Thursday, February 28, 2013

Getting Back to Normal

It has been six days since my last antibiotic dose and it seems like I am back to my baseline.  No more headaches, which means my energy level is back up.  I am back to a more regular schedule at the gym.  And back in the pool since being PICC free!  I went to water aerobics today and it felt great to be back in the water.  Most important, my PFTs are back to baseline too.  My FEV one is back to 91%, just where I was in October.  It took a lot of work to get back there and it is going to take a lot of work to stay there.  But seeing a 15% drop in such a short time is enough motivation for me to keep up with all of my meds, treatments, exercise, and remembering to find time to rest.  All that is left is checking in with the doctor to hear his thoughts on the reaction to the medication.

Wednesday, February 27, 2013

Post IV Update

On February 5th, I started IV antibiotics for the third time in my life.  The treatment helped with my sinus infection and headaches, but not without a few complications along the way.  Initially, my treatment was scheduled for 14 days.  Around day 10 the doctors office checked in with me and I was not feeling any better.  Although the green stuff cleared up from my sinuses, I was still experiencing daily headaches, which were leaving me completely exhausted.  The doctor decided to extend my treatment for 7 more days.  It is hard to face a treatment not working.  

Around day 18 of my treatment, I started to notice that my chest would hurt briefly at the beginning of administering the medication.  This lead to my legs aching and ultimately a fever.  After contacting the doctor, we decided to stop the treatment early.  I was feeling so much better by then, we figured it was not worth the complications to have three more days of antibiotics.  With that my line was pulled on Monday and I have been feeling great ever since.  

But it leaves the question...why the fevers?  This happened to me last time towards the end of the treatment.  For now, I really don't think it is something that warrants worrying, but it does leave a small amount of worry about next time I need IVs. The doctor indicated that I may need to do IVs in the hospital next time to complete the whole treatment under observation.  Hopefully, that day is a long way off.  

Tuesday, February 5, 2013

CF Clinic Update

When I went into clinic on Friday, I knew I was not feeling my best.  The week before I had food poisoning, which took me nearly three days to recover from.  It left me feeling tired and with no appetite.  Also, during the course of the past couple months my sinuses have been giving me problems on and off.  The last two weeks I have been back to having headaches and pain, which propels an extreme exhaustion.  But through it all, my lungs felt great, so why then did I find myself with a 15% drop in FEV1?  As I stood there facing my lowest PFTs ever, I was determined to blow my normal range.  I tired my hardest and the numbers would not budge.  As I tried to reflect on why the sudden and surprising decrease in lung function.  I realized there were actually a lot of contributing factors:

I have not been implementing my normal exercise routine,
I have not been 100% compliant with treatments, and
Low energy was inhibiting my ability to put forth the maximum effort needed to do the test.

Looking back at these reason, I really should not be surprised by the drop.  Really this is a wake up call.  It is a reminder of how hard I have to work to stay ahead of this disease.  I cannot take my high PFTs for granted.  It is time to get back on track.

But before that, I will be starting IV antibiotics this week.  I go in for the PICC line today.  I really didn't expect IVs walking into clinic, but I know it is really the right course for "maximum medical therapy" as my doc calls it.

Wednesday, January 30, 2013

Joey Yerves- A CF Warrior, November 1, 1985 - January 29, 2013

I am having a hard time finding the right words to describe my feelings with the passing of Joey, a beautiful soul who lost his life to Cystic Fibrosis yesterday.  I initially made contact with Joey through facebook in 2011. He was waiting for a double lung transplant.  His life was dependent on new lungs.  I felt a natural connection to Joey because at the time he was living in the same city as me.  Within weeks of connecting, Joey received his call for new lungs.  It was a miracle really. Those lungs saved his life.  

Over the past year and a half, I have been able to get to know Joey a little better, mostly through facebook posts.  He was a unique soul. He started his own record label and recording studio DEEP BREATH RECORDS. Joey was an artist creating his own music, a lot based on this experiences with CF.  He loved cars and he had a couple awesome tattoos.  

Joey lost his life due to rejection of his transplanted lungs. I am thankful to have had Joey in my life.  He taught me to stay strong and be a fighter.  Take chances.  Just breathe.  

Love you Joey.  I'll miss you now and always.