Post-Transplant thoughts #mycousindave

My cousin Dave and I email frequently. Usually sending each other random Seinfeld trivia questions, discussing recent movies or television shows, or music. He was the first one to really introduce me to the Beatles when I was about 10. He put late-1970’s giant headphones on me and put on “Revolution 9” from the White Album and he and his brother went in the corner and giggled as my 10-year-old brain was exposed to an onslaught of the trippiest weirdest Beatles song ever recorded.

Dave hit me, rather out of the blue, with a somewhat serious question about my recent experience of getting a liver transplant and the months leading up to it. Here’s my response (please feel free to listen to Revolution 9 while you read…it’s a fairly good audio accompaniment to how I felt during the crazy of the last year.

Cousin Dave: “In all your dealings with the Liver situation John, What period was THE MOST painful of the entire ordeal so far?”

Physically painful?  Definitely the first time trying to stand up out of bed post surgery. They made me do that on day 2. It took two nurses plus my sister Cara to get me on my feet. It HURT. My entire core, many of the muscles in my abdomen had been severed. After standing for a minute, I was spent. The post-surgery pain was significant and I was on pain medications for a couple weeks post-surgery.

Getting pumped with lots of stuff!

Pre-surgery the worst physical pain were the paracentesis/thoracentesis procedures, where they poked a needle into my abdomen or my upper back and sucked out extra fluid that had built up. Those were not fun and had many gallons of excess fluid drained over the course of many months.

In the ICU after my first episode of hepatic encephalopathy

But more than the physical pain, I’d say the metal pain was much more difficult. Dealing with the daily roller coaster of emotions of my mortality, dealing with the ups and downs of my health…one day I could be fine and then a few hours later be rushed to the hospital in an ambulance. The frustration of feeling helpless and hopeless, that I couldn’t trust my own brain to tell me when I was not thinking clearly (I feel like I can empathize with people suffering with Alzheimer’s much more now) but mostly the burden of the fear and pain I knew my family and friends were going through. All of that weighed heavily and still does.

Cousin Dave: And also, What period was THE Most Joyful of the whole thing?

How how so many people reached out, even people I barely knew who would tell me how I had made an impression on them. Like one girl I was facebook friends with (who I honestly don’t remember meeting), told me that she met me in a bar and we started chatting and I mentioned I played piano. And she said she had always wanted to play but never learned and she regretted that. I told her that it’s never too late to learn. And apparently she got home and started taking lessons and thanked me. You never know how little things you do and say can affect other people’s lives.

Or another girl name Gabriella, again a Facebook acquaintance, who had read when I posted that I was afraid I was going to miss a show. I had tickets to see Patton Oswalt at the Hard Rock live but I was still in the hospital the morning of the show. Thanks to the hustle of a very caring and resourceful nurse, she wrangled all my doctors on the phone on a Saturday and was able to get me discharged, but I didn’t have a chance to post until after the show that I made it just in time. After I got home I had a message from Patton Oswalt himself in my inbox because Gabriella had messaged him a told him I was sick.

There were so many moments like that, like the Patton Oswalt video, friends sending me funny messages or videos, everyone coming to a dinner at my favorite restaurant…like the week before the Covid lockdown began…the many friends who visited me, brought me groceries or tasty home cooked meals.

And I cherish how much closer I have gotten with my family who were all there the whole time. I had really come to grips that this might be the end and so I began to cherish every moment and opportunity that I had with every friend and loved one I could. I made amends with many former friends, forged new ones, I found a newly optimistic outlook on life. I really feel like I almost got to
experience my own funeral in many ways, and now I get a whole second chance at life.

Cousin Dave: Was that photo actually you at Doc’s\Transplant Place today?

Yes, that is a selfie I took in the waiting room of my transplant clinic this morning. Received all thumbs up from my doctor. Reduced more of my meds and it was my last visit with my transplant surgeon. Next visit I go back to my pre-transplant doctor.

