Impromptu clinic day

Well my 2018 has been shitty so far, literal and figuratively speaking.  Not that you cared to know that.  I got that virus around Christmas weekend and it seems to have found a happy home in my body.  I have been super short of breath just walking and even sitting therefore I have been using my oxygen pretty much 24/7, unless it doesn’t reach where I’m going in the house. Continue reading

2017 at a glance

2017 was a rough year.  It had its ups and downs.  In January I had transplant clinic which was good.  I’m holding steady according to them.  I see them, at Barnes Jewish in St. Louis, once a year to check me out.  January also brought the 1st anniversary of my moms passing which was hard.  I still miss her every day.  The hole her death put in my heart will never be filled.  I was on IVs in February, April, May, July, August which lead to being in the hospital because of my creatinine (kidney level) being elevated again.  I had my gallbladder removed in September and did a week of IVs after surgery as a precaution.  More IVs in November and then this whole virus/bronchitis/CF exacerbation or whatever it is in December that put me in the hospital for a few days.  Man that’s a lot of IVs! Continue reading

Virus hell

I started having viral symptoms on the 22nd)…fevers, body aches, chills, horrendous cough, horrible chest pain from all the coughing, shortness of breath, etc. I finally had enough yesterday and had to go to the ER. There was no CF clinic for me to be seen in this week so ER it was. I tested negative for the flu which I was exposed to. My chest X-ray showed no changes and no pneumonia, all good there. Labs showed that my white count was elevated so my body was definitely fighting something.  I was started on IV Zosyn and oral Levaquin. I didn’t get to my room until 9pm.  I did lung functions while in the ER and my FEV1 was down 10% to 28%.  That’s a decent drop.  This virus or whatever it is a doozy. Continue reading

Clinic appointment today

After 3 weeks of antibiotics, I am not all the way better.  I still have an annoying cough that wakes me at night.  I cough so hard that I see stars and almost see black…not cool.  Today’s appointment went as follows:  Vitals (all good,  O2 was 96 on 2L), My lung function was FEV1 of 38% / 1.08L which is still stable.  Stable is good when it comes to lung functions. Continue reading

3 Weeks of IVs down

Just a short update:  I finished 21 days of IV Aztreonam on Monday.  The Levaquin was not extended which I am grateful for.  It causes me lots of arthritic pain and makes moving around painful in my joints, all over.  As for how I’m feeling now…I’m decent enough.  I still have a dry sounding productive cough.  I will keep an eye/ear on it. Continue reading

I Remember When

I remember when I could do a lot of things that I am unable to do now.  Unfortunately, that is only going to get worse as time goes on and my lungs get worse.  It is a major mind trip when you want to do things but your body won’t let you or your mind won’t let you because it knows your body can’t.  If that makes sense. Continue reading