Pull that needle! Yeah, OK . . .

Just a quickie update since so many have inquired. Thanks for all the calls and emails asking about me. I know I should repost when I'm out of the hospital, I'm sorry, but I got busy and forgot. Or the dog ate it. Wait I don't have a dog. It's one of those tried and true lame excuses. : ) The tuneup worked wonders, I can breathe again and the SOB is gone. I feel like a new woman. It always amazes me, how your body acclimates to the gradual downfall of sickness. I just forget how wonderful it feels to feel good again. Sad that it takes a hospital stay and a round of IV cocktails, to once again make me realize just how sick I was.

I ended up being in for a week. I responded so well that my docs let me go home to finish up my IVs at home for the second week. Thank goodness, I was getting bored of the walls, the view of the block wall, the TV and the food. One great thing about this admit was a CF friend of mine was also in house. We were able to visit from our doorways, masked and gloved of course. We had some good conversations and it helped the stay not be so monotonous. Thank you SW, for the visits, the adorable card and as always good to see you again. I wish we could be REAL friends and actually go out and do something together.

My last home infusion was at 5:00 pm Tuesday. I have never had a home health nurse come out to the house just to remove my port needle, because it isn't a big deal, usually. I have accessed my port, stuck the needle in myself, and removed it many times before, no biggie.

The nurse in the hospital had a hard time putting the needle in, which I've been told my port is difficult to access. She pushed it in hard and it HURT, the most ever while having it accessed. The line didn't work, so she pulled it out and tried again, with a new needle. The second time she pushed even harder, me yelping a 'YIKES' to her. Wow I've never had anyone use such force, trying to put the needle in. She established that the line was indeed good to go, got a blood return and it flushed fine. But it just didn't feel right all week at home. It hurt the whole time, and I felt a pinching, needle stick feeling when I moved certain ways. I had never felt any of this before. And of course, with all the August heat wave, the port area felt sticky, gross and sweaty under the clear plastic tagaderm patch protecting it.

With the last IV dose done, I had visions of a needle-free, plastic-free, nice long relaxing shower. I couldn't wait to take the sucker out. I washed up, gloved up and began peeling off the tagaderm, along with some skin. As I'm pulling it off, the needle pinch feeling starts, so strong that I start to get nauseated. I had to peel a little, stop, peel some more, stop. I thought I was going to throw up, the feeling was grossing me out. I finally got the tagaderm off after about 5 minutes. I looked at the needle, it looked fine, no redness signaling infection, other than my irritated, blistered skin.

So here goes, I grab the red butterfly end of the needle and pinch. At this point, the needle is supposed to pop out, no problem, but it resisted. I sit down and my head is spinning. I rest a few minutes, until the queasiness subsides, stand up and try again. I pinch hard again, but no go. At this point, I have a cold sweat and pass out feeling. Oh crap, why didn't it come out? It's at the end of the day and I'm thinking, if I have to call out a nurse, I have to do it now. I decide to try once more before I make the call. I take a deep breath, so I don't keel over trying to pull the flippin' needle out of my chest. I'm determined, I pinch, hard as I can, and finally . . . pop. . . it came out. OMG, what a relief!! I was giddy with thankfulness that the evil needle relented. I won, bwa ha ha ha.


The evil needle after the fact.

It's funny, the quick transition I go through after a needle is pulled. I go from an exhausted hospital patient, getting up every 6 hours and do an IV to feeling back to my old self, I'm done, carefree feeling. Happy to be disconnected from drug routines and reconnect to gloriously boring life.

And happy to take a plastic free shower again after 2 weeks.

That time again, in more ways than one.

I know, I'm a bad, bad blogger. My entries have become few and far between. It's not that I haven't had anything to say or write about. Trust me, I've got PLENTY to say. Unfortunately, the all consuming subject I have plenty to say about, I won't talk about here. And those close to me, know what I'm referring to.

