Cindy's Dance with Death

[CindyLee]

I was in a coma, due to peritonitis and sepsis 3x, for 35 days and on life support in ICU. My children were told to make funeral arrangements for me. I died and was revived twice. When they removed my ventilator, I regained consciousness. After a total hospital stay of 7 months and 4 surgeries, the last which lasted 10 hours longer than expected and had, at one point 5 surgeons operating on me at once, left me unable to breathe unassisted and again, I lapsed into a second coma for 12 days. I also awoke with an ostomy which I was very upset about, not realizing I was lucky to be alive. That was the only time I recall behaving as I had brain damage, cursing, throwing things. Went through all stages of grief, loss of large intestine, in 2 days. Then carried on as usual.

When I came home to recover, I was drowsy for 2 weeks, medication probably, sleeping through the nights and napping 1 or 2 times during the day.

As I was weaned of all medication , I began to be unable to sleep at all. For days. I talked to my family doctor about it who strongly resisted helping by pharmalogical means.

Days would go by, 5 days and nights was the longest time, without sleep. Finally, I was referred to a psychiatrist who wanted to prescribe an antipsycotic medicine , Seraquil, which I can't take, along with several other meds, now could kill me if taken now my surgeon carefully explained to me since my illness. I refused, explaining why, and showing a better than a layperson's knowledge of pharmacology , as my son studies neuropharmacology. He questioned me, gauging my knowledge. He appeared upset that I would educate myself on my health issues but aquiessed, agreeing I was correct to deny this medicine for good reason but vascilated stating the terrifying side effects I'd suffered due to this medicine before, wouldn't necessarily happen again. Not a f***ing chance.

The letter sent to my family doctor said that I refused medication, true, but I was allergic to it! I was praying this doctor could help me sleep again. I did add that Seraquil is used off label for sleep as it is an antiphyscotic and should only be prescribed to treat that issue alone. Use of certain meds that show helpful treating other problems, are not to be prescribed for anything else.

I'd lost 45 lbs during my hospitilization, regained 25 lbs but now due to lack of sleep, depression, panic, anxiety, I'd lost the weight i gained and now weigh only 85-90 lbs at 5'7". Pain is a daily thing now and I feel I'm falling apart and certain I'll not live till year end.

My only hope is a Neurologist appt, where, I can find out the extent of my brain damage , short term memory loss and if it is permanent. Also, I'm getting an answer from him about why I can't sleep and what he suggests that I do before I drop dead. I was so exhausted that 5 months after returning home, I contracted phnemonia, lost consciousness and spent another 2 weeks in ICU. One kidney also failed. I believe insomnia had weakened my body so greatly that it was partly responsible for it.

If I do fall asleep, it is for 1-2 hours at most. I dream, am relaxed, but something wakes me up everytime.

If this Neurologist can't help me sleep normally again, I see only 2 options. 1. I become a statistic and buy sleeping pills illegally or 2. I die from exhaustion, heart failure , organ failure or possibly suicide.

Research recently done by myself shows that 42% of coma recovery patients have insomnia or other sleep problems. This tells me I'm not alone. I'm not seeking drugs but I believe I have the right to a certain quality of life which includes normal sleep. Hopefully the depression, panic, anxiety and pain will abate when this happens.

Is anyone else suffering like me? I'd like to know.

Thanks for listening.

[Sepsur]

Hi CindyLee

I struggled to sleep for a long time. I have been out of hospital about 2 half years & I have periods of time where I sleep is interrupted. For a very short period of time in ICU I had sleeping tablets because I didn’t sleep for 3 days solid after waking from coma.

The emotional turbulence diminished in its intensity over time.

Recovery does feel really hard at times. I tried to eat well, light exercise & physio helped to improve my daily routines. Trying to get up at a proper time & go to bed at a normal time for instance. I hope it improves for you soon.

[CindyLee in reply to Sepsur]

Thanks for your reply. I appreciate your support and story. Fight the good fight. We survived for a reason!

