Appointment with Allergy Doctor

Today I had an appointment with the allergy doctor to discuss injectable asthma biologis, which is asthma shots. I have had asthma since I was a kid. It has really been bothering me for probably the last year. After getting my most recent labs and lung functions, along with my previous allergy skin testing from back in 2014 (I think) she decided to prescribe Dupixent. She gave me orders for additional labs to check my eosinophils level, a few immunoglobulin levels, pneumococcal titer and tetanus titer. I filled out the paperwork to get the Dupixent approved by insurance. The Dupixent company will mail the medicine to me when it is approved. It could take up to a month to hear if it is approved. I learned that Dupixent is not only for asthma treatment but also for nasal polyps. I had many sinus surgeries for polyp removal as a kid. My last sinus surgery was in 2001, I was 21. During the last surgery they also made “windows” in my front bottom sinuses. Basically they drilled holes in the bone to make drainage easier so they wouldn’t get packed again. It was a rough recovery from that one. My face hurt for a long time after. My sinuses have doing well since that last surgery. The Dupixent will also help with inflammation in my sinuses as well as inflammation in my lungs. The hope is that the Dupixent will decrease my wheezing, tightness and shortness of breath. I would love for that to be the case. I’m over always being out of breath and my lungs feeling tight. I do have crappy lungs anyway with 35% FEV1 but any help is appreciated. When the Dupixent is approved I will call the allergist and make an appointment to have them show me how to administer it.. It is similar to how an epi pen works as far as it being in a “pen” and you inject it in your thigh. It is every two weeks. Here’s to hoping the approval is smooth sailing!

Now for an update from my last post when I was sick. I finished the oral Levaquin on Saturday and finished the prednisone on Tuesday or Wednesday. I am feeling better thankfully. I guess I’m back to my normal crappy. For now, no home IVs! I’m due to see my CF doctor again in the beginning of March for a regular 3 month check up. As always, if I need to be seen before that I will call. I’m hoping I don’t need to call of course.

We just got home from visiting family and friends for the last 10 days. It was great seeing everyone but man was it nice to be back home and able to sleep in our own bed and just to be back in our own space. We sure do love East Tennessee. I’m thankful the Air Force brought us here. I think that is all I have to update. Thank you for all your love and support as always!

Until next time…

Hating my lungs

As I sit here doing a breathing treatment, which includes the vest along with DuoNeb, Budesonide and Pulmozyme, I think how stupid all of this is.  I know it’s what I have to do but the vest makes it so hard to breathe when I already don’t feel like I can get enough air in.  Let me rewind a minute…I called my doc for a prednisone burst/taper for my severe tightness and wheezing.  I finished my taper of prednisone yesterday.  I’m not feeling better so I called back and asked for antibiotics.  I started oral Bactrim and Levaquin yesterday.  I have a CF clinic appointment on Thursday so we shall see how I am then. Continue reading

3 weeks of IVs complete

I finished 3 weeks of IVs earlier this week.  I do feel better than I did BUT I’m still having coughing attacks.  I’m attributing it more to asthma though.  I was offered prednisone at clinic on Friday (yesterday) but I declined for the time being.  I’m going to hold off and see if treatments and such can help.  We all know how much I love prednisone, NOT!  My lung functions were the same at FEV1 .96L/34%.  My first two attempts were 33% and my last one was the 34%.  I will follow-up in 6 weeks. Continue reading

IVs it is

When I was at CF clinic on the 2nd, I asked for oral antibiotics hoping I wouldn’t need IVs.  Sometimes (not too often anymore) I can get by with orals instead of going straight to IVs.  With my line of drugs that don’t work I’m limited.  Well I had to call them back because my cough and wheeze were still hanging around.  I asked only for a short burst of prednisone hoping it would help.  You guessed it, I had to throw in the towel and ask for IVs because my cough was persistent and the amount I’m coughing up has increased.  I went for lung functions and they were down a little (FEV1 34%/.98L).  When compared to my last set of lung functions they are down 4%. Continue reading

Spring cleaning of sorts…

I went to see my CF doctor today on national doctor day…haha.  I was there for a sick visit not to wish him a happy day.  I have been coughing more, especially at night which sucks.  I wanted to be seen and get on something before it gets too bad especially with it being a holiday weekend.   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

Gallbladder is out!

Yesterday was surgery day for my gallbladder removal.  My gallbladder has been bothering me for a few months if not longer.  I had lots of gallstones per the ultrasound.  On the ultrasound, it was also constricted like it does when you are eating when it wasn’t supposed to be because I hadn’t eaten for at least 8 hours.  Then was the hyda scan which  is where they inject a nuclear substance through IV and wait for it to get into your system so they can see the things they need to see.  The hyda scan took longer than it should have because my gallbladder was playing hide and seek, it wasn’t showing up within the hour like it should have.  I had to go back for more scans/pictures an hour later and if it hadn’t shown up so slightly at that point I would have had to wait 3 more hours!  Thankfully my gallbladder showed up ever so slightly but good enough to show that it wasn’t cooperating.  When I saw the surgeon 2 days later there was no debate, it was coming out.   Continue reading