Tag Archives: zosyn

My body is rebelling yet again

Posted in Blog Life by

Last Monday sharp pain started on the right side on the front of my chest. I carried on with my transplant appointments on Tuesday. The pain got worse as the week went on. I powered through our very busy weekend with friends in town. Sunday morning I sent the “white flag” message into my CF clinic diagnosing myself with pleurisy and asked for antibiotics and prednisone. Ya know, if I had my own Rx pad it would save me a lot of time sending messages to my CF team and at the doctor’s office for appointments. Pleurisy is inflammation of the area (pleural space) that separates the lungs and chest wall. The pleural space is usually filled with a satiny liquid that allows your lungs to expand when you breathe. If that liquid is not there and there is inflammation/swelling, they rub together like sand paper that causes pain when breathing. Since I can’t take a break from breathing, the pain is always there until the pleurisy resolves. The pleuritic pain is sharp/stabbing pain with deep breaths, coughing (ouch) and sneezing (double ouch). 10/10 would NOT recommend!! Treatment for pleurisy is pain control and treat any underlying infections that may be the cause.

My nurse called me this morning to tell me she wasn’t ignoring me but that she was trying to figure out who could see me because my doctor was cruising somewhere in the pacific at the moment. Of course he is. It never fails, when I actually need to be seen because of an exacerbation (actively sick) or end up in the hospital he is on vacation. haha. She said she did hear crackling in both lungs.

One of the nurse practitioners was able to see me this afternoon. We decided that I’ll do 14 days of IV antibiotics (Zosyn 4.5g every 6 hours) and a prednisone. I’ll get labs drawn each Monday until finished with IV course. We go to Cancun VERY soon so this will get me 14 days of antibiotics in my system with a few days between finishing and leaving for Mexico. It seems like this is par for the course when it comes to my body not playing by the rules, especially when I have a vacation in the very near future that I’m trying not to sick for and not be miserable for.

Update on the burning in my leg: My left thigh (femur) has had a burning sensation since I received the Reclast (osteoporosis med) infusion December 11th. Most reactions to Relcast present in the hip or jaw and for the most part resolve in about 2 weeks. I apparently like to be in the “less than 1%” club when it comes to side effects. Once again my body likes to keep my medical team on its toes. I did get a X-ray of my left thigh, it showed NO abnormalities as expected. Next step is a MRI which I’m waiting to hear when that is scheduled for. They are checking for avascular necrosis which is the death of bone tissue due to lack of blood supply. Common causes of AVN is extended use of high dose steroids, extended excessive amounts of alcohol consumption and long term use of bisphosphates (like Reclast, Prolix and Fosamax). I have taken high doses of steroids but not extended use. I’m not a drinker. I took Fosamax for the recommended 5 years and only had 1 infusion of the Reclast. So who knows where this pain is truly coming from. I would just like it to stop or at least be controlled and be more tolerable. It is so uncomfortable sometimes that I can’t sit still be I need to be moving (which is not ideal when in the car) so that I’m not thinking about it 100% of the time. So we shall see what comes of the MRI.

Until next time…

Day 2 in lock up

Posted in Blog Life by

I didn’t get much sleep last night per the usual with it being the first night and not getting here until shift change (7pm). Getting all the orders in and going takes awhile. Everything is staggered when things get started at random times throughout the night. I did get started on 60mg of solumedrol last night as well as both IV antibiotics, amikacin (every 12 hours) and zosyn (every 6 hours, infused over 4 hours each time).

I had a chest CT this morning and I just asked my nurse if there was any report in the computer from radiology. It didn’t show any new pneumonia or much change from my CT when I was inpatient in December. It did show bronchiectasis, which one had for awhile. Bronciectasis is when the airways (bronchi) are thickened and damaged making it harder to move air easily. It also showed narrowing of the upper lobes which isn’t new either. The issue going on now is a lot of asthma with a side of CF. It’s aggravating the CF bugs in my lungs and all the other things as far as the scar tissue and irreversible lung damage that’s already there.

