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?

“Lady parts”

DISCLAIMER: Men (if there are any that read this blog of mine that is) this may or may not have a little TMI and talk of girlie stuff with a side of CF.

I have mentioned before how my periods affect my lungs every month.  Well this month my “lady parts” decided to go off on a tangent and not obey the rules at all.  I am not a fan of “lady parts,” or at least my internal “lady parts.” Let me explain why I dislike them so much.  I promise there is a little bit of CF in this post too. Continue reading

October CF Clinic update

Today was a good day and a good clinic day at that.  First stop is always the scale, everyones favorite thing.  I have been keeping my weight up which is a good thing medically speaking but not so good in the clothes department.  I have gained 12 pounds since January, 4 of which have been since last month. There is a lot of yoga, sweatpants and other workout gear being worn around here.  Mind you, there is no “working out” going on here except shoving myself into my skinny jeans/non stretchy shorts and “fitted” tank tops. Of course there is the real exercise going on at Physical Therapy for my shoulder, which is getting much better by the way, but that is it.  hahaha Continue reading

Update on life

I’m on day 11 with 10 days left of a 21 day IV course.  My labs (Amikacin levels, creatinine and BUN) have been great!  I have steered clear of ibuprofen and done my best to stay hydrated.  With all of that said, I am feeling “better.”  I put better in quotes because that is a term I use sparingly.  It is hard for me to say I’m “better” because I don’t want to jinx myself.  I also want people to understand that “better” in my CF vocabulary is more of a “better than I was” and/or “better for now.”  I don’t say that in a woe is me or with a grim tone at all.  It is to show the reality of my life with CF.  I embrace every “feeling better” day and do everything that I can on those days.   Continue reading

Clinic update

Today was clinic day.  If there is one thing CF clinic has taught me over the years, it’s patience.  I am used to it so it is no big deal but others would flip if they had to sit in the doctors office for 2.5 hours or more.

I haven’t been feeling the greatest as you know since I started oral cipro and prednisone.  I have been on both for 11 days.  I have 2 days of prednisone left and 3 days of cipro left.  Today’s clinic wasn’t the greatest.  First stop was lung functions which were down from last time.  This time my FEV1 was 1.37 / 46%.  Last time I believe they were 1.47.  They aren’t down a ton but they seem to be taking a slow decline.  Gotta love having a progressive disease that you have no control over. Continue reading

Burden

My friend shared the picture below on facebook and it got my mind turning.  “Burden” is such a strong word when speaking of relationships, friends and family.  As a person with CF (I speak for myself) you tend to feel like a “burden” to those around you when you aren’t feeling well or having an “off” day.  When you are “on your game” and feeling decent or good enough it is different.  The definition of burden is a load, especially a heavy one.  There are times that you feel like your existence (with CF) is all around a burden because plans have to change, things don’t go as planned, sacrifices are made and all you want is to be “normal” and have “normal people” problems.

burden Continue reading

IVs Update & Rising Star

I am on day 17 of IV Cipro and IV Aztreonam.  I am feeling “better” but I use that term loosely.  I also don’t want to jinx myself by saying I am feeling “better.” haha  However, I am better than I was.  Day 1 through about 4 was brutal with the fevers and recovering from my whirlwind trip to KC…12 hours driving there, 37 hours there, 12 hours driving back.  I felt horrible the first few days back home but I am happy to report I am better than I was.  I still get worn out pretty easy and try my best to take it easy.  The first week of IVs I did a lot of sleeping which helps.  I am now to a point where I feel like I can make it through the day without a nap, depending on what I have going on.  It is hard to be off your A game when there is so much that needs to get done.  For me and the OCD side of me it is hard to sit back and do nothing when there are things I could be doing.  I know, I know…”rest Shannon!”  I do my best.  There are days that I have no choice but to do nothing because my body makes me.  The other days I test the limits as usual. haha Continue reading