Walking The Thin Man

In May 2005, I learned that I had developed amyloidosis, a rare protein folding disease. This is my story.

Friday, August 11, 2006

The PFT

This afternoon began the first of many, many visits to Boston Medical for my second stem-cell transplant. Today -- a visit to the main building for a PFT (or Pulmonary Function Test for those of you who hate acronyms). This test gives an accurate assessment of your heart and lung function. I didn't know why I was asked to do this test at the last minute, but my guess was that they were going to use the results to help decide the amount of chemo I would receive the second time around.

If you aren't thoroughly versed in the details of a Pulmonary Function Test -- today is your lucky day, because I'm going to describe it to you. Actually, the name is a misnomer, as it is actually a series of tests, each designed to test the limits of your pulmonary and respitory systems. A triathalon of heart and lung function, if you will.

The first "test" isn't really a test at all. A technician draws blood out of an artery in your arm to gauge the amount of carbon dioxide in your system. Yes, I said artery. But not what you're thinking. They actually get their feed from an artery in your wrist. It's not too bad, but the needleprick is a little painful due to the high amount of nerve endings in your extremities. Blood is drawn, and you are done.

The second "test" involves a series of breathing exercises. You are brought into a room with what looks like a glass phone booth, which is connected to a computer. Inside the glass booth is a series of tubes, which end at an open pipe for you to breathe in.

Don't worry, they don't lock the door.

Once inside, you do a suite of exercises. For example, one involves taking a really deep breath, then exhaling it out as fast as you can. But once you've exhaled, that's not enough. They want you to exhale every last bit of air in your lungs! At the end of 10 or more seconds, you feel as if your diagphagm is in your throat. It's a pain in the ass, but not too bad.

The final "test" involves your heart under stress. A CO2 and heart rate monitor is slapped on your finger. You then walk with the technician back and forth down a long hallway. Once you've done this for a couple of minutes, you then walk up six flights of stairs (if you can). All of that walking in Boston this summer prepared me for this task, and on the 6th floor I was calm and relaxed. The technician, however, was not faring so well. I asked if he wanted a breather before we made the trip back downstairs.

---

After finishing the test, I was able to bring my test results over to next building and hand them directly to my primary doctor at the clinic. (One of the benefits of having a rare disease -- all the doctors know who you are.) "How many floors?", she asked, as I turned the corner to the amyloid wing. She knew why I was at the hospital today, and knew that I had just finished a PFT, which impressed me. "Me, or the technician?" I replied, with a faint smirk.

She reviewed the results quickly, as if it were the front page of the New York Times. With a curious grin on her face, she replied, "This is great. We need to talk next Wednesday about the [chemo] dose we are going to give you. I thought that we were going to give you 140, but now I'm not so sure."

"What do you mean", I asked. Oh geez. I knew this test had something to do with the chemo doses. A feeling of dread came upon me.

"Well, because you did so good, maybe we'll give you the full 200 again."

"Oh... that's great", I replied. So much for this time being easier.

--

That melphalan is some seriousstuff. I recently learned that is was the main component of mustard gas, which killed thousands of soldiers in World War I. With amyloidosis, the only major weapon in your arsenal is the melphalan. And, of course the stem cells after they totally destroyed your immune system. Generally, the higher the dose, the better the chance if will wipe out the "factories" in your bone marrow that are causing the disease. But the doctors will only give you what they think you can tolerate. For high-dose chemo therapy, most patients get between 125-200ml of the nasty stuff. As I can personally attest to, it is not a pleasant experience, and you are quite miserable for a couple of months as your body deals with the aftershocks of all that random cell destruction.

I got the full dose the first time, and I still feel the effects today, 13 months later. It's a blessing to be told that I can handle another full dose. What would another full dose do to me? Can my body really handle it?

That's a question I'm not going to worry about this weekend, I'll have plenty of time to freak out about it next week.

2 Comments:

At 8/12/2006 1:09 PM , Anonymous Anonymous said...

Thanks for the GREAT explanation, you should have been a teacher. Good Luck as you go through this again.

 
At 8/14/2006 2:23 PM , Anonymous Anonymous said...

Hi Tony,

I've been away from the computer for a while and have just had time to catch up with your blog.

So sorry to hear you're up for another SCT. I can't imagine how hard this is for you, but from reading your blog over the last year I know you're a fighter, and like you said, that's the most important thing.

I wish you all the best and pray that this is the one.

Beyond

 

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