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Showing posts with label pulmonary rehab. Show all posts
Showing posts with label pulmonary rehab. Show all posts

Thursday, September 25, 2014

My Time


Will it be another weekend of catnaps?
Or, perhaps, something more exciting??
Y'all have no idea how crazy my life is right now. I mean, you have some idea if you are a reader of this blog or if we are close in real life. But even those closest to me do not get all the details of things I am exposed to every single day.

Rehab. I talk about it a lot. I complain about it a lot. I sing its praises. I dread it and I love it - we have a very complicated relationship, rehab and I. (smile) I have shared stories with some of you about people I've met there. I even wrote a post last month about about my rehab buddies.

Recently, for the purposes of my own mental health and sanity, I have tried to take a step back from some of rehab-ville so I can stay focused on myself. It has not made sad things any less sad or happy things any less happy, but it has allowed me to find a mental place where both focus and empathy can co-exist.

This was a very difficult week for me. I watched someone from rehab with whom I have a strong connection go on a very treacherous journey. But, and I feel kind of horrible saying this, it is partly because of the shock and sadness this week that I have now gotten to a place of such mental clarity. I had to see it, process it, talk about it, feel it, and then - as per my new tools for coping with life right now - set it aside in the proper mental compartment. This sadness will suck the life out of you if you let it. And as I wrote about in recalling last weekend's dry run and the subsequent follow-up post - I don't want to allow that to happen to me.

While my moods these days can change like the tides, I really hope I can hold this focus. Because for the first time in a while I am really and truly excited for the phone to ring. Despite the risks/possible complications/horrible stories I've heard, I know that I will have my own journey. We get our chance with new lungs, with new life, and this is my chance. This is my time! I feel empowered knowing that the things I bring to this are the elements for an extremely successful outcome.

"Whoo-hoo!"

Sunday, September 7, 2014

What I Believe: Buddhism with a Twist of Science


Writer Jack Kerouac once described his religion
as "Catholicism mixed with gin."
One of the most excellent things about pulmonary rehabilitation is all of the great people I've met: young, older, local, out-of-towners, and people with every imaginable kind of pulmonary disease. But there is one aspect that has at times been challenging and it's something I've been thinking about a lot lately: I have been thrust into a world of kind, well-meaning and very religious (Christian) people. In my pre-transplant world, I had become sheltered from that culture.

First of all, I do not have a problem with religious people (unless you are trying to convert me and in that case stay the fuck away! I think at most one can have things figured out for himself. Beyond that is arrogance and disrespect.)

Most of my family is Christian, I grew up going to a Presbyterian Church with a bunch of great people, and I even have a few religious friends. I know a lot of people who consider themselves spiritual in one way or another. I have a handful of temple-going Buddhist friends (I am not among them.)

And so it is that I have gotten to the point that I can be grateful for, and not cringe at, someone saying they will pray for me (mostly). And, most importantly, I have come to realize that each person has her own individual ways of caring and expressing that care for her fellow humans. In my mind, any love and care is a good thing. More care + love = world is a better place.

Buddhism with a Twist

Christianity is just one means to an end, one way of living your life. I will spare you the story of how my unhappiness with Christianity unfolded. Suffice to say that I have developed my own personal religion - I'll call it "Buddhism with a Twist of Science."

I have one "golden rule," (not all that different from the original golden rule): do the right thing because it's the right thing to do. Sounds pretty vague, right? Here is what I mean.

A mandala is a geometric figure representing
the universe in Hindu and Buddhist symbolism
This golden rule doesn't just serve as my religious/spiritual view of the world but as the way I have molded my morals and the way I try to shape my actions; it is also the basis for my strong environmental convictions. I feel obligated to do the right things, take the right actions, give back to a world that has given me so much, and be the best person I can be because it is the right thing to do, not because there are repercussions, punishments, or because I might become a factory farmed chicken in my next life.

The golden rule means that I answer to the person with the absolute most rigorous, highest possible standards that could be set for myself: me. It means that if I know I have let someone down, I have let myself down more. It means that if I do something wrong and I know it's wrong, I punish myself repeatedly in my head. To me, the struggles of woman are lost and won on the battlefield of her conscience.