Growing New Livers in a Lab #livertransplant

Assembly and Function of a Bioengineered Human Liver for Transplantation Generated Solely from
Induced Pluripotent Stem Cells

That’s the fancy title of a new report by Kazuki Takeishi and other scientists who have successfully created miniature human livers from stem cells and put them into mice. I won’t get into the details, mostly because I don’t understand them, but here’s a picture:

A picture is worth a 1000 liver transplants.

You can read the very technical research paper here on Growing Mini Livers

About 17,000 people are currently waiting for a liver transplant in the United States. This number greatly exceeds the amount of available, donated by deceased donors. Meanwhile, organ transplants can be prohibitively expensive. In 2017, patients receiving a liver transplant were billed an estimated $812,500. That includes pre and post-op care as well as immunosuppressant drugs to keep people’s bodies from rejecting the transplanted organ.

I am one of those liver transplant recipients. My donor passed away on May 12th 2020, and in the early hours of May 13th, my dying liver was removed and replaced with the donor’s healthy liver in an operation that lasted about 4 hours. That was exactly three weeks ago, but I could have been much more unlucky. Each year an estimated 2000 people die while on the national transplant list…there are just not enough donated livers to keep up with demand. And you can’t live without a functioning liver…it is one of the most important organs and supports over 500 key body functions.

While the science isn’t quite ready for prime-time, scientists expect that within 10 years, liver donations will be a thing of the past.

You can read a much less science-y version of the story here: Lab Grown Human Mini Livers

The Voicemail I Desperately Needed. #livertransplant

As I write this, I consider myself very fortunate. I was diagnosed with End-Stage Liver Disease in October of 2019 and spent the past six months in and out of the hospital, in the ICU having life-extending procedures and taking drugs to keep my damaged liver from completely shutting down. I was officially placed on the National Donor list in late February, a list with 16000+ other transplant candidates and a list in which 2000+ hopefuls sadly pass away before finding the right organ.

So I waited, battling the symptoms that made me weak and sick, draining fluid from my abdomen and chest cavities, suffering periodic life-threatening ammonia spikes that could cause me to become unconscious without warning, drops in hemoglobin, anemia, kidney failure, internal bleeding…The symptoms kept getting worse and tested my resolve many times.

But then at about 10:30 pm, Vanessa, my Liver Transplant Coordinator left me this message:

I was beside myself and shaking with this news. I was scared, but this was what I was waiting for. My buddy Jack came and picked me up and we drove to Advent and checked into pre-op (called the “Rapid In/Out” or “RIO:” department. Shower, Chest X-Ray, Blood tests, Covid-test, wait, wait, wait.

Around 7am the surgeon came in and said they were looking at a noon-ish time for surgery. He said he had not seen the donor liver yet but he needed to see it before they brought me in to make sure it was viable.

Noon turned into 2pm. 2pm turned into 4pm. At 4 pm a nurse came in and I did the final prep for surgery. Compression socks, hair net, enema…at about 4:50 the surgeon came in and, in a very somber tone said that he had finally seen the donor liver and it was not viable. It was “too fatty” and he couldn’t transplant it.

Devastation. I was SO ready and this just felt like the wind was taken out of my sails. I went back home in a daze and slept. I barely got out of bed the next couple of days. I was in a daze, but I knew this was a possibility. And so again I waited.

Fortunately I only had to wait a few days and I got another call. On Wednesday, May 13th I had liver transplant surgery. I went under about 12:30 am and woke up about 8 hours later in the post-transplant ICU. In less than 24 hours I was in a normal recovery room and eating solid foods.

Post Liver Transplant Surgery with my sister Cara

With 48 hours I was standing and walking with a walker and within 5 days I was discharged from the hospital, walking out on my own two feet. It was amazing and my recovery has been quite smooth. My transplant surgeon has already reduced some of my meds and, after a couple weeks of staying with my parents, I am happy to be back in my own home and sleeping in my own bed.

I have a weekly blood test and visit with my doctor, but so far all my lab results have been good. I’m eating well and all of the symptoms of my disease have disappeared. I have a new life!

