I’m going home!!! I just signed my walking papers aka discharge paperwork. I’m doing a dose of cefapime right now since it was due. It only takes 30 minutes. At home it is just an IV push which means I push it over 20 minutes (it comes in a big syringe). The hubs is heading here to pick me up. He’ll swing through and I’ll go down, get in and be on my way!
I didn’t know if I would be able to go home today because one of the doctors I saw said they usually want another set of lung functions after 7 days. I had them last on Sunday morning so I kinda bargained with him to do them Friday morning. He contacted my CF doctor (who’s on vacation) and my CF doctor said he was fine with me going home early! Well isn’t he the best! I might just have to get him a gift to say thanks. I am able to use my home spirometer if they want updated numbers. I have an appointment for labs on Tuesday morning. I usually get labs once a week when I’m on IVs unless I’m on colistin or other antibiotics that are hard on my kidneys. If I’m on any of those antibiotics then I get labs twice a week.
They are delivering my IVs to my house so I don’t have to wait at the hospital for them. I’m set to be done with home IVs on Saturday the 7th which will be a total of 14 days of IVs. We can always reevaluate then if I feel like I need another week. I’m hoping I’m good to go on Saturday though. I’ve been known to need 3 weeks of IVs, so I’m hoping not this time. I am also doing oral prednisone tapering from 40mg for 3 days to 20mg for 3 days then done.
I’m not going home on oxygen thankfully. My oxygen sats haven’t been dropping as low when I don’t have it on while going to the bathroom or getting cleaned up. I will be taking it easy when I get home because recovering from the parainfluenza, slight pneumonia (really only means an infection was able to be seen on the CT) and a CF exacerbation will take some time. I don’t have anything planned for the next week except for labs on Tuesday so all is good. I’ll update if/when there is anything to update.
First of all I hope you all have had a great Christmas so far. Now onto other business.
Yes, you read the blog title correctly. I’m in the hospital aka “club med.” Now let me fill you in on the details. As you know I was sick and on oral Levaquin and prednisone for 2 weeks. I finished those on the 10th. I had a decent week after that. After that I started getting more short of breath so I upped my breathing treatments. Yesterday I was even more short of breath and did even more breathing treatments with no relief. We were hosting dinner for Christmas Eve so I pushed on through like I do. After everyone left and I was cleaning up I had to have my husband finish cleaning up so I could do another breathing treatment. Well after the treatment I was still not breathing great and short of breath just sitting on the couch.
I made the decision to throw in the towel and go to the ER at 9:30pm on Christmas Eve night. Let the adventure begin! It was a relative smooth process which I was surprised with it being Christmas Eve. While in triage in the ER I had a bunch of labs drawn along with the dreaded brain swab for all respiratory stuff. I later found out that it did sore influenza A. I also had a chest X-ray and a chest CT. I did 2 doses of IV antibiotics while I’m the ER, meds that I don’t usually use. Then the pulmonary doctor on duty came to see me while I was still in the ER. We discussed doing cefapime like my CF doctor talked about me doing if I wasn’t any better after doing the Levaquin and prednisone. I, of course, asked to do steroids more so specifically IV solumedrol as well because I’m very tight and short of breath. He said that’s fine. Also, when I came in my O2 sats we’re at 90% so I’m on 3L of oxygen right now to help give me a boost. I’m sitting around 97% with O2 on. I take it off to go to the bathroom because it doesn’t reach and I drop again.
I got to my room at 1am. Of course I had a parade of people in and out. Finally got my port accessed at 3am. I slept from about 4am until 6am when my nurse was in drawing more labs and hanging the new antibiotic cefapime. I think I was able to get maybe another hour and a half until it was shift change and people started coming in.
Later another pulmonary fellow came in. He was not so keen on giving me steroids. I’m hoping my CF doctor talks some sense into him when he’s able to talk to him. Haha. It’s really hard going into the hospital on a weekend and Christmas Eve to boot when you have a chronic illness and know what you need but your doctor aren’t there. I may not get started on steroids until tomorrow. I hope that’s not the case though.
I’ll be here for at least a few days to get the antibiotics on board and hopefully the steroids so my lungs can get open. As usual I hope to be out by Friday. I hate weekends in the hospital. I’ll keep you all updated as things go. Thank you for all your love and support.
