Paul Manley

Why is it that dying is never like you envisioned it would be? I woke in a dreamlike haze, not sure where I was or what had happened to me. I was tethered to various monitors that made an almost industrial like noise. A leather skinned older man wearing a blue surgical cap was leaning over me, his brow so close, I could almost count the hairs, and they were bunched together making him look grim and indicating that, now that my eyes were open, he had some serious news to relate. “You have contracted sepsis and are going into septic shock… your blood pressure is plummeting…we are moving you to the ICU,” he said evenly. I could hear his tone, but could barely register the words. “I have to tell you that your prognosis is very poor,” he continued. “You do have some reason to hope in that you came in here in very good physical condition for a 62 year old man. I just want to be straight with you…. your prospects for survival are not good.”

The next thing I remember is my wife (Linn) arriving. While lying on the bed, I put my arms around her and told her what he had said and tearfully admitted that I was not ready to leave this life. I had her, four wonderful children and 3 grandchildren with another on the way- I wasn’t ready to die and nobody close to me was ready for it either. The nurses told my wife that “if he makes it through this, it is going to get a lot worse before it gets better.”

This remark was to prove prescient.

I returned from my 40th Air Force Academy class reunion at the end of September. During that week I noticed that my urine was dark but I otherwise felt fine. I figured that I simply must need to drink more water.

By the end of the week (Friday), I was developing a fever that approached 103 degrees. I normally try and ignore these things and just gut it out, hoping it will eventually clear up on its own, but on this particular Saturday morning I called a nurse practitioner friend.

“Don’t wait until Monday,” she advised me. “Go to the ER now… waiting until Monday to see a doctor is a bad idea.”

I left my wife at home insisting that I was OK to drive and get some quick treatment at the hospital and opining that I would be back in no time. On the way to the hospital I twice bounced off the curb. Luckily, a policeman had not seen this or he would have arrested me for drunken driving.

I parked outside on the street of Monmouth Medical Center (not the closest hospital but a teaching one which I considered a better choice) and went into the ER to register. My hospital experience to date has mostly consisted of visiting my 2 aging aunts who live in nearby nursing homes and are sent to this particular hospital with all too frequent regularity. The ER was nearly empty as Saturday morning is apparently a quiet time for them. After registering, I was led to a back room by a pretty young nurse with an engaging smile. “So why are you here?” she asked. “I have dark urine, a fever of 103 degrees and I probably just need some antibiotics.” “Sure….so why don’t you follow me,” she intoned. Before I knew it, they inserted a catheter in my penis (not fun) and began an IV with antibiotics. After that, things got very hazy until right before they sent me to the ICU.

Since heart disease doesn’t run in my family, and I always tried to exercise, work out and get plenty of sleep, I thought the fastest way I could go would be something like pancreatic cancer….five or six months to prepare and say my goodbyes. Not so. It could be sepsis, an aneurism, a boating accident, pushed in front of a subway car by a mentally disturbed individual, hit by a car jogging or by a bus on a busy street. Always be ready…putting off the really important stuff for “when I have the time or the money” is taking a big risk. Love your spouse and children, develop just a few very close friends, be nice to strangers, take that vacation you’ve always dreamed of and read that book that has been staring at you for a while now. One more thing, if you always wanted to be a pilot, a writer, a fisherman, or play the guitar, whatever it is…get going.

I went into full fledged septic shock in the ICU. For 8 days I was unconscious and on life support. I was rated “least survivable” of the 15 patients in ICU, with a survival possibility of around 10%.-20%. (The basic math I subsequently discovered is a 50% chance of recovery, which is reduced by 10% for being over 60 and a further 10% for each organ failure.) My wife notified our 3 grown daughters who all came immediately from Pittsburgh, Boston and Brooklyn. My recollections of this time on life support are few. I was told afterwards that I was very close to death on several occasions.

