Sunday, February 22, 2009

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.

Saturday, February 14, 2009

Happy Valentine's Day - BAH!



Surely, I can't be the only woman who feels this way. 
I know I must be in the minority, but I just can't bring myself to celebrate a manufactured, fake holiday. I've always felt Valentine's Day was an attempt by card companies, florists, restaurants, jewelers, et al just to make a buck. 
Sorry, I don't buy it, I recognize a scam when I see it.
Thankfully, Terry feels the same way.
We are happy with a smooch and a smile, and we are on our way with just another day.

Thursday, February 12, 2009

53!


Woot, woot!

Toot my own horn, you betcha.
Besides, a birthday is a good excuse to eat cake.

Every year when my birthday rolls around, I literally view it as a gift. The gift of more time with those I love. As I grow older, I appreciate my bonus days, months and years I've been blessed with, even if it is a challenge.


The thoughts of aging and the apprehension associated with advancing birthdays, I welcome. My aging face can produce all the wrinkles it wants, not gonna bother me. My few gray hairs can have a party and multiply with reckless abandon, who cares? Wrinkles and gray hair seem so trivial in the grand scheme of life.

My next goal is to welcome 54. After all, it is only 364 days away!

And another day to eat cake.

Saturday, February 7, 2009

SOB exercise

Yes, in the literal sense.
But also, in my world SOB = short of breath.
There is most definitely a double meaning to this blog title.

I've always LOVED exercise - walking, snow skiing, step aerobics, swimming, the gym. Whatever I did, I enjoyed it, it came easy, and I always felt better afterward.

As we all know, vigorous exercise is both good for the lungs and heart. Exercise is an important key in the CF world, for the airway clearance component. Break a sweat, *cough*, clear the lungs, *cough*, the more aerobic exercise, *cough*, the better. But as the CF lungs progress, exercise becomes more difficult, not being able to take a deep breath in. A Catch 22 quagmire.

The last 5 years has been a period of gradual slowing down. My snow skies, just lay there waiting to see snow. Billy BIanks Tae Bo and Buns of Steel videos pushed to the dark recesses of the shelf, collecting dust. My 24 hour fitness membership card is hiding in a closet, somewhere. The treadmill, broke and is long gone. The pool, well, that is a big, huge puddle of germs I wouldn't even dare face anymore. I mostly just walk now, and try to go on at least an hour walk when I do. Used to be everyday, but now down to maybe a couple days a week or when Terry can coax me. Even walking, makes me SOB. It's painful and anxiety sets in when I try to exercise and can't breathe. Exercise feels like it has become a form of torture . . . and it annoys me to think I just can't do what I want.

I was in clinic a week ago, and my doc asked how the exercise was going. I sheepishly looked at him, knowing what was coming, and said, "Well, I'm still walking." He looked at me, smiling of course, and said, "You need to step it up a notch, try running a little."

RUNNING?!?!? Are you flipping kidding me??? I've NEVER been able to run, even as a kid. Of all the exercise in the world, that is the ONE thing I cannot do. Oh, I have very vivid memories of NOT being able to run.

I grew up on a street where every home had 2-3 kids, mostly boys. I played outside all the time, with the boys and all their competitiveness. We happened to live in the exact center of our block, so our house was the starting point for running races to the corner. I always came in last, knowing by the 4th house I was toast. I was forever teased that I couldn't run, pegged because I was the chubby, girl.

Jr. high PE was a nightmare for me. I remember in the early 60s, President Kennedy set up a standard physical fitness test every student must complete. To pass the tests, everyone was required to do a certain amount of sit ups, pull ups, various other fitness standards and of course 50 yard dash, 100 yard dash and the dreaded 600 yard run.

I remember pleading with my PE teachers to be excused from running. I explained that I had asthma and it hurt to run. They showed no mercy, and instead yelled at me, with pointed finger, to get out there and RUN! Again, I always came in with the bunch of girls who were always last. My forehead encrusted with white salty residue from sweating profusely, my face beet red, my lungs aching and heaving to breathe. I can still see Miss DeOlden's face waving me to the finish line yelling, "hurry up", holding her stop watch in anticipation, just so I can hear the words, "FAIL." Blech.

Deja vu.

I saw Dr. R's face asking me to run and my mind immediately flashed back to Miss DeOlden's face. I told him I can't run but that I would promise to try something aerobic, to step it up.

So here I sit, it's been over a week, and oops, still haven't started.
I know the first week is the hardest, I've just got to get over that hurdle.

Better get off my arse and keep my promise to myself and Dr. R.