I've debated for a couple days whether to write about what's been going on with me the past couple days because I didn't want to freak people out (I know a lot of my family reads this), but I figured if I'm going to have a blog about how I live with CF, it has to be the good, the bad and the ugly.
Our new years was pretty uneventful, Tim and I just hung out that weekend and it was back to work on Monday for me. The kids were a little tired, but as the week went on they got a little crazier. Luckily it warmed up to be about 50 degrees (in JANUARY, in northern Illinois = not normal, but welcomed!) on Thursday and Friday so the kids got lots of outside time! Thursday morning I was at work, the kids had just arrived, and my breathing started feeling funny - I felt kind of crackly, but really thin crackles: aka: not going to be mucus when I coughed, it was going to be blood. Now, I've coughed up blood (hemoptysis) before, where it's been mixed in with my mucus (streaking), but only maybe once or twice ever in my life has it been straight blood. This time, it was straight blood and it wasn't staying down. I was trying my hardest not to cough as I'm helping my two little guys write in their journals. Since there were several adults in the room, I excused myself to the staff bathroom and got out what I could. It was pretty scary for me because I've never had this happen like this, let alone at work.
I didn't want to tell anyone at work because I think that would totally freak them out. Luckily, about 30 minutes later and several productive coughs, it subsided, and it just turned into streaking. I knew I had to contact my doctor to let her know what happened because that is not typical CF for me. At work, my lunch is at 10:30 (so about an hour and a half after all of this happened), so I emailed my doctor from my phone (YAY for having a smartphone!). I stayed at work, kept my phone on me and emailed my nurse back and forth a couple times during the day to hash out a plan.
My nurse, Penny, told me to back off of my treatments to once a day for two days (to give my lungs a break), then bump it up to twice a day for two days, then 3-4 times a day if I can (to get it all out). I also started an oral antibiotic, Cipro, for 14 days. So Thursday and Friday I just completed one AM treatment, and as I'm writing this, I'm completing my first treatment of the day today. I usually do my HTS (hypertonic saline - nebulizer med - salt water, pretty much) with my AM treatment, but I opted to do my Pulmozyme yesterday morning as to not irritate my lungs even more. I just finished my first treatment of the day today including HTS, and it went okay. There's still a tiny bit of blood in my mucus, but I think it's starting to get better.
The thing that gets me, is that I've been feeling great lately, and this literally came out of no where! I was sitting at a table, helping my students when I just started randomly coughing up blood - kind of scary. Today, I'm feeling just fine, I don't have any increased cough (not more than usual) or any 'sick' symptoms, so I feel weird having to go on antibiotics and mess around with my treatments, but I know it was definitely a smart move to contact my nurse. I also decided to back off of my exercise for this week, to give my lungs a break, but I'm hoping to pick it up again next week. In the meantime, I need to figure out how I'm going to try to fit in an extra treatment or two starting on Monday. I work til 5:30, so my second treatment isn't going to get done until 6:00, so I guess I'll have to do another one right before I go to bed.
Tim's been giving me crap that I have to start my 100% count all over again because I only did one treatment a day for two days! Haha, yeah right! I'm going to keep it up there because I told him I was just following doctor's orders! :-)
I hoping that within the next week, this will all go away and maybe I'll be feeling even better than I do now with that round of Cipro. I hope I didn't scare anyone - really, I'm fine. :-)
I JUST had this happen to me in the beginning of December. It is so weird because it is exactly what happened to you...coughed blood for the first time ever and of course at work (the worst!), called the doc and went right back to helping the kids, felt 100% fine CF wise and had no idea where it came from. It really is awful and terrifying! The doc thought mine was from moving a plug that tore the airway, but who really knows. Anyway, I hope you feel better soon. Our experience sounds so similar and after that episode I have had no problems and still feel really healthy so hopefully you will follow that same course.
ReplyDeletecompliance still counts... taking a rest is being compliant dont let him kid you! keep it up!
ReplyDeleteI just had this happen on Dec. 29th as well. It wasn't straight blood but it was more blood than mucus EVERYTIME I brought something up. I am doing the same exact regiment as you are right now. I'm about halfway through my 14 day run of Cipro. I felt the exact same way you do though...100% fine. Now that I'm on the cipro and Cayston, however, I'm feeling like crud - I take it to mean the antibiotic is working. I'm sorry that you had this happen - it's one of the scariest things in the entire world to me. I hope the cipro takes care of it for the two of us and neither of us have a recurrence of this! I'm keeping you in my thoughts and prayers!
ReplyDeleteAre you being required to see your doc at the next CF appointment? If so, we'll be there together lol.
ReplyDeleteThanks Inhaling Hope, [mkg] and Megan for your kind words. I know I'm not the only one who's experienced this, but that's crazy that we've had this happen so recently.
ReplyDeleteMegan, as far as I know, I don't have to see my doctor anytime soon - bummer though, because I'd love to finally meet you in person (3 feet away). :-) I will be there on Jan. 16th to see Dr. Ismail though, when are you going to be there?
Look like the blood thing is going around. I've had to bouts of blood since the New Year started. Backing off treatments is smart, just be sure to clear your lungs as soon as you can :)
ReplyDeleteHi Colleen, I am also taking a course of Cipro, so we can be metal mouths together =). It's SO annoying that you can't take the med with milk or yogurt, because I have yogurt for breakfast every AM. It's totally ruining my eating schedule!
ReplyDeleteThe first time I had hemoptysis, where I coughed only blood, I was out at a bar with my hubby. We got in the car to leave at about midnight and I got this overwhelming cough and urge to spit...and tons of blood came out, it was everywhere! I was yelling "call an ambulance!!!" between spits - I had NO clue that this would ever be a symptom of CF - I had never heard of it. Some guy came out of his house and freaked out and went back in to bring me towels. It was SO embarrassing!! By the time the ambulance arrived, it had all stopped, but there was at least 1/2 c of blood on the street, on my floor mats, on me....What a night!
Good luck on getting that all cleared up!! It helps me to put frozen peas on my chest if I am getting the 'urge'. I'll be thinkin' of ya!
I just ran across your blog from cystic life but I can totally relate to that scared feeling! I didn't cough up blood for the first 20 years of my life. The only time it was even in my mucus was when it drained down from my nose. Then one day I woke up with this strange cough that I had never felt before like you explained and I would clear my throat and I could feel something runny moving around. When I ended up showering that got my cough really going and I coughed up straight blood. Super scary & not a fun conversation to have with my Mom and doctors. They just had me not to HTS and my vest and I did a round or orals. Thankfully it hasn't happened again!!
ReplyDeleteAlso funny thing... You & I have pretty much the same blog title!
Ronnie - Yeah, I feel like I'm reading about a lot of cysters and fibros who are going through similar things. I backed off the treatments for a couple days, but now I'm back on and my cough is very productive - hope to get it all out!
ReplyDeleteLaura- YES, I hate that you can't take the Cipro with any type of dairy or calcium because that's all my morning is filled with - a giant bowl of cereal, and my daily vitamins including two calcium pills. I try my best to take the first dose at lunch (10:30am at work) instead.
I was going to write about that in the post as well, but I figured it was long enough and I didn't want to seem like I was complaining even more. Hope your Cipro cycle goes well, too! :)
Brianne - What an awesome name for a blog! :) Great minds think alike!
It was scary, especially for me because it happened at work and I didn't want to tell any of the adults around because there were so many kids around, didn't want anyone to panic.