Day 39

  Well good news.....I  have been referred back to my Pulmo (lung) doctor, and Since going going back on the medication I have continued to cough up bits and pieces out of my lungs so hopefully this is working AND going to kick it's butt. I had a bad afternoon/evening last Tuesday and didn't want to go to the ER and TRY to explain ALL this to a new group of people,especially since the specialist had my entire binder (with all my bloodwork/xrays/CT at his office) to review before my visit last Friday.So I chose to take some advil and go to bed early and felt a little better in the morning.My specialist did order a chest xray the next day and things seem to okay no bronchitis or pneumonia,so its just this darn aspergillus hanging on.

   I will also be having a 3 month repeat mammogram and sonogram at the end of the month to see if things have stayed the same or gotten larger since biopsy has not been able to be obtained as of yet,again from the lung stuff.

day 33

Today started off well but then started feeling really run down and had some more than usual 'heavy' feeling in my chest this afternoon.  I spoke to my pharmacist the other day and he says I should not stop taking the medication, he still thinks it's Aspergillus, they may just have to redo tests to verify which one. I didn't have the guts to tell him I had stopped the meds because new infectious disease dr told me it was okay to do! So I restarted last night I hope that doctor didn't make a bad decision for me and make this all worse. I should have had him prove to me it was something else before I stopped it. Oh well, hopefully LIVE and learn from this!

day 26,27 and 28

Monday,Day 26 started off with a bad migraine which forced me to take my imitrex that then made me nauseated and or throwing up for the remainder of the day.Then woke up Tuesday with another frontal sinus headache for which I stayed in bed all day and only ate at 8pm to take 4 advil followed by 2 extra strength tylenol, when they failed.to work their magic. I managed to have a cup of coffee and an egg salad sandwich today so far and still the headache lingers......I have follow up with specialist next Friday. Good grief really need some easing up of this stuff, today is beautiful outside and I want so much to enjoy it.

day 20,21

   I had one of those 3 1/2 hour naps again yesterday, I was up for about 6 hours came home and out I went. I hope I am doing the right thing by not taking my medication. It's a little scary, what if I get worse? The 'new doctor' doesn't even know what to do for me, and I won't be seeing him again til Jan 6th. The good Lord I believe is trying to get me to learn the word  PATIENCE and so far I am not doing too well. I have been faithfully inhaling the salt therapy for about a week now, not sure if it's helping but will continue it. I am also starting back on my iron pills because I am getting tired again so easily.

 I have not gotten any Christmas cards out, sent out any pkgs and am not done with my Christmas shopping as of yet,just don't have the spirit or strength. I LOVE Christmas,it's my favorite holiday, it just feel right this year for some reason.Hmmmmm

day 19.....hmmm back to square one?

     Well had the appointment with infectious disease doctor, who isn't convinced I have Aspergillus, let alone all 3 strains.His words were 'If you had all 3 strains you would be dead by now, or you are truly one in about a million to make it this far' So I am happy he took me off said liver damaging medication, but am still at a loss to what we are now up against since 3 different labs confirmed, I in fact DO have aspergillus. Who am I suppose to believe now? He ordered about 7 or 8 blood tests and said he needed to thoroughly devour my chart over the next 2 weeks and order hard copies of my x-rays and chest Ct to look at with his own eyes. He said 'I am a very simple guy and will be very up front with you, I am VERY concerned about these nodules in your lungs they speak of.'

  I then went directly to lab and got the new labs done and ordered copies of all my labwork and x-rays and CT for him and will take to him on Wednesday. My concern is, I know you can have false positive tests but 3 of them? I received great news today from endocrinologist that the 2 thyroid nodules they biopsied were benign....yay!!! One baby step forward.

   I am now awaiting Ob-Gyn call to go over those findings,we have been playing phone tag today.

day 19.....and so my real journey begins

  My name is Lesley and I am 46 years old/young and the mother of 3 children (Katie-24, Alex-22, and Samatha-14.I live in the valley of California
 
  On my mother's 76 birthday this year (Nov 30) I was officially diagnosed with Aspergillus (it was known as Farmers lung way back when). I was kinda relieved that they had finally found out why I was so tired and short of breath, now maybe I could be on my road to recovery? Or so I thought. This disease has very little known about it and has shown very little mercy on those inflicted with it.It is very similar to what TB is like without being contagious though.

  Today I get to go to see a doctor of infectious diseases because my 'normal doctors' really didn't know what to do with me. They diagnosed it and put me on medication over he phone and have not seen or talked to me since.

  My hope is to help others or their families understand this disease. Everything on the web is scary crap and no real understanding of the disease. I have no idea if there are 'stages' to this disease or what my chances are to kick it's ass back to wherever it came from.

   I have 'tried' to put up a strong front as always,but have had a few nights contemplating the 'what if' scenario. Will I be able to see my 2 daughters get married? Will I see the birth of my not even thought of grandchildren? I guess that will all be answered in the next few months, or even today. What if I die? That's is when my other side says 'knock it off!' and I  go put on my big girl panties and pick myself up and I march on and read more and more information on Fungus and how to kick its butt, from the inside out.

  I am leaving now to go to the infectious doctor...........