My Worst Day: 2.5 Years Post Transplant

My Worst Day: 2.5 Years Post Transplant

Don't be confused by the title of this blog.  I'm celebrating 2.5 years post double lung transplant on March 26th 2013, but I figured I'd go back and talk about my worst day ever.  It always seems to be at night when us with Cystic Fibrosis (CF) experience the most horrifying situation, but mine occurred during the day.  Lets put it this way, the room got real bright and I became dizzy.

I figured I'd enclose a song from one of my favorite movies, that being Into The Wild (2007) with the very talented Eddie Vedder (Pearl Jam) behind the pipes.  If you haven't seen it, rent it.  You will like it. Also, read the book, which both are true stories. RIP Chris McCandless. Google his name to learn more.
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My Bout With Massive Hemoptysis
July 2005 was your typical hot and muggy day.  I still remember when we had our central air on, I'd still have difficulty breathing, because one can't keep their air on 24/7.  This is why I enjoyed the winter months.  I was able to breathe better during those months.  Most CFers enjoy the warmer months better.

So for the next part I should give a disclaimer, because it'll get pretty graphic.  But if you checked out my 'transplant journey album' on Flickr, it's not that bad.

That July day I wasn't feeling good.  Shortness of breath (typical) all day.  A lot of time I'd sit in a chair and have to lean sideways in order to breathe better.  I was not on oxygen at this time, but that would soon change.

I was in my room reaching up to get something out of my closet and I felt a pop inside my lungs (upper chest) and all of a sudden it felt like I had a ton of mucus coming up.  The mucus felt as thick as that awesome Ghostbusters gel called Ecto-Plazm from the late 1980's.

It was gurgling inside my chest and airways. It was like I was gargling water. So I went into the bathroom to cough it up, but it was so much that I had to lean over the sink.  What I coughed up wasn't mucus, it was huge cup fulls of blood.  By this time my face was white as a ghost, due to not being able to breath because the blood was blocking my airways.  I knew I had to get it up. It was flowing out of my nose like water flowing out of a faucet.  I still remember the room getting bright white and feeling dizzy.  I knew I had to hold on.

First Trip To The ER

After about 5 minutes of trying to calm myself down and being able to catch my breath, I opened up the door and told my Mom to call 9-11 because I was coughing up blood.  She came bolting into the bathroom and I tried to shut the door so she couldn't see the sink, which by this time was filled with four 8oz cup fulls of blood.  The blood had clogged up the sink.  She saw the blood coming out of my nose and my mouth, even though I had toilet paper to try and keep it from flowing.  She was very shaken after seeing both the bathroom sink and mirror.  As she called 9-11, I told her to tell them that I'm able to walk and I'm coherent, because with that much blood loss, I wanted to make sure they knew my status at that time.  At that point I wasn't coughing up anymore blood.

Two blocks over there was a guy who worked for the fire department (volunteer) and he was here in 2 minutes.  The ambulance was here in about 4 minutes.  So a total of 6 minutes and everyone was here.  Police, ambulance, and volunteer.

When they first got here they wanted to see how much blood I had coughed up, or that was left in the sink.  My bathroom window was covered with blood splats from the blood splashing up on the window.

I told them I could walk to the ambulance, and I did.  I was very out of breath, but I did feel much better.  I just took each step one by one, which of course the neighbors had to have their scenery for the day.  I wanted to say.

"Jason Voorhees is here.  RUN!  RUN!  RUN!  He tried to kill me, and he's coming after you aaaalllllllllllll."

He he he he.

Wouldn't you know as I slowly crawled into the back of the ambulance, a pretty blonde paramedic was in the back of the ambulance. Just my darn luck.  Here I am covered in blood (insert Friday The 13th massacre scene) and blood coming out of my nose.

I cleaned the blood out of my nose and they placed me on oxygen and a mask as well.  I did cough up a little more blood while in the ambulance.  I hadn't been on oxygen in years.  Last time I recalled was back in 1999 after my hernia repair surgery.  That was post surgery protocol.  Each time I went to CF clinic, my oxygen saturation level was normal, but for the past 2 years I knew I needed to be on oxygen, but insurance won't cover it (at least for me) until you're at 89% or 90%.  Inside the ambulance mine was 84%.

