Pop, gurgle, cough, spit- Uh oh!!

Yuck, Hemoptysis or coughing up blood.

Nothing prepares me for the shock when I see bright, red blood come directly from my lungs. It is an unmistakeable feeling and I know immediately what's going to follow as soon as the 'pop' happens.

I've had 3 other episodes of Hemoptysis in the past, mostly just a few coughs of red, it subsided and went away on it's own. This time was very different and scared me.

I was babysitting the grandbabies overnight and had just put them to bed. I came back downstairs to the family room and felt it, took a deep breath and felt the sickening, ooze feeling and the gurgles. I ran to the bathroom and coughed, a mouthful of blood spilled into the toilet. My eyes widened and I felt weird. Never have I seen an amount like that.

I ran, if you want to call it running, back upstairs to tell Terry. It was 7:30pm. I coughed a few more times trying to clear the goo from my left lung. Every 5 minutes, the bright red, fresh blood came up about a teaspoon to a tablespoon at a time. I called Jen and told her what was happening, my fear that I might have to go to the emergency room if it got worse. She came right over to spend the night here rather than wake the kids and take them home.

I started drinking iced water to try to restrict capillaries and blood flow. Finally by 10:00pm it seemed to calm down, I decided to try to get some sleep, if possible. I tossed and turned coughing and spitting until about 1:00am. I went back downstairs to try to sleep upright in the recliner couch. It was then that it happened again, BIG gurgle, in the bathroom, filling my mouth twice.

HUGE red flags and whistles went off, screaming, 'too much'. I called my on-call Dr. emergency line, thank goodness Dr. R was on-call that night. After confirming the amounts were 'way too much' he asked where was my nearest emergency room. He said to go to Hoag in Newport Beach, he knew a few pulmonologists there.

I could hear in Dr. R's tired voice as he stressed 'nearest', I then knew, how serious this was. The fear of bleeding to death crossed my mind as this happened to an online acquaintance just 2 weeks ago. We jumped in the car, got to Hoag in 10 minutes, and entered the emergency room. We were the only ones in the waiting room thank God. As soon as the nurses saw me carrying bloody kleenexes near my mouth they rushed me back. I was seen by a emergency doc right away, he called my Dr. back and they agreed to admit me and schedule a bronchoscopy ASAP to see what was going on. By the time I got to a room, it was 9:00am, still bleeding off and on. The bronch was scheduled for 1:00pm.

At this point I was very uneasy, not being near my doc and hospital. Over the years I have dealt with too many doctors and nurses that don't have a clue about CF. Not that they should, that is why we have specialized docs, clinics and hospitals that know how to treat CF. I've heard so many ludicrous questions about my CF from medical personnel, like, 'Are you sure you have CF, you don't look like it' , 'But you are much too old to even possibly have CF' , 'Were you exposed to asbestos, is that how you have this condition?' , and my favorite and most common, 'How did you catch CF?'. Grrrrr, I hear docs and nurses say these things, and now I'm supposed to let you treat me? The Hoag experience in the emergency room was no exception. I clearly have no patience for staff wanting 'to see the old CF patient' and proceed to ask me a million dumb questions. I'm so done being a dog and pony show piece.

Upon meeting the pulmonolgist that would perform the bronch, he put me at ease. He interned at National Jewish Hospital in Denver for 3 years, a world renowned pulmonary hospital treating CF, TB and other lung ailments. He has treated 100s of CF patients and is very well versed in CF care. He chatted with me for quite a while and explained the bronch in detail. Great, a tube threaded up my nose and down into my lungs for a peek see. Yeah, something definitely NOT looking forward to. The bronch lasted about 1/2 hour, I was awake but given Versed that made me sleepy yet aware. I could hear him suctioning out about a cup of blood, and he asked me to cough a few times. He allowed me to wake enough for me to see the tubes coming out of my nose.

The bronch revealed an Aneurysm (a blood filled balloon vessel ready to pop) and several bleeder vessels that blew first in my left lower lobe. A call was placed to Dr. R and an emergency embolization was agreed upon, scheduled at 5:00. An embolization is performed by interventional radiology. A catheter is threaded up through the main groin artery, and into the lungs. A dye is injected to isolate the bleeders and then a superglue type medication injected to chemically cauterize the bleeds. While they were in there, they took care of the Aneurysm. Thank God I went in when I did, if that Aneurysm had popped, I could have bled to death.

Again, I was awake but in la la land for the embolization with the same drug Versed. They woke me during the last part of the procedure, asking me to hold my breath for xrays to make sure they got all the bleeders. And I experienced them pulling out the catheters, ugh. This was a very stressful, full day. No sleep, no food, and 2 nerve wracking procedures.

The good news, the bleeding, continued very slightly the first night, which is expected. By the next day, nearly nothing was coming up - YEAH! The doc wanted to keep me in the hospital for observation through Monday, but I pleaded to let me go home to sleep. He finally agreed, since I was pretty stable, with the instructions to come right back if the bleeds started up again. Done deal, so now I'm home.

Other than I feel like I've been kicked in the groin and a slight sore throat from the bronch, I feel pretty good. Just not going to do ANYTHING the next couple of days. I really don't want a repeat of Thursday.

Welcome to the world of CF. I just never know from day to day what I will face. And another glaring reminder of just how fragile and precarious my life has become.