Tag Archives: lock up

Hospital Follow Up

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I just had a telehealth appointment with my CF doctor to follow up after my hospital stay. My lung functions on my home spirometer were 32% again which is the same as they were at the end of my 14 day course of IVs and steroids. I told him how thankful I was for him being reachable/available while he was sitting on the beach in St. Lucia while I was in the hospital. It made a world of difference because he was able to tell the pulmonary doctor that was on service in the hospital what I needed and he confirmed that I am in fact a compliant patient and would do everything I was supposed to at home. I told him I owe him a gift. Haha. We decided that this admission was more so my asthma acting up and then a CF exacerbation and the parainfluenza as a side note. Hence the reason I needed high doses of steroids to open my lungs up.

All is going well since finishing the 14 day course of IV antibiotics and the prednisone taper. I was needing breathing treatments every 4-5 hours when I got home from the hospital. I’m now able to go longer between treatments. I’m averaging 3 treatments a day unless I need an extra one. I’m basically back to my baseline with my lung functions between 30-35% and treatment need decreased and not as short of breath when doing nothing.

Wednesday I received my loading dose of Dupixent, the asthma medicine. We are hoping the Dupixent is going to reduce the inflammation in my airways and decrease my wheezing and shortness of breath. My allergy doc called my CF doctor to make sure he was on board with giving me Dupixent due to me having CF. He told her that he was on board and he had quite a few CF patients on it. I’m thankful that I have doctors that are willing to communicate about my care. I will now give myself the Dupixent injection every 2 weeks. It could take a few doses to see improvement. Here’s to hoping it works!

Until next time…

Christmas in the Club: Day 4

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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…

Christmas in the Club: Day 3

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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…

Christmas in the Club: Day 2

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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…

Christmas in the Club

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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…

Embolization #2 (hoping it’s the last)

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I coughed up more blood last night and morning, totaling about 1/4 cup if not more.  Well we know what that means by now. Yep, another embolism.  I went down for the procedure at 10:45am but I didn’t get into the procedure room until 12:40pm. They were so over busy. I made it back to my room around 2:30pm. The best part of getting back to my room was I got the luxury of laying flat for 6 hours!  I had to eat laying down. I had to pee into a bed pan laying down. That is something I would rather not have to do ever again. Continue reading →

Coughing up blood is no good

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Well today didn’t turn out the way I planned at all!  I woke up around 3am coughing up blood. It was a few tablespoons or a little more.  It finally tapered off after about 30 min.  Back to sleep for me, not good sleep but some sleep.

Then my day started off with a fantastic visit with a great friend. Then it was time for all of my errands. First stop of weekly labs at UT.  I have to have labs 2-3 times a week when I’m on IV antibiotics to monitor my kidney levels, liver levels, blood counts, etc. Then it was on to my errands. First stop was Staples to pick up more Shannonigans flyers and donation letters! Then of course I had to stop by Sun Tan City to get tanning points because they went on sale today! They are for when I’m off of IVs…Hopefully that is sooner rather than later. Next stop, Target for a few things.

When leaving Sun Tan City I started coughing at 12:30pm, I started coughing up blood again. I drove to my next destination, Target, while coughing up blood.  I sat in the car coughing and hacking up blood for a good 30 minutes. It finally subsided enough to streaks so I could “run” (we all know I am not running anywhere) into Target to get 2 polo shirts for the teenager. He goes to his moms for the summer and they will be doing family pics so he needed something nicer.  Next up was a run through the bank, a stop at the pet store for dog food and then Hobby Lobby for a quick tour.  Did some window shopping and took pictures of what I liked for the teenagers room makeover this summer (it’s a surprise). His room has been the same for 5 plus years. I don’t usually talk about the kids for their privacy and out of respect for their mom. This has been a monumental month….the teenager turned 16 and is now street legal in his new car.  He is doing decent on his own so for.  The young adult child is going great in college and getting her first apartment.  She is growing up and adulting!!  We all are very proud of them both, myself,their dad and their mom.

On my way home I realized that I still needed to get a watering can for plants and to dilute the boys (dogs) pee so they will stop killing grass and plants by peeling on them. Hahaha

I got home and was taking care of all of office stuff and once again the blood mama pouring out!  This was at 3:30pm. I texted my husband and asked him to come home. I made the dreaded phone call to my nurse and she called back in about 8 minutes.  She said my doc wanted me to go to the ER and that he had already called all the people he needed to to let them know I was on my way and what was up.  He had already requested a bed for me and all.  He also had written down what he wanted them to do for/with me. All together I coughed up probably 3-5 ounces. Heck a little bit is enough for me to not be a fan of it.

I got checked in and triaged quickly, then the wait was on for an ER room. Then off to chest CT for a scan with contrast (thank God for ‘Pollie’ my power port). The scan didn’t show any active bleeds at that moment. After the scan, I was whisked away to my room.  I am in the CVICU (cardio vascular ICU) for monitoring due to the massive blood espisodes.  I will hopefully see my CF doc tomorrow. I’m hoping it’s one of the duckling doc I know and like. It makes my life in here easier.  I am on IV Zosyn (just like I was at home every 6 hours), IV Colistin (every 12 hours IV push) and staying on the oral high dose Bactrim (1600mg three times a day).

I have no idea how long I will be in lock up. My husband seems to think it will be a short stay but we shall see.  I am NPO after midnight just in case they need to perform a procedure of some sort like a bronchoscopy or exploration in IR (Interventional Radiology).  I just stuffed my face with a cheese burger and Mac and cheese?

The plus is, I got all of my errands run. The negative is, I didn’t get all the phone calls Made, or the laundry done, or office stuff organized…. Oh and I was short of breath all day AND I coughed up blood 3 times. The day started off good even with the middle of the night blood situation. It was a beautiful day in East TN and now I’m in lock up! Ugh

REMINDERS:

5/24: Tomorrow is the Texas Hold’em tournament, silent auction and 50/50 raffle!!  It is at Tanners in Lenexa at 7pm.  Invite your friends even if it’s just to hang out.  It is being held in my moms memory and to raise funds for the Shannonigans Lung Fund    Texas Hold’em Tournament, silent auction and 50/50 Raffle

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6/5:   The deadline for Shannonigns Gear online sale!!!!  Please try to budget it in for your last paycheck of May. I REALLY don’t want anyone to miss out in this fabulous design. Http://design.goteez.com/Shannonigan_strong  Ready, set, shop……

Shannonigan Strong online sale

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9/17: 2nd Annual  Shannonigans Cornhole Tournament held at the Casual Pint-Northshore at 2pm. Lots of raffle items including a custom set of cornhole boards!  2 Annual Shannonigans Cornhole Tournament

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To make a direct donation to the Shannonigans Lung Fung, there are 3 ways:

http://www.gofund.me/shannonigans

http://www.paypal.me/shannonigans

Personal (non rubber) check made out to myself.

I am super tired. I’m off of here and I hope I didn’t forget anything.  I’ll update tomorrow when we have a news worthy update.

Until next time….

Our time in the ER and getting settled in my room. I look thrilled huh?