Friday, March 31, 2006

Why Hypertonic Saline Treatments (should) Work

Some of the best discoveries happen quite by accident--telephones, silly putty and popsicles, just to name a few. The newest breakthrough in treatments for managing CF was also an incidental discovery. Someone noticed that people with CF who happened to be surfers exhibited fewer lung exacerbations than expected. This led to further investigation, and formal research of the benefits of salt water.

Although prevailing research for the use of hypertonic saline took place approximately 5 or more years ago, the use of hypertonic saline inhalation treatments for mucus clearance is the latest buzz in the CF world. My sincere appreciation goes out to those of you (and you know who you are) who were willing and able to participate in the clinical trials for this latest advance. In my opinion, every little bit helps when it comes to research, especially when the studies result in a worthwhile treatment option.

For those out there who may be starting on a regimen of nebulized hypertonic saline, or those who have been on it for awhile and can't seem to tell if it's making a difference or not, I'd like to explain in plain English the science behind the solution (pun intended).

First, let's get some background on those fancy scientific words.

Hypertonic saline solution: this means that the ratio of salt to water in the solution is greater than the ratio of salt to water in the cells of the body. The body prefers that its cells are in an isotonic state, meaning that the ratios of salt to water inside the cell are equal to the amounts in the rest of the body's cells.

In people with CF, our lungs are pretty dried out, which is related to the fact that we secrete so much salt when we sweat, and that salt pulls with it a lot of the water molecules we need. Without that water in our cells, it is very hard to effectively cough up the thick mucus we produce. There's so much gunk in there that needs to come out, but the body chemistry isn't right to make that happen easily. It's about as effective as trying to go the distance on a slip-n-slide before you turn on the water.

The amount of salt (concentration) in a hypertonic saline solution is different from the amount of salt in the cells lining our lungs. (This is why it is imperative that the proper concentration (i.e. 7%) be used in the nebulizer). This of course, makes things more moist in there, which is good. The increased moisture in the cells lining our lungs makes it much easier to cough productively.

Although the body is designed in such a way that the introduction of the high concentration of salt trigger's the cells to produce moisture to accomodate the chemical imbalance, many CF patients are on medications that interfere with this function of the body. Medications containing anti-histamines to deal with allergies and some antidepressants for example, rob the body of moisture and cause a state of dehydration. Also, diarrhea (not uncommon for CF patients with pancreatic insufficiency) can further deplete the body's water supply.

The greatest benefit from the hypertonic saline treatment is not so much in the chemical processes that occur in the body, but in the physical changes that result. The beneficial physical change that results is that the environment in the lungs is wetter.

On a personal note, I feel like I am doing well with the hypertonic saline treatments. They are making me cough more, which is slightly annoying, but I know that coughing is a good thing. The more gunk I'm able to cough up, the less there is remaining in there to harbor a nasty infection. Hypertonic saline treatment might not make you "feel" better per se, like a bronchodilater will when it opens up the airways. That's because the treatment is more like a chemical form of chest PT, and not like taking a round of antibiotics. Slow and steady wins the race with this one.

Don't expect to feel a dramatic difference after a saline treatment; instead, be diligent with your treatments knowing that it is preventive in nature and will likely reduce the number of infections that you'll get later on. Yes, it can be cumbersome and annoying to have even more treatments to add to the daily regime, but 20-30 minutes spent following your treatment plan have potentially significant payoffs when it comes to quality of life.

I hope this explanation has been helpful. As with anything regarding your own treatments, please check with your doctor if you need more information.

Thursday, March 30, 2006

Elegy for a Crockpot

Last night Brad and I had to bid farewell to our trusty little crockpot. The entire thing tumbled out of the cupboard last night, the crock hit the kitchen floor and broke cleanly into four large pieces. This sounds silly, but I almost cried over it. Part of that might be because it hit my foot, but mostly I was sad because that little counter-top appliance was one of the first gifts we had received from our wedding registry. My mother-in-law got it for us while Brad and I were still engaged. In its honor, I have composed the following poem.

