(typed on my iPad. Please excuse typos)
It’s embolization time. Game time. Operation “Find and plug the leak.” The medical version of Where’s Waldo?
Last night, when I sat down to write my blog post, “pop” went my lung. 60 cc of the stuff vampires dig. Fresh from the source. Hot, red and tasty – if you’re dead with fangs. Another fifteen cc and I would have been send to the ICU. Fortunately, I didn’t cross that line. I’ve been able to enjoy the day in my room working. But I’m tired because I had to maximize the folding bed to its most upright position, which is the same as sleeping against the wall with your ass on the floor. Comfortable it is not.
Medicine is funny. I always thought it was science. I’m not so sure anymore. I don’t think it’s progressed much father from the days of witch doctors. There are just more potions to choose from and the witch doctors don’t fight to the death when they disagree. Still, perhaps, one day the phrase “get a second opinion” will change to “get a fourth opinion.”
Do doctors agree on anything?
I’m not sure, as there has been much debate about whether to embolize me or not. First, one doctor told me that I needed to cross the magic mark of 200 cc of blood to make the cut and get the magic lung glue. Then, today another opinion arrived and the 200 cc barrier disappeared. “It’s a judgement call,” he told me. Oh, how the story changes from day to day.
The attending, who I like a lot, opened the door today and told me from the hallway that tomorrow was my lucky day – I’d won an embolization and a bronc as a topper, the icing on my lung-shaped cake. OH, YEAH, baby. Jackpot. Mama needs some new shoes. Let it ride on red while I load up on Jack and Cokes and fill my pockets with coins from the slot machine. Hold it, this machine pays off in enzymes. Oh, it’s the Wheel of Fortune – the CF Life version. Damn, I played the wrong one.
All week I was told IR probably wouldn’t notice my case because of that 200 cc minimum. The funny part is that they always had to guess at how much I coughed up. Is this science? Really? If 200 cc is such an important number, why don’t they give me a measured cup to cough the blood into? The doctors acted like carnival employees guessing someone’s weight. I asked for a couple of measured cups last night so I could get a precise measurement and stop the lottery guessing game. And my plan worked. Almost.
The doctor came in this morning and looked at the 60 cc in a cup and said, “what is that about 75 cc?” “No, 60,” I said. “Let’s just call it 75,” he said. “I want you to get an embolization.” I sat there staring with my mouth wide open. Science? I have a precise measurement in front of me and it’s circumvented by the doctor. I give up. There must be some advantage to making up your own measurements.
So, tomorrow’s the big day. Several months ago, my CF doctor told me the possible complications of an embolization. I can’t repeat them here because I’ll need to wear diapers if I do. I liked the one I had in Germany much better, as the instructions and complications were spoken in German. I just nodded and said, “sounds great, can I have the lung glue now, Herr Doctor?”
Oh, and though my idea to cough up blood into a measured cup worked, I need a bigger opening. Some of the blood missed, hitting my tennis shoes and floor. How much would you say missed the cup? What would you guess? My expert opinion on guessing blood on the floor? I’d say about 15 cc. 🙂
(to be continued, I hope)
For what it’s worth, I got the run around about an embolization for like 6 months and had NO bleeding after I finally got it last fall. And you’ll get some goood sleep after 😉
Thanks for letting me know. It makes me feel better. Hopefully, mine will go as well as yours. Otherwise, it’s been a pleasure writing with you and knowing your story. 🙂
Oh, John…I’ll be thinking about you all day tomorrow. At least Vampires are all the rage right now. Your daughter probably thinks your cooler than sliced bread. Who else’s dad can magically make blood appear out of nowhere? Best, best, besr of luck!
Thank you, Stacey. I always wanted to a be a vampire. Can vampires have CF?
oh boy! Wishing you LOTS OF LUCK tomorrow. Waiting to hear the “glue is dry” post and that youre all set!
Thank you so much. I hope to write that post tomorrow or Saturday. I don’t want to expect from the USA embolization because no one from the hospital ever came to speak to me today. I hope that’s not a bad sign. I’ll be writing the nurse coordinator about it.
Best to you.
okay, okay. no wise cracks tonight…. not to keen on the search and destoy method on my friends, so my worry hat is on until you give us the all clear. Oh how I wish that I had something quick witted and smart to say to make you smile…..but i am drawing a blank.
I still havent recieved my UPS package, I hope the good doc is alright.
love love love and smiles and hugs and everything good coming your way tonight. much love ~j
No, please don’t forget the wise cracks. I’m always up for wise cracks. Especially Juli wise cracks.
All the best of luck to you!! I have really enjoyed reading your blog the last few months and can’t wait to read more. Looking forward to the update! Sending healing thoughts.
Congrats on winning the prize and getting to see what is behind door #687. I’ve asked for a bronch to see what sort of shape my lungs are in (too far gone or just gunky) but they said it’s too dangerous to do w/out cause. Make sure they give you pictures. You can request a CD from radiology here – perhaps it’s the same there.
Get yourself down to one of the film studios in Hollywood, I’m sure they have got pints of fake blood to spare, fill a couple of milk bottles and leave them outside your door. And when they come in just say, yeah it’s about 200cc OK! Another prank to freak out the Doctor’s and Nurses! Hope everything goes ok.
P.S. Typing with one hand because I’ve got a big bruise on my other arm. 😉
At last, some action and a solution! That IS like winning the jackpot. If this casino doesn’t treat you right, call The Donald or Steve Wynn. 🙂 And purchase some red food dye if you need to. Shake some into your milk and then see what they say!!
Love and hugs and prayers for you, UC.