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 

I was taking Zofran to attempt to combat the nausea which wasn’t cutting it.  I am now pre-dosing with Phenergan before taking the Levaquin.  In a sense, it just somewhat makes my nausea not worse than it is when I take the Levaquin.  I just have to keep telling myself “4 more days….4 more days.”  I still have to take my dose for today.  Ugh!  My last day of antibiotics is set for Wednesday.

Now onto what you really care about….How am I feeling?  Well…That’s a good questions.

I am feeling better than I was when I went into the hospital.  I still have a long way to go if I am able to get back to where I was before this big hit to my lungs.  I personally don’t think I will get back to 50% plus in lung function but I could surprise myself.  I think if I have any increase from the 30% where I was when I went into the hospital last time, I will hang out in the 40%’s somewhere.  As long as I can function in life and do most everything I want to do without too much struggle, I’m ok with that.  I say ‘too much struggle’ because at this point in my journey with cystic fibrosis there will be struggle.  I just have to be ‘ok’ with where I am so I can continue on and not be angry.

I get worn out very quick.  The weather this past week has been beautiful which has helped my depression and making me want to actually do something and be productive.  Unfortunately, that means that I am worn out and drained very quickly.  When you add in the nausea on top of being worn out, it makes for some not so good days of laying on my left side attempting to make the nausea go away, with no success most of the time.

I have been taking spurts without oxygen when my sats are in ‘ok’ range.  I was able to get a POC (portable oxygen concentrator) which makes being out and about much easier.  This means no more of the oxygen tanks that last only a few hours at 2 liters.  My POC can go about 4 or so hours (on a single battery) but I have a car charger so that I can plug in and charge it on the go as well.  It makes my life easier.

Now onto transplant talk.  We have talked with my CF team and asked them lots of questions, done research, asked for personal stories from people who have been transplanted and talked with people who are listed.  I just have to tell my CF care team which transplant center(s) I want to be evaluated by so they can send my records and a letter of recommendation. When I am evaluated it will be a process of many tests and appointments to see where I stand. Time will tell.  No worries, I will update when I have anything to update about in regards to transplant.

Onto another topic….my mama.  It has been 2 months since she passed away.  I miss her so much.  My depression is better after we upped my anti-depressant.  I guess I should say that my depressive ‘episodes’ are less frequent.  I still burst out in tears randomly when I’m triggered with a memory, a song, a picture, a smell, a clothing item, etc.  I have been seeing an add on Facebook for www.kidzcandesign.com a lot over the last few months.  It is a website that you can send an image of a drawing or handprints or handwriting and have it made into a necklace, keychain or more.  I searched for anything that I had with my mom’s handwriting.  I found a birthday card from my 35th and cut out what I wanted to be created into a keychain so I could have it all the time.  This is what I came up with… It is hard to read but it says “You are an amazing woman.  Love you, Mom”

IMG_6116

In that birthday card she also said… “As much as I don’t like you being so far away – you are living your life for your family.  I am so proud of you!”  I hope I still am making you proud mom, even with my temper tantrums.  haha

Until next time…

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