They drew a amukacin peak and trough, before and after a dose to check the level in my system to make there’s not too much. Since I’m on amikacin they did a hearing test because it’s in the same family as tobramycin which is an aminoglycoside which hearing loss is a side effect. My hearing test showed that I’m not hearing high pitched sounds that great but all the other levels are good. They will continue to monitor my hearing while I’m on amikacin. I also did lung functions. My FEV1 was 29%/.80L. They were 27% on my home spirometer. So I would call it steady with no loss. Different PFT machines show different values but as long as they are steady and consistent that’s what matters.

They did start me on another inhaled medicine, revefenacin (once a day) which is used to control wheezing, shortness of breath, coughing, and chest tightness. It can be used in place of duoneb (atrovent/albuterol combo) which I take. I chose to do both the revefenacin and duoneb in hopes that I can put as much in my lungs to hopefully get me open. That’s basically the update for today.

This is going to be a long boring weekend in lock up as usual. Nothing gets done on the weekend as far as any testing or new orders unless it’s necessary. I’m hoping to do lung functions again on Monday and fingers crossed there is some improvement and that I actually feel more open and not as short of breath. With that said, if there is improvement I’m hoping to be home Tuesday or Wednesday but of course I’m not holding my breath (literally and figuratively). I’ll update tomorrow if there’s anything to update about which means don’t freak out if I don’t post until Monday evening after lung functions and seeing the pulmonologist during rounds on Monday.

Until next time…

In lock up I go

Posted in Blog Life by

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…

21 days of IVs done

Posted in Blog Life by

I did 2 weeks of IV Zosyn and was still not back to baseline. My lung functions had dropped from 35% at the beginning go IVs to 31% at the 2 week mark. We decided to do another week hoping to get over the hump. IV Zosyn is a bit daunting at every 6 hours but I manage. It wears me out to say the least. I sleep at every chance I get. I am able to “bump” my doses an hour either way which helps me get a little more sleep at one time. I’ve mastered it over the last few decades. At the end of 21 days/3 weeks my lung functions hadn’t come back up to where they were when I started IVs. I was at 32% at the end of IVs. With all that said, I am feeling better for the most part. I am however coughing a little more and coughing more up. I say better out than in! So it’s a good thing.

We had talked about putting me inpatient for IV colistin which was the one that messes with my kidneys and sent me into acute kidney failure a few years ago. That being said that is the reason they want me in the hospital for it because they would want labs everyday and be at the ready for extra IV fluids if needed. We decided against that for now. I may have to revisit that in the future when I get sick the next time (have a CF exacerbation). Yes, I say WHEN because it’s inevitable…it’s life with CF. I have another chest x-ray on February 16th to see if the pneumonia is gone. Hoping it is. If it’s not we will have to revisit IVs again I’m sure.

I barely made it through January emotionally speaking. This year my mom’s passing anniversary was harder for some reason. I found myself in bed more. Being sick on top of it didn’t not help either. I hope I’m coming out the other side of it now. My birthday is Monday which I always celebrate gladly unlike others. haha. I love getting older! Every birthday is a great milestone in my life. Especially since I am now past the “life expectancy” for CFers. I am always happy I made it another year. I might post on my birthday, I might not. Just depends on how nostalgic I am feeling…haha.

Until next time…

IV antibiotic time

Posted in Blog Life, Health update by

I have been sick since my birthday, so 2 weeks now.  I tried oral antibiotics which didn’t help.  I threw in the towel and called my nurse to get IVs started.  I had a “sick visit” today since they wanted to see me and get lung functions done.  My FEV1 was down a bit to .91L/33% (last time was 36%).  I’m having more shortness of breath, fatigue and cough.  It’s been a long 2 weeks of being sick and not feeling good.  After seeing the doctor I went to the infusion lab and got my port accessed and had labs drawn.  Now I’m just waiting for meds to be delivered so I can get started.  I’ll be on IV Zosyn every 6 hours for 2 weeks.  Hopefully 2 weeks is all I need.  I think that’s all.

Until next time…