In addition to this practice/philosophy of living the right way because it's the right thing to do, Buddhism - and I use the word loosely because I don't have as strong of a grasp on it as I would like - also comes into my beliefs in that I believe god is in all things. (Side note: Todd and I have been watching the Cosmos series...Wow! Highly recommend it. Highly. Actually, stop reading this and go watch it now...or soon. Seriously. It's that good. And that important. Society has so lost touch with the amazingness of our scientific discoveries! But I digress...)

To elaborate, my god is in plants and animals, sand and sky, earth worms and dirt. Yes, dirt! God is in the bursting blossoms of our rhododendron bush in spring, it is the smell of jasmine, it is in my nephew's smile over Skype when he's absentmindedly twirling his hair and being shy still sleepy from his nap, it is that impossible hockey goal scored in the last seconds of the game, it is in the big sky of Montana, the cobblestone sidewalks of small Irish towns, the cloud forests of Central America, being in the desert surrounded by nothingness, it is enjoying every bite of a really good meal, it is a ring whose ornaments make you smile, it is a song that makes you cry, it is in finally figuring out the answer to a really tough problem, it is the end of a really great workout, it is a doctor with a gift to have his patient always leave him happy, it is a job you love, it is waking up with a warm purring cat next to you, it is the first kiss you give your dog after his bath, it is a brand new car you never thought you could afford, it is a husband who will do everything to take care of you, and yes, it is the first sip of double-brewed iced coffee with cream on a warm sunny blue-skied afternoon in North Carolina. God is all the moments that make life worth living. To me.

And while humans are especially, well, special, we are also un-special in that we are made up of the very same elements as everything else in the universe: planets, comets, stars, black holes... it's really incredible and makes my mind twist to think about. We are more similar than different, all of us, everything.

What Sets Us Apart

We have evolved to such a high level of intelligence there is clearly a difference between us and most - but not all - other life on this planet. This means that we are able to appreciate Earth's beauty - through art, music, poetry - in a way in which other species who are solely concentrated on survival cannot do. It means that we have the ability to be gracious and thankful for all that we have, and that we should be generous to those who don't have as much as we do.

In Buddhism, the lotus flower is symbolic of purity
of the body, speech, and mind
And, as an environmentalist, it means that we should take care of this amazing planet. Not because we (humans) are the ones who have messed it up, not because we feel bad if we don't, not even just for future generations - although those are all great reasons! - but because it's the right thing to do. And because the world would be a better place if everyone acted this way.

The Language Barrier

My biggest complaint with my religion, and this is probably true for any religion that is more spiritual or philosophical than traditional - is that there isn't really a good vocabulary in which to talk about it. When someone says, "I'll pray for you," that's a really succinct way to express well wishes  toward a person.

To say other things such as "I'll be thinking good thoughts for you" or "I'll send good vibes/juju/love/wishes" just don't have the same ring. They sound wishy-washy, new agey, or just plain silly. We need another word that's as succinct as "pray." How about prish? (pray + wish or, alternatively, pray-ish lol)? While we're at it, I also want to update connotations of the words "fellowship" and "blessing" - I really like those words and there isn't a good, easy substitute for them. So there. I feel blessed by the stars of the galaxy, bitches!

The Milky Way Galaxy: there's no place like home
So back to pulmonary rehab. I think this immersion has been a good experience for me, as much as I have bitched and complained along the way to a select few, because it has allowed me to reexamine and fine tune my own religious/spiritual beliefs. We all need something to hold onto, maybe even more so when we're really sick and death is a lot closer than we'd like it to be.

My peace and comfort comes in knowing that I am doing the best I can while I am alive, and then when I die, the elements formerly known as Laura will return to their rightful place on Earth - and eventually the universe. One day, if I'm lucky, maybe I - maybe we all - will be part of one of nature's spectacular shows. Catboogie's comet? A Laura meteor shower? A super nova Laura?? The possibilities are, literally, endless.


Monday, August 25, 2014

Rehab Buddies


Some of my rehab buddies and I!
from left: Celeste, Richard, me, Jason, Arlene, Richard, Beau

I have met some of the neatest people during what is now becoming my tenure at Duke's Cardiopulmonary Rehab. I especially like connecting with other cystics in person - the vast majority of my contact with CF people has been over the internet - which is kind of funny because I spent the first 20 or so years of my life mostly wanting to avoid them altogether!