"Elegy for a Crockpot"

Oh trusty crockpot, tried and true
3 quarts of space for soup or stew,
you cooked all day and to our delight,
our meals were hot when we returned at night.
Never once did you protest
when my recipes were not the best.
The spaghetti noodles that turned to goo,
'twas not your fault! 'twas mine, 'tis true!
Our last meal together was that soup with the corn
and now that it's gone we're quite forlorn.
Never more will we fill you up
with tasty foods on which we'll sup.
We bid farewell to you dear friend
and feel such loss over your untimely end.
This poem perhaps is not archival,
but it's fitting for you, our 3 quart Rival.

Friday, March 24, 2006

Nearing Completion

In life, satisfaction is experienced when activities are brought to a state of completion. Loss of energy and loss of control are functions of incompletion. The result of completing things releases one's ability to create.

--William A. Ward

I can't believe I've been back at work for an entire week now! Time really does fly when you're having fun. Well, maybe fun isn't the right word, but it's good to feel productive. I feel like I have accomplished a lot not only by being at work, but by keeping up relatively well with health and work simultaneously. The most difficult part is still the matter of getting enough sleep. A couple times this week I went home in the middle of the day to take a nap, then came back to work. I'm glad I live so close to the office.

Maybe I should try to convert the area under my desk into a little lounge/sleep area like George Costanza did on Seinfeld. Then again, maybe not. That didn't work out too well for him.

I'm hoping that once I'm completely finished with the Levaquin I'll be back on track. Even the Anafranil isn't putting me to sleep like it used to. I wonder if that has anything to do with the recent changes to how many multivitamins I take. I'm not sure exactly what effects my malabsorption issues have on how my body uses each individual medication I take. Like everything else though, I suppose that's a learning process. And probably just like everything else, once I think I've gotten it figured out, it will change on me.

I can tell that something is slightly "off" somewhere. In addition to weird sleep patterns, I've been having some OCD issues. Nothing major where I'm a total nut-ball, but a few of the little things that had dissipated once I was on the medication have started to return a bit. For example, I had been doing really well for several months about keeping my keys and my glasses where I can find them easily. The last three days I have spent nearly half an hour each morning searching for one or the other. It's frustrating and embarrassing.

I almost forgot about the latest development with my meds. I have been doing the saline nebulizer treatments for several days now. I'm not sure that I can tell if it's working or not. The main thing I've noticed is that the treatment makes me cough--a LOT! I suppose that's good for keeping the gunk from collecting in my lungs. It's not a particularly comfortable cough though. Last night's treatment was more irritating to my lungs than anything else. I don't think I was really producing more sputum because of it. Oh well. It's only been a week. I'll keep documenting my progress.

Current mood: happy
Current snack: pretzel sticks and raspberry yogurt
Health-o-meter: 92% (slightly fatigued)
Emotional Weather: sunny, clear skies

Monday, March 20, 2006

Springing Back into Action

"Fear God and work hard."

--David Livingstone

Today was the big day. After being at home for almost 3 weeks, resting and recuperating from my recent pulmonary exacerbation, I returned to work! Whenever I return to work after a vacation or absence, I feel like I'm starting my first day of school. (Incidentally, my friend, Gerrit, one astutely observed that the first day of school was my favorite of the entire year.) It seemed almost fitting in a way that my grand return would happen to coincide with the first day of Spring.

It was a good day. I woke up on time and was able to have breakfast with my husband before he left. I made the bed, straightened up the apartment a little bit, and then had time for a good hot shower. At church on Sunday someone commented that I was "two shades from ghost", so I made sure I applied enough makeup and lipstick to look like I hadn't been living in my pajamas for a fortnight.

Most of my responsibilities today didn't involve a whole lot of energy, so it was a good way to ease back into things. Mostly I just sat at my desk and reviewed documents. Actually, before I could do that I had to spend some time re-mapping all of my shortcuts to locations on one of our servers. Apparently they changed things around while I was out and didn't bother to let me know. Luckily for me, my husband's computer interests have begun to rub off on me somewhat, so I was able to figure out what to do without calling the help desk.

I was a bit surprised at how tired I got so early in the day, but my lunch was able to revive me. I'll have to remember to bring along more snacky things in the future. I guess I had taken for granted how easily I could just mosey on into the kitchen and grab a snack from the fridge while at home. Time to restock my pretzel file at work it seems.

