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Summary


Chronic Myeloid Leukemia (CML) was the diagnosis I received on November 1, 2005. I went into the clinic three months earlier because of a tightness in my chest, left side, resulting even from a short walk out to my car. Then the week before diagnosis I went in because of a strange bulge in the left side of my abdomen, felt when lying in bed on my back. Turned out to be a rather large spleen, later measured at 11cm below the rib cage.

Since then, my family and I have been through some trying times. And as a Naval Officer stationed overseas in the UK and with family and friends living throughout the world, including the United States, United Kingdom, Ireland, Germany, Japan and Australia, I decided early on that it would be easier to update everyone via a blog than by email or phone.

I tried, and resisted, Gleevec. I also tried Sprycel but I proved intolerant to it because my counts dropped as soon as I took more than 50mg daily (standard is 100 to 140 mg daily). So I turned to a bone marrow transplant, which I underwent November 31, 2007 at the Fred Hutchinson Cancer Research Center in Seattle, WA. I have since been dealing with chronic graft versus host disease (GVHD) issues with my GI tract (resolved), eyes, mouth, and now my lungs. The lung problem is pretty bad as I hve been diagnosed with bronchial obliterans and now have only 42 percent lung function and am on oxygen a great deal of the time.

But not to fear; I am hanging in there, keeping my spirits up and continuing with my life. Through this blog, people have followed my treatment plans through success and failures, various types of medical appointments and procedures, my fluctuating counts, etc. Besides information detailing my own experiences, I also try to include general aspects of CML, various forms of treatment and the experiences of a stem cell transplant.

Friday, August 7, 2009

National Jewish Health

I am a week late posting this but to let you know how my pulmonary appointments went last Friday, they went as well as could be expected. My lung capacity remains at 42%, which isn't good but at least I am stable. The doctor also told me I do have air trapping in my lungs, which he said would account for the heavy, tightness in my chest.

The doctor, David Schwartz, did some of his training at the Fred Hutchinson and still has good friends there. So while I waited, he went to his office and called his buddies about my case. I was impressed with the quick and direct feedback. So they at the Hutch say I am on all the correct medications for bronchial obliterans (BO), which they called the PFAM program for chronic graft versus host disease (C-GVHD) of the lungs. Prednisone (steroids), Fluticasone (Advair inhaler), Azithromycin (Zithromax antibiotics), and Montelukast (Singulair). They (The Hutch docs) said I will need to stay on the PFAM meds for a year, then discontinue one of the four, wait six months, discontinue another med, and so on. Meanwhile, I am on oxygen as I need it, which is during and after any exertion and while sleeping. The doctor also recommended I get a pulse oximeter so I can keep tabs of my oxygen saturation during rest versus exercise and to compare how I feel to my oxygen levels, etc.

So, I think that is about it regarding the appointment. I do want to thank my buddy Mike W. for driving me to Denver and being there for me during the consultation. He is a great guy and a very good friend. He is still on active duty in the Navy but is planting his roots here in Colorado Springs for retirement. I also want to mention that my appointment at National Jewish Health was impressive. I liked the staff and the facilities and every appointment was ON TIME! I'm not kidding either.

On a lighter note, today I took my two younger boys to the Air Force Academy for bowling. We had a great time as usual but what was amazing was my bowling. My second game I bowled four consecutive strikes plus another three during that game. My personal best as well as the score - a 190. I don't bowl but I guess the ball I was using was magic. The bowling did tire me but I kept the oxygen going between bowls.

Well that is it. I have to get back to my research paper. If I didn't mention it before, I am working on my graduate degree online with University of Maryland University College.

4 comments:

Anonymous said...

David,

So glad to hear that you are happy with National Jewish Health.
We are counting the days to come and see you and the family. Shane is beyond excited and keeps asking me "how many more days, mom?".

It figures that even sick and on oxygen you would get such a high score bowling, you always made things seem so easy. Remember the first time you skied and it was like you had been skiing all your life.

See you in a less then 2 weeks, until then take care.

Love,
Lisa

Mom said...

Remember in Germany. Lisa talked you into training for cross country. She fell off the bleacher the first day, never ran again and you went on to be one of the best runners the school had. You took your baby brother and he beat all the girls in Junior varsity.
Keep it up.

Love Mom and Dad.

Anonymous said...

David,

For anyone reading this who has no idea of what these meds are like that you are on- I want everyone to know you are a true HERO! You are dealing with so much and I wish I could take so much of this away from you. You hardly complain and have been dealt a tough road with your chronic graft vs. host disease AFTER surviving a bone marrow transplant.

I am blown away (no pun intended) by the way you are finding ways (like bowling) and spending times with your sons and getting a MASTERS degree to boot. Needless, to say you are living each moment to the fullest and a shining example to so many of us out there.

You continue to inspire and take things day by day but are also proactive in your care. I am thrilled you are in such close contact with the Hutch and getting the care they suggest as well!

Keep on truckin!
Lea

Anonymous said...

David-

Just checking in to see how the rest of your summer went and how things are going!
Lea