It's interesting to meet people with other pulmonary diseases as well. (Idiopathic Pulmonary Fibrosis, Alpha-1 Antitrypsin Deficiency, Sarcoidosis, COPD, Black Lung Disease and Bronchiolitis Obliterans Syndrome, also known as end-stage lung rejection, encompasses most of them.) Since rehab has become such a big part of my life I thought I would dedicate a blog to telling you a little more about it. I have already written (somewhat unfondly) about the mental and physical challenges of rehab, so this will more about the people.

Sandra walking the indoor track
There are unique bonds that form in rehab - as is probably the case with any difficult situation into which people are thrust for any extent of time. Our struggles differ, yet we have much in common. In a way these relationships are transient but they will always be a permanent part of my mental transplant scrap book. I know some of these people will be lifelong friends.

There is a special bond with people whom with you share the same disease. I've met quite a few people with CF at various stages of pre- and post-surgery rehabilitation. I know it is hard for outsiders to understand why we can become so attached when there is so much loss and hardship in our community. All I can say is that for myself and many of the other cystics I've come across, it's all worth it.

A couple of super cystic women - Shawna
Here's a quick run down of some of the cystics I've gotten to know the best:
  • two I have seen both before and after transplant
  • three post-transplant Duke ECMO/life flighted/lives saved at the last minute miracle women
  • two in situations similar to mine, pre-transplant (one listed, one still waiting to be listed)
  • a woman who has been waiting 6 months for both lungs and a liver
  • a guy my age who passed away before he was able to get himself in good enough shape to be listed
  • a couple of others a bit before my time who I know less about but about whom I'd like to know more.
People come to Duke from all over! New York, Mississippi, Maine, New Jersey, North Dakota, Arizona and Virginia, Colorado, South Carolina, New Hampshire and overseas from Israel and Saudi Arabia!

So that is a snapshot of my rehab social life - hope you enjoyed it!












Thursday, June 12, 2014

Pulmonary Rehabilitaton (aka Purgatory)



Purgatory: (in Roman Catholic doctrine) a place or state of suffering (pulmonary rehab) inhabited by the souls of sinners (transplant patients) who are expiating their sins (trying to build up a seemingly impossible amount of strength despite their extremely compromised state of health) before going to heaven (getting new lungs.)

Since my life has literally been dominated by pulmonary rehab lately I thought it appropriate to dedicate a blog entry to it.

To say that pulmonary rehab, which I am required to do five days per week unless I have conflicting appointments, is difficult is quite an understatement. Each day starts out hard then gets harder and harder. It challenges you to your physical limit (if you let it), and then - since you have no more to give physically - becomes some sort of tortuous mental exercise. Today, for instance, the smallest thing made me cry...  and it had nothing to do with the thing at all, it was just my body's reaction to this extreme mental and physical state I am forcing it to be in.

At least this is how it has been for me. On a good day, I feel very tired and a good kind of worn out after my three hours of working out. On a bad day, like today when I was easily getting short of breath from the time I got up, it seems like a victory just getting there. And every lap, every pedal, every weight repetition is a chore. At the end I am utterly exhausted.

And then I come back the next day and do it all over again. And the next day, and the next day, and the next day, and then hopefully I have some appointments on Friday so I can skip out (like I do tomorrow - yay!)

The whole thing is totally insane. You should see these people! There is no "can't" in this crowd. It really would be difficult even for a healthy person to endure, let alone someone running on a fraction of the energy that they used to have.

A Typical Day 

Having said all that, let me tell you about a typical day at rehab.
  • Arrive, get checked in, switch from my oxygen to their tanks that come in push carts that are easier to push around the track.
  • Walking: Tuesday and Thursday are long walks (mine today was 30 minutes, but I don't think it will go higher than that); Monday, Wednesday and Friday are 20 minute walks. We always count our laps and I'm always surprised how much my speed varies from day to day, constantly up and down. For instance, yesterday I did almost 20 laps in 20 minutes (flying!!) and today I did 21 laps in 30 minutes (turtle pace.)
  • Biking: Always 20 minutes, but resistance is increased every day.
  • Weights: Rotate days working "arms" and "legs" - although there are so many leg exercises that some spill over onto arm day. This includes things like leg curls, leg press, bicep curls, tricep press, squats, stairs and various shoulder stretching poses.
  • Floor class: Taught by a different teacher every day, the floor class uses ankle weights, hand weights and therapy bands to work the major muscle groups. There is also some stretching and breathing at the end. (And a lot of coughing by me and all of the other cystics.)
  • Education class: Classes on topics related to transplant such as occupational/physical therapy, feeding tubes, osteoporosis. These are all topics that Todd and I will learn much more about in the hospital but it is a good introduction.
That's it! Crazy, huh?

