(Please excuse typos. Written on my iPad while I have a raging headache from non-stop IVs.)
Well, I can’t say that days two and three in the hole have been a real joy. With the exception of coughing up blood, I felt better before I came in on Sunday. Now I feel crappy from sitting in this room all day trying not to bleed, wondering what guy has to do to get a little glue in his lung.
Last night I came about as close as you can to moving to the ICU and then an embolization. I stood up to walk across the room and felt the pop in my lung and the blood followed. Luckily, one of the nurses had the vision to leave a pink kidney shaped basin in my room, but not all of the blood made it there. Some of it landed on my UCLA shirt that I wear to mess with the Trojan fans here, and my sheets have dried blood on them today. If you took a CSI light to the room I’m sure it’s in places I can’t see. It’s amazing where blood goes when it splatters. It’s not like coughing up Gatorade.
Speaking of blood, I’ve been watching Dexter episodes. Great show. I’m up to season three. What hits me about the show is how much I relate to Dexter himself. I’m not talking about the serial killer part so don’t call the police, though I would love to take out bad guys, but not by chopping them up. A sniper’s rifle would do. Rather, I relate to Dexter keeping a secret from those he works with and his life with blood.
Yesterday, to avoid the RTs who burst in and yell “ready for your treatment,” I spent 30 minutes in the bathroom on a conference call with the heads of the department I work in. Then there are other times I’m on the phone and someone will come in and I have to do a dance of signaling the person to keep quiet while I get off the phone. I am doing my best to keep the CF secret. But it’s getting harder to do so. I feel like I live in this hospital.
And I can tell you my single greatest source of stress in maintaining a job while I do this dance of having CF and working. Is that similar to Dexter maintaining his “normal life” while leading the life of a killer? It would be much easier if I could kick back and read and watch videos all day. But I don’t want to give up the job.
Still, it’s so embarrassing to tell my boss that once again I’m in the hospital. And working in the hospital is getting harder when I don’t feel as well. There were times today I stared at the screen for a half hour fighting to stay awake. It was easier to be in the hospital when I was younger because I had the power of youth on my side.
So, like Dexter, I hide my big secret and do my best not to get discovered. I know it’s only a matter of time before I can’t do it anymore – when I run out of tricks. When that day comes I know I’ll feel a great sense of relief but sadness, too. And I hope that one day I don’t live my life in fear of blood. If only Dexter could be a serial killer of bacteria – Cystic fibrosis would be history.
The Unknown Cystic 
Look like our lives are in little bit of a parallel my friend. Get better, I hope your hemoptysis stop soon.
Ronnie
Ronnie, I thought the same thing after reading your blog. I haven’t seen an update lately on how things are going. Please update soon.
Bleeding has stopped since last week and now I’m just “testing” my lungs by going for runs here at the hospital. If there continues to be no blood, I should be out late this week, early next.
Well that is very good news. I am very happy to hear it. Run, run, run. I’m at the brown stage of the blood today. With some red mixed in. It’s taking its time leaving.
Sorry to hear about your bleeding!! I, too, have left places looking like a crime scene. Most recently a street corner downtown. Finally, it was happening so often my docs decided an embolization was worth the risk–best thing I ever did. It’s so wonderful not walking around with a bloody time-bomb ready to go off whenever. The procedure was just like a bronch with versed. I had a great team at National Jewish (Denver) who were willing to try locate the source even after the initial bleed had stopped. (At first they said it had to be in “full-blown bleeding mode” before they usually attempt to embolize. But every time it happened 1 1/2 hours away from the hospital, it had already subsided by the time I could get there…then it was just coughing out the old blood for several days later.)
I didn’t know of anyone else who had had this procedure done so I was fairly anxious about the idea of doing it–but I wouldn’t hesitate to do it again. I only wish I could have saved myself numerous hospital/er/icu experiences by doing it sooner. š
Sherri,
On a street corner? oh, my. That must have been something. I’m happy that they finally got it fixed. You’re right about the conundrum that you have to be bleeding at the time to get the embolization. That’s why I’m surprised I’m not sitting here typing with a nice new stick on gum in my lung. What’s up with that? š
I’ve had one embolization already, years ago. I have a half-written draft of what happened in my blog drafts but haven’t wanted to revisit the story.