[Copse77]

Dear Cimdy I am sorry you had such a traumatic experience and are still suffering. Sepsur has provided some really good advice. I attach below a link to a radio programme 14 minutes long by a trustee of ICU Steps who was a former ICU patient. He talks about his experience in a coma. There is also an interview with a clinical psychology specialist describing the impacts on the brain from sepsis. I watched my brother suffer critical illness visiting every day when he was placed in induced coma after all his organs failing with sepsis. Just over a year on he has recovered well. I hope this information helps you. You are right to expect your choices to be respected as you have made them from an informed position. Best wishes. Here is the link.

bbc.co.uk/programmes/m0001jpv

[CindyLee in reply to Copse77]

Thanks for your reply. Sorry to hear about your brother's illness and your family crisis. I'll try your suggestions. I'll post results.

[Copse77 in reply to CindyLee]

I would also say time will be a great healer. Your body has been through such a lot. As the clinical psychologist says on Radio 4 they are still trying to understand what happens in the brain during sepsis. We as a family are 1 year on and my brother has lots of hospital appointments but he is keeping fit. Please be reassured that you will find a solution to help you with the lack of sleep and pain. When you lose sleep it affects everything that’s why sleep deprivation if a form of torture. Take care of yourself.

[solkjaer]

sorry to hear your story, I to still struggle trying to sleep partly because as soon as I shut my eyes I am back in my coma bed. I was rushed to hospital with severe chest infection, sepsis, pneumonia and when I arrived at A n E I stopped breathing I personally don't remember this my wife told me weeks later, apparently I was given up on. luckily a consultant said he wanted to try one last thing and plunged a needle in my chest, my wife said I started breathing. I was then put in induced coma for 2 weeks, after 3 days of coma my wife was phoned by icu to say please get to hospital asap as they thought I wouldn't last over 2 hours. I've always been a I ve always been a fighter and luckily survived. my wife said I looked awful

[CindyLee in reply to solkjaer]

Hello fellow fighter. No a lot of other choices though. Keep healing.

[Rosebudda]

Hi Cindy Lee ,so sorry to hear your traumatic story .I suffered septic shock brought about by cellulitis from a scratch on my hand from my cat last April .Then necrotising fascyitus set in ,pneumonia and two cardiac arrests. I was in icu in a coma for 2 weeks,ventilated, had 8 operations in 3 months. I was delirious, hallucinating ,paranoid, shouting at my family and the staff, believing everyone was trying to kill me .I was very lucky to have escaped from this horror with just skin grafts down my arm and hand but the emotional scars still persist .I have nightmares and hear voices occasionally which is not unusual following such a severe illness .What has helped me most is meditation, which I practiced before my illness, and was difficult to get back into as my concentration has deteriorated, , but it's giving me some peace, and some headspace and has helped me relax .I try to practice gratitude every day, because I am very lucky to be here. I really do hope you can begin to heal very soon x

[CindyLee in reply to Rosebudda]

Thanks for your reply. I'll try meditation and post results. We're here for a reason!

[Alex-Brighton-76]

Cindy, your not along I have been in many comas and the sleep problem is there, I try to relax as much as possible even for short periods it helps having the TV on in the background I hope your recovery goes well and your other problems will in time fall away I also can feel depressed from time to time I this that's part of the process, all the very best

[CindyLee in reply to Alex-Brighton-76]

Thanks for your reply. Nice knowing I'm not alone. Frustrated with doctors resisting sleep meds my quality of life is affected greatly but no help. Why?

[CindyLee in reply to CindyLee]

Saw neurologist Friday thinking I'd get some answers about memory loss and extend of brain damage only to find my doctor wrote migraines as the referral reason. I waited 10 months for this appt. So f-ing frustrating! Was given a rx for an antidepressant that MAY cause drowsiness. Aside from this rx being given to me for off label use, Dr. talked to me like I was 5 yrs old and explaining things to me several times over despite my insistence that I understood what she said. Needless to say, I didn't fill the prescription.

How much longer must I suffer? My only option may be to buy meds illegally. Not something that I'm happy about. So I guess it's lose, lose right now. Wish I could give some good news right now but I appreciate knowing I'm not alone and for this, I thank you.