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.
Until next time…
Hey all! I was educated on what parainfluenza is so I thought I would share. Parainfluenza is not actually like the regular flu. First of all the flu shot doesn’t cover parainfluenza so even though I got my flu shot it wouldn’t have protected me from parainfluenza. It can last up to 16 days, if not longer. No tamiflu is given for it, just Tylenol or ibuprofen for aches, pains and fevers. With that said, having parainfluenza along with a CF exacerbation (whether the parainfluenza brought on the exacerbation or not doesn’t really matter) it’s going to take me awhile to recover from this.
I spoke with my CF nurse this morning. I had sent her an email about the steroid debacle and just to fill her in in general. Apparently my CF doctor is in St. Lucia for vacation. Rough life I tell ya. Haha I told her I finally got the correct dose of solumedrol finally. She did tell me what my lung functions were when I did them yesterday since no one ever came to tell me. They are 21% FEV1. So yes I am much lower than my normal which is between 30-35% regularly.
So with my oxygen saturation being down when not on oxygen, low lung function and having parainfluenza it might be a long recovery ahead of me. I will need to get my lung functions up some, off IV steroids and on oral prednisone and hopefully off oxygen so I can go home. Going home on oxygen is not the end of the world but not ideal. It would be much easier to not need oxygen at home. I will be on IV antibiotics when I got home as usual. I usually do 14 days total of antibiotics but sometimes I need a total of 21 days. We will have to just wait and see how things pan out. I might be a little less tight but still getting short of breath when I go to the bathroom without oxygen. I don’t have anything planned today (that I know of) just the usual antibiotics and breathing treatments and resting. I think that’s all for the update for now. Thank you for all your support and prayers. I appreciate them so much.
Until next time…
The steroid debacle of not getting what I wanted/needed has finally come to an end. I just received a 80mg dose of solumedrol (IV steroid). I received 2 doses of 40mg solumedrol before this. The attending pulmonary doctor that saw me this morning agreed to do the 80mg. Also I looked in my patient portal for my hospital and saw that I don’t have influenza A, I actually have a parainfluenza. It’s still the flu either way. I was also able to see the reports for my chest X-ray and chest CT. My X-ray showed no changes. My CT speed showed a spot of pneumonia. That only means I have an active infection so don’t freak out. It also mentioned bronchiectasis which is narrowing of the airways which I’ve had for awhile. It didn’t mention any progression.
I’m still feeling the same, no better. I’m hoping the solumedrol will kick in and help in the next day or so. It usually takes a few days to start working. Then it takes maybe 3 days or so of being on the solumedrol to be able to go to a lower dose. I’ve been continuing the IV cefapime antibiotic every 8 hours.
Today was pretty uneventful really. I did manage a nap with only 2 interruptions. I did get more sleep last night as well such was nice. I’m in the hospital so that means no sleep. It’s hard because you are supposed to be able to rest to get better but they are always in and out all day and night. I do ask that they don’t do vitals overnight so I can possibly get some sleep. But things start bright and early around 5:30am or so with drawing labs. I’m still hoping I can be out of here by Friday so I don’t have to spend New Year’s in the hospital. That would be no fun at all. I will be going home on IV antibiotics like usual so it will be at least 2 full weeks of cefapime. I will also be on a prednisone taper. I think that’s all for the update tonight. Thank you for all of your love, prayers and support. I appreciate it very much.
Until next time…
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.
Until next time…
Today I had my 3 month check up. First stop was the lab for my yearly labs. I managed to con my nurse into waiting on my glucose tolerance test for awhile. I hate that test. It upsets my stomach and sometimes gives me a headache from all the sugar. Plus being stuck 3 times in the hand (my arms are too scared for blood draws) in 3 hours sucks. Next stop was pulmonary function lab..My lung functions were basically the same. My FEV1 was 39%/1.08L. Last time was 40%. So holding steady is good. Last stop was clinic…oh yeah I was weighed in the pulmonary lab and I have lost weight which is good. With Trikafta I gained a lot of weight. I think I’m down about 10 pounds. I’ll take what I can get! I haven’t really been trying that hard. I did start calorie. counting and watching my diet but I saw that I was rarely going over my allowed calories so I stopped counting. haha. My doctor said my lungs sound good and I look good. My oxygen company contacted me to let me know it was time for my reevaluation to see if I still need oxygen. I haven’t used oxygen in about 2 years so I will be saying bye to my concentrator and portable oxygen. I’m ok with that because I wouldn’t fail the 6 minute walk showing I need oxygen. I just liked having it as a crutch just in case I was having a bad day. I can always get it back if needed. I see him back in 3 months for another regular check up. Now I just wait for my lab results.
Until next time…
Well first of all my side pain is gone! It could have been GI (intestines) related because I did a “clean out” just in case and it seemed to help the pain. It didn’t take it away but it was less. What’s a “clean out” and why did I do it? A “clean out” is when I drink lots of miralax to get the poo moving in case there was a blockage starting. If a blockage gets bad enough it can require surgery. No thank you! So all is well in that area now, thankfully. Continue reading
Well my 2018 has been shitty so far, literal and figuratively speaking. Not that you cared to know that. I got that virus around Christmas weekend and it seems to have found a happy home in my body. I have been super short of breath just walking and even sitting therefore I have been using my oxygen pretty much 24/7, unless it doesn’t reach where I’m going in the house. Continue reading
As I was walking the dogs around the block today with my oxygen on my back I got to thinking about all the things I miss being able to do. With progression of CF, your independence slowly gets taken away. It is a major mind battle and the depression takes a hit when you think about all the things that are “taken away” from you. Continue reading
This is what a $500 battery for my POC (portable oxygen concentrator) looks like. Yep $500!!!! I have to have 2 of these for the trip to Hawaii. Per FAA regulations, you have to have 150% of battery life compared to your flight/layover time. I had to be approved by Delta to fly with my oxygen. Then they dropped the bomb that I needed 2 double batteries (a total of $1,000) OR a double battery and 2 single batteries ($500 + ($325×2) = $1,150). One double battery gives me about 8-8.5 hours at 2 liters. One single battery (which is what came with my POC) gives about 4-4.5 hours of 2 liters. Thank you to everyone who donated to the lung fund for allowing us the means to buy $1,000 worth of freaking batteries.
If you would like to donate we would greatly appreciated it.
You can donate to http://www.gofund.me/shannonigans or to http://www.paypal.me/shannonigans.
Thank you to you all for all of your love and support!!
Until next time….
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 Continue reading