Today was CF clinic day for follow up from the hospital 2 weeks ago. Since getting out of the hospital the pain in my right front side has not gone away nor lessened. I’m still very worn out and out of breath. Definitely not better by any means. 

Fast forward to today’s clinic appointment. As I suspected, my lung functions have not improved and have actually dropped a little more. Today my FEV1 was 30%. My first two attempts were 28% and 29%. Last clinic visit when I was admitted they were 33% if I remember correctly. My weight is down a little but I’m still good on my BMI but of course they would like me to have extra weight on for times like this when my body needs to fight infection.

After discussing all of my symptoms and the lung pain and the fact that I’m still no better they decided they wanted a chest CT with contract to check for pulmonary embolism (blood clots). They were also tossing the idea of possible pulmonary hypertension which is basically my heart having to work to hard to oxygenate my body. Another thought was a pneumothorax (collapsed lung). They wanted to do a chest CT with contrast. That meant that I had to get a periferal IV (short term one in my arm) for the contrast to go through since my port is NOT a power port which contrast can go through. Two attempts on the IV, second one was good. My veins suck big time. Hence the reason I have a port and love it!!! The chest CT came back as an abscess on the right side where my pain is. An abscess is basically a ball of infection that is much harder to treat because it’s like it has its own little infection house with something surrounding it keeping it in tact.  It makes sense that that is where my pain is and why the pain isn’t going away.

Now on to how to treat it and what we are going to do about it. I am being admitted yet again.  Tonight I am being admitted to the medical critical care unit (med CCU) so I can be closely observed while I start a new antibiotic. I will have to fill in the blank of the name of the antibiotic because I can’t remember it at the moment. The name of the antibiotic is Zerbaxa (ceftolozane-tazobactam). The medicine is actually newer to the drug market and is in the cephalosporin family. Once I pass the test and tolerate the new drug I will be moved to the regular CF floor. Also after a few days on the new drug they will add Colistin to the mix. They want to give my kidneys a little break after having the contrast today which can be hard the kidneys. After my acute kidney failure last April they are very careful on what they do when it comes to my kidneys and monitor my kidneys very close which is good. I believe I heard the doc say I would possibly be on these for 4+ weeks. It is going to take a lot longer to fight this nasty pseudomonas ball in there. Whatever it takes to get me better I’ll do because this sucks. They also did an ABG (arterial blood gas) to measure my CO2. Two sticks later we had blood and my CO2 was ok

We did talk transplant today as well as far as which center they like/prefer, AirMed flight to whichever center I’m listed at for when I get “the call” and starting the evaluation process sooner rather than later. I’m hoping once we get this abscess taken care of my lung functions will go back up and the need for oxygen will decrease and even go away. We won’t know until time passes and we are in the future. Haha. I had my husband come with me to clinic so he could give his outside opinion/view on things and he is my sounding board anyway. Plus he has a much better memory than I do so that helps.

We did talk to a rep for the Inogen Oxygen Consentrator company which has much better portable O2 options without the hassle of tanks. The rep was able to answer all of our questions and ease our minds on some things. They are a local company, as in they have a branch in Knoxville. They also have customer service that is located at said office so I won’t be calling India for customer service. Apria, who I have my oxygen through now is too big and their customer service has been outsourced. Inogen also has back up tanks which was another concern of ours for if the power goes out. Breathe a sigh of relief. So we are switching to Inogen. I’m learning as I go on the whole oxygen thing. I have had many people give me their opinion on what oxygen company to use and not use. We had to see what my insurance would and would not cover to be able to make an educated decision. We can’t fork out $3,000+ for a POC (portable oxygen concentrator) so we had to go with what insurance would cover. Now we know and feel much better.

I’ve been waiting for my bed to be ready. My husband went home to get my things. My nurse just called and my temporary ICU suite awaits me. I’ll end this here and will update tomorrow or Saturday when I know more and am hopefully in a regular room.

Thank you for all of your love and support. All prayers are welcomed too  I seem to need all the help I can get these days.

Until next time…