I'm looking forward to the week, and I'm looking forward to the exhaustion I'll feel at the end of it. There's a big difference between being tired because of illness and being tired because of an honest day's work. I'm so thankful that God has given me the blessing of my job and how accomodating it is to my situation. I couldn't have found a more ideal situation. God is so good. Even in those times when life isn't, God is.

Thursday, March 16, 2006

A Gold Star for My Chart

Nothing builds self-esteem and self-confidence
like accomplishment.

--Thomas Carlyle

Whether it was due to any substantial effort on my part, or just the reality that my body is responding to the Levaquin, I am basking in the glow of my excellent PFTs at today's CF Clinic appointment. I had gained even from last week, which is stunning. Tonight's appointment was going to determine whether I was making enough progress with just the oral antibiotics, or if we needed to change horses midstream and go the IV therapy route.

My doctor prescribed another 2 weeks of Levaquin, which is fine by me! I'm mildly allergic to it, so I'm intermittently itchy on the trunk of my body, but that is minimal discomfort. I'd much rather put up with a little bit of itchiness than be hospitalized or have to deal with IVs.

In other news, the nutritionist thinks that putting me on Prevacid would help with the malabsorption issues I have. I welcome any comments from you other CFers out there who may be taking something like that (I think Zantac was another one she mentioned). I recently had to increase the amount of vitamin supplements that I take because my bloodwork showed that they just weren't soaking into my bloodstream.

The other big development in my health care is that I'm going to be started on the hypertonic saline treatments that we've all read so much about lately. I've been using OTC saline sprays to irrigate my sinuses ever since surgery last spring, and I've hardly had any problems with that. I figure between living in a coastal area and doing the saline nebulizer treatments, this could definitely be a good thing for me.

All in all, things are on a good track it seems. I'm excited and happy about how things are. There are times though when it's not too fun to realize that in order to have this fulfilling, healthful life, I have to spend dozens of hourse each week doing treatments, taking meds, etc. But then I think that even if I were to add up all that time that I have to dedicate to my healthcare, the trade-off translates into a longer life. That puts it all into perspective for me. I think that's the real essence behind the CF Foundation's slogan "adding tomorrows every day".

Wednesday, March 15, 2006

So I Embellish a Little...

I enjoy the crafts on the show enormously, too, when we have experts in showing how to make things. You watch them thinking you'll go home and do the things yourself, which is fun.

--Jane Asher

I've always been a creative type. The first crafty thing I learned how to do was needlepoint. Then I learned cross-stitch. Whenever I'm taking a break from work--intentional or not-- I like doing some light-duty arts and crafts to pass the time. I got hooked on card-making about 3 years ago when I needed to find some sort of "occupational therapy" to help defuse my stress level. My mother-in-law continued to fuel my creative fire when she shared with me her love of stamping. I never did quite get into scrapbooking or "Creative Memories". I think I'm too much of a perfectionist to see a project of that magnitude through to the end! Although I haven't quite gotten the hang of the fancier stuff, I'm starting to get there thanks to a little present I bought myself at Michael's the other day. (Hooray for 40% off coupons!)

Today's picture is the embellishment tool kit that I bought. It's made by "Making Memories", one of the top names in scrapbook and papercraft products. I had been eyeing the set for quite awhile, but had no clue how to use things like eyelets and brads and all those nifty little trinkets that make a homemade care look...well...not quite so homemade. On my recent trip to visit my cousin, I noticed that she had the little tool kit for her scrapbooking stuff, so I, convinced her to show me how to use it. Very fun!

The funny part is, the process is almost exactly the same as what I used to do at my part-time job in college. I was given the task of cutting out several filters from a piece of fabric. I was handed a big cutting tool and an impressively large mallet, and told to make at least 500 little circles from the organdy fabric. Those filters were then going to be coated with different chemicals and used to catch particulate matter from the air. Of course, punching holes in paper with the little hammer in the Making Memories tool kit requires a much more delicate touch, but that doesn't mean it's any less satisfying to pound away!

So far I haven't done anything with eyelets (because I didn't buy any). The few cards I've made have had little brads added to them as an embellishment here and there. Eventually I'll branch out, but I figured I should start small. If anything, the handicrafts keep me sane while I wait to return to work.