That said, literally, everything else has taken a back burner. So much so, that I've been neglectful of certain areas of my life, like this blog.

And sleep.

Oh, how I miss my sleep.

My mind will not shut off. The 2am bewitching hour rolls around, and as if on cue . . . *bink*. . . my eyes open, I'm wide awake. I toss and turn, arrange my pillows in a myriad of mounded configurations, trying to get comfortable. I switch my brain to think of peaceful, relaxing things, but to no avail. My insomnia then becomes Terry's problem as I keep him up with my bed bouncing, trying-to-get-comfortable gymnastics. No matter how hard I try, I cannot go back to sleep. I finally give up and get up. I know I'm done for the night, ugh.

Being a sleep deprived Jodi, is not a pretty sight. Crankiness and no patience sets in along with couch potato-itis. The result? About 15 lbs. in the last year, over and above a comfortable weight for me. I know I need to get my sorry butt up and out for walks or exercising, but I'm too tired. My mind in turn tells me that if I do indeed try to exercise, I'll wear myself out so therefore maybe I'll sleep better. I also know that my decreasing lung function contributes to the 'no motivation to exercise.' Hmmmm, I've got to find a way around the Catch 22, vicious, mind-tired cycle. Can someone give me a kick start?

Numerous nights of sleep deprivation, add in emotional stress, a huge pinch of uncontrollable coughing, becomes a recipe for full scale health decline. I've felt it coming for at least a month. My last clinic visit along with my declining PFTs were revealing the all too familiar story and ending for me.

Last weekend was the last straw. I coughed all night for 2 solid nights, not sleeping a wink. Drudging up the stairs became a chore fighting for breath. Low grade fevers hovered over me like a cloud. Any sort of energy to do anything was a passing thought. Infection was settling in and I was physically and mentally spent.

I waved the white flag and surrendered.
I emailed my CF nurse on Tuesday morning first thing, asking for a 'sick' appointment to be seen in clinic. Within minutes of my email, she called me and said, "girl, with all you've got going, I've been wondered when you would concede. I'm requesting you be admitted right now, sight unseen. I know when you ask to come in, you're ready." She was absolutely right, I know when it's time.

Time again for a tune up.

I checked in to USC Tuesday @ noon for another round of IV antibiotic cocktails. It is now Saturday, I'm still in lock up and feeling much better. The productive cough has subsided . . . the magic, poisonous elixirs are doing their job. I'm starting to get bored, and feel like a caged animal.

That's when I know, it's time.
Time to go back home.

Avocados, peaches, and lemons . . . Oh my!

While I love each of these fruits individually, I'm surprised I still do eat them. As a child I had a love/hate relationship with all three.
Let me explain . . .

I lived in the same house my whole childhood. My Dad planted dichondra lawn in both the front and back yards. You know the stuff, it is so fragile, children can't play on it and direct sunlight burns it. My brothers and I were constantly being told, 'stay off the grass, you'll kill it.' Great, so we had the yard that no kids could play on. And we were teased for having flower shaped grass.

To keep the freakin dichondra shaded, we had 3 very strategically placed trees in the back yard, so the sun rays never reached and burned the lawn. Yep, you guessed it . . . a HUGE avocado tree, a peach tree and a lemon tree. If we were to have large trees in the yard, they might as well produce something to eat, was my Dad's rationalization.

The trees grew gigantic and produced so much fruit, that the daily chore of picking the bounty became 'the kids' job. After all, we liked to climb trees, didn't we? Heh. We were also designated as the 'pick-up-the-rotten-fruit-surrounded-by-fruit-flies-and-maggots-squashed-into-the-dichondra. Especially the peaches. Amazing how nasty they became after falling to the ground, sitting in hot weather. Step in one, and it felt like stepping in squeeshy dog poop. GACK! The lemon tree was my personal enemy because the thorns always stuck me with it's sharp 'knives' as I called them. The tree was not happy until I came out of the lemon picking session pricked and covered in blood drips.

