This update will be long
Saturday Jan 14th: St Martin Hospital
It was an ordinary Saturday morning in the tropics. I'd just gone back to work, the prior Monday, after my sick leave due to surgery number 3 in September 2011. I'd gone to town to the cosmetic store for shampoo and the like. I returned a book to a friend that loaned it to me over a year prior, I dropped by my moms house said hi to my brother (who is doing well) and picked up some papaya (my mom has several trees laden with fruit), then i stopped by my mom at her job for a few minutes. I'm fine, fresh, perky, hopeful. I'm actually doing well. I get home, it's noon and just as I'm about to reheat the shrimp wontons i made from scratch the night before pain hits. Out of nowhere I'm crippled with pain in my stomach.Saturday Jan 14th: St Martin Hospital
I try calling my Doctor (dialed the wrong number by mistake, in the pain i was in it's a miracle i was able to make calls at all!) Then i call my mom. She'd just seen me so she initially thought i was kidding, then she realized those were tears in my voice. I'm laying on my floor and telling her i need to go to the emergency room now!
We get to the ER and they are taking people in the order they came in, not by the severity of symptoms which makes absolutely no sense to me whatsoever. I'm still in excruciating pain and tears stream down my face. My mom and i alternate between going to the window to find out how long. I begged for a gurney, i told them i'd wait my turn just put me on a gurney in the corridor. None was available i was told. Two hours later i told the admission girl, either you let me in or they will have to scrape me off the floor in a minute. Finally a nurse came and got me and took me into the 'box' (examining room).
while waiting for my mom to come get me, i gathered my last operation report and latest scans so they'd have an idea of what they were dealing with and speed up the process once i got to the ER. But they didn't look at it until they brought me in from the waiting area. Kinda defeated the purpose really.
One doctor started asking questions, then gave me morphine which didn't ease the pain at all. The doctor that Diagnosed the problem back in September overheard my name and came in to offer his help - knowing my case history -
The weekend's a blur:
Between being wheeled to the hospital room and being wheeled into surgery, i have very little memory of the weekend (memory loss due to coma) some little 'scenes' come back now and then. But the complete weekend hasn't come back to me yet.
I was admitted and spent the weekend in agony. Our local hospital doesn't have a scanner or MRI, those machines are only available at a local privately owned medical clinic which is closed on the weekends.
So i got to wait until Monday when the sent me for a scanner at 9am, they found another blockage, part of my intestines died. My surgery was scheduled for 2pm, this i know from a message i sent my mom. I remember being wheeled into surgery and recognizing the same operating theater. I remember the nurses and anesthesiologists talking, one nurse was MIA and the other was annoyed. I remember thinking 'i prefer going into surgery early morning when everyone is fresh and not annoyed with each other' I said a prayer. The surgeon was getting ready (or was he still at lunch? my memory is sketchy here). I made a mental note to watched the clock before they put me under so I'd know how long the surgery lasted when i was awoken hours later.
Tuesday Jan 17th:
Except this time they didn't wake me after the surgery. The surgeon told my mom how the surgery went (it went well) and explained what he did and that they would let me 'rest' all day Tuesday so i wouldn't be awoken in too much pain.
Wednesday Jan 18th: Martinique Hospital ICU
Wednesday at 6am they started to wake me, at 10am i was having heart failure, my heart was hardly beating and enlarged on one side.
A little after 10 They called Martinique special evacuation unit for heart complications. And they called my mom and told her to come to the hospital immediately. My mom called my cousin (who i consider a brother) and my two closest friends and everyone headed to the hospital from their various work places.
The Doctor told my mom and 'brother' that it's touch and go, it's an hour by hour thing. Later in the day it was a minute by minute thing. Chances were slim I'd survive. The staff of doctors needed to keep me alive long enough for the medical evacuation with extracorporeal membrane oxygenation (EMCO) machine. My heart wasn't circulating enough blood oxygen wasn't getting to my organs. My lungs were failing as well. Doctors suspected either a pulmonary embolism or septic shock.
