Sunday, October 11, 2009

Near Death Experiences with Sickle Cell

I'm sure many sickle cell warriors can relate to having near death experiences. I've been deathly ill a quite a number of times, but out of those numerous admissions, only once can I quantify as being near death.

The first was in 1993. I had Malaria, Cholera and Pneumonia when I was 13 in Nigeria. I had passed out about 10 blocks from home when I was walking home from the bus stop. One of the women on the street recognized me and carried me all the way home. She didn't know exactly where I lived, but some other neighbors saw me and showed her my house. My parents rushed me to the hospital. I don't remember much from that time, but I was in the hospital for 3 weeks.

The second was in 2001. I had gotten acute chest syndrome, and it was so bad that I was placed on BIPAP. In addition my liver enzymes were so high, I was beyond jaundiced, and had to have my a hemapheresis done. This is like dialysis, but they drew out all my blood and infused me with 6 units of fresh blood. My sister said the blood coming out of my body was almost black, the doc said there was no oxygen and the cells had been completely broken down (I had very few viable red blood cells).

The third was just last year, a few days after I started taking Nicosan. It was the flu turned to pneumonia, turned to Acute chest, and I had to be placed on the Ventilator for 2 days as they forced oxygen to my lungs. When I was extubated, I was so grateful to be able to breath normally! I was in in the hospital for 10 days that time.

Most of the time, when I get really, really sick, I don't remember anything at all. I think the forgetfulness is my mind's response to how frightening the whole encounter must have been. I really fear getting into respiratory distress, pneumonia or acute chest syndrome again. It seems to be the pattern of my near death experiences.

What about you? Any near death experiences?


Daisy said...

My sister (she has the disease) and I were just speaking about the forgetfulness part of it today. I know that's not the full topic but I wondered if that's a defense mechanism to get through the pain. Hard to tell with us as it's those darn genetics and everybody in our family is forgetful..LOL
I will have to direct her to this post and let her reply about her experiences but it often saddens me at how little talk or research there is about this crippling disease. You might see me pop over here now and again to check on ya!
So happy to see you doing a great job representing! Keep up the good work (because there are folks out there reading,even if they don't comment)

bkv said...

My big near death experience happened when I was 15 years old. I'd just started taking hydroxyurea at the time, so I was in and out of the hospital on a weekly basis because of all the side effects and pain as my body adjusted to the medication. Then, during an extended admission I fell asleep, and the next day I woke up in the ICU; according to the nurse, I'd woken up during the night, pulled my I.V. out, and started walking around the floor with blood dripping everywhere, until a group of nurses restrained me. After that incident my condition deteriorated, and after a week in the ICU I developed a pneumonia. At this point I was transferred to an ICU at a larger hospital that had more experience with SCD. There my breathing started getting worse so, they had to draw from my arterial vein every 4-6 hours for 2 days to run tests. After that my breathing was still getting worse so I was intubated. When I woke up from the anesthesia after being intubated, I panicked from not being able to breathe on my own, so I was put on heavy sedatives, and spent the next two weeks on a ventilator with a catheter and feeding tube, in a coma-like state. Up to this point I was kinda in denial over how sick I really was, but when I was extubated and taken off the sedatives my mom told me that 2 weeks had gone by (I thought it was just one night). And, there were relatives at my bedside who lived a thousand miles away and that I hadn't seen for a couple years. After the extubation I spent another couple weeks recovering(with a few minor incidents), and was finally discharged. After all was said and done I'd spent nearly two months in the hospital and lost about 40 pounds in the process. Several aspects of it were pretty frightening, I'm still fearful of getting into respiratory distress again; every time the big "P" is mentioned in the hospital I get a bit distraught over the prospects of reliving the experience. And, I'm still terrified when a nurse goes for my arterial vein, even though it doesn't hurt that much.

Dark Neo said...

Wow Bkv that is one serious encounter!

I think my experience was when I was around 9yrs old... not really sure All i remember was getting up from bed late in the night and falling down bcos I couldn't stand.... my knees hurt so much I couldn't walk...all my joints hurt then I remember waking up in the car while being driven to the hospital and stopping cause I had to throw up...then i remember being carried to one of the rooms in the hospital. I just remember not being able to walk for like 2 weeks after the incident. I think you are right about the forgetting being a defense mechanism