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.


Katherine C. James said...

Thank you for the update, Ann. I'm glad you're doing better. I know that your better comes with a lot of mighty effort on your part. I share your good cholesterol tendency to the point that for a while doctors kept checking it because they thought it was an error. So Yay for us, that is a good thing. Thank you for reminding people about flu shots and respecting the health of others All The Time. Sending you love and hope. xo.

Ronni Gordon said...

Thanks for the update, and glad you're doing better.

What a long haul! Keep keeping your head up. It sounds like you have been doing a great job of that.

Jody said...

Every time I read one of your posts i see courage and determination redefined.

Much love,

LacubriousOne said...

Thanks for the update. Glad to hear that you are proactively managing your health with diet and exercise. That kind of determination is hard to come by and so many people just give up when faced with a lifelong illness or physical limitation. check out this women's story...

Her motto is "Doing what I can, with what I have, where I am. Because I Can!" It reminds me of your perseverance!

Anonymous said...

Ann, how are you? Thinking of you often.


Andrew Alley said...
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