My Adventures in Pain and Life - 2019

My hideously ugly back. Now with railroad tracks. This is the only photo that I intentionally tried to save, because it is indicative (to me) of the whole experience. Also, I have permanent scars from my first back infection, where I put ice directly onto my back to ease the pain, causing my skin to be permanently burned and scarred! Stupid move, Tim!

CAUTION: Sue and I are "tag teamers' in raising our kids, work around the house, our law firm etc. If one of us is good at it, the other person does something else. This is the case here. I was struggling through some fairly brutal experiences in pain, trying to keep my wits about me and survive. Sue took on all the doctors and nurses and medications and treatments. As a first notch lawyer, Sue's legal skills matched perfectly with her skill as an advocate to monitor the medical treatment I received. Note also that I intentionally left many horrific details of this story out.

 

During this whole ordeal, Sue spent almost every night in my hospital room. On many nights, I would have her sleep in my hospital bed for a few hours while I sat up in a chair, then we switched and she spent the rest of the night sitting in the uncomfortable folding chair next to the bed while I tried to sleep in the hospital bed. Yes, the intensive care does not want spouses sleeping there, as no bed or even a comfortable chair was ever an option for us. I'm sure Sue was even more tired than me through this whole ordeal - she sure looked that way!

As of 6/30/2020, I was officially"cured", and I do not want to remember any of these horrific and painful experiences. Sadly, Sue may not be able to say good bye to them as efficiently as I will be. I cannot imagine what it must have been like to be told that your husband was likely to die right in front of your eyes. The first 2 times it happened, they just told me that I was likely to die "today". The next two times, the doctors looked us in the eye, and said there was only a small chance (20% if I recall correctly) that I would be alive tomorrow. Sue insists that same conversation also occurred a 3rd time on 9/26/2019, my 60th birthday, though I do not remember that one (Happy Birthday to me - maybe they slipped me some morphine or some other "wonder drug" so I wouldn't remember?).

The mountain bike ride that started it all. ABOVE: This is a photo of my friend on the mountain bike ride on the very day in the Irish Hills of SLO where I crashed (flew right over the handle bars - because unbeknownst to me, all the air had leaked out of my front shock), and the doctors believed the infected cut on my elbow got the staff infection started in my bloodstream, which necessitated my emergency back surgery, and started my "6 weeks of Adventures in Pain". From now on, I will buy and wear elbow pads when I mountain bike ride. F*** that staff infection.

INTRODUCTION: I'll confess. I spent most of the last 6 weeks in the hospital (back and forth between Sierra and French) with 2 of those weeks in intensive care. The medical staff indicated too many times to count that I might not make it through the day.

In my blood test today 10/8/2019, my hemoglobin shot up from 7 to a 10, which is HUGE, and in my joy, I decided to let the story out onto FB, where I still had many friends left to inform of this alternate world which I lived in for 6 weeks.