The downside of saying “Get Well Soon”

I never really gave it much thought until facing my own terminal illness. The phrase “Get Well Soon”…it’s everywhere, embedded in the cultural consciousness through greeting cards, balloons and cakes. Sounds great, right?

Here’s why it fails:

As someone with a terminal disease, the phrase can feel flat and almost robotic. I know anytime someone posts that phrase on my page, I would hope they would take the time to say something a little more and think about an alternative phrase. Some suggestions:

  • Sending you healing vibes
  • You are in our thoughts
  • praying for you
  • let me know if there is anything I can do, please let me know
  • I made a donation on your behalf
  • (hopefully you get some of your own ideas out of these suggestions)

This is not to say the intent is missing as anyone who has dealt with a life-threatening illness knows, it’s a difficult thing to deal with, but perhaps take a moment to put some more thought, relay a fond story or memory, say something special that shows they are important.

For more ways to donate to liver transplant patients, tax-free click here

Out of the Oven and into the Fire

I was discharged from my recent visit to the ICU. One of the more disturbing side-effects of my liver disease is the danger of ammonia building up to near lethal levels, causing my brain to shut down and putting me into an “altered state” (a somewhat nicer sounding medical term for Hepatic Encephalopathy).

Hepatic Encephalopathy, sometimes referred to as portosystemic encephalopathy or PSE, is a condition that causes temporary worsening of brain function in people with advanced liver disease. When your liver is damaged it can no longer remove toxic substances from your blood. These toxins build up and can travel through your body until they reach your brain, causing mental and physical symptoms of HE.

I have had 3-4 instances of HE occur (that I know of) since October of 2019…fortunately I have had others around me that know the signs (I can’t do simple math, memory loss, paranoid confusion). After the last major incident which occurred on the morning of Thanksgiving last year, it took four adults to get me into a car to go to the hospital…that’s how bad it got. I woke up in the ICU with a breathing tube respirator and a catheter and connected to all of the machines they possibly had (including the one that goes BING!) #montypythonmeaningoflife

I take meds every day in the morning and at night to help my body flush out the toxins before they build up, but sometimes they just do and that’s what happened a week ago. I have set up a simple text messaging where I text close friends and family twice a day…and if I don’t text by 9am AND 9pm, phone calls start coming in, and I continue to fail to respond, someone will bang on my door…which happened last Wednesday morning.

I failed to send my 9am text message…my mother texted the group asking if anyone nearby could stop in and check on me. My friend Josh Egan, who lives just a few blocks away, found me in my bed, unresponsive. Another friend, Jack DeMarco, arrived a few minutes later, EMT was called as my heart rate was dangerously low…I was in imminent danger. They rushed me to ORMC Trauma and then later at Advent ICU after I was stable enough to transport. I remember none of this…other than waking up very groggy and slowly in the Advent ICU. It was early on Friday…I had no idea where I was but I was pretty certain I was in the hospital. My mother showed up a few hours later and by the end of the day I was transferred out of the ICU and into a normal hospital room at Advent, where they kept me for a few more nights to make sure I was good to go.

Now I’m back home, thankful as ever for the love and support of my friends and family for helping me get through yet another hurdle in this fight for my life.

I started this by saying I was out of the oven and into the fire… well, now to complicate my already complicated mess, is the CoronaVirus. My immune system is already compromised by liver disease AND I have asthma, AND it’s the peak of allergy season in Florida. TRIPLE THREAT!

Hopefully you are keeping healthy and listening to sound medical advice and not “hunches” or spreading false information. I am still on the liver transplant list, and could get the call at any moment. My specialist at the Advent Transplant Institute assures me that they will be testing every liver donor for exposure to Coronavirus and they will be rejected if they test positive. Transplants are still happening, but it is a fluid situation that parameters are changing every day as new medical information comes in. I am still optimistic that together we can beat this. I feel that seven years at Burning Man, learning things like “Radical Self Reliance” have helped prepare me in immeasurable ways (more about that in a future post).

For now, I’ll be home, self-quarantined and discovering new things about myself and what’s most important to the world around me.