Current mood: restless
Current snack: American cheese & mustard
Health-o-meter: 75% (dr. appt. tomorrow!)
Emotional weather: clear skies

Sunday, March 12, 2006

Prayer and Prescriptions

Try as you will, you cannot annihilate that eternal relic of the human heart, love.

--Victor Hugo

About a week and a half ago I was lying in bed next to my husband, propped up by several pillows as I struggled to breathe. I found myself smiling and completely happy despite my aching lungs. I was smiling because I knew that no matter what was going on and no matter what we were going to face at the next doctor appointment, I could count on Brad to be there.

For me, my relationship with my husband is every bit as important to my health as my enzymes and breathing treatments. I believe that there is a very strong connection to the human body through the human spirit. I believe that God designed us in that very way. When he created woman from man's rib, He did so deliberately.

Whenever I'm not feeling well, my husband makes sure that I don't overdo things. He urges me to rest (even when I don't want to!) and takes care of things around the house so that I'm not preoccupied by thinking about such things. He picks up prescriptions for me, he goes to bat with the insurance company and home healthcare nurses, and does it all without a moment of hesitation.

Right now as I'm in the process of battling a lung exacerbation, I don't have to worry about the outcome. My doctors have prescribed the right antibiotic to target the infection, but I know it takes more than just good science to make me whole. Brad is faithfully praying for me. Because I am a Christian, I know that prayer is far more powerful than anything my doctors could prescribe. There is much to be gained from the modern marvels of medical science, as is the case with antibiotics. My physical state is very much dependent on such things. However, my spiritual and emotional well-being is firmly rooted in knowing that I am married to an incredible man of faith.

Some people say that religion or faith is a crutch. If it is then I'm glad I have these crutches to hold us up because I certainly couldn't do it on my own!

Friday, March 10, 2006

Bedrest and Bubble Baths

We start to realize that there are anodynes in life that help us through the day. I don't care if it's a walk in the park, a look out the window, a good bubble bath--whatever. Even a meal you like or a friend you want to call. That helps us solve all this stuff in our head.

--Al Pacino

I've been resting at home for just over a week now, and I have to say, all this rest has been good for me. I'm so glad that I am able to rest and recover at home instead of the hosptial. Being in my own bed, surrounded by my own stuff, eating my favorite comfort foods and being able to email and chat on the phone with friends is good medicine. Although I can't deny that the Levaquin and TOBI are largely responsible for my progress as of late.

I didn't sleep very well last night and I woke up too early. That's okay though because it meant that I was able to putter around a little bit while Brad got ready for his day. I was glad for the opportunity to see him off to work for a change. I even packed a sack lunch for him, which made me feel like I was being productive at least in some small way.

After making some breakfast for myself, I turned up the dial on the electric blanket on the bed and took a short nap while the raindrops beat lightly against the window. It's nice to be able to hide from the world for a few more hours by being tucked cozily into bed--especially when there's nothing else I have the energy to do anyway.

Fresh from a nap, I called my friend Jen in NY. I think we both benefited a lot from the conversation. We're so similar in a lot of ways. She said that right now her big thing is going to the grocery store--it turns into a social event for her. She loves being able to stay at home with the baby, but I can appreciate her need to get out of the house every now and then too. Baby Josh was making all sorts of adorable squeaking and cooing noises in the background. I can't wait until Brad and I get a chance to go out there and see him in person.

For lunch I tried something new. I used some of those Pillsbury "Perfect Portions" biscuits and put some ham and cheese in them about halfway through baking. Mmmmmm. Those are a good way to put a lot of calories in a relatively small portion. I rounded out the meal with a glass of Instant Breakfast, and a cup of raspberry yogurt.

It's 3 in the afternoon and I'm still in my cozy pajamas and trying to think of what relaxing thing I should do next. Perhaps a bubble bath is in order followed by another nap. I'm not spoiled--I'm resting!

Current mood: calm
Current snack: grapes
Health-o-Meter: 70% and climbing!
Emotional weather: clear skies

Thursday, March 09, 2006

The Big Deal about B. Cepacia

Sometimes you do take your life in your hands going in certain places and it's very unpredictable,
but that's thrill of it,the excitement of it all.
I do like a little danger in life!!!

