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
Today was another exciting day in lock up. I was NPO (no food or drink) as of 8pm last night because of the 2 episodes of hemoptysis (lung bleed/coughing up blood) I had yesterday afternoon and evening to prepare for an embolization. Continue reading
3am = coughing up blood time I guess. I coughed up about 15-20 cc. My CF Doctor came to see me around 8am and decided he wanted to do a bronch to see where the blood was coming from. I went down for the bronch at 9:15am and I was back in my room by 11:30am. He said he didn’t see any active bleed areas. His next thought was that it was drainage from my sinuses/nose. He looked and said he saw some blood there. Continue reading
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
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
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……
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
To make a direct donation to the Shannonigans Lung Fung, there are 3 ways:
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?
I am in my cell/suite/hospital room, whatever you want to call it. Haha. I finally have a break in the revolving door with people in and out. When you are first admitted and get to your room there are a lot of people in and out getting all of your orders in the computer, taking medical history, making sure your meds are all correct, doing vitals, squeezing in a breathing treatment and more random questions along the way. Continue reading
Today started off with a doozy of a headache that is still hanging around. Since I can’t take ibuprofen at the moment I have to settle for Tylenol which as usual didn’t help. Next up…Tramadol! Strike 2! Waiting to see what they want to try now. I don’t like taking narcotic pain meds at all and only do as a last resort but this headache has hung on for dear life! Anything and everything makes it worse too. A knock on the door is amplified. The light hurts. Chipper people are extra annoying…hahaha. I have spent the day trying to sleep in my dark room with no TV. I even have the brightness turned down on my phone and laptop. This headache can get to steppin! We are going on 12 hours with this one. Ouch! Continue reading
Another day in the books… I am still nauseous and my eyes feel like they can’t focus at times. I have pretty much no appetite and nothing sounds good at all but I keep snacking to keep my calories somewhat up. My calorie intake is defiantly not where it needs to be but some is better than none. My creatinine has been on a roller coaster. So here are the numbers. Monday it was 5.3, yesterday in the ER before fluids it was 5.99, last night after a bag of fluid and half a bag of fluid with sodium bicarb it was 5.6 and this morning it was 5.8. As I said before the normal range is .5 – 1.1. Continue reading