And If That Isn't Fun Enough...

I am lucky to get out by 5pm (class starts at 1:30) which puts me perfectly in time for rush hour traffic that essentially doubles my commute home. Now that is a really fun thing to do after already tiring day. Sigh.

When I do get home, it's always a toss-up for me between nap and therapy. I am exhausted but 6pm is an awkward time for a nap. So I usually end up just moping around the house being exhausted for a couple of hours until I catch my second wind just in time to ensure that I can never get to bed before midnight. Thank god I do not have to think about dinner these days. (Thank you friends and take-out!!)

There are more annoying things about pulmonary rehab...it totally messes up my eating and therapy schedules during the day (both of which are very important things right now), I get sweaty at rehab but am forced to either take a sink bath or shower head rinse off since my port is accessed, and sometimes the satellite radio spends an awful lot of time on the 50s station catering to the center's large majority of older patients.

But hey, no one likes a complainer (I'm kidding, since this whole blog post is sort of one long complaint). I do have a brand new car to enjoy my trips back and forth to Durham - and I enjoy the time alone to think. And while rehab hasn't improved my lung functions any, it does keep me coughing up stuff all day long so my lungs stay pretty clear and it has definitely made me stronger - starting to see some definition in my arms! Sometimes someone will even put on 80s or 90s music which makes me very happy.

Now. If I could just start feeling like I was mentally ready for transplant, I'm pretty sure my body is all set.

Photo Credit: Purgatory, emptykingdomcom; Group exercisers, gettyimages.com; Stretching cat, acctomarley.blogspot.com.

Saturday, April 19, 2014

Springtime in Raleigh



Although I continue to struggle with low energy, poor lung function and also had some reactions to my increased antibiotic dose this week, overall things are continuing to go pretty well.

Not to be under-stated is the importance of me continuing to have and do fun things in my life. I try to have a very deliberate balance of blue (appointments) and pink (friends/family) on my calendar. This week I Skyped with both my dad and my little nephew; I visited with my mom and her new cat! I had dinner out with friends; we had friends over for dinner and played a board game; and this weekend I have plans to make soap with my friend Elaine.

Sully the cat tired out after playing with Aunt Laura
By far the most difficult thing this week has been pulmonary rehab and - by extension - any days I was not breathing well but had to walk around and or do stuff anyway. Overall I have been better since starting this course of IVs (Tuesday will be two weeks on them - I will probably go for one more week after that), coughing less, less congested.

But as has been my pattern with IVs, my numbers are not getting better and I'm still honestly sometimes having a really difficult time just doing everyday things (showering, getting dressed, talking after walking from one side of the house to the other). My PFTs have gotten to an all-time low. I really feel like my lungs have a mind of their own and it doesn't seem to matter how much airway clearance, exercise and rest I give myself. My only reward for all this hard work is knowing that things might be worse if I weren't doing it!


My appointment for Duke has been set for Wednesday and I could not be more excited. I continue to feel like if I can just get to Duke (without a major problem beforehand) that things will be okay...  I just need to get under their wing and things will be alright. It's crazy how much I've declined just since I started this process with them a month ago.

What I mean about a major problem is that with all I know about end-stage lung disease complications - lung collapse, pleurisy, retaining carbon dioxide - part of me feels like I am waiting for the other shoe to drop.

One scary thing did happen this week, but fortunately went away as quickly as it had come. I often wake up at night coughing or from coughing, and sometimes I end up sitting up in bed to get the gunk out. Also, it's not all that unheard of for me to cough up blood from time to time - it happens about once a month or so, but I'm lucky that although the severity varies, my bleeds have always subsided fairly quickly. There is almost always a discernible trigger (having been around smoke, quick change in blood pressure from laying down or bending over, etc.)

Tuesday night I woke up coughing, sat up in bed and then realized it wasn't the usual stuff I was coughing up - it was blood. It freaked me out because it was one of my larger bleeds and because there had been absolutely no trigger. I had just been laying there asleep! The only thing I could think is that since the dose of my antibiotic had recently been adjusted, maybe a patch of infection broke free and exposed some raw, inflamed lung tissue. Who knows. But waking up to coughing up blood like that is definitely not cool. *Please other shoe, stay on foot.*


Anyway, I am trying to taper my expectations for Wednesday's appointment at Duke - after all, I'm not supposed to get any official answers about transplant eligibility or time frame then. (That won't happen until after the committee meets and discusses me the following week.) Although I am hoping that since I am meeting with the head of the program I will get more information and answers than I otherwise might. But seriously, I don't just think I'm a good candidate. I also think that I am getting close to the window of opportunity for being transplanted.

