And The Band Played On

So, I won’t be eloquent, witty, or funny here (so, same as always), I just need to share important information quickly. I’d intended to post so much more about post-transplant life, but honestly, there’s been so much going on since I got home, I haven’t had time.

We’ve made a lot of small trips which I hope to detail later in the “Learn” portion of the site (Gypsy Schoolhouse) and I’ve had lots of things happen that need to be chronicled here for those with heart concerns, HCM, transplant, and the like. There will be time, later. For now, there are more pressing issues, despite feeling like we’ve not had much of a breather for years.

Monday: Christie has been putting off a hysterectomy since she was in nursing school in 2009. Of course, I was told I needed a heart in 2010 and we spent the year looking for jobs near Boston, exploring travel nursing, and tying up loose ends. We left Bentonville in 2011 to start the task of looking for a home close to a good transplant center that would list HCM patients. Most of you know the story from there. In the meantime, Christie’s health has been deteriorating as a result of putting off surgery, to the point where she’s now anemic and in a bit of danger if she doesn’t have the surgery soon. Currently, it looks like late December is the target. The challenge is getting to that target without missing work – she’s pretty much spent all of her personal days and FMLA time on my 5 month stint in the hospital, the transplant surgery, and three subsequent hospitalizations, two for rejection, one for fear of meningitis. Bottom line, this needs to be dealt with before the end of the year.

Tuesday: Rich has also been struggling on and off with back and shoulder pain for the last year, but it’s become really intense in the last few months. We’ve noticed a curvature of his spine since he was an infant, but were told repeatedly by doctors that it wasn’t abnormal. We’ve recently been seeing a chiropractor who recommended x-rays and a consult with an orthopedic surgeon. Long story short, Rich has scoliosis, not surprising since Christie and I both have slight cases ourselves. However, on X-Ray, his shows a 40 degree curve on the upper spine and a 42 percent curve on the lower spine. The spine is twisted, much like one of those corkscrew loops on a roller coaster. The surgeon didn’t want to discuss surgery since it was our first visit, but we insisted that he just spill it. So, Rich needs spinal surgery in a major way. The surgeon will be placing screws along the length of his spine and attaching two different rods to them, after straightening the spinal chord. This will also require bone graft (shavings) from his own spine and some transplanted spinal bone. His “growth plates” are closed, so it’s the only surgery he should ever have to have, but it will limit his ability to bend normally at the waist (he’ll have to bend from the hips), as long as the Scoliosis doesn’t get any worse between now and surgery – the further down the rod goes into the lumbar (lower spine), the more restriction. The surgeon tells us he’ll be in bed for a few days, then up and walking, out of the hospital in a week. Six months with no sports or much physical activity, then he should be able to return to normal activity (sans roller coasters, which he is NOT happy about). Also looking at a target date of late December. Several people have asked if we can put one or the other of these surgeries off, but the answer is, no, we can’t. It’s risky to wait on either one, being as they’ve both been put off too long to begin with.

Moving on: Wednesday: I had my monthly heart biopsy, which is never pleasant, though it’s great to see the cath lab gang. I’m pretty dippy most of the rest of the day. The way the week was going so far, I decided Christie and I needed a break. We’re trying to take a vacation next week, which is actually going to be very busy as we want to cram a lot in. I’ve not been back to Arkansas since the end of 2011 and there are lots of people on my list to see and catch up with. I booked an overnight at an inn with a day spa in Lancaster, using a 100% off Groupon and some points we’ve accumulated over the last few years.

Thursday: Boys looking forward to Nerf Club, but after an hour, we were rained out. Still sore from the biopsy, I didn’t mind leaving early, but I felt like the kids needed to run and play, given the week so far. It’s possibly our last Nerf Club for the year, so kind of a bummer for them. Christie had been up for over 24 hours (as usual) by the time we got home from the biopsy on Wednesday so she was catching up on sleep before we left. I wandered into some songwriting while she got ready to leave. The phone rang, not a good sign, early on the day after biopsy. My coordinator’s tone of voice tells me everything. I’m in rejection for the third time. Not as bad as the first two times, and no need to be admitted, but another blast of the dreaded Prednisone – 100mg for 2 days, 60 for 3, 40 for 3, 20 for 3, then – the worst part – 5 mg a day, probably forever. I’ve been on a trajectory to finish with Prednisone in the next two weeks, and have been weaning off of it 1 mg at a time for the last 8+ weeks. This also means I most likely won’t be on schedule for my one year biopsy because I’ll continue to have them once a month instead of spreading them out further sooner rather than later. I had to leave immediately to get an echo at the med center and pick up the meds.

