Today’s clinic visit was a follow up from my last admission. Ya know, the one where I kept coughing up blood, yeah that one. The visit was short and “sweet” because I had so many other things I had to get done today so I put them on a deadline of when I needed to be out of there. hahaha Continue reading
I received my letter of determination from my lung transplant evaluation….
- “This letter is in regards to your recent lung transplant evaluation at Barnes-Jewish Hospital in St. Louis, MO. Based on the results of you evaluation, we feel like you may be a suitable candidate for lung transplant in our program. However, there are some program requirements that must be met before you can be listed with the United Network of Organ Sharing at our hospital. Therefore, you have not been listed with the UNOS at this time. Attached is a letter from your Nurse Coordinator outlining the requirements that must be successfully completed prior to listing for lung transplant.”
We are heading out to St. Louis to Barnes Jewish Hospital for the week of transplant evaluation. With that comes a lot of emotions as you can imagine. I am excited, nervous, anxious and ready to breathe. Not that they are going to fix me right up while we are there but I’m ready to get some answers and find out where I am on the transplant spectrum. Continue reading
What if I didn’t have CF? That is one open-ended question. This topic for this post has been on my mind for a while now. I just didn’t know how to go about writing it and then there was the whole coughing up blood thing that got in the way.
The “what if I didn’t have CF” question/statement goes way back to childhood. I think I am just going to start to list things and elaborate when needed. 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
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
My day starts with lots of coughing which in turns means I need to do a breathing treatment and vest session ASAP to get as much junk out as I can and to get my lungs to calm down. Usually I’m coughing quite a bit throughout the night as well. I always try to “cough it out” to avoid getting up to do a treatment, but that doesn’t always work. I haven’t had uninterrupted sleep in so long. I can’t remember when the last time was. I have just learned to sleep in spurts. If you total the actual amount of time I am asleep at night it would be between 4-6 hours most of the time, between the coughing, possible breathing treatment to calm the coughing, bathroom breaks and tossing and turning. Continue reading
Today was clinic day and a short one at that, in terms of normal clinic days. No complaints here. It seemed like everyone was on vacation. My question is, why didn’t they take me with them? haha Continue reading
Today was a day that I have not looked forward to happening in my journey in life with CF. The day that oxygen was delivered to my house for 24/7 use or even only night time use. I have always thought that when this day happened it meant “I was getting sicker” and that my life was on a downward spiral of CF progression. In my life there have always been milestones that have signified different steps of CF progression to me. Not everyone thinks the same as I do, this is just me. Continue reading