Saturday, August 31, 2013

Another 2 weeks

Another 2 weeks has passed and so has another marathon session at MD Anderson. On Wednesday, I saw my transplant doctor. I'm still improving and it's still happening at a glacial pace. Dr. K. said that my lungs sound clear, which means that the insidious crackle in my breathing is resolving and gas is moving around inside my lungs. She also told me to stop my breathing treatments.

On Thursday, I had a host of tests to check my lungs: X-rays, full pulmonary function test, 6 minute walk. My X-ray looked like someone had smeared vaseline across the lower lobes of both lungs. That's residual pneumonia and I've been told that although I don't have symptoms, the pneumonia can linger in my lungs for more than 6 months. I also got to see the results of my latest CT scan. My endocrinologist showed me the pockets of pneumonia versus the active Graft versus Host Disease in the lung tissue. The GvHD is diffusely spread throughout both lungs and looks likes scattered swabs.

As for the lung tests, it was a mixed bag. My lung volume is 55%. It does make being active difficult and I move much more slowly than I'd like. As for the 6 minute walk, I had to wear a monitor that measured my heart rate and oxygen level while I walked between 2 lines at a normal pace for 6 minutes. I managed to successfully complete the test within the range allowed for healthy people.

Thursday was also pulmonary specialist and endocrinologist day. The pulmonary team also said that my lungs sounded clear and that I need to keep doing the breathing treatments. Pulmonary trumps transplant on this issue. I don't have any obstructions in my lungs, but I do have restrictions. My lungs cannot inflate to full capacity. This is likely due to a combination of scar tissue and stiffening of lung tissue. I have to see them again in 3 months and repeat the pulmonary function tests.

My endocrinologist is pleased that I've managed to keep my glucose in check through diet alone. This means no extra meds to control it or a need to test my glucose or give myself insulin so long as I can continue to control things. My cholesterol is slightly elevated: 215. High normal is 200. This is not unexpected even though I take a prescription to control my cholesterol. My near-vegetarian mother has always had high cholesterol, even on medication. I'm genetically predisposed.

There is a caveat. My healthy cholesterol is twice as high as a normal healthy person's. Dr. J. told me that this is like hitting a genetic jackpot. I'll take it. He also explained that the number is factored into your overall cholesterol metric and it is skewing my overall number high. Long story short, I'm in good shape. No changes to my meds and I'm to continue eating a healthy diet and continue exercising.

That's the other thing. I tend to pop awake between 4 and 5 in the morning. After several mornings of this, I decided to try walking on the treadmill since I wasn't doing anything else. It's been a week, and I'm walking 40 minutes each morning and averaging 1.5 miles. It's really self preservation. I'm trying to hold off steroid weight and improve or at the very least, maintain my lung function.

I'll leave you all with a few last things. What most people don't realize is that every time a transplant survivor contracts a respiratory infection, pneumonia, or lung GvHD, scar tissue develops in the lungs. It doesn't go away. It happens with each new infection. Steroids, immunosuppressants, and scar tissue leave me open to catching whatever bug is circulating and so I have to be extra careful around crowds. My lungs will never achieve 100% function again.

So, please keep in mind that there are people that you will come into contact with on a regular basis who may not look actively sick, or they may not be acting in a way that you perceive to be ill, but they are the very most susceptible individuals. If you're sick, or have come into contact with a sick person, or have a sick child, employ the 3 foot rule. Get vaccinated if you're healthy enough to, especially with flu season right around the corner. Remember, people tell me I don't look sick, but another respiratory infection means I'm right back in the hospital and this begins all over again.

Saturday, August 17, 2013

2 Week Update

I had a 2 week follow-up with Dr. K. concerning the lung GvHD and as far as she's concerned, things are headed in the right direction. She said my lungs sound better, which is a very good thing.

 I am suffering from side effects from steroids, which is not such a good thing. I have tremors in my extremities, skin thinning, and if I stand for too long, my entire body shakes. The good news in all of this is that I've managed to restrain the ravenous urge to eat everything in sight that comes with high-dose oral steroids. If I can't stand it, I'll have a piece of fruit or a bottle of water. It's a poor substitute for the extra-large deep dish pizza I want to inhale in one sitting, but it will do for now. My skin is so thin you can see my veins and if I'm not careful, a light tap will leave a bruise.

I'm also not sleeping. Steroids wreck your adrenal glands. I've spent the better part of a month existing on 3 to 4 hours of nonconsecutive sleep per night. I'm so jittery during the day that I can't nap. I've been working with both my MDA and my local team to figure it out. Ativan gets me 3 hours of sleep if I'm lucky. My local prescribed 15 mg of restoril. It gave me 3 hours just like the Ativan. He bumped it up to 30 mg and ironically, it gave me 2 hours of sleep before I popped wide awake for the rest of the day. Nice, right? I can't take ambien because it leaves me feeling sick and disoriented the following day. Benadryl left me drowsy, jittery, and awake. ZzzQuil gave me a whopping 4 hours of nonconsecutive sleep.

As a leukemia patient, I used to get a compounded prescription for a nausea medicine called ABH. It contains Ativan, Benadryl, and haldol. Would knock me out every time, so they started giving it to me the first time I had to be on steroids to help with sleep. Chris suggested it to Dr. K., and given that I was on the verge of a psychotic episode due to lack of sleep and out of control mood swings due to steroids, she was willing to try it. I slept for 7 hours after taking one. Dr. K. also wrote a prescription for Lunesta. My insurance company wants everyone to jump through flaming hoops while singing the Star Spangled Banner backward before approving it, so I can't report on its effectiveness since I can't get my hot little hands on it just yet.

Needless to say, my overall mood is improved thanks to a few days of near normal sleep.

I have another appointment next week. It's an annual that had to be deferred since I was in the hospital in July. The following week I'll follow-up on the lung GvHD with Dr. K. and the pulmonary specialist, as well as my endocrinologist who's currently monitoring me for steroid induced diabetes. I've managed to control my diet well enough that it hasn't become an issue. I did become diabetic the last time I was on steroids and so they are being cautious. I'll also see my head and neck surgeon for a check-up on the whole squamous cell carcinoma of the tongue thing. I was supposed the see her the same week I ended up hospitalized and so that 3 month follow up was also deferred.

I'll update as things occur. For now, my breathing continues to improve. I haven't needed supplemental oxygen in almost 2 weeks. I still get tired easily, but it is improving. And people still tell me that I don't look sick. Go figure.

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.