I really appreciate you taking the time to leave a comment. I hope you stay healthy. Best to you.
UC
OH BOY… im so sorry about all u r going through. and keeping it a secret makes it all the tougher.. i hope the bleeding stops SOOOOOON! i know how hard it is to decide to stop working. its 10 years now and i dont regret it one bit..
OH BOY is right. That about sums it up. š The secret part is a challenge but I don’t know what I’d say at this point. It’s probably ingrained from a young age and I think I’m really embarrassed about having CF. We’ll see what’s it like not working one day, but I hope that day is a long way away.
Thanks for stopping by. Glad that there’s some good news coming from your blog regarding the recovery of your aunts.
I can’t believe they still haven’t treated the source for you. I can tell you with certainty that month of this, let alone years, would be allowed to happen under the care of my doctors. Are you sure you don’t want to move to FL? No state income tax… sales tax is only 7% in my county… lemme know. š
Your comment is on the money. I’m a bit confused about that decision too. Maybe I have to tip the doctors or something. Not sure what I have to do to get an embolization around here.
I have a great CF doctor here. I haven’t spoken to him yet since I’ve been in. However, that will be one of the first things I speak to him about. I thought he and I agreed that if it happened again, I was going to get the lung glue. I read online about some CFers with 6, 7 or more of them. I talked about how I’ve had to adjust my lifestyle for a long time now because of it. Based on the past history with my first embolization I wouldn’t be surprised if I’m back in a few weeks getting it. I think this spot is going to bleed again.
After watching Dexter, I’m ready for sunny FL. And perhaps your team of doctors, too. š I’ll walk in and just say, “Give what Jesse is having.”
That will just about work as soon as they find out that you sleep on the friggin’ couch! I wouldn’t stand for that – not for a week, man. I’ll let a bleeder get me out of bed… for 10 minutes before it clots, but I’m not missing a good Serta night’s rest when there is something the doctor can do about it.
Seriously, I’d question how good he is if one of his patients has been in the hospital for more than 24 hours and he hasn’t seen you yet. I think you’re pissed in words but not action, Fibro.
Keep me posted on Twitter DM if anything becomes breaking news.
They have known I’ve slept on the couch for years now. Lots of us have to when we get older and bleeding happens. Laying down can bring it on. It sucks. I dream of sleeping on a flat bed. I do.
The CF center system works differently out here. I am in no way pissed that I haven’t seen my doctor. I see two hospital doctors a day here. If my CF doc had to visit all of us here in the hospital daily, well, he wouldn’t have time for anything else. I’ve been emailing him and he talks to the hospital docs every day. Then they do rounds on Fridays. He’s a great doctor – the one who answered the email on Sunday at 7:00 am when the blood hit hard.
Thanks for the concern. I’ll write a post shortly with an update. It will be an interesting one to say the least.
š
UC
Sounds like it’s the month to be in the hole for a lot of people. After you have watched all of Dexter don’t forget Red Dwarf & Blackadder to catch up on. Anyway sending good healing vibes your way fella. BTW Reserved a room next to Lauren’s for you if you ever get over here.
Thanks for the healing vibes. I hope you have enough to spare. I’ll send them to Lauren.
Blackadder? I remember you telling about that one. I’ll check it out.
Don’t be surprised if I bring the family to England next Spring. If I can get the bleeding under control and feel healthy. We’ll see. that’s my dream.
I will definitely keep my fingers crossed for you, not only so you can visit but also for the dreaded bleeding to go away forever.
First, you and Lauren rock for tweeting the photo today. It was priceless. Dude, you look like a right stud bloke – the shades and cool t-shirt.
Also, do you have a new blog? Do I have to change my link or add a new one? What’s the scoop?
