I have not been feeling good for about 3 or so week, maybe more. I did the 2 weeks of IVs 2 weeks ago and wasn’t much better but that is probably due to the fact that my pseudomonas is multi drug resistant. We are limited on what will “work” on the stubborn drug resistant bug (pseudomonas) in my lungs. I made the dreaded call after the 4 days of 40mg of prednisone and no improvement. I need something more therefore I had to call with all the I have coming up. I have a busy 5 weeks ahead. Next weekend we are going to the Zac Brown Band Concert, a bucket list item for myself. Then I have a girls trip to the Gulf Shores the next week. Then in 5 weeks we have our good friends wedding weekend. Continue reading
Tag Archives: CF awareness
CF Facts
Cystic fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
- clogs the lungs and leads to life-threatening lung infections; and
- Obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
CF Awareness Month begins
May is Cystic Fibrosis Awareness month. This is the month many CF Foundations do their Great Strides fundraising walks. I am very aware of CF every day obviously. Now is the time to educate others. If you have questions about CF or what I have to do every day feel free to comment on this post and I will answer them. Continue reading
Waiting…
When you have a chronic illness waiting is part of life. Waiting to get better, waiting/holding steady or waiting to die. Yep, I said it. It’s a part of my reality and when I have friends waiting for lungs and others who are not candidates for transplant or don’t want to go that route who are basically waiting to die. Maybe you could call it “living to die.” Whatever it may be, it is life. Continue reading
CF Clinic/Follow up from the hospital
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
Determination letter received
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.”
Transplant Evaluation week is coming
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
It’s Parole time!
I haven’t had any more hemoptysis (blood) since the second embolization. Yay!!! My groin is very sore where they went in for both embolisms. They went in on the right side for both embolisms. My chest is a little sore. Since I’ve been laying in bed for the last 4 days, it doesn’t take much for me to ‘overdue’ it. I washed my hair in the sink and it was just enough to make the pain in the groin more noticeable. Also, I get short of breath more easily right now due to the embolisms. Basically, my lungs have had a bit of trauma over the last week. Continue reading
Embolization #2 (hoping it’s the last)
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
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.
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- Bright red blood from my crappy lungs (this was the 2nd bleed of the 3)
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- This is what pure blood from the lungs looks like
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
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
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:
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?
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- And we wait…but the people watching was great
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- My OCD went into overdrive with all these stupid twisted cords
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- Finally in my bed, snuggled up with my mama’s Sherpa and my pillow from home. Oh and of course this guy watching over me 24/7.
CF Happens 