ECMO is actually a misnomer. Extra-corporeal life support (ECLS) is probably a better term. If a catheter is placed in a major artery and a major vein (VA ECMO), the patient can be provided with full hemodynamic and respiratory support, aka cardiopulmonary bypass. If catheters are placed in two major veins (VV ECMO), the patient’s respiratory status can be maintained, but without the hemodynamic augmentation.
The purpose of ECMO is to allow time for intrinsic recovery of the lungs and heart; a standard cardiopulmonary bypass provides support during various types of cardiac surgical procedures.
By 3pm it was determined i was a good candidate for the transfer and the ok was given to dispatch the team from Martinique. They got to St Martin around 7pm, where a crowd of my family and friends had gathered. One nurse remarked that they never seen this before, she went on to say, she doesn't know this person (me) but it has to be a good person to have so many people come out in support and prayer.
In the meantime i'm in ICU near death and know nothing of what's going on.
At 9:20pm I along with a slew of machines were rushed to the Airport, and airlifted to the Martinique Hospital, my first time in a private jet and I'm unconscious! Darn it! We arrived in Martinique a mere 10mns before the control tower closed. We cut it close but made it.
Wednesday Jan 19th
When i arrived in I was taken off of the portable ECMO machine and hooked up to the larger stationary machine. My heart function was monitored 3 times a day.
I'm also receiving a slough of anti-biotics for Sepsis.
My mother fought to get on a standby flight. She got onto the last flight and meet with a friend of one of my relatives. Neither knew the other. My mom Stayed with Josiane for 2 days and later moved to a hotel within walking distance of the hotel. She visited me in my comatose state every day and talked to me.
Thursday Jan 20th
Given that my heart has returned to normal function and size, I'm weaned from the ECMO machine.Saturday Jan 21st
My mom speaks to me and I move my legSunday Jan 22nd
My mom speaks to me and I open my right eye and close it again
Monday Jan 23rd
I awake from my tumor. I already know I'm in Martinique before my doctor tells me. My mom comes at visiting hours and I'm so happy to see her. We both cry. I hold on to her so tightly. I don't want to let her go even for a second. I cry, she cries. I still don't know all that has transpired. Coming out of the coma i have vivid dreams i think are real. Dreams that pick up where the last left off whenever i fall asleep, same Doctors, same nursing staff, so much so that i have trouble discerning what's real from what's not.
I was convinced that the hospital staff wanted to kill me. I heard one nurse ask her colleague why do they always think that when they wake up from a coma. Given all what was done to save my life i know this is not true now. But lying there on the hospital bed it was very real to me.
Tuesday Jan 24th
I was extubated. For the first time in 9days I now had to breathe on my own and it's not easy. Something we all take for granted i had to actively try to do. My breaths were shallow ans too quick in the beginning. The first day i had no voice. I tried to talk and nothing happened, so eventually i stopped trying, so when the Doctors and nurses would speak to me i would nod and shake my head. Any questions that could not be answered in that way i would point to my throat and shake my had no. Until one nurse told me my voice would come back only if i tried to speak. so i got to work and by visiting hours the next day i could speak to my mom in a small almost inaudible voice. Post-op from any digestive surgery it is imperative that 'transit' function resume. Stool was once again passing through. I have to hand it to the nurses and nurses aides, changing adult diapers cannot be easy. As an adult having your stool cleaned and diaper changed like a baby is very humbling. With my other surgeries by the time these functions returned i was either already walking on my own or able to use a bed pan. This time not so.
My Mother and Doctor's tell me what happened to me.
Wednesday Jan 25th:
Monitoring in ICU continuesMore explaining of what I've been through, more questions from me. I have a persistent cough when i talk (and later when i drink or eat). It's due to the tubes that were in my throat.
Thursday Jan 26th:
My Doctor asks me if i know where i am and what day it is. I answer very confidently that I'm in Martinique and it's Friday. Only it's not Friday it's Thursday. Now I'm confused, he has to be wrong we already did Thursday.I get many surprises that day.