It seemed the fruit bearing season lasted F O R E V E R. Our summers were consumed by picking, bagging, squeezing, juicing, cutting, pitting, skinning, peeling, and freezing.

On the upside, I do remember the perks that went along with the fruit monsters. Fresh baked peach cobbler, peach pie, peaches and vanilla ice cream, fresh squeezed lemonade, lemon meringue pie, lemon cake, and guacamole. However, by the end of the fruit season, I'd be so sick of eating endless versions of the same fruit over and over again. I think it was my Mom's mission in life to see how many different ways she could use the fruit at every meal. I swore as a kid that when I became an adult, I would never eat peach cobbler again.

One last big perk was the avocado tree. It produced way many more than our family could possibly eat or use. So, my brother and I would put on our entrepreneur hats and sell them. We filled brown lunch bags full of avocados, stacked the bulging bags in a wagon, and walked around the neighborhood, 50¢ a bag. We never had a problem selling out every day. For the life of me, I couldn't understand why someone would spend a whole 50¢ for a bag of ugly, wrinkly fruit. I HATED them with a passion. An hour of selling would finance our walk to the local Savon, to buy candy bars 3 for a 25¢ or a triple scoop of ice cream from the ice cream counter with change left over. Now that was worth it in my mind.

Oh how things change as we age. Now I LOVE that ugly, green fruit, it kills me to pay $2 a pop for an avocado.

Last week, I picked the fragrant, ripe, 20 or so lemons from the tree in my backyard. I traced my Mom's steps as I squeezed out every ounce of juice into ice cube trays and froze them to have instant, fresh lemon juice at my disposal year round. And my lemons are THE best!

The smell of the citrusy, sour juice made me want the jello lemon cake my Mom made. So of course, when all the juice was squeezed, I made the luscious, lemon cake. Just seeing my Moms handwriting on the old, faded recipe card flooded my mind with the memories of those damn trees and the lost summers picking fruit.

I think I'll go to the store to buy some peaches. I need to make some peach cobbler, just because.

Audrey's First Birthday Portraits

I couldn't let Audrey's first birthday pass without a portrait.
Jen and I made a trip to Picture People at the mall.
They took tons of poses, these three we couldn't resist.
She is such a little sweetheart and a living little doll.

No Go

The clinical trial I began is a no go. I had a complete physical, urine test, a host of blood tests, sputum samples, PFTs (pulmonary function tests), and lung xray. The test results came back and I got the call on Monday afternoon. I failed the criteria to participate in the trial.

WHY?

Medically, I failed for one reason only. My sputum cultures tested negative for Pseudomonas, a common bacterial organism found in CF that the cipro targets. While the negative culture fails me for the trial, it is great news for my medically. One less bug in my lungs to cause problems and damage. I've actually tested negative for Pseudomonas for about a year now. When the MRSA bug I do test positive for, becomes dominant in my lungs and flares, the Pseudomonas takes a back seat, and vice versa. I seem to always have either/or created lung havoc.

So I guess I have to wait for the next clinical trial to come along I qualify for. Until then, I have 8 less drives into LA.

Audrey's First Birthday Party

I can't believe Audrey is one year old already. Where does the time go?



Jen had planned a Tinkerbell party at our nearby park so the kidlets had plenty of room to play.
We woke to an overcast drizzly morning, but were hoping the sky would clear for the 2:00 party.
At 11:00, the sky opened up and the rain soaked the ground. Visions of children playing in the wet grass and sand was not what we had planned. By 1:00, it was still drizzling and the sky threatening. A last minute decision was made to just have it here at the house. Phone calls were made to all the party-goers to announce the switch. We all clicked into high gear to unpack the park goodies to set up in the house. In a mere 20 minutes, the house was ready, all decked out in Tinkerbell decorations. You would have never known the party wasn't planned here all along.