My eight-day journey on life support can only be reconstructed by those who held vigil in the ICU, Linn, my 3 daughters (Nina, Elaine and Lisa), my son Kyle (a Navy Seal, who they contacted through the Red Cross to get him home on emergency leave) and my sister Libbi. Later, my brother Tommy arrived from Georgia. They all stayed and slept in the ICU waiting room and occasionally went home to our house to shower, eat and sleep in a bed.

Linn was there every day along with my sister. At first, my fever would not stay down and they placed an ice blanket over me and ice packets between my legs and under my armpits. When I struggled to pull them out they placed them under me. I became so swollen that I looked like I was going to pop. They later added steroids to go with the antibiotics and this swelling only seemed to worsen. My liver and kidney functions continued to deteriorate and my breathing became very shallow.

About this time, my wife received a call late at night asking for permission to install a breathing tube and place me on a ventilator. The doctor informed her I was very sick and it might be wise to notify all the family. The next morning, when everyone arrived at the hospital, my wife went to my room and saw an empty bed. Fearing the worst, she panicked and was quickly told by a nurse that I had been moved to another room. My liver enzymes and kidney function continued to deteriorate and I was receiving bags and bags of platelets-(Platelets, also called “thrombocytes”, are blood cells whose function (along with the coagulation factors) is to stop bleeding); my body was no longer producing them on its own.

The next night, Linn received a call asking for permission to place me on kidney dialysis as the doctor informed her that my kidneys were failing. He opined that without this being done quickly, I would die. I was scheduled to have a tube inserted in my groin at 10am the next morning to route my blood through the dialysis machine. Arriving early the next morning, my wife and sister began to inquire when the surgery would be done. “The surgeon is on the way…he is just now doing another operation,” they were assured. This persisted all day even as my condition continued to deteriorate. My sister Libbi, who is a tough determined “get it done now” kind of a person, much like me, became more and more agitated and began to confront the myriad of doctors who came and went, none of whom seemed to be in charge or capable of taking the necessary action. Finally, after a shouting match between my sister and several residents, with my wife imploring them in the background that I was too good a man to let die, some phone calls were made. Also during this time, the cardiologist, who my son Kyle nicknamed Dr. Doom, came by and began shaking his head and saying how very badly I was doing. He advised that we gather the family as I would probably not live through the night. My 4 children formed in a weeping group hug and my sister Libbi and Linn hung on each other and cried.

I now believe that the lack of urgency about getting a surgeon to insert the tube may have been that, as was later relayed to me by a member of the hospital staff, I was rated “least survivable” of the 15 patients in the ICU. Why hurry up on a guy who is going to die anyway?

Finally, a surgeon showed up that evening. I was still alive but too weak to move to an operating room so he inserted the tube into my groin in my room (after telling my family that there was a good chance that it wouldn’t hold and that I would probably “bleed out”).

The tube held, and several nurses then hooked me up to the dialysis machine, which began to make a whirring sound as it took the blood from me and filtered it, 24 hours a day, for the next several days

My daughters left to go to our house and get some sleep. They all put on my ubiquitous Air Force Academy sweatshirts for the symbolic closeness that manifested itself in the colors, insignia and the distant trace of my body smells. They also listened to my old voice messages. I remember searching through my fathers old letters to me after he died; you want to grasp on to some connection to a loved one when they leave, some remembrance that provides fleeting hope that at least a part of them is still here. Clothes, voice mails and letters are the often the best.

About this time they also began to administer drugs to keep my blood pressure up and pool blood near my vital organs. As this would restrict blood flow to my extremities, they warned Linn that I could lose some fingers, toes and possibly my right leg and left foot.

