Coughing hazards

Interesting title?  Let me explain.  I was at a friends house on Sunday evening sitting on a bar stool at her kitchen island chit chatting with her while she was cooking/baking.  Along comes a coughing fit.  A doosey one where I see stars and shake.  Well this one went a little farther and I blacked out for a second and fell out of the bar stool straight on my face.  Yes, you read that right.  Pictures below… Continue reading

New CF drug!

New CF Combo Therapy, Symdeko by Vertex, Approved by FDA for Certain Patients

Vertex Pharmaceuticals announced that the U.S. Food and Drug Administration (FDA) approved Symdeko (tezacaftor/ivacaftor and ivacaftor) as a therapy for cystic fibrosis (CF) patients carrying two copies of the F508del mutation in the CFTR gene (the gene defective in CF) or with one mutation that responds to tezacaftor/ivacaftor. Continue reading

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

(Pre) Transplant Appointments

I arrived to St. Louis Sunday evening.  My sister joined me early Monday morning since she was coming from Kansas City and me from Knoxville, TN.  I must have someone (caretaker) with me at all my transplant appointments, it’s part of the deal.  Luckily I have people to rotate, haha. Continue reading

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