If they know you are in the hospital, what do they think is the reason? I just hate the added stress for you of keeping a Big Secret.
I also hate you are having problems. Sending smiles, prayers, hugs through the Web.
Well, Mal, let’s just say I don’t give all the detail. And in the past I’ve never been in as many times as I have been recently. And I could always count on turnover so it was something new to my new boss. Now I’ve had the same manager for awhile and been in a lot. The noose feels tighter. They know I have some challenges. No doubt about that. They don’t know the severity or detail. And they know I don’t like taking about it.
I know. I’m screwed up. At some point I’ll let them know. I just don’t feel like having everyone know that about me. Things spread in a company.
Mal, thanks again for the comments. I always like it when you leave one. Yours and others help a lot when I’m in here.
No, you’re not screwed up at all!! That’s not what I meant. I’ve been pretty much exactly in your shoes, which didn’t smell good. hahahaha. I just remember feeling a burden lift when they knew why I coughed and took drugs. I also declared my disability with HR under the ADA. I don’t know if that helped but it made them sit up and take notice. As long as you are able to do your work, there is nothing they can do to you. And if they try, get a lawyer.
I missed the part about you sleeping on the couch! AAARGH. That’s just wrong. Tell me the number to call and I will get you a room with a bed.
I respectfully choose to disagree with you on the screwed up part. I am. š Did you forget about the bag over my head?
Thanks for the HR tip. My company has been good so far with it under the table. My fear may be based on the stories the old-timers tell about someone getting cancer or a brain tumor or some medical condition that was going to cost a lot, then getting a pink slip in return. At some point, I may have to let them know. So far, so good, under the radar. I’ve also never wanted to be treated differently. However, it’s getting harder to do that as I turn down business travel left and right.
You rock, BTW.
UC
UUUUUUCCCCCCC wth man? you arent screwed up. you are awesome. if you can keep CF a secret, im going to make you my shrink. word on the street is that i need one anyway š not that you would want the job or anything, but at least there would be no question about confidentiality huh?
ok, ok, i quit. just messing around a bit. its late and delerium is starting to set in š wishing you nothing but brown/normal sputum for you in the coming days. much love always ~j
Juli,
You don’t need a shrink. Hmm, well, maybe you do. š Kidding. I’ll be your shrink. I have a great poker face. You’ll never know what I’m thinking.
You have a lot to deal with in your life. It’s not easy to deal with a life with CF in it. Unless you’ve lived it as a parent or a CFer or a spouse or someone close to the disease it’s hard to articulate or explain to others. A secret war we wage while others live their lives.
What am I talking about? I don’t know. I’m tired.
Thank you for the interesting comment. I am sending a great vibes to you and the girls. And I’m sending you this really cool doctor who likes the Saints and women who speak their minds. Unwrap him the minute UPS delivers the box. I may not have put enough air holes in it. Let me breathe before using. š
UC
Oh, gee. The bleeding sounds miserable. Perhaps you need Dexter to reenact the blood splatter pattern in your room with strings or that fake blood in the white room thing. I think everyone that watches Dexter likes it because they identify with him in some way. It sort of creeps me out that I like the character so much. When it comes on netflix, I pretty much want to stay up all night watching the entire season.
I hope you feel better soon and get to talk to your doctor. I’m not seasoned with the hospital, but it seems like you should have seen your CF doc by now. Or at least had a phone call with him. Hope you get the lung glue before you go. Hang in there.
Dr. Nanos,
I am so glad you’re not seasoned by the hospital yet. And I hope there will be new drugs soon that will keep you and others away from it.
Dexter – great show. I just finished the 3rd season. I’m saving the fourth season, taking a break. I know that’s the last one for awhile.
I’ll have to check Netflix for Burn Notice. I know you like that one too.
And yes, you’re right. Bleeding is miserable – it’s like an earthquake because you never know when it will happen, and when it starts you don’t know how long it will last. And when it’s done, you feel shaken, thinking about how much damage it’s done.
Thanks for the visit and comment. Much appreciated, as always.
UC