My daughters, all married and with children, were and are, wonderful beyond belief. They handled this time as best they could. Lisa and my son-in-law, Khe, sat on the beach nearby, held each other and cried, while Lisa lamented the fact they I would never know the baby she was carrying. My daughter Elaine, when she wasn’t by my bedside, crouched on the floor holding her knees with her face buried and hidden by her hoodie. My oldest daughter Nina spent much of the time holding my hand and crying. My daughter Lisa later told me that “Nina was sobbing about not having had a good conversation with you that last time you guys talked.” ( I guess the lesson there is to always be prepared for the loss of a loved one.) Kyle was quiet, stoic; it was surprising to others how courageously he could sit by my bedside for hours on end.

The next morning, my family arrived and the nurse said, “blood pressure holding up. Keep thinking positive thoughts.” Kyle squeezed my hand and I squeezed back. “Yea, there you are,” he said. Several of the nurses and some of the younger doctors began to speak somewhat optimistically for the first time. (but not Dr. Doom who kept insisting I was in grave danger- I guess he didn’t want to be blamed for anything by grieving relatives if I died/)

After two days of dialysis, my liver enzymes and kidney function began to improve and my body was again producing its own platelets. I started to open both eyes and look around while moving my mouth silently. I was described as looking scared and confused. As my daughter Lisa remembers, “It was clear that you were in there and trapped and trying to get out.”

They removed the dialysis and two days later removed the ventilator. My memories are vague of the removal. I recall feeling outside my body and peering down into my lungs as they removed it. Having been on it for almost two weeks, my automatic breathing response was impaired and I would awake from dozing gasping for breath. This condition continued for several weeks and then abated.

In the days that followed, I hallucinated from the drugs they continued to give me. Though conscious, I felt sure I was dying.

Vomiting bile, shitting on myself, feeling like I had been drawn and quartered, talking nonsense; I began to recover. My children, older brother and sister actually began to laugh at my description of what I saw when I was hallucinating. My son recalls asking me, “what did you see or dream about”? My apparent response was “Flying and having sex with your Mom…what else”? As people wandered in, my son would ask me “do you know who this is?” I could not come up with my brother Tommy’s name but could recall his self anointed nom de guerre “Lou,” which he had used when younger. So, I said,”that’s Lou”. My brother later said that he didn’t think anyone else remembered that name.

I also failed my first cognitive test. Even though I was a daily reader of the NY Times and weekly reader of the Economist, I could not correctly identify the current president of the United States. After a struggle, I said “Bush?” This resulted in the ordering of one of 2 or 3 brain MRIs I was to endure over the next six months as they searched (fruitlessly thank god) for evidence of cognitive impairment.

I cannot stress this enough, at this hospital, and many like it, specialists wander in and out and NO ONE seems to be in charge. They often asked me what the last doctor said or who had prescribed what was in my IV. How was I supposed to remember in my awful condition? The most outrageous may have been the doctors who, upon seeing my swollen legs and testicles from all the steroids would ask me, “Are you always swollen like this?” Sometimes I answered sarcastically, yes, even somewhat angrily, with remarks like, “don’t you look at any charts or read anything about what I was like before this and what I’ve been through?” This resulted in one of them writing that I was “depressed” and in my waking up to an Indian psychiatrist; young, sharp featured in a way that kept her from any sort of attractiveness, earnest in an annoying way and who spoke a form of English that sounded mostly Hindi. “I think you are depressed she said….that is what the chart says.” She wanted to put me on SSRIs or another form of happiness medication. I informed her that I was not depressed, I was fighting to get better and she was making me even more angry by not understanding what a frustrating experience she and her doctors were putting me through.

Shouldn’t I be more grateful to the doctors for curing me of septic shock? I don’t think they actually did. What they did do, and I am grateful for, was keep me alive while the pathogen (which was never identified) rampaged through my body during which time my body attempted to defend itself by basically shutting down.

After two weeks, frail and minus 30 pounds, I was sent to a rehab facility by ambulance. My daughter Nina sat next to my stretcher. “Do you want me to sit in the back with you?” she had asked. I felt such gratitude at her presence and was keenly aware that the role of father and daughter had been reversed; I was now the weak one needing protection and comfort and she was providing it.