Jen resurrected her cake decorating skills and made a beautiful Tinkerbell cake. We put out an assortment of homemade goodies and drinks. Everyone showed up and it turned out to be a very nice day afterall.

Happy Birthday baby face! We love you very much.

Guinea pig time once again

My Doc asked me last month if I would participate in another CF clinical trial. He knows me and my eager willingness to help find new treatments that make our CF lives healthier, and hopefully, last longer. And who doesn't want to live longer when you've been told you won't.
So sure, let's do it.

This trial is testing a new application of the broad-spectrum antibiotic Ciprofloxacin, commonly known as Cipro. Most people know it as an antibiotic prescribed to treat bacterial infections, such as a Urinary Tract Infection. It is most commonly used as an oral tablet or a solution through an IV. I've used it in several of my IV rounds, usually accompanied by another antibiotic IV. But in the trial, I will be inhaling a powder version directly into my lungs using a newly developed inhaler device, which is also being tested.

The trial will last approximately 3 months, 9 visits spread throughout the time frame. I will be subjected to complete physicals, lung xrays, sputum samples, urine tests, pregnancy tests (ha ha, don't think so), blood tests and pulmonary function testing at every visit. The study Doc and staff will poke, prod and analyze me, charting my results, if any. This is also a blind study, so I will not know if I am actually taking the drug or a placebo. I am randomly assigned, so even the doc doesn't know if I am actually on the drug.

I have mentioned to people that I subject myself to clinical trials. Some are horrified and ask, "why would you do such a thing" or "why subject yourself to so many unnecessary tests and pain." And I respond, "why not, if I don't, who will?"

When you have an incurable, terminal disease, you know down deep that your only new options for medical hope lie in the unknown and untested. We CFers are a tough breed. We withstand so much medical intervention and dangerous, poisonous drugs just to stay healthy. I know many of us are willing to do just about anything to help each other by donating our time and bodies, testing new treatments, hoping for the cure. So what, we are poked a few more times . . . big deal . . . I've had much worse.

Without us, the CF patients, offering our bodies to try new drugs or new applications of old standby drugs, new treatments never make it into the pipeline or mainstream as a viable medical option. I'm proud to be able to have enough lung function left to be able to participate in such important research. It could mean a better chance at life for the just diagnosed child next door.

Wish me luck, I start tomorrow, Tuesday June 16.

Trust me, the most painful part will be fighting the traffic driving into downtown LA. ; )

Another Grandbaby!

I have some good news I can finally share.
This is an official announcement that we are grandparents again!
Terry's son Shaun and girlfriend Amanda, who live in Portland OR had a son, named Brody Shaun.



Of course, Terry is chomping at the bit to see his new grandbaby boy. We planned to drive up 2 weeks ago, something came up, so we had to cancel. As it turned out, Terry had a job walk and measure at a grocery store owned by Kroger in Richmond, CA a suburb of Oakland. YAY, a day's work! It couldn't have worked out more perfect to coincide with our drive to Portland.

Here's the plan of our quickie turn around road trip:

Thursday May 14 - leave before the butt crack of dawn to beat LA traffic, arrive early afternoon Berkeley BART station, park the car and BART over to SF, spend a couple hours toodleing around SF, eat dinner at Fisherman's Wharf area. Early evening BART back over to Berkeley BART station to get the car, drive the 1/2 hour to our hotel in Richmond.

Friday May 15 - Terry works 6am until lunch or whenever he finishes up the store measure/walk, while I stay at the hotel. Drive 10 hours to Portland, OR.

Saturday May 16 & Sunday May 17 - Visit all day with Shaun, Amanda and baby.

Monday May 18 - Drive 10 hours to Tracy CA (South of Sacramento), check in hotel.

Tuesday May 19th - Drive 7 hours to home.