So now we’re rushing around to get to the med center and get all of this done in time to get to the inn I’d booked the day before in time to use the spa – I really wanted Christie to be able to get a massage. I finished at the hospital and we got to the inn around 4:30 pm. The room was great, but a wedding party had booked the spa and the dining room. We just relaxed in the room which we didn’t really realize was underneath the spa until 8 am the next morning when they opened with clicking high heels and the dragging of chairs across the floor. Not much sleeping in to be done. To be fair, the inn comped the the night and even upgraded us for a future visit. All well and good, be we so badly just needed a stress-free 24 hours. There were other irritations with the reservation, not worth going into here. 

Which brings me to Friday: We got to see Dr. Strange with the kids. Thoroughly enjoyable. Christie ended up getting her massage at a local spa, while I got some work done at home. But I’ve been a crank on Facebook and in real life because I’ve been trying to figure out how to dump this on all our family and friends. I get so tired of delivering bad news, always health stuff. It’s old. I had to force myself to write this, because I’m so sick and tired of not being able to post good things. “Hey, I’m feeling better! Everything’s going good!”

But the fact is, it’s not. We’re still trying to figure out what normal life is after these last few years. It’s been such a struggle that we’ve talked often about getting family counseling – not because we’re having problems with each other. We just feel a bit lost at this point. At the end of Return of the King, Tolkein says of Frodo and Sam, “How do you pick up the pieces of a life left behind?” We’ve said often that we feel like the four hobbits returning to the Shire after a journey so long, so hard, that no matter how much you try to explain it, you simply can’t convey the things you’ve fought, seen, endured, all the loss and hope and things left behind. It’s exhausting to try. We’re exhausted, physically, psychologically, socially. We so desperately need a break, but don’t see a way clear to have one. We sneak little moments in, but I can’t remember a time in the last 5 years that I’ve not been anxious, stressed, pressed down, figuring out how to overcome the next obstacle. They don’t seem to end, and I don’t say that for the sake of pity, but because I don’t know how else to say it. Pity just adds to the self-consciousness and awkwardness and neediness of it all.

I look at our situation and realize that even after my transplant, Brennan doesn’t cognitively remember a time when we were all healthy and out of danger. And he’s yet to, even now. How is it affecting him? How has it affected Rich? I know the experience has changed Christie and I in fundamental ways – we are not the same people we were before and we’ll never be again. For myself, I can’t find the space to even figure out what my life is anymore. It seems like an endless parade of needles, wires, blood, pain, worry, loss, and financial stress. Trying to live a little bit in between all that doesn’t work – it just has to become part of normal life. You can’t make commitments,  you can’t abide by a normal daily schedule. Nothing is normal. Things that need to be done never get done, there’s no time, and when there is, there’s no energy from all the running and the needles.

“All the sleeping, never waking, all the leaves in need of raking, all the business undertaking, all my bones and muscles aching…” So Dug Pinnick sings with such sorrow and anger on King’s X’ “Dogman.” I used to not understand that song. “Let me take my thoughts away, to think about another day, remembering the times I pray, to help me deal with me… to be the Dogman.” Now I do. When you are just so sick of the doubt, and the noise, and the endless uncertainly that you don’t even recognize yourself anymore because you are so beaten down, you’ve become the Dogman. And right now, I am.

“Give me a dollar or give me 50 cents,
Let me take it back if that ain’t what I meant
Give me a coat or give me a bite,
Give me a light bulb and make sure it’s bright
Give me the moon or give me everywhere,
Give me some powder to spray up in the air, up in the air

Let me take my thoughts away, 
To think about another day 
Remembering the times I pray, 
To help me deal with me... to be the Dogman 

Give me some attention, lend me your ear,
Give me what to do and get me out of here
Give me a book, give me something to read,
Give me a horse race and give me who’s the lead,

Let me take my thoughts away, 
To think about another day 
 Remembering the times I pray, 
To help me deal with me... to be the Dogman 

All the sleeping never waking, 
All the leaves in need of raking 
All the business undertaking, 
All my bones and muscles aching 
Thoughts and mind are surely flaking, 
Over luncheons hands are shaking 
Surety of no mistaking, 
Cars and horns and glass is breaking 


Give me a color, make it black or white,
Give me a newspaper, tell me if it’s right
Give me a nail or give me a bat,
Give me a skinny or give me a fat 

Remembering the times I pray,
To let me take my thoughts away
To think about another day,
To help me deal with me
To help me deal with me... to be the Dogman”