More Appointment Updates

Thursday I went to behavioral health on base and the doctor and I agreed to increase my Lexapro from 20 to 30 mg daily and to increase Ativan to 2mg at night to help me sleep and for anxiety issues. I have been feeling pretty good overall but I am getting a bit edgy again, most likely because of the news of lung disease, etc.

So I also saw the pulmonologist here in the Springs. My pulmonary function tests were the same as my last visit to his office, indicating my lung capacity is still 43% of full capacity. The doctor is happy I have not gotten worse but said that level is still indication for concern. He said I am too healthy for a lung transplant now but he believes it is a matter of time before it would be necessary. I guess I will find out more next Friday when I go to National Jewish Health to see the lung transplant specialist.

Oh, and the best thing is that I am now tapering my prednisone from 30mg daily to 20mg daily. Those levels are still much higher than what the human body naturally produces but less is good because it affects my mood, body weight, and who knows what else.

Lung Specialist Consultation Delayed

Just to give you a quick update... I was scheduled to see a lung transplant specialist yesterday for some tests and consultation at National Jewish Health in Denver; however, the doctor had a family emergency so my appointment has been delayed. We are disappointed because it is not easy NOT KNOWING. I mean, I know my lungs are not perfect. As of the last pulmonary appointment several weeks ago I was told my lung function was improved but still serious. But is that "serious, you will be on oxygen for life", or "serious, you have less than two years on those lungs", or "its a miracle, your lungs are getting better."

Overall, I have been feeling pretty good, with some bad days thrown in there periodically. Yesterday I felt miserable but today I feel good. The prednisone steroids, although not good for my bones, have certainly improved my appetite. I now weigh 160 pounds, I have the round prednisone face, and I look pregnant (due in a couple of months). It hit me very quickly by surprise but I am now trying to tackle it. I try to walk at least 30 minutes each day, started stomach crunches, and have ditched the pound bags of spicy drops I have been so fond of. I have even backed off of my nightly dose of ice cream.

I guess that is about it for my update. I have several appointments next week so maybe another update next weekend.

David

MyCMLCare.com

Bristol-Myers Squibb has announced a new website that offers a great resource of information and some nice tools for tracking treatments and side affects. I highly recommend adding www.mycmlcare.com to your favorites or bookmarks.

Bristol-Myers Squibbs 6 July, 2009 Press Release