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
I finished IV antibiotics last night. It’s been a long 5.5 weeks of multiple antibiotics. Doing IVs is second nature now after all these years. I’m very organized so I always have things set up to make IVs easier to weave into my regular schedule.
Final dose! Continue reading
Today is brought to you by the letter C. C stands for change and there has been a lot of that going on here the last 6 days. Continue reading
Ugh. Being “the sick person” is not easy. Of course being sick is no fun in general but when you throw in the rest of every day life is makes it even harder. I am not a fan of being sick and having to take a “break” from life. I will speak for myself in this post, Others may not feel the same way I do. Continue reading
The last thing I will talk about is infertility and all that goes along with that. Unfortunately, men with CF get the raw end of the deal. Upwards of 97% of men with CF are infertile. That’s not to say that through the magic of medicine that they can’t reproduce. It just take a lot more time, effort and money to do so. Once again the dang thick sticky mucus puts a stop to things in our bodies. There is mucus throughout your body which is to include the cervix of women. With that said, the thick mucus doesn’t allow the sperm to get where it needs to go to fertilize the egg. The egg itself might have trouble traveling down the fallopian tube also. So needless to say it could take a real miracle of God for some CF women to get pregnant. Continue reading
I am going to be a little transparent in my post today. I am an open book anyway but some topics are harder than others to talk about or I should say to admit weakness in. I have been a bit incognito lately and all I can say about that is depression sucks! Having depression on top of CF is no fun at all. Depression and CF go hand in hand though and why wouldn’t they, right? Having an incurable progressive genetic disease can tend to make one depressed at times or all the time depending on the life situation.
Guilt. I know I talked a little bit about it in the book but I wanted to revisit it. I may repeat myself, ok I know I will just go with it. haha
As someone with CF you feel guilty for your life (sickness/disease) taking time away from others. I will speak for myself, I feel bad when someone has to stop what they are doing (everyday life) and do something for me that is due to CF or CF related. For instance when people come see me when I am in the hospital I feel bad for them squeezing that in their busy day. I never want to be a burden on people. I never want people to feel sorry for me. I never want people to stick around because they feel bad for me. I never want people’s lives to stop when mine has too. I want people to continue on with their normal everyday life. I have no choice in the matter, my life has to be put on hold from time to time. Others have the choice. Don’t get me wrong I am so thankful when people are able to do things to help me out when I am in the hospital like making sure my bonus son is taken to all his activities when my husband is unable. I appreciate everything everyone does for me and my family with all my heart, it is just hard to accept needing help. I am a very independent person and really dislike it when I am not able to do things for myself. I have had to learn to allow people to do things for me which is very hard for me.
“Playing the Cards Life has Dealt”
Denial is a common feeling when dealing with a genetic incurable disease. The first people to deal with the denial and guilt are the parents when they get the news that their child has Cystic Fibrosis, a progressive incurable disease. Most all parents leave the doctor’s office after receiving the diagnosis in a fog of “this can’t be real.”
Now a days most all parents/family members go to “Dr. Google” to find out what the World Wide Web has to say about CF and what it entails. By “Dr. Google” I mean they go to google.com and enter Cystic Fibrosis and start reading everything that their little brain can retain, all the good and bad. The bad being what sticks with them. As time goes on the parents should educate themselves from reputable sites like www.cff.org. Also speaking with other parents of CFers and people with CF will help them know they are not alone and they can do this. Your CF clinic should be able to help you get in contact with others.
Some family members never get over the denial and/or guilt that their child/sibling/grandchild/niece/nephew/cousin/etc. has CF or whatever disease they are dealing with. Thus the reason that CFers can feel like they are a burden on those in their life.