I wish we could take our time to visit more days or see relatives along the way, but this is a time and money crunch visit. Terry has a ton of work applications out there, and we would hate to miss an opportunity of a call back.

I'll post some pix when we return.
Now, if I could just remember where I put our travel toothbrushes.

Piggy hysteria

*cough, cough* again *cough, cough*

This is my life, a chronic cougher. Most times I don't even notice my random coughs unless they become full on heaving attacks. Coughing in public, has always been a sticky wicket for me. I try very hard to discreetly cough into my elbow or both hands, to not only muffle the sound but to catch my contagious germies that everyone assumes I'm so generously sharing with them.

It never ceases to amaze me the comments people so freely let fly. Comments like, "I had that last week" (don't think so) or "That doesn't sound too good" (really?) or "Maybe you should see a Dr." Um, yeah, if you only knew how often I DO see the Dr. and still, the cough never goes away. I have my canned answer to all the remarks, "I'm not contagious, it's my allergies" That usually shuts them up and puts them at ease.

So today in the grocery store line. . .

*cough, cough* again *cough, cough*

turns into another
*cough, cough* again *cough, cough*

back away from the line, turn my head and
*cough, cough* again *cough, cough*

All the while coughing, I was trying very hard to discreetly mask my cough as I always do. I'm very aware of the stares of horror my sudden outburst of coughs create. I finally feel like I'm composed and proceed to the end of the line again. The woman in front of me turns and says, "Have you heard about the swine flu? Maybe you should stay home, just in case."

Me, in disbelief, ditched my canned response and abruptly said, "No swine flu here, just a little terminal lung disease." She quickly turned around forward and I switched lines. I felt my blood boil and knew I had to leave the area before explosion. Ugh, I so felt like a labeled pariah. Maybe I should just stamp my forehead with "no I'm not contagious."

The media is frenzied over the swine flu. True, it could become a reality, rendering a multitude of people sick. Granted a flu that will make them sick and have to stay home from work or school. For the most part, normal people who catch it will not die. Only those with chronic health problems will be at risk for death, like me.

Welcome to my world. I take precautions every single day of my life to keep from getting sick. My trusty bottles of Purell follow me everywhere, ready at a moments notice to wash my hands. I worry every day about catching a cold from grocery shopping, a worse scenario for me that the flu for you. When in public, I meticulously pay attention to everyone around me, scoping out potential sick people. The slightest sniffle or cough detours my path to go out of my way to avoid them, but in a discreet way. I would never think to make a rude comment about the state of their health.

You can bet if the swine flu invades OC, I won't go anywhere or have very little contact with anyone. I won't think twice about going in public with mask and gloves. Stare at me all you want, won't bother me.

*Snort snort* Now that I think about it, maybe the sight of me decked out in my protective garb will keep everyone away from me. 

It would sure make my life a whole lot easier.

A happy, pooped weekend

This last weekend was interesting. Both extremely busy, productive and surprising in many ways.
Why pooped? Well read on and see why . . .

First off, Saturday was our annual neighborhood garage sale. It was sponsored by our tract realtors who heavily advertise, put up signs and bring us donuts as we sell. We participate every year to rid ourselves of cast offs, junk, clothes, and trinkets. We always have a great turn out making our day worth while. This year was no different . . . to the tune of $407.00, a truck load of extras hauled off to Goodwill and lots of empty boxes. YAY!

I vowed to never leave my kids the burdensome task of cleaning out my collected junk when I leave this earth. I finally came to the conclusion that I needed to purge all the stuff I've had piled in closets, thinking someday I'll use it or need it. If it hadn't touched it for a year, it was tagged and earmarked for elimination from my life.

For weeks before the big day, I'd take a room at a time, purposefully touching just about every item we own. I'd ask myself, do I need it? At first it was hard to part with some things, but it got easier as I mentally let go. After a while I was on a mission. I was a mad woman, roving from room to room glaring at everything, what else can I get rid of . . . muuwaaahaahaa!

