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.

Living in Fear of COVID-19

Am I afraid? Yes.

I’ll admit it…I do live in fear. But I don’t think it’s the same kind fear as what the anti-mask crowd is calling “living in fear.”

I am afraid that if anyone I love or care about falls ill because of COVID-19 (or any highly communicable disease for that manner), that I won’t be able to be with them when they need comfort the most.

Having spent more time than I imagined in a hospital from March-May while waiting for a life-saving liver transplant, I know all too well how much having visitors helped keep my spirits up. Social media certainly helps, but there is nothing like being able to hold someone’s hand or hug them or just simply watch a movie together. To have someone bring me a McDonald’s Shamrock Shake or a Smoothie, drop off some comic books, some Twizzlers, Dinner from Maxines’s, play some guitar for me…anything from the outside world… helped.

The sterile environment of a hospital room can be a very lonely place.

And it’s a very scary place, especially because you’re there because you’re sick and not because you want to be. And despite having the best care and the most wonderful doctors and nurses, they can’t replace your friends and family.

When I first went to the hospital there were no limitations to who could visit me or even when. If someone didn’t get off work until 2am they could come see me in the middle of the night. I could have 4 people visit at the same time…the only limit was how many people could fit in the room and how many I had the energy for in any given day.

But as Covid-19 appeared, restrictions started happening. Visiting hours became limited as did the number of visitors. At one point it came down to one approved visitor per day and so I literally had to choose. But at least I still had a choice.

COVID patients don’t even have that luxury. They are prevented from having ANY visitors. Their interactions are limited to FaceTime or Zoom meetings or maybe a live visit through a glass window. They are at possibly the most vulnerable, helpless time of their life…possibly the end…and yet can not even find a tiny bit of comfort from the presence of the people they love.

That’s my fear. And any time I hear someone who mocks that fear by saying that we are acting out of “media-induced fear-mongering” or that “Covid is a hoax” or anything like that it just makes me sad. Because I know that they must not have ever experienced true loss or felt love. Theirs is a much more deep-rooted fear that I don’t and will never fully understand. Wear a damn mask!

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 Cell.com: 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!