The First-ish Hurdle

Ever worked really long and hard to accomplish something only to find that at the end, it may all have been for naught? That's how Christie and I felt, sitting in the waiting area at Tufts Cath Lab on Friday.

I realized about 3 years ago that something was terribly wrong with my body. I already knew I had HCM, but nothing had changed that couldn't be attributed to stress - everything was a symptom, but the disease itself hadn't progressed since 1998. I started having intense pain in my lower back - so bad that Christie had to leave class during her last semester of school several times to come home and help me stand up from my desk chair. I was gaining weight, despite a healthy diet and daily low impact work-outs. It took about a year, and several echocardiograms to convince my local cardiologist that something was amiss. He knocked me out, scoped me, and sent me to Boston because he didn't know what to do about my enlarged heart muscle. He simply couldn't care for me anymore.

In April of 2010, after another stress echo and a heart CT, it was obvious the disease had progressed, and done so aggressively. Dr. Maron informed us that the only option now was a transplant. I don't think I can articulate how difficult it was for us to deliver this news to my parents and in-laws. We could barely discuss how to deliver it as we were in shock ourselves. In retrospect, I hope we did it gently and confidently, but those first weeks are a blur. Next came the task of telling the boys. How much detail do you give? How honest can you be with an 8 and 5 year old? There are no books for that, and Google Answers came up dry. There was no hiding it. The smallest thing brought both of us to tears. We were stressed out, overwhelmed with the sheer enormity of the decisions to be made.

We spent hours on the web, trying to find an HCM clinic closer to home, looking up transplant survival stats at various hospitals. Data, data, data until I couldn't look at it anymore. What difference did data matter? I kept ending up on the wrong end of all the statistics. HCM patients don't need transplants. They get ICD's at worst. I have a disease that is being treated successfully by a total of 3 clinics in the entire country (Minneapolis, Boston, and Cleveland). All far from home, far from the neighborhood we were going to live in, the school the boys might go to, their soccer teams, our friends, our families, Christie's hospital that she loved, my band. We tried a clinic in St. Louis only to find that the physician knew less about HCM than we did, and the transplant doctor had no experience with HCM criteria for the UNOS transplant program. That disappointment was nearly crushing. It was our last hope that we could at least go through a transplant with our families in some proximity (6 hours away, but everywhere else was 18-22).

We loved the Ozarks. We loved the proximity to our families and the fact that we could go to the Farmer's Market or library and see 5 people we knew. Our favorite restaurant owners knew our names. It was the life we'd wanted for so long while we were in ministry but thought only existed in fantasy. So many realizations came crashing down: We have to sell a bunch of our stuff because the cost of living is high in any of these three cities. We had to fit into an apartment. Christie had to get a job, but where? Maybe with a travel company that can put us close to Boston as much as possible. It took almost another year to figure out how to do all of this. Lots of moving vans, boxes, storage units, second guessing, crying in the shower, anxiety, and goodbyes. 2010 was a dark year for us, making so many changes, resistant to many of them, and yet knowing we had to go for it. We had to get to Boston if I was going to have a shot at surviving until transplant.

It's important to note that I had not yet been approved as a viable candidate for transplant. You have to live in the area, at least within 4 hours, to even be considered for the list at that particular hospital. Though the progression of the disease had stopped, no one could predict when it would rear its head again. Or if it ever would. We only knew that if it did, I was in big, permanent trouble.

So all of this upheaval was simply for the hope that the rest would work out. There were loads of testing to be done. I took a drug called Norpace for almost 10 years that has a tendency to destroy the liver. If my liver is bad, does it discount me? What if they find some other disease lying dormant in my body? I've lived all over the United States and even outside of the country. What may be lurking that disqualifies me?

We spent a year travelling, trying to get close to Boston, still driving 6-7 hours most of the time. The doctors are telling me I need to make a decision. My blood type makes it difficult to receive a donor heart. I need to be on the list as soon as possible.

My father-in-law's cancer returned with a vengeance, Christie's grandmother (to whom she is extremely close) started having heart problems again. We had furniture sitting in a storage unit in Rogers, AR, 4 hours away from anyone who could pack it up and send it to us later when we finally find a permanent place to live in New England. We took 4 months in Little Rock to settle our business, move our stuff closer to family, and say our goodbyes. Still unsure if I was eligible. Were we crazy?

The payoff was this week. We've been making regular visits to Tufts since we arrived in New Hampshire, some of them to deal with this new arrhythmia problem that's developing due to my heart failure. Also for tons of consults and tests with everyone from psychiatrists to infectious disease doctors. I've had blood drawn so many times I've lost count. Thursday I had ultrasounds on my abdomen and carotid arteries. Friday was the heart cath - the biggie. These were 8 hour days, running from one clinic to the next, grabbing a quick bite in between to keep my blood sugar up. Christie did her best to keep the boys occupied. We brought the laptops so they could jump onto Tufts Wi-Fi and play games to pass the time. They migrated from waiting rooms to cafe's in the hospital, and never complained once. If they can do that, then all of this must be teaching them something, though I'm not sure what to call it. I wish they didn't have to do it at all.

The heart cath was the big deal. If the heart cath didn't come back clean, there was no listing, no transplant. Probably a slew of other procedures to get me to that point, but it would have put things off indefinitely. Sitting in the waiting room, I was ruminating over all of the above. Was it all going to turn out to be worth it, or had we done all this for nothing? My previous troubles with anesthesia made it easier to go through the procedure sans sedation. That was a mistake - it was painful and psychologically straining. Yet one more thing to endure on this road, and hopefully it was worth it.

The heart cath came back clean. What should we feel? Joy? Relief? Dread? How do you verbalize this feeling; "Yay! There's nothing to prevent having my heart taken out and replaced with one belonging to someone who died a few hours ago! Preferably someone young and strong who had their whole, healthy life in front of them! Cheers!" Maybe Hallmark should come up with a card. How can you be so relieved in one moment, and so sad in the next? It's the first huge hurdle in the process, though we had to jump a hundred small ones just to get here. Just to have the chance. But this is the way of it. The transplant itself doesn't guarantee anything, other than another chance.

I guess sometimes, just a chance has to be enough. I hope in the meantime, we've laughed, cried, enjoyed all that we can, and tried to incorporate the hurdles as part of a life well lived. So much has been left behind, and some days it's hard to see the any bright light in the future. But a chance is all I ask for.