IV time again

Welp, I made it 4 months and 20 days since I was last admitted to the hospital. Which means it’s been 4 months and 8 days since my last round of IVs ended. I have been extra out of breath the last week and a half, give or take. Walking and bending over are making me more short of breath right now and it’s taking longer to recover and get my breathing back under control. I did lung functions on my home spirometer and they were down 5%. In March at my clinic appointment my FEV1 was 35%. Yesterday my FEV1 was 30%. I sent an email to my nurse yesterday with a copy of home spirometry results and asked for IVs and a prednisone taper. I hate admitting defeat and waving the white flag of surrender but it’s the necessary evil. I will be doing IV cefapime (IV push over 10 minutes) every 8 hours for 11 days. My prednisone taper will be 60mg for 3 days, 40mg for 3 days, 20mg for 7 days and 10mg for 7 days. We are hoping that by dragging out the end of the prednisone taper it will give a good burst at the beginning and then keep it in my system for longer to hopefully open my lungs up better. Prednisone hasn’t been working like it used to. Prednisone is to help combat the inflammation in my lungs and airways. I also have bad asthma on top of crappy CF lungs so it’s a double whammy. My lungs are very scared from CF disease progression and inflamed from asthma. Unfortunately you can’t reverse that damage so I have to work with what I have.

I’m only doing 11 days of IVs because we will be going on vacation very soon so I’m only able to do a shortened round of IVs and hope for the best. If I’m not feeling any better when we get back from vacation, I will call my doctor and we will work out a treatment plan. I’ve traveled with IVs before and it’s a pain in the butt so we’re squeezing in 11 days so I don’t have to travel with them. My IV supplies and antibiotics will be delivered this evening. Tomorrow morning I go to get my port accessed and labs drawn. While I’m at the hospital I will get a chest X-ray as well just to make sure I’m not dealing with anything extra since I have had some lung pain. I’ll go back to the hospital to get my port reaccessed (the needle has to be changed every week while accessed for IVs) and more labs next Tuesday. Hopefully this does the trick so I can enjoy our vacation. If not, I’ll push on through like always and have all the fun while we are gone and then come home and get going on another round of IVs most likely.

Nothing like ending CF Awareness month with a round of IV antibiotics. haha Although, I’m always aware of CF in my life and it’s inconvenience but that’s ok, it’s my life and I’m thankful to have the life I have. I’ll update next week after I do my home lung functions.

Until next time…

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

Be strong

Everyone wants to be strong for those around them.  This may be magnified when it comes to someone with a chronic illness.  You spend a lot of time telling everyone you are “fine” when they ask how you are because if you said how you really felt all the time people would feel sorry for you or think you were faking.  You automatically want to be strong for those around you.  You want them to be okay.  You don’t want everyone to worry about you.  Your thinking is that everyone has their own life to worry about and worrying won’t fix anything.

The other side of the coin is that you want to know that your situation affects them and that you are thought about in regards to your health.   There are times that you cry alone because you are scared.  You don’t want to show anyone that side because you don’t want them to be scared for you.  Sometimes you just want to throw a pity party because your life sucks having to deal with all the health crap.  After your pity party/freak out moment you pick yourself up, dust yourself off and keep going.  Being strong is not always easy to do but if you aren’t a fighter your illness will win  Fight until your last breath!

Continue reading