So...here's to another week of sunshine and thunderstorms, pollen, cool sunny days and humidity that's just a taste of what's to come...it's springtime in Raleigh.


Pictures: Owls in tree, clipartbest.com; Sully, me; Owl in hat, cutepics.org; Owls on branches, behance.net.

Saturday, February 1, 2014

The Art of Busy



I am making an art out of being busy - that is, I juggle a million things with ease and manage to arrange them into one beautiful design, all with the grace of a dancer. Sort of.

What I really mean is that I have been trying to get a tremendous amount done while also being mindful of my health and energy levels first throughout the day. It's quite a shift for me from go-go-go.

I have been consumed the last two weeks with both our bathroom renovation (choosing, ordering, trips to hardware stores...) and starting the process of applying for long-term disability through work (paperwork, paperwork, paperwork!) Not to mention all of my regular stuff (pulmonary rehab on Tuesday and Thursday, acupuncture on Wednesday, getting my allergy shots 40 minutes from home, arranging oxygen delivery, renewing prescriptions, other appointments, a hockey game and time with friends here and there...) 

Oh, and I am also starting to plan a bachelorette party (I am the maid of honor after all!), trying to get my handicap tag from the DMV (urgh!), revisiting my physical therapist from pre-surgery to get my back pain under control (it's getting better) and making preparations to meet with a lawyer who is going to do our wills. WHEW!


And I am doing all of this while contemplating two of the biggest questions I will ever have to answer in my life: Is it time to stop working? and, do I want to pursue transplant? And the hundreds of sub-questions that go along with both of those.

But, I am pacing myself. Thanks to not drinking, my head is in the best possible place to make these hard decisions and tackle all of this stuff. And since I started ginseng/acupuncture I have had more energy which is awesome.


All and all things are going pretty well. My back pain is getting better thanks to PT, restarting my stretching and acupuncture. Pulmonary rehab is going awesome - I absolutely rock the place every time I go. I am needing a little less oxygen to get around - more for exercise than simple exertion. My PFTs...still bouncing up and down and pretty much the same as they have been.

But I would be lying if I said I thought it was possible for me to recover in a way that I have recovered from infection/exacerbation before. I am clearly in a new stage of my disease - I feel it, my numbers show it, people who know the most about me can see it. I might even call it "the coughing fit stage" because I have never had as violent of coughing attacks as I have in the past weeks. (By the way, for those who think I "look great!" Thanks for the compliment, but please remember that CF is an invisible disease.)


My lungs are decaying and there is no question: we are on the road to transplant. If I have my way, the road will be long and windy. I would love to go on disability and live for 10 more years before needing a transplant! If anyone can do that, I can.

So anyway, please wish me luck in this process of applying for long-term disability. From what I have read, I need to suit up in a coat of arms. I am NOT looking forward to defending myself for deserving this. That is incredibly hard when I have already needed so much external help to realize this is what I probably need to do, what is best for my health.

When it's all over, a huge celebration will be in order - maybe even including a Blue Moon or two. :)


p.s. I should say that I have not 100% decided about going on long-term disability right now. But my HR person has advised me to start the process to find out if I qualify. It will be good to know even if I don't end up needing it now. But lord the paperwork!

Friday, January 3, 2014

Surviving the Holidays on IVs



My oldest friend Erica and I at my Birthday Bowling party
Well, I survived the holidays on IVs - and oxygen, I should add, since that was a big new adjustment for me.

My birthday bowling party was a ton of fun! Had a great time with friends. It was also kind of like a "coming out" party for me with the oxygen. And it went rather well I think. Obviously my friends are pretty awesome so that helped. :)

We really wanted to make it up to the mountains but that didn't end up happening. Between my bi-weekly labs and medicine delivery schedule it just wasn't possible. Plus, it was probably best for me to hang around here anyway and to enjoy mountain time when I'm feeling a bit better (in other words, when I'm needing less oxygen.)