Today is brought to you by the number 53. What is the significance of 53? It is the number of days since I last finished IV antibiotics (7 weeks 5 days). As I updated in my last blog I grew out some new bacteria called Achromobacter xylosoxidans. I’m going to call it just ‘Achromobacter,’ from now on because that is a lot to type. Continue reading →
Let’s see….where to start. It’s been 7 days since my power port was placed. I’m healing nicely. There has been minimal swelling and bruising. The most painful part is the incision healing. I have been using ice packs for the swelling and bruising. There is a steri-strip over the incision that will come off when it’s ready. I sure do want to rip it off though, it is making it to where if I move a certain way it pulls and is painful. Continue reading →
Today was a busy fun filled day at UT hospital for 2 doctor appointments. Ok, it wasn’t so fun filled but it sure was a long one. It was about 7 hours today. I had a big lapse of time between appointments which I spent in the cafeteria having some lunch and watching a movie with my sound canceling headphones so I could actually hear the movie. Oh yes and of course answering emails, Fb messages and comments,etc. Continue reading →
57 doses of Aztreonam, 19 doses of Amikacin, 133 Saline syringes (not including the extras for blood draws and reaccessing), 57 Heparin syringes, 2 Huber needles, 3 dressing changes…that’s what I have accomplished over the last 19 days plus tomorrow morning. Tomorrow morning is my last doses of IVs and tomorrow afternoon is my last day of labs. I will be needle free as of 1:15pm tomorrow afternoon!! I’m very ready to be free from the needle and dressings that’s for sure.
Now for the million dollar question, “Do I feel better?” A lot of people think that after I do IVs I’m “better” as in not sick anymore and that is not the case. Yes, I am better for the time being and the goal is to stretch the time between IVs as long as possible. IVs are inevitable in my life so I have to do what I have to do to keep on keeping on. Continue reading →
Nine days of IVs down…?? more days to go. When the port is accessed you are supposed to change the needle weekly. It’s not the end of the world if it doesn’t get changed on the exact day. It is also good to give your skin a break from the tegaderm that covers your needle. The major perk is being able to take a REAL shower which means not having to sponge bathe and wash my hair over the side of the tub. I deaccessed my port this afternoon after my 2pm dose. I was due to change my needle on Friday but I wasn’t motivated to do it. Then Saturday I slept most of the day. I just finished with my real shower and I’m now doing a treatment. When I’m finished with my treatment I’ll reaccess my port in time to do my next dose. Continue reading →
I got paroled today! My creatinine was 1.82 this morning!! After receiving the great news that my creatinine was down my sister walked into my hospital room. Mind you, she lives in Kansas City and I’m in Knoxville, TN…11 hours apart! I was speechless and that doesn’t happen often. I was so surprised. That made my day even better. My doc came in and asked if I was ready to go home and of course I said yes. I wasn’t going to argue with him. Although I was ok with staying if it meant a sister sleep over in the hospital. We haven’t done that in years. I got my walking papers and was home by noon. Continue reading →
I just got back from the ENT. My sinuses looked “fabulous” in regards to little to no polyps and all the green mucus yuck. However I have some MAJOR allergy issues going on. He said that my sinuses look blue. I thought that was impressive. I guess the blue is from all the irritated allergy stuff up there. I am in East Tennessee which happens to be the allergy capital of the U.S. You can see the pollen on everything. Continue reading →
Freedom is being needle free!! Well I know there is much more to freedom than that but right now that is my freedom. I finished 4 weeks, actually 29 days, of IVs yesterday. It is so nice to be free from IVs. Now I know you are asking the million dollar questions, “How do you feel? Do you feel better?” Better is a relative term. I feel “better” in the big picture. The IVs take so much out of me, wear me out and drain me. Having IVs every 6 hours means that you don’t get much sleep or at least you only get to sleep in spurts. It will take me a few days to a week to get back to somewhat normal feeling in the sense of not being so drained, or that is my hope. As far as my lungs and how they feel, they feel better. I am not coughing as much but still having my coughing fits and mornings are the worst. Mornings are the worst and will always be the worst because when I lay down to sleep all of the junk in my lungs settles on the lung wall. When I toss and turn or sit up it all starts to move and irritates my lungs, triggering coughing fits. With that said, if you ever call me in the morning and I am still in bed I may not answer it because I will start coughing and it will not be a productive conversation and coughing in someones ear and not being able to talk is not one of my favorite things to do. Continue reading →