Anyways, looks like I may live. Thank G*D. New lease on life. Lost 25 pounds in the process, which I'll take. Thanks for everyone's support which I can NEVER repay. Larger-than-life thanks to my wife Sue and Dr. Ron, as well as the 100's of plasma donors across the country, plus the amazing doctors and nurses who diligently kept me alive at all hours of the day and night. Its not over yet, but its going in the right direction. BTW, I am now at home - no more hospitals for me!
Thanks to everyone in advance for your kind words, assuming you are glad I'm still alive. MY LONG AND WINDING MEDICAL ROAD: The pharmacist appeared to completely miss an undetected contraindication between 2 medications I was taking (never take these 2 medications together if you want to live). I always thought the pharmacists were supposed to catch these things, but we may have just signed the thing where we declined to be counseled - I just have no idea. The new prescription occurred about 1 month before my Adventures in Pain began. The culprits? Zoloft (depression medication) and Imitrex (migraine medication). Their combination created "heart attack" like symptoms that caused me to go to the ER at French (specializing in their coronary treatment center) several times with what appeared to be a massive heart attack. Nope. The contraindication of the 2 medications created massive chest pains, and profuse sweating, but no heart attack (you could have fooled me). A stress test brought my heart beat to the max for my age (162 beats per minutes) and imaging showed a flawless heart function with no blockages whatsoever - good news. Still scared the F out of me.
A few days later, I had an emerging back pain that turned excruciating over the next few days, and required me to be put under to deal with the uncontainable pain. The 2 best back surgeons in SLO county determined that I had a staff infection in my spine, and performed emergency back surgery to save my life (in the middle of the night). They told the staff that nobody was going home tonight, and that they had to operate on me now because I would be dead tomorrow. The back surgeons had to crack open every infected vertebra in my spine, and flush out the staff infection, performing a laminectormy on each one. The doctor noted that I have massive vertebra that required the largest spinal bone tools in their arsenal. While they were in there, they performed spinal stenosis treatment on my lower lumber L1-L5, and for that I was grateful. I no longer have any lower back pain whatsoever. Yay! A twofer there. Due to the extensive nature of the surgery, I stayed at Sierra Vista hospital for 9 days in recovery from my back surgery (see photo of beautiful new scar - I converted the image to black and white because the photo was so hideous). Turns out my "Adventures in Pain" was just beginning. While at Sierra Vista, I had a "PIC LINE" installed in my right arm in order for Sue to give my an anti-biotic IV drip 3 times a day at home to combat the staff inspection, and I finally got to go home after 9 days of fun at Sierra Vista Hospital. For the first week, the staff infection anti-biotic appeared to be working against the infection, and I experienced a slow and painful but steady recovery. Until I didn't. Apparently, the antibiotic that was doing such a great job on the staff infection, within the course of 4 or 5 days, turned on me and destroyed all my internal organs, causing my kidney and liver to fail. In addition, my red blood cells and white blood cells dropped to zero, my hemoglobin dropped to zero, and my platelets went from 300 to 4 in a matter of days. This is what death looks like, several of the doctors all told me. Thank G*D for our dear friend and local SLO General Practitioner and dear friend, who we reached out to during this crisis when our other doctors would not take our phone calls. She took immediate action, gave me a blood test, and at 11pm at night got the test back, told me I was about to die and we should go immediately to the Emergency Room. We went to Sierra Vista because they had all my lab data from my recent back surgery (we should have gone directly to French Hospital, as it turns out - what do we know?).

We may really know for sure what precipitated what. By this time, too many things were crashing all at once to understand all the interactions. As an example, when I was dropped into the Sierra Vista ER in the middle of the night after I was told that I was about to die, the staff took 17 samples of my blood from my left forearm in the first hour I was there (I had the PICC line in my right arm so that could not be used for clean blood samples). They wanted 17 separate "sticks" from 17 separate sources, so they could get accurate blood samples for the blood tests. How is it that there were 17 different things in my blood to test - I have no idea!
In the middle of that night Sierra Vista called French Hospital, and told them to get their their dialysis team out of bed and into the hospital immediately, as I was about to die without an immediate concentrated red blood cell dump, and plasma infusion. They initially wanted to wait until the next day, and I overheard the folks at Sierra screaming that was not an option, and to get on the phone and get your team into the hospital now. To their credit, they did. It turned out that getting enough plasma for a transfusion took several hours, as it had to be collected from storage around the county and the state. They installed a type of PIC line that went from my shoulder and into my carotid artery and directly into my heart. My first transfusion started at about 4am, lasted five hours, and saved my life.

French Hospital has special transfusion equipment that, thanks to the amazing, committed, and skilled transfusion team of Lee, Ben, and Mike, as well as my dedicated nurse for that evening, Ryan. I LOVE YOU GUYS - YOU DID AMAZING WORK WITH GREAT HUMOR AND COMFORT - I WISH YOU WERE MY FRIENDS FOR LIFE, BECAUSE I OWE YOU MY LIFE. In fact, by the time Ben had finished my first plasma transfusion, he was well past 24 hours into his shift - far beyond the call of duty, IMHO. He humbly shrugged it off. Turns out that night was the first of 9 days of transfusions, which were long, painful, and unpleasant in more ways than I can count. Profuse shaking, insane red rash over my entire body and a bit of psychological torture as well. A 6 inch pile of blankets over my body did not diminish the shaking one iota. The process consisted of pumping all the liquid out of my body, removing all the "bad" plasma from my blood and throwing it away, and inserting the plasma from dozens of anonymous donors into my body - like a night of Dawn of the Dead. Each transfusion consisted of me receiving 4.5 to 7 liters of the plasma from strangers who cared enough to donate so that people like me would live. Amazing. I owe these plasma donors a debt of gratitude that I will never be able to pay back, but I will try. You my friends, will be hit up by me for plasma donations for the rest of my natural life - no complaining please. I will make it my personal life's goal that the next person that needs plasma like me or they will die is DAMN WELL GOING TO GET IT - JUST LIKE I DID. This, my friends, is what makes America great. We care about each other, even though we don't even know the people we are saving.

