Quick update after our lung appointment today. Unfortunately, the pulmonary function tests from last month are correct with this month's findings. So that means that my lung capacity has gotten worse. Although my blood levels are looking better, the last part of my disease to respond to the medication is always the lungs. With that being said, we are confused... as they have gotten worse since November. We believe that this might be a direct correlation of the increased prednisone use during those months which led to weight gain. I have my rhematologist appointment on the 24th. So we will know more then in regards to the next "treatment" option.
Since the doctor wasn't sure if the decreased pulmonary function was due to my disease, weight gain, or decrease in prednisone, she tests my lung capacity which hasn't occured since my first diagnosis in 2008. At that time I was using 70% of my lung capacity, unfortunately I am now only using 45% of my lung capacity. As you can tell, Chris and I found this news very frustrating and confusing... as through all the medications, tests and trials, and havoc on my body, it seems that the lungs are just not wanting to cooperative. The doctor is not sure if the 45% is permanant or if it will get better upon losing the prednisone fluid and weight--- again back to the trial and error and waiting period.
On the positive side, my heart looks great based on my echocardiogram and my oxygen level is steady at 95. This is encouraging as obviously oxygen is getting to my heart. Hopefully we will have some conclusions on the 24th and decide whether to continue with the infusion, or try a new released infusion treatment.
We thank you all for your continued prayers and support. This has been a very hard year and a half, and although we don't quite see the light at the end of the tunnel yet, we know it is quickly around the corner. It is hard for us not to get "negative" or "down" but we continue to strive on and thank you all for your comfort.
It has been hard to not get frustrated and angry today... hopefully tomorrow we will find peace and clarity with this resolution. Until then...