So we headed off to the hospital with no sirens, thank goodness.  They placed an IV and I stayed at Huron Valley-Sinai hospital for a few hours.  They gave me breathing treatments every 30 minutes, because I couldn't get any air.  They even gave me steroids via IV, that still didn't help.  Time had to take its course and my lungs had to 'calm down' as I like to call it.  That took about 2 hours.  My head was killing me due to my Co2 level being so high.

Oxygen 24/7

We all agreed that it be best for me to be transported to my CF hospital at Harper University Hospital in Detroit, where I went every 3 months for my CF care and had been going for 9 years at that time.  I stayed in the hospital for 5 days and went home on IV antibiotics for 10 days.  I did go home on oxygen (3 liters) 24/7 because it felt like I blew a gasket and my life or my lungs would never be the same again.  Without oxygen, my oxygen saturation would dip down to 88%, but with oxygen it was between 94%-95%.  Before transplant (5 liters) it would be about 90%-91%.

It took me about a month just to recuperate from that bout with Hemoptysis (coughing up blood) I recall walking very slowly in the hospital (even while on oxygen) because I'd become very short of breath.  From 2005-2010 (until my transplant) I did cough up some blood.  The most would be a large table spoon at a time.

I knew I could've died or passed out, just from my airways filling up with blood.  My very first bout with coughing up blood happened in 2002, but that was just a table spoon size.  I had coughed up blood since that time, but nothing like this.  It was a scary moment in my life.  I did do some pulmonary rehab afterward to gain my strength and stamina back. I was never the same until my transplant.

How Did This Happen?

So how in the world did this happen?  It's very common for those with CF to cough up blood on occasion, and sometimes all the time, but it's the amount that doctors are concerned with.  It's not common to cough up the amount that I did, but it can happen, and does.

I did have pneumonia, which I had pneumonia/infection all the time, not even IV antibiotics worked well.  After 21 days of being on IV antibiotics, my mucus would still be green.  I was getting worse, the IV meds weren't working as well as they had years prior to all this.  I had pneumonia and the amount of infection I had busted some of my main arteries in my lungs.  So when I leaned forward to get in my closet, some of that moved and popped.  It busted quite a few arteries and I even coughed up several pieces of Aveoli.  My CF doctor told me that's probably not what I coughed up, but I'm 120% certain it was.  They were little tiny ball like objects and if you cleaned the blood off, they were clear.  We didn't keep any, nor thought to keep any since this was an emergency and I was more concerned with my breathing and trying to calm my lungs down.
 

So that's the story about my worst day living with CF.  Could I have died?  Yes.  I knew that, but luckily on my death meter, this was a 8.5 out of 10.  I would have about 2-3 more bouts with having difficulty breathing (major) episodes before my transplant, which was scary.


One time I woke up around 4:30 AM to use the bathroom (25 feet from my bed) and (while walking slowly back to my bed) I was having extreme difficulty breathing.  So I stayed up and took a breathing treatment, hoping it would help.  It did for about 5 minutes, then I had to place myself on my Bi-Pap machine to try and 'calm' my lungs down. 5 AM rolled around and my Mom heard me in my room.  I told her I wasn't doing good.

In the back of my head, I thought this was going to be another ER call, and I was afraid I wasn't going to be able to calm my lungs down, as I breathed in so deep my rib cage was hurting and I was shaking. 

So what helped?  I cranked my oxygen to 10 liters (from 5 liters) and watched Mortal Kombat on TV (laughs), which it took my mind off my breathing and gradually my lungs calmed down, thanks to my Bi-Pap machine.  It took nearly 45 minutes.  I rolled back into bed and slept quite a bit that day.  I was tired. 

Thank You, Gretchen

So now I turn my attention to my lovely donor Gretchen (below), who 5 years later would save my life, and who's family I'm thankful for for making that heroic decision.  Here's to 2.5 years on my warranty :)

Hard Sun by Eddie Vedder (from the motion picture soundtrack Into The Wild- 2007)