I’m reading the CaringBridge journal of Heidi Stokes, a good friend of mine. The pain and suffering that Brad, her husband, endured while he was waiting for his second liver transplant is unfathomable to me. But he refused to give up and leave his family with nothing but memories of him. So he fought. And he suffered. And he won. It’s been close to two years since his transplant and he’s doing great.
Click here to read a magazine article about the inspiring Stokes family.
Click here to read an update I posted after Brad’s second liver transplant.
Here is an incredible and inspiring CaringBridge post Brad wrote on September 18, 2010. The fact that Brad is alive today is a testament to what Heidi wrote in an earlier post: “We don’t just believe in miracles, we depend on them!”
Just got back from three days at Mayo – my one year evaluation. Mostly good news: liver function – normal, blood pressure – 115/75, cholesterol (total) – 109, bone density – getting better (was osteoporotic, now osteopenic), hemoglobin – 11.9 (for years I hovered at 8.5 – 9.5), ECG – normal, ultrasound (all abdominal organs) – normal and unchanged, kidneys – …….kidneys?…….hello?…KIDNEYS?!… Well, they’re angry. They are mad about the anti-rejection drugs. They are protesting, but so far their actions are non-aggressive. A lot of grumbling (Creatine = 1.9, renal clearance=30), but so far, no dangerous uprising. Some liver transplant patients end up getting kidney transplants. I’m not there, but I can see the danger signs. We may reduce my anti-rejection drugs in 6 months, but obviously that carries the risk of liver rejection. It’s a delicate balance, but I’m not worried. There is much discussion and drug trials going on looking at alternate drugs and modified therapies to deal with this. I’ve been extremely fortunate that medical science has always been just slightly ahead of my need for it. When I was originally diagnosed with liver disease in the 80s, it was a fatal disease. Then liver transplantation ramped up and in 1994 I was (temporarily) cured. In 2000 when my disease came back, they hadn’t done 2nd transplants for my disease. 2009, I get a 2nd transplant. Our whole family seems to be right on the edge of medical advancement. If Heidi and I had been born 10 years earlier, neither of us would be here.
Which leads me to possibly the most dramatic part of my Mayo visit – seeing my surgeon, Dr. Julie Heimbach. Most of Mayo’s liver transplants are done by two surgeons – Dr. Rosen (my first transplant surgeon), and Dr. Heimbach. That’s hundreds of surgeries per year, yet they both know me and my situation intimately and can recall every detail of my surgeries. Coming to Mayo – despite it’s size – is like coming to “Cheers”! Heidi has told me, in as much detail as she can recall, the days and hours leading up to my transplant. I was first on the list, then I get better and was lower on the list, then my lung function crashed and I was off the list. Then hours later, I’m offered a liver (though it was labeled as “high risk”, a designation that later proved inaccurate). The label was applied because the donor was in prison, suggesting a high-risk lifestyle, a designation the CDC requires. But the donor was strong and healthy, and the liver was beautiful. So I asked Dr. Heimbach, would I have gotten a liver if this “high risk” liver hadn’t come along? She said “probably not”.
My condition was so bad, that they simply couldn’t roll the dice on me with a “good” liver. Donated organs are too precious to waste on someone who statistically shows virtually no chance of survival. I hugged and thanked Dr. Heimbach for taking a chance on me. As she was heading out the door, she said “I fought for you and I won!” She turned her back and put her fist in the air. I was stunned. Up until then, I wasn’t sure why I was off the list, then suddenly got a liver. A person had to be in prison, die of a massive cerebral hemorrhage, get designated as a high risk donor, THEN I could get it.
My next appointment was an ultrasound. The tech started talking about my transplant and mentioned spontaneously that Dr. Heimbach is known for taking risky cases. Huh? I thought. Interesting comment given I didn’t bring the subject up and I just saw her 20 minutes ago. So that kind of made sense out of Dr. Heimbach’s parting comment “I fought for you”. Later I asked my physician’s assistant why a surgeon would seek out tough cases? It could negatively skew their success statistics. She said simply “Dr. Heimbach has a big heart”. Later, my Hepatologist (Dr. Wiesner, who has been my doc for 16 years) commented, “many institutions don’t take high-risk organs.” So did Mayo make an exception in accepting this organ? Did they seek a high risk liver for me knowing that the organ transplantation criteria wouldn’t allow them to give me a “good’ liver? Every transplant case goes before a board of doctors (academic and practicing), surgeons, and other professionals for objective review. All I can guess is that I was a controversial case, but some of them fought for me.
This has all been spinning in my head the last few days, but even though there are still unanswered questions (that I will probably never know the answers to), another realization has emerged – the battle Heidi fought for me on the sidelines. Heidi is the one who guided my care from the beginning of this ordeal. She insisted on the best doctor (no residents) to perform the TIPS procedure at Abbott. After that, she pressed to have me transported to Mayo – something Abbott had never done and advised against due to my precarious health. Then when the team of doctors came in my room to tell her I was no longer a candidate for a liver, she launched into a last-ditch plea for them to not give up on me. We don’t know what ultimately tipped the scales in my favor. I know that people fought for me. There were medical professionals trying to make this work, there were people all over praying for me, there was Heidi fighting in body and spirit for me, and there was a family in agony over the loss of their loved one who gave to me. How do I process that? I am grateful and humbled beyond words. God has blessed me beyond anything I deserve.
Now that you’ve read Brad’s post, I have two questions for you. If you had endured what Brad has endured, do you think you would have a deeper, more visceral appreciation for life and for those you love? I suspect that your answer is YES! So here’s the big question: Why wait? Life is too precious to take one more day for granted. Challenge yourself to live and love more consciously and to view every moment with humility and gratitude. Begin today, right now. Tomorrow may be too late.
Click here to view all my posts about Heidi and Brad Stokes.
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