ID Doc and BAHA Infected Again

     I saw the Infectious Disease doctor last night who I absolutely loved.  He is very well trained and did a Respiratory Infectious Disease Training at the National Jewish Hospital where they actually have a PCD Clinic now.  He has even seen other people with PCD!  That is indeed a rarity for me...there is something very comforting being under the care of a new doctor that is familiar with your disease and you don't have to spend time/energy educating them about specifics before they start treating you.  He is very knowledgeable about antibiotics, interactions, resistant bacteria, and all the complex things that concern me.  

     We started on an oral antibiotic called Doxycycline to cover the other bacteria growing.  The Pseudomonas is growing out now and we should know what drugs it is sensitive to tomorrow and the gram + could still grow out in the next couple of days so the treatment plan may change, but for now I've got some good bases covered to start with.  He was able to encourage me and reassure me about trying new antibiotics...I got a little emotional with him as trying new antibiotics is scary for me since the Vestibular (balance system) injury I had last time I was on IV antibiotics that led to my third Psychosis in May of 2013.  Jordan asked some good questions and I'm thankful he was here to clarify some things.

     This morning I saw one of the lung docs again and we are going to do Pulmonary Function Tests (PFT's) tomorrow to see how I'm doing compared to my baseline.  There is a number that tells you how good your lung function is called the FEV1.  At my appointment a month and a half ago that number was at 74%.  Over the last 4 years my baseline has gone from 85% to 74%.  "Normal lung function" is considered anything over 80%.  With how I'm feeling, breathing, and being so short of breath I am inclined to think my number will be lower, but there have been times when I felt horrible and it was up and times when I felt great and it dropped a few points.  

     My joint pain has been increasing with laying around...I woke up this morning and couldn't even move my left hand my joints hurt so bad.  I asked about getting a Rheumatology consult since I'm having such a hard time finding one that will take me on as a patient that is contracted with my health insurance, but there isn't one associated with this hospital and my doc said a consult is very hard to come by.  We are looking into getting some sort of supplemental insurance or something that will help ease this burden, but please pray for wisdom and direction and protection while I'm waiting to get treatment.  There is a pain med called Tordol (sp?) that has anti-inflammatory properties that they are giving me every 6 hours so I'm hoping this will help the sharp stabbing pain in my left lung/side/shoulder and also the joint pain.

     And yes, you read right in the above--my BAHA hearing aide post is getting infected again so my lung doc is ordering a consult with an ENT to deal with that and my sinuses that are also green and junky now.   

     Energy wise I am simply exhausted.  Just going downstairs to the garden (very slowly) and sitting outside for a few minutes, then coming back up I was leaning on Jord for support and feeling like taking a nap when I get back to my room.  

     One upside to the hospital is HGTV, the Food Network, and TLC which has the Duggars on from 19 Kids and Counting so I'll get to see Jessa's wedding air!  The little things, right?  :)

Well, my wrist and hands are hurting typing so I'm gonna sign off for now, but hope you all have a great Sunday afternoon!  Thanks again for all your prayers, love, and support.  Jord and I really appreciate it and most of all I am thankful for my sweet Savior, Jesus, who sustains me every step of the way and has given both Jord and I His precious peace from above that transcends all human understanding.  

In His Mighty Grip,
Rachelle :)