Baby Steps

July 1st I went back to see my new pulmonoligist for more PFT's (pulmonary function testes) We have been doing them monthly to track my lung function and see if i am staying the same or getting worse. After the PFT's I was shocked to hear the results. In a PFT there are many levels of lung function that they monitor but the 2 most important are the FVC and the FEV1. The FVC is the forced vital capacity which measures the total volume of air expired (pushed out) after a full inspiration (breath in) The other level is the FEV1 which shows a decrease in percentage in patients who show an obstruction and narrowing of the airway.

Last month's FVC 79% of predicted
This months's FVC 77% of predicted

Last month's FEV1 35% of predicted
This months FEV1 31% of predicted

After my PFTS my mother and I sat down with the pulmonologist to go over the results. I asked him what the FEV1 meant and at what percentage he would become concerned with lung transplant. His response was, " I was concerned at 35%!" He said that this category is important in my disease as it shows the obstruction and the narrowing of my airway. He explained that when we get sick we naturally decrease our lung volume and the liters of air that we are able to take in and push out. With my level of function being so low already , getting a run of the mill cold or flu could literally kill me or put me in the hospital until i could breath on my own again. Ok with this being said there is more to this story.

As of Tuesday of last week I no longer have my Dr. , my partner in crime though all of this. His name is Jack and he has been with me since the extraction of my castlemans tumor. He is my comfort, my courage, and the reason I am so educated in my disease. To lose him at this stage of the game is devastating to say the least. He has moved to a different clinic and seeing him is just not possible. Now, I can see a college of his who is actually his attending physician BUT its not Jack. I feel like I'm starting all over at square one in many ways. This new pulmonologist that I am hooked up with does not have a go get em attitude. He is afraid to answer the hard questions about my destiny. I do not think his personality and mine mesh. I absolutely do not want him dealing with my care. I need a Dr who is willing to speak to me a very matter of factly. I need someone with a plan for a plan with a plan. I don't have time to wait to get sick. I am sick. With this said, I am now looking for an Oncologist, Pulmonologist, and a local dr to help me here when i cannot make the 2 1/2 hour drive to Seattle.

Last week I started experiencing mouth pain consistent with the pain that I felt with my PNP breakouts. My lips are bleeding and broke open. I have not been eating well as it hurts so bad. My mother made me some homemade soup and macaroni salad because she knows that I could get that down. She is so thoughtful and so sweet. Its almost like the PNP is only affecting my gum tissue right now. That means every tooth feels like its loose and about to fall out of my face. My lips are burning all day and I have to keep Vaseline on them again constantly. This blog is helping me track my progress and helping me put out how I REALLY feel about all this. What a crazy week it has been. All I can say is I have one goal for this week and that is to find my new team of doctors who are going to help me get through this. That is step one....

Baby steps.....
Baby steps.....