--Marc Almond

The results of last week's sputum culture have come back from the lab, and it appears that once again, B. cepacia is hosting a microbial gala in my lungs. Several years back when B. cepacia was first becoming such a hot topic in CF circles, I didn't really understand the full implication of how devastating this little bug could be. As research has expanded and more case studies have been examined, I have learned a lot more about B. cepacia.

B. cepacia's
first and foremost frightening aspect is that it is exceptionally resistant to all of the first line defense antiobiotics that are usually prescribed for those of us with CF. Rarely will one medication be sufficient to touch it let alone wipe it out. The trickiest part for doctors is in finding the right combination of antiobiotics that will have the greatest effect on the cepacia.

When dealing with B. cepacia, the "cure" is just as terrible as the disease. The medications that best combat cepacia are the heavy-duty ones with the nasty side-effects. In my particular case, the antibiotics that work best are the ones that need to be constantly monitored in order to avoid reaching levels of toxicity. The danger posed to the CNS, kidneys, and other vital organs is very real.

This is why those of us who culture B. cepacia must be sequestered from others with CF. My body already has adapted somewhat to this microorganism's presence; however, if I were to inadvertently pass along cepacia to someone else, the likelihood of passing along a swift and terrible infection is high.

I hate that having B. cepacia keeps me from being able to interact with others who have CF on an "in-person" level. On the other hand, I'm glad that such safeguards exist that keep me from harming other people. I can't even begin to imagine how awful I would feel if I knew that I was responsible for harming someone else--particularly someone else like me who already has enough of a struggle with health-issues.

Wednesday, March 08, 2006

God's Great Faithfulness

Because of the LORD's great love
we are not consumed,
for his compassions never fail.

Lamentations 3:22

Dear Friends,

Wow. What a week it has been. As always, God has continued to display His incredible faithfulness to us, and has demonstrated that there is absolutely nothing that escapes His attention.

A week ago I had a terrible doctor appointment (as many of you know from prior emails). There was talk of being hospitalized. Over the weekend my symptoms got worse and I experienced some rather frustrating and frightening complications. I alerted my doctor and he started getting the paperwork together to have me admitted to the hospital. For whatever reason, there was no room for me at the hospital, and things kept getting delayed. But all of this was in God’s large and capable hands. We continued to pray that solutions would be found and that I would get the proper medical attention I needed.

As of today (Wednesday) I still had not been admitted to the hospital, but I did manage to get an appointment with my CF specialist. I expressed to him that rather than waiting around for a hospital bed, we might as well get things started for me to be on IV antibiotics at home. He looked at my paperwork, and looked at the records I had been keeping of my symptoms and blood sugar levels, and said that the last piece of information he needed to make a decision was a PFT (lung function test). They brought in the machine, and I was able to do 5 breathing tests. This alone was incredible since last week I could barely get through 3 of them without coughing continuously and being completed wiped out afterward. Last week’s percentage was 66. Tonight I was close to 80!!! In my opinion, that is nothing short of a miracle, and a true testimony to God’s direct involvement in how my body works. Only the One who created all those bronchioles, lobes, and airways could have touched them in order to heal them so much in such a short period of time. I am certain that even my own best efforts with my medications and breathing treatments could not have produced such dramatic results.

My doctor’s advice is to stay the course with a break from work while I finish the oral antibiotics. He has also prescribed insulin which will keep me from experiencing such wild episodes of hyperglycemia. He is of the opinion that I am not going to become insulin dependent, but rather, I just need a little “boost” while my body is confused as it fights off infection. He expects the need for insulin to drop off within the next week.

I have a follow-up appointment in a week. Please continue to pray that God will be ever-present in healing my body and restoring me to the excellent health that I have grown accustomed to. Please join me and my family as we rejoice in God’s provision for us, and for His perfect plan for my life. I honestly don’t know how others who struggle with this brutal disease can do it without God’s help.

Much love to all of you. Thank you again for your prayers and for the encouraging emails and phone calls lately. They mean so much.

