Tag Archives: levaquin

In lock up I go

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I had a telehealth appointment with my CF doctor this afternoon because I’m not feeling any better on the oral Levaquin and prednisone taper. I did do home spirometry (lung functions) before my appointment so we knew where I stand as far as my numbers go. They are down to 27%. I made the decision to be admitted and get started on higher dose IV solumedrol (steroid) and IV antibiotics (possibly zosyn and amikacin). I had a few options to choose from as far as going inpatient or trying IV zosyn at home and continuing the prednisone taper. If I went the route of trying IVs at home and was no better come the beginning of the week I would end up going inpatient to do IV solumedrol and possibly change or add IV antibiotics. So I decided to get it over with now verses waiting another 5 or so days to most likely be admitted in the end.

I just got to my room. It’s shift change so it will be a little bit before my real orders for solumedrol, breathing treatments and IV antibiotics are in the system and get started. They will access my port once antibiotic orders are in the system. I did a breathing treatment before I came knowing it’s a slow process getting things going in the hospital.

It is very hard for me to throw in the towel and willingly be admitted. I’m not a fan of being in lock up. I’m very consistent in my treatments, IV times and taking my oral meds on time. I’m a little bit of a control freak (regimented) when it comes to my medical care and wanting things to be right. When I’m inpatient things get off with IV times because obviously I’m not the only patient they are taking care of. It’s hard for me to hand over that control. Being inpatient also takes a toll on my mental health, especially in the summer, my favorite season. I want to be outside in the sunshine doing things and not stuck in the bed. Heck, just being free to go eat lunch at a restaurant or window shop is a luxury that isn’t lost on me.

Taking care of myself is my priority. With that said, my mental health is also a priority. I know what I need to do but that doesn’t mean there won’t be a little kicking and screaming involved. I’m stubborn in a lot of things but I ultimately do what I need to do to get better. I will update tomorrow with more details on what things get started and how my busy night is as usual. Little sleep will be had I’m sure.

Until next time…

Welp, I’m back again folks

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After getting the shot of solumedrol in my booty at the primary care doctors office on Monday afternoon I started taking the Bactrim that night and started the prednisone taper Tuesday morning. I have been very short of breath, more than usual. I sent an email yesterday afternoon to my CF nurse asking to go up to 60mg of prednisone and tapering from there and hope that I could get some relief. Well of course my doctor is out of the office on vacation and it’s a holiday weekend. She asked if I could call my primary doctor and ask if she would call in the upped prednisone taper. First thing this morning I put in a message for my primary doctors nurse. She called me back around noon. My primary doctor is out of the office with food poisoning AND the nurse practitioner is on vacation until next week. So back I go to my CF nurse. I left a message for her asking if there was anyone that could write the prednisone prescription. She called me back and of course everyone is out of the office until next week, after the holiday, except for one nurse practitioner. Thankfully that nurse practitioner called me and we discussed what I thought I needed and what she was thinking. She is adding oral Levaquin to the mix (yay, not!) because she doesn’t think Bactrim is the correct antibiotic. I will finish this course of Bactrim since I am already on it and it’s only a 7 day course. I’ll add the Levaquin tonight or tomorrow, whenever I pick it up. I will be starting 60mg of prednisone tomorrow morning. I will do 60mg for 3 days, 50mg for 3 days, 40mg for 3 days, 30mg for 3 days, 20mg for 3 days, 10mg for 3 days. If I need to adjust the prednisone and extend the higher dose, I can do that on my own.

Unfortunately, prednisone doesn’t seem to help open up my lungs/airways like it used to. It’s the same thing as far as antibiotics go. I’ve had to use both prednisone and oral antibiotics so often for the past 43 years that’s it’s a given that they won’t work as well over time. Starting the Levaquin and higher prednisone is to get me over the holiday weekend and hopefully get some relief and get to breathing better. I avoid the ER like the plague, especially on a holiday weekend with my CF doctor out of town. That’s not to say that if it came down to it and I needed to go that I wouldn’t go, but there would be some kicking and screaming involved in that whole operation. It’s just very hard to get what you know you need while in the ER and/or being admitted when your CF doctor isn’t there speak on your behalf since he knows what has worked in the past and what our go to’s are. Holiday weekends in the ER are the B squad at times and by that I mean that a lot of times it’s people covering for regular ER doctors, as well as the pulmonary doctors. It’s frustrating to say the least for someone who like me who actually knows what I’m talking about.

I will follow up with my CF doctor on Wednesday when he’s back in the office and see how I’m feeling and what we think the next step needs to be. My CF nurse and I both agreed that my CF doctor isn’t going to be allowed to go on vacation over any holidays anymore just in case I get sick and need him, considering I ended up in the ER on Christmas Eve. I’m just kidding of course because he is allowed to have a life outside of being my doctor. haha. I’ll keep you posted.

Until next time…

Appointment with Allergy Doctor

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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

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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

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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 →