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
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?
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
Yesterday (5/5/16) was good ol CF clinic. Nothing spectacular to report there really in the sense that we didn’t change anything or add any extra tests. My PFTs (lung functions were) basically the same. My FEV1 was .93 L/ 31%. My first 2 attempts were identical at .89 L/ 30%. If I were a healthy (NON CF) Shannon the predictable FEV1 I should get is 2.96 L. That is based on my age, gender, height, weight and race. Continue reading
Just wanted to fill you in on some of the important doctor appointment dates that I have been waiting on. Of course they are not soon enough for my liking but I shall deal with it.
Before I even get into these appointments, YES taking care of me IS a full time job that doesn’t pay well, however my reward is my family. Continue reading
Shannonigans Lung Fund is in full effect! As you know we have started fundraising for future medical costs associated with lung transplant (pre and post). Continue reading
I have been wanting to make a car window sticker for awhile now for team Shannonigans. The time is finally here thanks to 2 of my fabulous friends! They were able to make my vision come to life!
Without further ado…
The design comes from the back of the Shannonigans shirts with the ribbon modified to say CYSTIC FIBROSIS CURE CYSTIC FIBROSIS and a little Shannonigans hashtag love. I love them!! The butterfly and ribbon design is actually from the big tattoo on my back. My tattoo has “Never Give Up” over the top. So you all have a part of me. There is real meaning behind the design.
The funds raised from the sales of the stickers will go to an account for future medical expenses. A lung transplant will be in my future at some point and we want to be ahead of the game when the time comes.
My husband will have to take time off work to care for me at that point. Also depending on where I am listed for transplant we may have to relocate for a short or extended period to be close to the hospital I am listed at. It is uncharted territory for sure but we want to be as prepared as possible.
You can pay for your stickers through PayPal using the “send friends money” option and my email, LTLHOOK@yahoo.com, as the recipient. If you would rather send a check, please email me for my mailing address. Local Tennessee folks can give cash.
Thank you for all of your love and support.
Until next time…
…IVs for 2 weeks then reevaluate how I’m feeling to determine if I need to continue to the usual 3 week (21 day) course. I will be doing the same antibiotic cocktail that I did last time in May/June which was Aztreonam (2g every 8 hours) and Amikacin (25 mg/kg (1250 mg total) every 24 hours). I have managed 3 months without IVs which is possibly the longest in awhile. I will be doing labs every Monday, Wednesday and Friday to monitor my creatinine (kidney function) and all the other normal stuff. Continue reading
I have a ton of different things on my mind and I don’t know that I can wait to make them in different posts…haha I’ll see what I can accomplish in this one without confusing you, hopefully that is. Continue reading