Not what any of us expected

Today I talked to my pulmonologist who finally received the results of my lung biopsy from Mayo in Arizona. Even my pulmonologist said this was not what she expected. Basically it boils down to 3 things. 1. I have LAM that is now confirmed- we pretty much already knew that. 2. I have small airway disease related to being exposed to some kind of contaminant or aspiration or being in /from Southeast Asia. 3. I have severe pulmonary vascular disease. Many of the arteries are virtually occluded by old organized thrombi/possibility embolic pathology. So what this means is LAM is the least of my concerns now and I need to go to Mayo -somewhere- and see higher level of specialist not even so much related to LAM at this point. Well, never dreamed I had all this going on inside me. I tell you the truth it is by the grace of God and nothing else that none of the clots have broken off over the years (chronic) and gone to my head and caused stroke. Some of the signs of this vascular disease are dizziness, fatigue, and shortness of breath. I have all 3. Some medicines can help this- but there is no cure. They aren't sure what is causing this as it appears not to be related in any way to LAM. Could have started in my lungs and just growing or the clots could have come from other places in my body and just inhabiting my lungs. Amazing really. Who would have guessed. The awesome Dr. from Cincinnati called me to work through the next step with me and although I am still not his patient he is currently going to get with his team up there and look at all my info and go from there. You couldn't ask for a better Dr. I do so enjoy my local pulmonologist too she too is good; I like her. So- what next? Who knows. Still trying to wrap my head around this. I had more blood tests today and probably will have more in few days. They are trying to figure out what tests I should get but will start with a VQ nuclear scan of the lungs to determine extent of damage/occlusion in the arteries in lungs. I am going to have to start taking blood thinners (a kin to rat poison oh joy ) every day. Again, still on a road I do NOT want to be on. However, the Lord is in control and he can see the other side of the mountain as I can not. He knew this was coming and is not surprised. He is right beside me and all is okay. Knowing it is impossible to please him without faith, I will remain strong and believe in his promises. It's all good. Was a little sad earlier, now I think I am just tired. Did I tell you my allergies were sooooooooooooooo bad the last 3 weeks, finally yesterday I called my PCP and he let me come in and get a Kenalog shot (steroid) to take my immune system which was going haywire. Within 1 hour of shot, I started to tell breathing was becoming easier. I had been taking OTC sinus meds every 4 hours for days and Zyrtec daily. I could tell when the 4 hours was up as I couldn't breathe, sneezing, water eyes etc. etc. Well I got 8 good hours after shot and then woke up in middle of night with same symptoms. I took some more meds today, but not as much as have been. Apparently tree pollen is off the charts, but I have been bad before they started climbing. Not fun. Glad to finally get some relief. I did get some Flonase as that always helps. Well I can't think of anything else to tell you. Think that says it all for a bit. :) Hope your day is wonderful and sunny and breathing is easy! Blessings. Proverbs 16:24 Gracious words are a honeycomb, sweet to the soul and healing to the bones.