Christmas Time is Here 


As anyone knows who has ever heard the song "Christmas Time is Here" from A Charlie Brown Christmas, there is both a sweetness and a sadness about the holidays. When we're young, Christmas is pure joy. But as we get older and start to value family time over presents, we can't help but be reminded of people we've lost, those who are no longer here to celebrate with us.

And there was plenty to be sad about this holiday...  It was our second Christmas without Todd's dad, who always made a huge deal about getting presents for all of the grand-dogs and having a big Christmas morning with them. Todd's cousin who has been battling (I hate using that word) stage 4 cancer for several years almost died a few days before Christmas. My health is clearly not doing well. One of our good friends is moving out of the country.

BUT, lucky for us we have all of that to balance with having an amazing group of friends, a supportive family, nieces and nephews to spoil and whose holiday excitement can't help but be contagious, our furry children who provide endless entertainment and (cheesy alert) each other.

Sam, taking a breather after opening Christmas gifts

Speaking of amazing things, some news about my job

I told you about how I unapologetically (for the first time ever?) took these three weeks on IVs completely off of work - three weeks which, incidentally, ends today! (More on that in a sec.) And the crazy thing is, I actually stuck to it. I haven't worked, and I haven't felt guilty about not working.

But, at the encouragement of my boss, Todd and pretty much everyone around me, I have decided to go on short-term disability for a while longer to extend the time that I have to recuperate and hopefully get my lungs in better shape with pulmonary rehab, etc. I am not quite sure what this "focusing on my health" time will look like, but I will definitely keep you all posted.

Lastly, an update on my health

Last, but never least, here is an update after 3 weeks on IV antibiotics:

  • I am feeling pretty good, but I caught a cold on Christmas Eve that has hampered my improvement and has made the IVs less successful overall than I hoped.
  • My lung functions have come up a tiny bit though! I am at least consistently over the 1 liter mark.
  • My kidneys did great with the Tobra, my port is working fine after a period of suspecting a partial clot, and all of my blood draws went very well thanks to my amazing nurse who can do some serious acrobatics with a butterfly needle.
  • I had my first 2-hour session of pulmonary rehab yesterday. It went really well! I think it's a good sign when they have to tell you to slow down. :) It's going to be really hard, but I am up for the challenge.
  • One question mark hanging out there is how my back is going to deal with this increased activity from pulmonary rehab. It has been bothering me a little - some of that is good because I know I need strengthening - but I hope it doesn't become a problem. I have had to take Tramadol for the first time in a few weeks.

Thursday, December 19, 2013

The "D" Word




I went in to see Dr Coakley on Dec 13 after two weeks of progressively worse coughing, congestion and shortness of breath. My PFTs were the lowest they've ever been, even with my increased Prednisone. Can't say I was surprised. BUT, somehow I think the sadness/grieving/anger I'd been going through in the weeks previous helped prepare me for that appointment. Instead of being a wreck afterward, I was matter-of-fact, pensive and a little melancholy.

I am back on oxygen for anything more than just piddling around the house, and also at night. I am starting pulmonary rehab two days a week to strengthen and improve my breathing. I am taking an unofficial leave from work to get my health back under control. My port is acting up - ugh, one more thing.


Which brings me to the dreaded "D" word. During my pulmonary appt last week, my doctor mentioned contacting Duke for some preliminary questions about my case as a potential transplant patient. So - if I had never brought up transplant with my doctor, this may have been when he would have first  brought it up with me. He doesn't think I am ready for a work-up yet, but he wants to make sure all of our ducks are in a row with getting me over to Duke if/when needed. And we need to be ready because my numbers keep falling with no explanation other than disease progression.

In happy news, things seem to be going well so far on the IVs, which I am incredibly thankful for. And I have to say that for all the bumps in the road of late, I am not letting it ruin what is always a very special time of year for me with my birthday (20th) and then Christmas. We have our tree up and decorated. I am having a birthday bowling party tomorrow with 20 of my closest friends. And I still hope we can make it to the mountains at least for a few days next week - that is if my port, blood draws and IV delivery schedules will cooperate.

Happy Holidays Everyone!!



p.s. If you would like to make a difference in the life of someone with CF this holiday season, please consider donating to the Cystic Dreams Fund, which was founded in memory of my good friend Paul Mooney. CDF gives grants to people with CF dealing with financial hardship, which can be anything from medications, respiratory equipment, nutritional supplements, hospital bills and more. Thank you for considering!