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Tuesday, June 19, 2012

34

Vignettes From Hospital Follow-ups

A cold, gray day in February, and I’m driving to my follow-up appointment at the hospital, a month after my surgery. A fine mist covers the windshield as I enter the Longwood medical area of Boston. It has not been a promising month. My recovery has been slow and unsteady, punctuated by setbacks at every turn. It took longer than expected for my incision to heal. I’m always tired and achy. My job situation is tenuous — layoffs are looming in my company — so I’ve been pressured to return to work quickly and work long hours to “prove my value,” which makes me more tired and achy. My energy level is low, and a few recent visits to the gym have ended poorly. Knowing I should feel grateful for the advances in medicine that have made my surgery possible just makes me feel worse.

And now I’m going to my post-surgical follow-up visit, and dreading it. I know what’s coming — The Talk with my doctor about all the physical activities I won’t be allowed to do. Ever. I pull into the underground garage, park the car and walk slowly toward the hospital elevators.

My doctor, charming and talkative as ever, is encouraged by my progress, and advises me to be patient and expect that full recovery will take some months. The new pacemaker device is working well and requires only minor adjustments. But then it’s time for The Talk, and we list out banned activities:

  • Weight lifting
  • Upper body Nautilus machines
  • Yoga
  • Rock climbing
  • Push-ups
  • Pull-ups
  • Pole dancing
  • Any exercise involving lifting or pressing heavy things above the shoulder

It is this kind of exercise (together with scarring and overall tissue degradation) that caused my previous device to malfunction. My doctor doesn’t want to risk damaging the new equipment, because the new device wires need to last for 15-20 years.

I understand this, but the No Yoga edict is tough. I’ve been a power yoga devotee for more than seven years and it’s become an essential part of my workout regimen… and my mental well-being. My wonderful teacher opened her own studio closer to Boston, and every week for three years I’ve been driving 18 miles one way to her classes. These classes, on Thursday nights, have provided not only ass-kicking workouts, but a sense of peace I could take into Friday and the weekend. While this yoga injunction will definitely save on gas, it’s a blow. Obviously I’ll need to figure out how to get and stay positive in the face of this added reminder of my advancing age and ever-approaching mortality. Either that or start drinking more heavily. I thank my doctor and plod out of the office.

***

Good Friday. A beautiful spring morning in early April. I park the car in the same hospital garage as two months ago, but this time I’ve got my daughter with me. My doctor has scheduled us at a multi-generational clinic, run jointly by a pediatric electrophysiologist (EP) at Boston Children’s Hospital and a cardiac genetic specialist at my hospital. As far as I can tell, this “clinic” consists of two different appointments at two separate hospitals, almost back to back. I anticipate they’ll take up at least half the day. We walk through the entrance at Children’s. My daughter is excited to be out of school and doing something different, but I’m skeptical that these visits will teach us anything new or amount to more than me going over my medical history for the zillionth time.

We have a few minutes before our appointment, and spend it looking at the audio-kinetic sculpture in the lobby. While we follow the little balls rolling and bouncing around the sculpture, a nurse brings a little boy in a wheelchair up to the sculpture’s glass case. He is mesmerized, a wondrous smile plastered on his face, which distracts me from his IV and bandages. I brush aside similar images of my daughter after some future surgery as we head up the stairs to see the specialist.

The EP turns out to be youngish, attractive, and British who’s only been in the States for a few months. He does indeed question me about my medical history but in such a friendly way that I don’t really mind. He examines my daughter briefly, then launches into a long conversation with me about the various possible therapies for her as she gets older. We talk animatedly for some time. My daughter soon gets bored and pulls out her Pseudonymous Bosch book. The bottom line is that right now, surgery in four or five years to implant a pacemaker is the only option that will keep her safe during any future cardiac episodes. This is still really hard to hear. We thank the pediatric specialist and head out of Boston Children’s. We have a bit of time before the second appointment, and spend it eating doughnuts in the Food Court, making silly jokes in (for some reason) Southern accents.

I don’t hold out much hope for the second appointment. We’ve already done the genetic testing that confirmed that both my daughter and I have the genes for our disease, so I doubt the cardiac genetic specialist will tell me anything new. And at first, he doesn’t. He’s pleasant enough, but not as social as the pediatric EP or my regular doctor — more of an academic than a practitioner. He takes me over the same genetic information I’ve heard before, about how a glitch in our genetic makeup causes cell overgrowth in the heart walls. (My daughter got bored even faster this time and is again buried in her book.) But then he drops the bomb. A team at Harvard is doing research that takes stem cells from patients with our condition, “retrains” the DNA to reproduce correctly, and gives this correct DNA back to patients, with the goal of permanently reversing the disease.

“Like gene therapy, in injections?” I say, trying to get my head around this.

“No, in a pill,” he says.

The research is in early stages, but he anticipates the personalized medicine could be more generally available in 7-8 years, just when my daughter enters the riskiest life stage for our disease. I ask him if these pills could replace implant surgery. He says, “That’s the idea.” I immediately volunteer us for any studies or trials for this research. He says he’ll be in touch. We say goodbye, and head to the garage. I’m dazed with the hope inherent in this new development, and hardly know which end is up as we drive home. My daughter might avoid surgery altogether, I think in disbelief. She might be cured. Cured!

