It’s day five in the zoo. I’ve been moved from the step-down floor, with its myriad of wires attached to my body and slot machine heart monitor ringing JACKPOT at four in the morning, to the hospital’s CF wing, which makes it sound more exotic than it is. But I am excited to be here and out of the monitored room.
My new room has some choice furniture, including a fold-out sleeping chair and wood chair I can use as a work chair. The rolling table has a pull-out section, which I’m using right now as a workstation. In the previous room I had to sit at the edge of the couch chair to type on my iPad or laptop. It’s amazing how a piece of plastic with fake wood covering can make all the difference. The pull out part is something I missed on previous visits.
The blood has stopped and so far no plans for an embolization. I believe the blood will be back in the weeks when I’m out. I don’t think they caught the correct bleeder. They do and believe this is a new one. Let’s agree to disagree. It hasn’t stopped me from pushing their buttons a little about the fact I’m in again for bleeding. However, they are sympathetic.
Before the visit two months ago, I wasn’t multi-drug resistant. Now I am. Did I pick up something in my 20-day stretch? Who will ever know. I need a rubber suit and mask for all of my stays from this point on – and David Blane’s ability to withstand torture over stretches of time.
I’m on a triple cocktail of cipro, tobra and zosyn. Yum. They infuse zosyn for three hours now. Three f**king hours. I’m on IVs all the damn time. They’ll kick me loose soon to do them at home. I have to admit, three will be a chore. I’m not sure which is worse, the three antibiotics or staying in the hospital. The evening doses are the hardest at home. I like the nurse coming in at night trying not to wake me and giving me a gentle kiss on the cheek to help me sleep.
The hospital has gone Chinese Government crazy with web access and now blocks a ton of sites and most blogs, including mine. I’m using the iPad WP app to get around the censors.
This stint has had its share of mishaps. First, my left hand is swollen and hurts a lot because the IV site went bad. The site looked like I had inserted it when compared to the new site on my right hand, a proper insertion. I took a picture for a future post.
The PICC line placement didn’t go well. It got stuck at the critical juncture of going up or down – down is the correct path. All of sudden I couldn’t breathe and my heart went lottery-winner crazy mad. Luckily, I was on a monitor and the nurse came in and they watched over me. Even after the procedure, which resulted in a mid-line and will lead to me getting a port, my heart wouldn’t settle down because of atrial fibrillation. Bring on the EKG and today’s heart echo test.
One bonus of the failed PICC was a vascular scan for clots. I know the woman who does them after many scans in the past for a clot in my neck. I let her train on me. So, she gave me a gel bath and scanned me with her wand, and no clot – yet.
I told a good friend that CF is not just about surviving CF. It’s also about surviving hospital stays. Bad stuff happens here. You leave with something you didn’t have when you came in. Or they beat the living daylights out of you with tests and procedures. This is a game of Survivor without a safety net.
During this visit and the last few, I find myself escaping into more entertainment – movies and video games – than reality like blogging and reading. I feel like Sigourney Weaver in “Aliens” walking into the middle of dozens of Alien eggs. Luckily, she had a flame-thrower with grenades. I don’t. So, I’m choosing to ignore as much of my surroundings as possible because I know all of this is a bad dream and I’ll wake up at home soon.
(Typed on my iPad. Please excuse typos.)
The Unknown Cystic 
“CF is not just about surviving CF. It’s also about surviving hospital stays.” Couldn’t have said it better, man.
So, how do you feel about getting your new titanium or porcelain hardware sutured to your pec? You’ve read about my pros about it, so here is your advance information about it that you will want to know so you’re not surprised. Your incision will itch like a mo-fo for 2-3 days, and mine was simply closed with that 3M New Skin gunk. Whatever you have to do, don’t itch it or your scar will be 1/2″ across instead of a line. Second and last, the sutures in your muscle will be anywhere from sore to painful for about 2 months as things close in around the trauma. Today, nothing. Man, I love twilight procedures. 😉
Jesse,
Thank you for the information. It looks like I’ll get the port the next time I’m here. Probably don’t want to take a risk this time due to the bleeding.
