that came to wreck havoc on so many human beings. I hope you continue on your journey to recovery and once again thank you for your well wishes. Bless you also.
Sincerely D
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