CF clinic day

Today I had my 3 month check up. First stop was the lab for my yearly labs. I managed to con my nurse into waiting on my glucose tolerance test for awhile. I hate that test. It upsets my stomach and sometimes gives me a headache from all the sugar. Plus being stuck 3 times in the hand (my arms are too scared for blood draws) in 3 hours sucks. Next stop was pulmonary function lab..My lung functions were basically the same. My FEV1 was 39%/1.08L. Last time was 40%. So holding steady is good. Last stop was clinic…oh yeah I was weighed in the pulmonary lab and I have lost weight which is good. With Trikafta I gained a lot of weight. I think I’m down about 10 pounds. I’ll take what I can get! I haven’t really been trying that hard. I did start calorie. counting and watching my diet but I saw that I was rarely going over my allowed calories so I stopped counting. haha. My doctor said my lungs sound good and I look good. My oxygen company contacted me to let me know it was time for my reevaluation to see if I still need oxygen. I haven’t used oxygen in about 2 years so I will be saying bye to my concentrator and portable oxygen. I’m ok with that because I wouldn’t fail the 6 minute walk showing I need oxygen. I just liked having it as a crutch just in case I was having a bad day. I can always get it back if needed. I see him back in 3 months for another regular check up. Now I just wait for my lab results.

Until next time…

Cough cough cough

Well first of all my side pain is gone! It could have been GI (intestines) related because I did a “clean out” just in case and it seemed to help the pain. It didn’t take it away but it was less. What’s a “clean out” and why did I do it? A “clean out” is when I drink lots of miralax to get the poo moving in case there was a blockage starting. If a blockage gets bad enough it can require surgery. No thank you! So all is well in that area now, thankfully. 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

Things I hate/miss

As I was walking the dogs around the block today with my oxygen on my back I got to thinking about all the things I miss being able to do.  With progression of CF, your independence slowly gets taken away.  It is a major mind battle and the depression takes a hit when you think about all the things that are “taken away” from you. Continue reading

Thank you for all of my donors!

This is what a $500 battery for my POC (portable oxygen concentrator) looks like. Yep $500!!!! I have to have 2 of these for the trip to Hawaii. Per FAA regulations, you have to have 150% of battery life compared to your flight/layover time. I had to be approved by Delta to fly with my oxygen. Then they dropped the bomb that I needed 2 double batteries (a total of $1,000) OR a double battery and 2 single batteries ($500 + ($325×2) = $1,150). One double battery gives me about 8-8.5 hours at 2 liters. One single battery (which is what came with my POC) gives about 4-4.5 hours of 2 liters. Thank you to everyone who donated to the lung fund for allowing us the means to buy $1,000 worth of freaking batteries.

If you would like to donate we would greatly appreciated it.

You can donate to http://www.gofund.me/shannonigans or to http://www.paypal.me/shannonigans.

Thank you to you all for all of your love and support!!

Until next time….

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Just a little update

Today is day 25 of IV Zerbaxa, counting from day one in the hospital.  I was switched to oral Levaquin from IV when I was discharged from the hospital 14 days ago.  I tolerate IV Levaquin way better than oral Levaquin.  Levaquin makes me super nauseous therefore I am nauseous most of the time.  My stomach is super sensitive right now so I’m trying to eat lightly.  I’m trying to eat things I ‘think’ will be smooth on my stomach but it doesn’t seem to be working all that well. haha  Continue reading

The next chapter: Life with Oxygen

Today was a day that I have not looked forward to happening in my journey in life with CF.  The day that oxygen was delivered to my house for 24/7 use or even only night time use.  I have always thought that when this day happened it meant “I was getting sicker” and that my life was on a downward spiral of CF progression.  In my life there have always been milestones that have signified different steps of CF progression to me.  Not everyone thinks the same as I do, this is just me. Continue reading

Home Sweet Home

After 16 days in lock up I am home.  It was a long 16 days.  The first 10 or so days of my stay I was sick enough that I didn’t care that I was there.  Yes of course I wanted to be with my family at home but I knew I needed to be there to get better.  On day 7 I had a bronch which was followed by days of a lot of pain and major tightness and wheezing in my airways.  So needless to say my asthma went crazy and I had to put up with it and it was NO fun!  It took upping prednisone to 80mg per day (40mg in the AM and 40mg in the PM) to get the tightness and wheezing to lessen to a tolerable state.   Continue reading

Hard nights make for so so days

CF doc came in around 2pm (smart man coming in after noon). I always feel better when they come in. I made sure that they have final say on any and all things that are changed and/or added for my treatment while in here because I see so many different doctors while inpatient. I am happy to report that they do indeed have final say. He told me not to worry about that. Continue reading