Quick clinic update

I had CF clinic today to follow up from when I was on IVs.  My lung functions were up a little to 30% / .87L FEV1.  We talked about this range being my new normal (baseline) for lung functions.  Thanks virus, thanks a lot.  I shared with him what was done at Barnes for my transplant appointment, some of which he already knew.  I also received some clarification about my care with them post transplant and pre transplant while I am in Missouri.  They will be able to help me when in MO if needed and post transplant I will still see them a few times a year for other CF care on top of lung functions when Barnes wants them so I don’t have to drive the 8 hours for some parts of the regular check ups. 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