I did not lose any limbs, but ended up with just some black toes and a black ear, none of which required surgery and all of which were to heal completely.

I continued to recover at this facility for 10 days before being allowed to go home.

I was unfortunately soon to discover, that the fight was not yet over. Chapter two of my sojourn began several weeks after I returned home and began to develop very bad back pain, which turned into excruciating pain. Initially misdiagnosed as a pulled muscle or standard back pain from being prone so long. The doctors eventually discovered that I had developed osteomylitis in my spine (not uncommon after sepsis); only mine was not bacterial, it was a candida fungal infection bought on by the huge amounts of the powerful antibiotic vancomycin and the added steroids given to me when I was in septic shock. (Sepsis and Fungal Infections, Sepsis and Impaired Immune System)

I continued to lose weight and deteriorate at home while I endured four months of useless rehabilitation (where I spent most of my time vomiting), a failed spinal operation in an attempt to remove the fungal infection (they left a screw lose, which allowed it to hit a nerve in my back and cause me even worse excruciating pain) and deterioration from more vomiting, hiccups (yes continuous violent hiccups, especially at night that were described by my wife as sounding like a barking or baying dog; while I slept in a chair-the only place I could try and sleep due to the agonizing pain.), weight loss and general physical deterioration. All the while I persisted in going to physical rehab, trying to walk despite overwhelming pain in my back and, yes, answering a plethora of calls from the insurance company. (This part of the experience is one of the worst. You are not yet well and the medical establishment’s billing department now begins to remind you that their patience with your insurance company has its limits.

Medical care, like most of life, is capricious.

After many months of suffering, sleeplessness and more weight loss (I began to look like a cadaver), I was saved by a wonderful infectious disease doctor in New Jersey, who realized all along that I had a fungal and not a bacterial infection, and a brilliant neurosurgeon at the University of Virginia who did an 8-hour operation consisting of extensive debridement (medical removal of dead, damaged, or infected tissue to improve the healing potential of the remaining healthy tissue), followed by spinal fusion of my lower thorax vertebrae and the insertion of titanium rods, screws and a cage. He later told me with his index and thumb separated about an inch, that I was “this close to dying” when he began the surgery.

My wife and I spent a month recovering at the wonderful University of Virginia Hospital. At my weakest point, we did a Facetime with my daughters who were using our house in NJ for a baby shower for Lisa, my youngest. I was told later by Lisa that “we were all shocked and sad by how awful you looked…Elaine broke into tears after we hung up.”

After a month in the hospital, where I endured some powerful antifugals (amphotericin was one- makes you vomit as bad as any chemotherapy), I returned home, skinny, weak, somewhat cognitively impaired and began a recovery from what had been a six-month ordeal.

My survival was due, more than anything else to the love and care of my wife Linn. Every day and every night she was there for me, helping me walk, making sure I took my medications, feeding me what I could get down, taking me to the hospital and doing her best to keep my morale up.

You will at first be so happy to be alive that the things that bothered you before….money, screaming children on airplanes, your wife’s habit of procrastinating on moving her “valuable” stuff out of the garage, Donald Trump, bloviators on Fox News and people that drive slowly in the left lane, won’t bother you at first. After all, who cares….you’re glad just to be living. But slowly, as you recover, you may tend to slip back into becoming the same asshole you were before you cheated death. Having been guilty of this, I find it is important to recount the experience with my loved ones who witnessed it. This will keep it fresh.

I have now, one year later (thanks to a renewed appetite and the rediscovery of my gym rat origins), gained back most of the 60 pounds I lost in total and most of the muscle mass. I have been diligent (every day) but careful (spinal fusion really limits one’s mobility) with my gym workouts and try to eat right and swim one half of a mile each day. I also have recovered mentally both intelligence wise and, perhaps more importantly, regained my sense of humor. I also remarried my ex wife on our 40th anniversary.