Surprise 1: My mom comes to visit. Why is this a surprise? In one of my very realistic dreams my mom was forced to go back to St Martin by an emergency in the family (a death of a dear friend) on Thursday. My first question when i saw her was what are you doing here? She responds it's visiting hours. Didn't you go back to St Martin yesterday? What day is today? I still don't realize the Thursday i already experienced was a dream, tragedy and all. I figure I'm now some enlightened soul able to live/experience days several times. I still don't realize the accident and death and mom leaving was all a dream. I'm visibly upset, so much so that one on the nurses thinking i'm depressed by my present state of health gives me a pep talk, but I'm hardly listening, I'm torn was i given this 'super power' (knowing the future) to prevent the accident? I don't want the person to die, but i'm afraid to tell as this person is very dear to my mom and the news will devastate her. What if i tell and the accident still happens? What if i don't and it does?
Surprise 2 was that we are in some sort of groundhog day kinda conundrum. Alternate realities.
Surprise 3: I'm so lost in thought that i don't realize they bring me lunch. I'm expecting something very light or at the very least pure-ed, but no! the send me a normal meal. Pasta and steak with some sauce. I ate maybe 2 spoonfuls of the pasta before I'm full and exhausted from eating.
Surprise 4: I'm being released from ICU today! Wait! what? Already!?!? I would be sent to the surgical ward for further monitoring.
The Physical therapist assisted me in getting out of bed and sitting for the first time in 10 days.
by afternoon, i was in my new room on another floor of the hospital. So far Thursday number 2 is going much differently than Thursday number 1 (the one i dreamed but still think is real). So i decide to let this new Thursday play out and said nothing of the accident that was to happen that evening. All the while praying that that dear family friend isn't taken from us.
Friday Jan 27th Martinique Hospital Surgical ward
My sleep is troubled with nightmares that are obviously dreams (with time travel back to the first world war French country side etc....) I wake up at 3am. And can't go back to sleep. There's no way of knowing if the accident really occurred or not. Visiting hours aren't until 1pm. That was the longest morning ever. I was given breakfast for the first time in forever. I really tried but ate little. Just sitting up to eat was hard and painful. One of the nurses aid asked if i could bathe on my own i told her no, she said she'd be back to help. When she returned i told her i was put to sit for the first time the day before and i could try to walk to the bathroom with her help. While she bathed me and put my in a clean hospital gown and pamper, her colleague changed my sheets. No clothing or personal effects are allowed in ICU so i didn't have any of my things. My mom would bring me my 'hospital bag' at visiting hours. Ever since my second operation i have a hospital bag packed at all times that in case of emergency anyone can just grab out of my apartment and bring to the hospital. My mom had brought it to me before the surgery, it was returned to her before they sent me to Martinique and she brought it with her.
When my mom arrived all smiles and happened to mentioned that she spoke to the same family friend (that was supposed to be killed in an accident Thursday night) on the phone Friday morning. And that she sends her love. I finally broke down and told my mom of my alternate reality. My mom reassured me that the lady was fine and very much alive. I start questioning my mom about other things i thought transpired while i was in ICU, i had her explain everything to me again from the operation in St Martin to my time in ICU. It starts to dawn on me I may have dreamed a lot of stuff. But the dreams were so vivid, so realistic, all the medical staff were the same in the dreams, there were no differences between the dreams and reality!
My Doctor says I'll have to stay the weekend for sure in the hospital and by the following week we will discuss my returning to the hospital in St Martin. I'm also told to get up and walk.
I'm determined to walk as much as possible, so despite having the diaper i have my mom help me walk to the bathroom when i need to go.
I was still being fed intravenously up until now so i was still getting nutrients and liquids. This day they were removed to encourage me to eat and drink more.
I have a fit of coughs when i drink or eat or even talk.
The Doctor (i have many during this hospital stay) that flew to St Martin with the ECMO machine and took me to Martinique came to see me. I call him Superman! From the way my mom said they rushed in to the hospital in St Martin and rushed out, their 'no nonsense' 'this is and emergency' 'we have not time to waste' attitudes, their manner and their 'we are here to save a life' demeanor put my mother at ease on that faithful Wednesday Jan 18th. After having spent the past 10 to 11 hours in the hospital uncertain of whether I'd live or not, she knew then, when she saw them, that I'd live. So that's why I refer to him as Superman.
