Friday, August 2, 2013

In this skin

In this skin of mine, at a glance, you'd never guess that I'm chronically ill.

Friends, doctors, nurses, and strangers all say the same thing, "You don't look sick."

What does being sick look like?

When the chronic graft versus host disease began to slowly flare up in my lungs back in June, I didn't look any different to friends and coworkers. Unless you knew what to look for. My office is on the second floor of the building and I would take the stairs every day. One day I started panting once I reached the top landing. And then it became a daily occurrence. I couldn't catch my breath to make small talk with passing coworkers, so I'd wave hello and head to my cubicle. People who'd encounter me at the top of the stairs would joke that it looked like I'd just run a sprint.

Of course I hadn't. My lungs were filling with infiltrates and scar tissue caused by graft versus host disease and compounded by Bronchiolitis Oblibertans Organizing Pneumonia (BOOP for short). It's not something that you can see without the aid of a CT scan.

Then I started losing my voice. And then came the constant coughing. Friends at work who know my history began to get worried. I was finally looking sick.

I'd informed my transplant doctor at MD Anderson back in June as soon as I realized something was wrong. She put me back on inhaled steroids hoping that it had been caught early enough to take care of the problem. 2 weeks later and I was getting worse. I could barely speak above a whisper and the coughing started to sound like a goose in distress. My lungs weren't expanding sufficiently.

I had a follow-up at MDA on 7/10/13. Silly me, I thought I'd get a prescription for high-dose steroids like I did the last time lung GvHD struck in 2010 and be on my way. Lucky for me my transplant doctor is at the top of her game and saw what I couldn't. On top of the lung GvHD and BOOP she suspected a tertiary infection in the lungs and had me admitted to the hospital for tests.

She was right to do it and I am grateful. Bacterial pneumonia managed to take advantage of the ripe situation in my lungs and settled right in.

I began high-dose steroids to deal with the GvHD and BOOP. Because the doctors couldn't know what bacteria had taken up residence in my lungs until cultures were grown, they threw several antibiotics into the mix. After 7 days of trying to cultivate growth, the pathologist only managed to get H Influenza to grow. (This is a bacteria and not the virus responsible for causing flu.)

After 3 days in the hospital, I started needing supplemental oxygen most of the time. I couldn't keep my oxygen saturation level above 90 on my own. Breathing treatments began 4 times a day in the hopes of expanding my airways and clearing out the mucous in my lungs making breathing so much harder on top of everything.

By day 7 I was resigned to being in the hospital indefinitely, and that's when my transplant doctor decided to let me go home with a host of equipment.

I currently have 11 tanks of oxygen in my living room. There's a catalytic converter for when I want to save the tanks for when I need to leave the house. There's an enormous tank of emergency oxygen in my bedroom, just in case. I have my very own nebulizer now and do breathing treatments daily.

Chris bought a pulse-oxmeter so we could monitor my levels throughout the day.

I'm also back up to 26 pills a day. Immunosuppressants, oral steroids, anti-virals, anti-fungals, topical steroid creams and lotions, cholesterol meds, a huge host of antibiotics, multiple steroid inhalers, and sleeping pills. Some are for prophylaxis because the steroids and immunnosuppressants leave me open to easily catching infections.

I also need to see my local oncologist weekly to monitor my blood-work. Many of the drugs I'm on are hard on the liver and kidneys and so toxicity can be an issue.

This past Wednesday I had a follow-up at MDA to gauge the efficacy of the regimen I'm on. The crackling sound in my lungs is improving, which is a step in the right direction. My doctor says that I'm slowly improving. I'll take what I can get. I've still needed supplemental oxygen off and on, which is not so great, but I'm working on it.

There are side effects to all of the drugs, the most prominent of which being that I shake uncontrollably from the steroids. That, and I can't sleep for more that 3 or 4 hours at a time without a sleeping pill because of the oral steroids. It makes for interesting days. Also, there's the constant driving need to eat everything in sight. Steroids. My glucose level is up, too, which may mean temporary diabetes due to steroids. It happened the last time and I won't be surprised if it happens again.

I'll go back to MDA to get re-evaluated in 2 weeks and also see the endocrinologist about the whole diabetes thing. If I can stay off supplemental oxygen for that long, my doctor will let me return to work.

In the meantime, I'm laying low and doing my best not to setback recovery. And if you should happen to run into me on one of my rare outings out of the house, remember, I'm doing my best not to look like a sick person. Feel free to ask me how I am, but please don't tell me that I don't look like anything's wrong. Unless you have x-ray vision you'd never guess my lungs look like someone dumped 2 boxes of cotton swabs in each one.


Nancy said...

Thank you for the informative update. Ann, I can't tell you how unfair this all is to you. I feel so bad that you are still struggling with GVHD and its wreaking havoc on your lungs.

You are my hero and I am in awe over how strong and resilient you always are. You've always got your boxing glove on which I admire to the fullest extent.

Keep on fighting my friend. And continue to recover. I know you are being religious about your meds and breathing treatments. That will take you far! PLease let me know if there is anything I can do from afar.

Looking so forward to seeing a HEALTHY Ann in a few months! Know that so many are praying for your full recovery. Love you, nancy

Jody said...

I had to take several deep breaths to read the depth of your illness and what you have gone through. I have a much better perception now of how truly ill you are and what a flare up of the graft vs. host disease means.

I should be helping you and yet here it has happened again, you are educating us. You don't have to talk above whisper to have the extraordinary strength that you do.


Kim Henderson said...

Ann, So sorry to hear of this setback. I have been checking the blog daily waiting to hear an update. Thank you for sharing your journey, it is eye-opening.

LPC said...

Trying to breathe in support for you. xoxox.

Linda said...

What does your doctor think of EPC for GVHD? My friend's daughter has been on steroids for 7 years post BMT for leukemia and recently started EPC at Seattle's Hutchinson. Her need for steroids has greatly decreased; she just ran a half marathon.

Ann said...


Photopheresis is definitely on the table as far as treatment options are concerned if the oral steroids and tacrolimus can't get the job done. My transplant doctor has discussed the option with me each time I've had a major flare up of GvHD. Fortunately, the steroids have worked in the past and I'm hoping they'll do so once again. I see the team the Wednesday, so I'll know more.