Later that day, I tell my husband about the Harvard research and the possibility of a cure. His eyes get very wide and shiny, and he looks like he’s just gotten the best gift in the world, which he has.

Martha Culver is learning to love the treadmill. She finally got around to starting a blog.

Previously: Vignettes From a Hospital Overnight.



34 Comments / Post A Comment

Oh, squiggles

THIS IS WHY STEM CELL RESEARCH IS VITAL AND AMAZING.

wharrgarbl

@Awesomely Nonfunctional Seriously. You know how we look at the shit our grandparents' generation (or their grandparents) had to put up with from disease and illness and injury and it's just like holy fucking shit I can't believe that was still incurable so little time ago? We should hope our grandkids can look at us the same way.

Bittersweet

@wharrgarbl I'm so freaking glad I live in our time...because I sure as hell wouldn't be alive in any other era.

jhonsons

Omg I actually really like this@j

beeline96

My eyes also got very wide and shiny. Here's to hoping!

Lily Rowan

WOW.

My eyes are also wide and shiny.

SarahP

Beautifully written, and then that last bit is so promising for you two. Keep us posted!

Faintly Macabre

I don't have anything new to add, so I've just gone through and thumbs-up'ed all the preceding comments. More eloquent people, say more nice things so I can thumbs them too!

Ophelia

@Faintly Macabre Ditto.

redheaded&crazy

@Ophelia Ditto ditto.

TheCheesemanCometh

My eyes are shiny, and maybe a bit leaky. Fingers and toes crossed for you both.

And seriously people: SUPPORT STEM CELL RESEARCH! Just get whatever hang-up you have already, and try to save some precious lives!!!!

fondue with cheddar

@TheCheesemanCometh This post (and the one preceding it) should be read by everyone who is against stem cell research.

ktrow

Yay to the potential for the stem cell therapy! Have a similar(maybe the same?) thing in my family and we're all waiting to see how the genetic testing works out so we can be screened for our future risk ...

MaryMW

Martha,
This is such a well-written piece with a very inspiring and hopeful ending. I want to share this, if you don't mind, with a friend whose
fiancee's family has the gene.

Bittersweet

@MaryMW Yes, please do! It's very hopeful for all of us with HCM and other genetic conditions.

Pela

Thank you for writing this! I'm studying molecular biology because saving the world AND the people in it is the most important thing in the world to me. Also THANK YOU COMMENTERS FOR YOUR COMMENTS because sometimes I feel alone in my sciencey feelings.

wharrgarbl

@Pela SCIENCE (generally) LOVES YOU AND WANTS YOU TO BE HAPPY. HAPPY AND METHODICAL.

Pela

@wharrgarbl XOXOXO

Xanthophyllippa

@Pela You can feel your sciencey feelings around me anytime!

Bittersweet

@Pela My family and I thank you a zillion times over for studying molecular biology and saving the world and being all sciencey.

Pela

@Bittersweet Hey. You bet. Super duper hugs. And hit me up if you ever need anything. Sometimes this stuff gets really abstracted away from people, and I think it's really important to be reminded of the actual reasons why this stuff should be done. Because there's people like you, and we need to help you and yours. More hugs!!

Lily Rowan

@Pela What's the protest chant? "What do we want?" "Evidence-based interventions!" "When do we want them?" "After peer review!"

laurel

WOW and YAY.

EpWs

YAY. STEM CELLS. SCIENCE.

I am so happy and hopeful for you guys. Please keep us updated? Please?

Bittersweet

@The Everpresent Wordsnatcher Will do. With any luck one of my future updates will not involve a restraining order after I stalk our geneticist to make him include us in the Harvard study...

EpWs

@Bittersweet Stalk the hell outta that shit. Let us know if we can help. Do petitions help with study subject selection?

glow bug

That's awesome! I would also like to suggest meditation as a substitute for Power Yoga. I went to a Siddha Yoga meditation session last week and it was powerful.

themmases

Thank you so much for writing these. I work in pediatric radiology research, including some advanced heart imaging, and no matter how much time I spend trying to think about our patients and what information will be meaningful for them, your words are always so valuable and eye-opening. We just moved to a fancy new hospital and I am still working through the difference for me-- who's thrilled at what we can offer families now-- and for the families themselves, for whom "thrilled" will probably never be the right word. It's the difference between my coming to work every day and meeting children who already need help, and being proud to offer it; and having your own precious child become sick or in danger and having to come here. I am so used to giving families all the caveats about research, and trying to keep that choice as voluntary as possible, that I hadn't been considering the positive effect just of knowing that it is or will be available.

Also, our hospital has a very similar-sounding kinetic sculpture! I wonder if it's the same artist?

Cat named Virtute

I've been thinking of you since your last piece Martha, and I'm so glad you followed up. All fingers crossed for your daughter and the Harvard trials, and for you as well.

fondue with cheddar

WOW, science is amazing. I really hope this therapy works for her!

anachronistique

YAY. Yay yay yay. This is great.

whateverlolawants

That's such great news! I hope we hear wonderful things from this.

Redheads have even more fun

Sending both you and your daughter positive thoughts and good vibes. You are one tough cookie.

Slutface

Very well written. Keeping my fingers crossed for you both!

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