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.

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

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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

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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

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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?

Welcome back Oscar…Oral ABX are stupid!

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 reality at the moment

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

2fer – health update & transplant talk

It was great to have my sister and aunt here for a few days.  They got here Wednesday afternoon and once we had some girl talk we decided to go for pedicures.  Thursday was mom’s birthday so we were off to mom’s favorite Japanese steak house for lunch.  After lunch we were just out and about.  I had to cut our outing short because my stomach was not treating me nice and I needed a good breathing treatment, not just on my travel nebulizer. Continue reading

Hodgepodge post coming at ya

I was paroled from lock up on Monday the 7th after 12 long days.  It seems that every time I’m on the ride back home from the hospital that I notice all sorts of new things along the way.  This time it was road construction.  The Smokey Mountains are never a new view to me but the drive from the hospital to our house has one of the best views of the mountains and I am always in awe of them.  Never fails, it’s my favorite drive with the best view.  It’s home to me. Continue reading

Yep, that’s my luck

My first night in lock up….in CCU/ICU was as expected, NO SLEEP and constant flow of people in and out.  If I totaled up my “sleep” from last night, I would have to guess I got about 2 hours.  At 3am I had labs drawn, a chest X-ray taken and nasal swabs. Why at 3am? Your guess is as good as mine. They were completed nonetheless. Earlier in the night I had an EKG along with my first set of nasal swabs. Hahaha. Yesterday was brought to you by the number 2. I’ll explain; 2 sticks to get a peripheral IV for the chest CT with contrast, 2 sticks for a blood gas, 2 sticks to get my port accessed, 2 sticks from the lab tech for blood cultures since they have to be from 2 different sites, 2 sets of nasal swabs. There may have been more of the terrible twos but due to my lack of sleep, I can’t remember. Oh who am I kidding, my memory sucks and everyone knows that. Hahaha Continue reading

The next chapter: Life with Oxygen

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

Home Sweet Home

After 16 days in lock up I am home.  It was a long 16 days.  The first 10 or so days of my stay I was sick enough that I didn’t care that I was there.  Yes of course I wanted to be with my family at home but I knew I needed to be there to get better.  On day 7 I had a bronch which was followed by days of a lot of pain and major tightness and wheezing in my airways.  So needless to say my asthma went crazy and I had to put up with it and it was NO fun!  It took upping prednisone to 80mg per day (40mg in the AM and 40mg in the PM) to get the tightness and wheezing to lessen to a tolerable state.   Continue reading

Happy birthday Gert

Every February 1st at 3:05pm CST my phone rings….but not this year. This is one of the first firsts without mom here, already. Mom would call at the exact time I was born to tell me happy birthday, it was her thing she did.  I never thought it was weird that she didn’t call earlier in the day because I knew the call was coming.  Some years she couldn’t wait that long and would say, “sorry, I tried to wait until 3:05pm but I can’t wait anymore. Happy birthday Gert! I love you!” Gertrude has been my nickname with my mama since I was a baby. She called me “gaggy Gert” because I would projectile vomit before we got the CF diagnosis and I got on enzymes for my digestive issues. “Gaggy Gert” morphed into “Gert,” “Gertrude,” “Gertrude La Rue” and almost anything that sounded good with Gert attached to it. It was cute and all until mom would yell, “Gertrude, where are you? get over here!” across a store when I was a preteen. Continue reading

Miss my mama

My life changed forever at 8:55pm (CST) on Tuesday January 19th.  My mom breathed her last breath as my head was on her shoulder and her hand was in mine.  I never imagined that I would have to go through this at this young age.  Your parents are supposed to live into their 80’s and 90’s, not the young age of 59.   Continue reading