He introduced himself to me. By now I'm used to staff recognizing me although it's the first time I've laid eyes on them as most saw me near death and in a coma. Explained about the unit he heads up (the ECMO unit) it's relatively new to the region and I'm only the 3rd person they have evacuated from St Martin using the machine. By the time he got to me i was almost dead. I enjoyed hearing the technical aspects of the unit and of my transfer. They are based in Martinique and can be dispatched to Guadeloupe, St Martin and even French Guyana to save lives. Since Martinique is the cardio specialized hospital of the region, just as i was patients are brought there using the portable ECMO.
I asked what caused my heart problems, he said they have no way of knowing whether it was caused by a pulmonary embolism as the blood clot could have been dissolved by the ECMO machine or whether it was septic shock. What he avoided telling me and what my surgeon later told me is that the only way to know for sure would have been by performing an autopsy and for that i would have had to not survive my ordeal. I much rather this outcome where i survive even if it means never knowing for sure.
Since I've been released from the hospital, i read online that they made history with the first trans-Atlantic ECMO evacuation of a patient. A patient needed a heart transplant was successfully taken from Martinique to Paris on a commercial flight. Without the ECMO and the team of doctors that accompanied the patient such a transfer would not have been possible.
When Doctors aren't sure you'll make it and are themselves astonished that your walking talking smiling asking question, you know there's a higher power at work her.
I thanked him profusely. He told me when my mom got there to have the nurses call him as he didn't have time to talk to her that faithful night.
Saturday Jan 28th
I have breakfast and then make my way on my own to the bathroom. But the short walk knocks all the energy out of me. I sit in there and wait for the energy to go on. I manage to brush my teeth but that is just about all i can do. i rest my head on the vanity and that's where the nurses aide finds me and helps my to bathe and get into my clean nightgown and underwear. I decide to forgo the diaper. During the day my mom helps me to the bathroom and at night i use the bed pan.
I decide to take a short walk in the hallway as well arm in arm with my mom. I plan to be autonomous enough for a return to the hospital in St Martin by next week. Where there's a will.....
Sunday Jan 29th
Visiting hours start at 10am so my mom comes much earlier, she also has to return to St Martin today. My brother has doctor's appointments on Monday and Tuesday. He's been home alone all this time. She left him with enough prepared meals to tide him over while she stood vigil at my bedside. Now that I'm out of the coma and on the mend she feels confident enough to leave me to take him to his appointments then return on Wednesday. I know it all makes sense to me on an intellectual level, but I'm still bawling like a baby all morning because I'll miss my mom and i feel lonely already and she hasn't left yet.
Waking from a coma feelings are so heightened. Fear, sadness, happiness, love.... i remember this from when my brother woke from his. So i know why I'm feeling this way.
To distract me my mom asked if i wanted her to help me onto the balcony. I got a good dose of vitamin D, my first time in the sun since Jan 14th.
My employer has been keeping in close touch with my mother and asked what they could do. When they found out she would have to leave my side, they offered to send on of my coworkers. She arrive sunday evening.
Also that evening my private room was needed for another post-op patient and since i was the only patient in a single room so 'mobile' mine was the only option. So i was moved into a larger 4 bed room with 3 other female patients.
Monday Jan 30th
My Doctor does his rounds and tells me he'll give St Martin a call to see when he can arrange to send me back. Right now it's looking like Tuesday or Wednesday return to St Martin. I'd asked my mom to get me clothing i could wear in the event that my return would be before she got back. So far the plan is to send me home on a commercial flight.
About an hour later I'm in the bathroom and Dr Superman passes by i hear my name being called, i yell i'm in the bathroom. He says there's a possibility i can go back to St Martin today. He's going to bring another patient up with the ECMO machine and i can return on the return flight. And just as quickly he was gone! Off to save a life!
He goes to St Martin via army helicopter, Flies up on the jet with the patient and all the equipment and the jet has to return to St Martin, so instead of going back 'empty' i get to go back on it. It's all contingent on the patient making it of course. Surviving long enough for them to get there, hook up the machine and fly him up.