Again, your advice is most helpful in saving me from pain and suffering when I do get mine.
Thanks,
John
Glad you are back in a normal room and can watch movies. Escapism is a good thing!!
Hehe, escapism is a very common middle name among CFers.
and I’ve done 3 IV antibiotics ay home. I got less rest than in the hospital. I live alone, so if you can talk your wife into taking the midnight shift, that would help. Just saying.
Yes, but you’re Superwoman. I am but a mere mortal. Looks like I’ll be going home to do IVs. So, I’ll learn to do three. I did the math and that’s 16 hours of being hooked up a day. I don’t think I have the heart to involve my wife.
It’s less rest, but they do try to kill you in the hospital, through ignorance more than negligence. On q8, I do 6am, 2pm, 10pm. Q6 is 5, 11, 5, 11 that works best for me.
3 hour dosing, though. No thanks!
I’ll be doing the 3-hour dosing because that’s what they say works best. I want the most effective treatment.
Not sure escapism is a good thing when you play 20 games of Need for Speed. I didn’t feel that productive for the day. 🙂
I’m getting out today, on day 4. I’m also on Tobra and Zoysn, and on my favorite wing of UCD (Whats up east 4). Get a port, they make life so much easier. I didn’t want to get one, but it has been the best thing for my head space about having to get locked up. I was just tired of getting stuck. I had a lot of bleeding last year and we narrowed it down to Tobi, after 2 embolzations. Godspeed. One day at a time, and lots of netflix can get us through it, and maybe a Xanex.
Colin,
Nice to hear from you. Sorry that you’re in jail, but glad you’re busted out.
I can’t believe TOBI caused the bleeding. I guess you had the two embolizations and still bled like I’m doing. How did you narrow it down to TOBI?
I’m going to get a port. Tired of PICC lines and now they don’t work anyway.
Stay in touch,
John
About the bleeding and the Tobi. I was very poor about my complience with Tobi till about a year and a half ago, then I started getting all of my stuff together and could see that the Tobi would keep me out of the hospital. So I started doing it 2X. After a week I brought up 2 cups of blood when I got home from work. I drove myself to the ER and the bleeding had stopped by the time I had gotten there. I decided to wait for a emb till I had another bleed. Over the next few months I would cycle on and off Tobi and kept adjusting down from the 2X a day every month to 1X every day. I continued having small amounts of blood in my goo, unless I had been off for over a week. I would have one dose and with in 12 hrs small amounts of blood would be back. During the end of those 6 months I had 2 emb and the bleeding would be back as soon as I started back with the Tobi. So I quit the Tobi and the bleeding stopped, I got sicker, but I only see blood if I’m deep in a infection now. I’m fine with HTS, Cayston and Colistimethate, it is just the Tobi. The bummer is I think the Tobi works better against my bugs….
And the port, I got mine on the right side of my chest. I love the location of it because it is opposite my seatbelt if I’m driving. Nobody asked me where I wanted it, I just came to and had a port on the right side of my chest. If I would of known I would of gotten a tattoo where they were going to put it. I think that a bullseye/target or a gas cap would of been good.
Its good being somewhere where everybody know Your name, even if it is in jail.
It’s sounds like you pinpointed the problem. It’s so hard to do. I’m debating two meds that may be causing bleeding for me right now: Pulmozyme and Spiriva. I can only go on my gut and believe both of these may have caused past bleeds.
Have you ever tired Tobra, not TOBI, in a an eFlow? I wonder if that would work for you?
Thanks for the tip about the port. I’ll have them place in in the right chest. Cool idea about the tattoo. I’d steal it if I weren’t afraid to get a tattoo. I know I’d catch something if I got one.
Being on a floor where they know you makes a big difference. I was happy when they moved me to the CF floor.
Great information. Thanks. Stay well.
I’m late to the game, but glad you made it home. Very sorry and frustrated to hear you are now multi-drug resistant. It makes me angry that we can’t control that aspect of CF, no matter how hard we try. We are victims of our environments. Hoping your triple cocktail of antibiotics gets you through the holidays with your family.
Dr. Nanos,
Thank you. I’m glad I’m out and can once again read blogs, including yours.
John