Then came the difficult task. My Mom's boxed things that I had saved, for the ole sentimental reasons. Like the silver plated tea service passed down to my Mom from my dear great Aunt Lee. I have never used it, Jen didn't want a stuffy looking, ornate silver set. What to do? Price it and see what happens. BTW, it never sold and is now on Craigs list.

When my mom passed away 9 years ago, she had at least a 50 year accumulation of stuff. In my eyes a lot of it was junk, but for whatever reasons, she held on to things that should have been tossed years ago. Being a child of the depression, surely had some impact in her hoarding. Much of it held sentimental value, like old dishes from when she and my Dad first got married, even though boxed and not used for decades. It was an enormous undertaking to sort through and get rid of her treasures. I felt guilty every time I tossed, sold, or gave away. These were her things that she held dear. I was, in essence, disecting and throwing her life away.

The things my Mom's husband saved was a whole different story. His domain was the garage, filled with tools, do dads, gizmos, and the most scary, containers of unknown dangerous chemicals. His passing 7 years before my Mom, left the garage intact with his crazy crap. Thank goodness his kids filled 3 truckloads of stinky, greasy unknown containers to the hazardous waste dump.

Back to the sale . . . I was so busy on Thursday and Friday organizing, pricing, boxing and unboxing junk. I ate on the run and barely noticed that I had not gone to the bathroom, you know, #2 bathroom. I felt constipated but really, nothing registered. I quit taking my enzymes a couple months back and had no problems at all. I chalked my 'lack of dump' to busy and nerves.

Saturday morning came early, unpacking boxes at 6am for the early birds. I had a stomach ache and blew it off. As the day progressed, the ache continued and the urge to go was pronounced but I couldn't go. The sale ended in the afternoon, we sent out for chinese take out, ate, and it HIT! I HAVE TO GO NOW! Problem is I couldn't. Oye, I felt like I needed a roto rooter job. Even though I have never experienced this problem, I knew exactly what was wrong, a bowel obstruction. In the CF world, bowel obstructions are common. Not being able to digest foods properly leads to all kinds of GI problems with back ups, diarrhea, extreme gas, and not absorbing calories, nutrients and vitamins the body needs.

The pain became excruciating even after taking Miralax and Milk of Magnesia. Nothing seemed to work. I was in agony and crying. I couldn't sit, I couldn't stand. Finally at 6pm, I cried uncle and begged Terry to take me to the ER. Oh great, what in the world would they have to do to my bum, were thoughts that raced through my mind. The revolting image of a plumbers snake, probing deeper and deeper, overpowered my mind as I writhed in the car seat trying to find a position less painful.

I enter the ER, lots of people, great. I fill out the quicky info form and immediately circle the #10 pain face on the scale of 1 to 10, what is your pain. That should speed up my admit. They bring me back within 5 minutes, take my blood pressure, temp, and ask a few ??. As the nurse clipped the lovely hospital bracelet on my wrist, I felt liquid warmth, in my jeans. Uh oh, I plead for a bathroom NOW! I now know the liquid miracles I drank earlier were finally working. It didn't take long for the whole load to evacuate. WHEW, HUGE RELIEF! I felt like I had just given birth to several softballs, but I didn't care, they were gone from me, happily being flushed down the toilet.

I exited the bathroom with a calm, relaxed look on my face and Terry knew instantly what had happened. I told the nurse, but she said I still had to see the Dr. since I was officially admitted to ER. Thankfully, the Doc came right over, asked if I felt better (well, yeah), looked at me in amazement and couldn't believe he was talking to a 53 yo CFer (oh no, here we go again), asked if I wanted an exam, (no thanks), and said have a great evening! Outta there!

We drive home, relieved, me completely 'pooped' out tired and in bed early. Turned out to be a 'productive' day all around. ; )

And enzymes . . . definitely back on my menu with meals. Oh joy.