ABOVE: In intensive care, you have your own private room, and at French that means you can have your dog for company. Go figure. Theo spent the better part of 3 days with me. Then I dispatched him home, the the IC is a miserable place for dogs as well as humans.

During 2 weeks in Intensive Care at French Hospital, we tapped out all of the plasma in California in my first 3 infusions, and the subsequent 6 infusions were done with plasma first collected from the western United States, and by the end, we were receiving Plasma from the east coast, including New Jersey in one instance. One night it looked like I would miss my treatment, until we got an airlift of plasma at 8pm that apparently came in from the Airport. That was long night of fun! Am I grateful for these anonymous donors - you bet I am!

During each day at French Hospital, the dedicated team or nurses and doctors were huddling every day in my room, trying to figure out how to keep me alive for another day. We described it like a game of JENGA - you have to pull the pieces out in the right order or the tower (that's me) collapses. The doctors were calling on their colleagues all around the state and country to get advise for how to proceed with the medical conditions I had that THAT THEY HAD NEVER SEEN IN THIS COMBINATION BEFORE - they had never had so many organ, tissue, and blood poisoning failures all at the same time.

The French Hospital staff doctors commitment was complete. I can't tell you how many times, in the middle of the night, my hematologist, or infectious dissease specialist, or hospitogist or other doctors that were working my case or even doctors we had never even met or heard of before - would wander into my room, and start to discuss new ideas they were considering for treating the many conditions that were all wrong in me at the same time. Bizarrely, sometimes they were examining me into the early hours of the morning.

ABOVE: Man's best friend.

On 5 separate days (Sue believes), I was told I was unlikely to live to the next day. The doctors believed the only reason I did not die was because I happened to be very fit. I was in the middle of "balls to the wall" training for another shot at the Lonesome Miner Trail / Beverage Death March backpack in the Inyo Mountains in November 2019 (5,000 feet of elevation gain on average per day for a week, including 2 days over 6,000 feet of elevation gain with full packs), plus a 2 week diving and hiking trip to Catalina on our boat, plus a week with my dive buddies for my 60th birthday to the Turks and Caicos. All cancelled, of course. But I was swimming with Scuba fins at the pool, breath-hold diving at Kennedy Salt Water pool, mountain biking, weight lifting, and hustling a 60 pound pack up Bishop Peak. All good survival conditions for me, apparently. As an interesting side note, I got to spend my 60th birthday in intensive care (September 26, 1959), as well as our 31st anniversary, also in intensive care (October 2, 1988). Some fun. Not much of a celebration - we barely noted it, though the nursing staffing kindly helped us celebrate. A special note to my wife Sue, who stayed on top of every aspect of my treatment, and never let any of the doctors off the hook, or slip into ambiguity (or move on to other patients, not that they were going to). Her legal skills served her well, as she brilliantly researched and understood every aspect of my treatment (which I STILL don't understand, and don't really want to!). Several times, the doctors curtly inquired about her medical background, as she kept up with them in every aspect of every twist and turn the strategy of my treatment. In each case, she coyly replied that she read it on the internet (I don't think they were pleased with that answer, but I laughed quietly to myself every time!). Our lifelong friend and pediatric oncologist Dr. Ron was in Washington DC on the other end of our cell phone, available at a moments notice to keep up with my diagnosis and treatment. Some people are just brilliant, and having them in your court is no small miracle. Every time we called Dr. Ron, he dropped what he was doing, sometimes for hours, and analyzed my case, spending hours looking at our various test results, consulting with his brilliant fellow medical researchers in DC, and sending back his recommendations. In all cases, Dr. Ron's recommendations were spot on and eventually adopted by the hospital staff as the "final decision" for that hour or that day. Sue would coyly float Ron's suggestions to the staff doctors (never revealing that we were getting fed this information from another Doctor on the east coast), and they would slowly over the course of a few hours come to a consensus and in all cases adopted Dr. Rons hours earlier recommendations during the critical first few days of my treatment. My favorite quote of this ordeal. When we thanked Ron profusely for his commitment to my case, he replied: "I WANT TO KEEP MY FRIEND TIM ALIVE". Oh to be someone who can save lives - I wonder what that feels like. This statement humbles me and makes me cry - now I know how the homeless people feel when somebody cares about them when they could just "move on" (I don't have the highest self esteem!). Ron is so humble and will never take credit for any of this, but I am quite sure I would not be alive today without him and his massive medical brain that kept me alive. Its good to know that there are people out there that are so much smarter than me (Sue's smarter than me and could probably even give Dr. Ron a run for his money!).