When i get out of the bathroom, i try to confirm with the nurse what i thought i heard through the bathroom door. Was it all wishful thinking? can i start packing? She's not sure but promises to inquire, then says but they were making plans for you to return on a commercial flight tomorrow or Wednesday. To which i respond, "I'd much rather sleep in St Martin tonight. She gets back to me about an hour later, I'd heard right, I'd be going home today, they just didn't know exactly at what time. By noon i was dressed and packed. Ambulance personnel came to take me to the airport at 8pm. It was one long nail biting day.
My return flight in the jet i was very much conscious.
I got to the airport in St Martin and the pilot who flew me out came down to the airport (it was his night off) to see me. He just had to be there for my return as i was doing so bad when i left. He had to witness the miracle for himself. He was so happy to see me back alive.When i got to the hospital around 11pm i was greeted with a big hug from one of the emergency nurses. She was so happy to see me back alive.
I was home extremely happy to be back home a mere week after waking up from the coma.I cried happy tears.
My mom and 'brother' came and met me at the hospital.
Tuesday Jan 31st to Thursday February 2nd
Over the next few days I'd see a lot of the Hospital staff, some i recognize others i don't but all were concerned about me. And happy to see me back alive. One of the Nurses even started calling me Phoenix.
A mere week after being discharged from ICU i was discharged from the hospital.
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A week ago I meet with the surgeon who performed both September 2011 and January 2012 surgeries. He greeted me with a hug. He said there are times he doesn't like his job (as we all do sometimes), but in this case (my case) it is an honor to work in this profession. He said they really fought, FOUGHT! to keep me alive.
I've since had either an allergic reaction to local anesthetic or an infection where they'd hooked up tubes to filter my blood through the ECMO machine. Both are being treated and it's clearing up. I'm not comfortable when i stump my doctors but I've been doing that a lot lately.
My thoughts on the entire experience:
I've had my difficulties wrapping my mind around what happened, I've had to come to terms with what happened to me, with the things I have no control over: Even with this last surgery, I'd never considered NOT waking from the surgery. Never! It's very likely i will have to have more surgeries, the complications that led to the last 3 surgeries are all do to scaring on the inside.The more surgeries i have -> the more scars -> the more complications -> the more surgeries. It's a vicious cycle but it's my reality.
Now i have more things to worry about: I've known about the sleep apnea since the first surgery. I've asked my GP about it and he didn't seem overly concerned and never sent me for further testing. But now it's more of a concern to me, the whole not waking up thing.....
Now i have to go to the heart specialist - For heart monitoring and sleep apnea
Now i worry about blood clots - Genetic testing scheduled
I now understand more of what my brother went through during his coma: the extreme emotions when coming out of it, having trouble distinguishing between dream and reality. The weird yawning thing.
I've now had another near death experience (i wasn't breathing when i was born, i came out purple and then almost drowned once). I was going into 'the light' I was happy and at peace with it. I had no regrets and was relieved to move into an existence where i wouldn't be sick anymore. My last thoughts were "I love my mom and I love Jesus, let's do this!!"
Then an image of my mom passed before my eyes and i thought, i can't do this to my mother. I can't have her travel all this way to find me dead. Parents should not have to bury their kids. So i started to fight! I did what i do best and fought, fought the odds. Fought my way back.
Through all this i know I've had the best medical care, but the hand of God played a huge role as well. Of that I'm certain. If it wasn't for pray, faith and God i would not be here today.
I remarked to my GP the other day that i can feel the difference between this time and the last surgery, my body i so much weaker. He responds with 'yeah that's normal, you... you know.... you almost died".
The other difference is the hair loss. I discovered a bald spot a week ago. it's right at the spot where my head would have been in contact with hospital bed for an extended period (while i was in the coma). It could also be due to the anesthetic as well. either way i know that the hair loss is temporary. And the hair will grow back in those patchy areas.
When people asked how i was doing especially when i would see all the emotions on my moms face she was trying to hide. I'd respond i had it easy, i just laid here, my mom had it hard worrying and praying. You see when my brother had his car accident and was in a coma for a month, my mom had me as support. This time she was all alone and I know it was hard for her.
As for me I 'm on leave from work, resting and regaining my strength slowly.
My 7 year anniversary cancer free is fast approaching March 9th 2012.