Monday, March 06, 2006

Status Report

Waiting for the fish to bite or waiting for wind to fly a kite. Or waiting around for Friday night or waiting perhaps for their Uncle Jake or a pot to boil or a better break or a string of pearls or a pair of pants or a wig with curls or another chance. Everyone is just waiting.

Theodor Geisel

Well, today was not my day to get a bed at the hospital. But that's okay. I don't mind waiting for a bit. It's nice to be able to prepare myself mentally for what lies ahead. My mom came to spend the day with me just so I wouldn't be by myself, and so that if I did happen to get a bed then Brad wouldn't have to drive home to get me--he'd just be able leave work and meet us at the hospital.

But, like I already said, that wasn't the case. Mom and I did a bit of pre-hospital shopping (jammies, slipper-socks and a sooooo cozy robe). It's nice to have some designated duds for hospital cooties. I think the walking around and trying clothes on helped keep my blood sugar under control.

That's been the major concern the last couple days. On Friday night I was feeling particularly icky. I was shaky and feverish and PARCHED. I should have guessed from my extreme thirst what was going on, but for someone who eats as many pretzels as I do, being thirsty is sort of a constant thing. My blood sugar was well over 400. For those of you who don't know what that means, it means that I was in trouble. Since my last oral glucose tolerance test showed that I wasn't diabetic, I was quite shocked to see such a terrible "score." I had some old insulin from the last time I was on prednisone and having freakishly high blood glucose levels, so I began self medicating with that just to keep things under control until I could get in touch with the doctor.

Please note that this is not an endorsement of self-medicating for any purpose.

I was unable to get my numbers under control. However, I anticipate that will be a relatively easy fix once I'm under a doctor's very watchful eye in the hospital. In fact, I think this hospital visit will be a piece of cake compared to last spring. The last time I needed a tune up I was back and forth to the hospital 2 times in a very short period of time (3 if you count outpatient surgery and a visit to the ER. ) I think I only was able to work 10 full days in a 4 month period.

This time I'm anticipating a 10-14 day tune-up with IV meds Tobramycin and Fortaz. Brad and I call Fortaz "KTP" because we think it smells like cat urine. Kitty pee--get it? Trust me, you'll laugh to yourself about that one later. With a little luck I'll be back to work within 3 weeks and I'll be rip-roaring to go for a trip to Oklahoma.

Well, for all my big talk and my seemingly positive attitude, I realize that I'm up far too late and that's probably because deep down I am experiencing some anxiety about going to the hospital. It's a routine thing for me, but that doesn't mean it's enjoyable. The fact that it's routine does not make it any less of an upset or an inconvenience to my regularly scheduled life. On the other hand, knowing what to expect of the whole deal is comforting.

Plus sides of being in the hospital:


Current mood: anxious
Current Snack: American cheese with mustard
Health-o-meter: Are you kidding me?
Emotional weather: clear skies

Friday, March 03, 2006

Under the Weather

No clever quote today and no cute photo, but I wanted to at least post something so that my praying friends can have some info.

I had a doctor appointment on Wednesday, and it didn't go well. My lung function was only 66% predicted. My doctor has put me on levaquin, but is doing so with the condition that if my PFTs don't improve within two weeks, he's going to admit me.

Admittedly, I don't want to be admitted :) I bit the bullet yesterday at work and let my supervisor and project colleagues know that I'm going to be out of the office for awhile. I'm hoping that now that I'm back on TOBI, I'll be able to get in shape soon. I left the office at noon yesterday and plan to stay put for the next several days. I'm going to do nothing but take my meds, eat, and rest.

This is hard for me. I hate slowing down this much; I hate missing work, especially when I'm working on exciting and challenging projects. However, I also know that by taking it easy now, I'll be able to have a longer run of good health later. I am so incredibly blessed to be at a job that is relatively flexible, and that I have a supervisor who understands (or at least is sympathetic to) my situation.

Please keep me in your prayers over the next several days. Pray that my body will begin to heal itself with the antibiotics and that my lung function will improve. Pray also for my husband that he won't be too stressed out--we've got a lot on our plates right now as far as stuff to deal with, and me ending up in the hospital would only make things tougher. I am glad to know that no matter what is going on in my life, God is in absolute control. He has been keeping us safely in the hollow of His hand for a long time now, and I know that won't ever change.

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