MORE FUN: During the middle of my transfusion period, I appeared to have a stroke. That's certainly what I thought it was, and what the medical staff thought it was. But after much brain testing and scanning, it was determined not to be a stroke, but something VERY similar in appearance (Sue knows what it is called - I'm happy to just know that it was not a stroke!). For about 3 days, my pseudo-stroke symptoms consisted of not being able to speak, read, type, write, email, or watch TV (due to my eyesight going to shit all at once). Yes, that was a little disturbing too. I am still suffering from some of the cognitive disfunction of this condition, though they tell me this "should" resolve itself as well.

After 9 days of infusions, I was moved out of intensive care and was moved into in a regular hospital room for observation before release. I had the random surprise honor of sharing a room with longtime friend Ed T., who is having his own medical challenges. We pray daily for Ed and his wonderful family that he find solutions to his current medical conditions. We shared a room for 4 days with Ed, and Sue and I went to great lengths to be there for Ed at all hours of the day and night, as by then he was having an even harder time than I was. During this period, I was tested every day for 3 or 4 days to make sure my blood test results stabilized before they sent me home.

I'm not out of the woods yet. I am still on new and different antibiotics (and the fear that they could turn on me again!), as well as a massive host of drugs that I would rather not be taking. After departure from the hospital, we insisted on comprehensive monitoring, and I am getting a daily blood test for the next month, so we can detect another crash before it begins to kill me. As I started this post, I can gleefully report that my hemoglobin fortuitously skyrocketed from level 7 to level 10.2 on 10/8/2019 (level 11 is normal for me) in 1 day, so I am hopeful.

My other numbers are in the low end of "normal" range, although we know my normal range is about double what they are now. Example: normally (prior to this medical disaster), my platelet count is around 300. Right now my platelet count is about 150, which is in a normal range for an average person, just not for me. Praying that over the next few months, my blood test results revert to my normal range, so that I can go back to "normal activities" - time will tell.

By the way, this experience changed me in fundamental ways, definitely for the better, and hopefully for the rest of my life. I describe it as a "greater clarity of thought and a purity of purpose" than I had before, and I hope it lasts for the rest of my lifetime. I'm sure it comes as no surprise that I am grateful for the support of so many people, who I found out believe in me, and somehow think I am somebody special (I'm too humble to think such things - I'm not special). God-affirming thanks to the Mission SLO Docents who provided so much spiritual support to me throughout this ordeal, and whom I cannot thank enough. Plus, my special friends, and you know who you are. Nobody towers above my wife Sue, who I have no doubt was the ultimate power for keeping me alive. Somehow, she didn't crack, watching multiple times when she expected that I would die in front of her eyes.

Interestingly, while on the verge of death, I never panicked, I never felt sad, I just looked death in the face with a bit of amusement. I figured if it was my time to go, I had 60 good years (exactly, as it turns out), though I wanted more, of course (looks like I'll get some more). Where did I find such courage? It didn't come from within me that's for sure. I felt ready to meet death because I had my wife Sue, the love of my life (MRFL), continuously by my side, as she has been since we met when she was 19 years old as a student government rep and Poly Sci major at UCLA so long ago. We have been through so much together, and we continue to be as one forever.

Tim out. Note that I have left out most of the medical jargon of my condition and treatment. I'll leave it to my doctors to write up the technical report on this one-in-a-million (their words) combination of medical conditions that they rose to the challenge to treat and keep me alive.