My Two Favorite Dorks

My Two Favorite Dorks

Saturday, August 30, 2014

Live Your Life...Then, Allow Someone Else to Live Theirs a Little More

It's easy to feel selfish when you decide to get a lung transplant - at least that's how I've sometimes felt. I realize that selfish isn't always a bad thing. But who can argue that the world wouldn't be better if everyone acted a little less selfishly? 

Here on transplant row, I have a lot of time to think. And one of the many things I think about is how awesome it is that people or families of people decide to become organ donors. Literally to give someone else life. I also wonder how many non-donors out there have deliberately made that decision versus haven't been educated about the importance of registering and letting loved ones know your wishes.

I have seen many friends both go through transplant into new lives and die as a result of waiting for the opportunity. I know that having more organs available would make for more people in the first category and fewer in the second. Yet for whatever reason I haven't been very vocal about it.

Today I want to change that.

So let's make this personal. Here is how organ donation has affected people I know and care about:

  • It has allowed Christy to see her daughter grow up and, now, go off to college; 
  • Two donors (two double lung transplants) have allowed Tiffany to work her way through the maze of finding a meaningful career and to fly all around the country giving patient advocacy talks;
  • Two donors (another double lung transplant) have allowed Piper to go back to school for a Master's Degree and, now, to get married;
  • It has allowed several men and women I know to have time to pursue things that interest them, hobbies, volunteering, raising organ donor awareness - to live their lives;
  • And, it will allow me to see my nephews and nieces grow older, to be able to help take care of my aging parents, to travel with my amazing husband, to spend more time with my fur babies, to continue this blog and possibly return to a writing career - or even explore something different, to get back to my yoga and exercising, in short, to live my life a while longer.

Maybe becoming an organ donor is something that's been in the back of your mind for a while. Or maybe you're not sure if it's right for you (that's no excuse, learn the facts!)

If you are so inclined, you can register right now. (Existing donors can also check that they have taken the proper steps.)

Bottom line: give something back; register to be an organ donor. It's the right thing to do - DO IT.

For more facts, statistics and frequently asked questions, visit the Donate Life website

Thursday, August 28, 2014

The "Do Something New" Challenge Changes

Me with my two favorite physical therapists at rehab, Karlyn and Courtney, today; other than rehab I'm finding other interesting things to do with my days
I have decided to change the rules of the "do something I wouldn't normally do each day" challenge. (And none too soon as Todd's fantasy football draft is tonight - dodged that bullet!)

If there is one thing I've learned while trying to think up things to do for the past nine days it's that there are a lot more things that I really do want to do, but just haven't gotten around to, than things I would never do. In any case I have decided now to do something each day that I have been wanting to do but have been putting off or haven't had time to do.

I have, incidentally, decided to carry the spirit of the "do something I wouldn't normally do" challenge going forward. I've realized that adding things you wouldn't normally do into your life once in a while is a very valuable thing. So I may yet go out to see a jazz band, or try to get Todd to ride the train with me at Pullen Park, but it probably won't be before transplant.

Day 9

I love it when everything is in its proper place!
Preparing for transplant has required an enormous amount of preparation - everything from getting our wills done, paying as many bills in advance as possible, writing instructions for everything that needs to happen during my surgery and recovery to making sure my car has plenty of gas and that our pet food/treats/medicines are always stocked.

Today, I decided to tackle the stack of papers to file on my desk. This was pretty much the very last of the 'things I'd like to do to prepare for transplant if I have time' list - but I hate doing it so much that I had put it off until now.

Task: File/discard/deal with the papers on my desk.

Verdict: You will find no one who agrees more than me with the sentiment that getting things organized/put away frees up a tremendous amount of mental energy as well as physical space. It feels great to have my desk cleaned off. And I finally got around to looking at some old genealogy papers my aunt sent me a long time ago. Success!

Day 10

I don't know anyone who likes asking for money. At my old job I wrote tons of letters asking people for money (also thanking them for giving money.) It's a delicate subject that needs to be approached just the right way to be effective.

And so it was that I decided (somewhat reluctantly) to set up a fundraising page for myself. Todd and I have been incredibly fortunate thus far in that my insurance pays wonderfully for my healthcare and medications, and we have not incurred an extraordinary amount of extra costs yet.

But I know that things will start adding up...and there are liable to be unexpected things that pop-up as well. It's also going to be expensive for people to travel here to help out after surgery, and I would like to help them with that. Add to this the fact that friends and family have been asking what they can do to help both here and from afar and, well, here it is:

Task: Set up a fundraising website for myself.

Verdict: We'll see how it goes! I think it will be a success. The amount I chose to fundraise, $2,000, was kind of a guess. Best case scenario we don't need all of that money and I will donate it to The Cystic Dreams Fund. Worst case we may need to raise the bar. Bonus: who doesn't love a Snoopy-themed fundraising site??

Day 11

These two CF warrior women, Aimee and Shawna, from my rehab would not be here today without the kindness and generosity of an organ donor
Wow, things are really cooking this week here on the L Word. I have been writing a ton, which I love, but I might need to slow down a little bit.

Back to today. CF, to put it bluntly, either ends up with death or transplant. Sometimes the transplant doesn't go so well, sometimes it goes alright, and sometimes there are the stories we pre-transplant cystics dream of: effortless breathing, being able to exert ourselves without huge effort, a return to jobs or hobbies or finding new things about life to enjoy doing. But without an increase in organ donors in this country, not all of us will have the option of returning to a normal life. And so, today, I turn a new leaf:

Task: Be more of an advocate for organ donation within my communities.

Verdict: Here is the result. The truth is that I may have never taken this on had I not been in need of an organ transplant myself. But I'm going to surmise that most people will either know someone who needs a transplant or need one themselves in their lifetime. People should not go around thinking that this problem does not affect them. Maybe it will be you? It's scary to think about a shortage of organs when your own life is on the line. Check out my full post from today.

My Donate Life license plate
Go here to register to be an organ donor!

Day 12

Today was not the greatest day for me, mentally. I've been a bit down the last few days, experiencing waiting fatigue. Once one domino goes down, it's hard to stop the others. Doubt creeps in, uncertainty too. It's an intense life right now.

One of my rehab buddies who was transplanted about a month ago is not doing well - he's been in and out of ICU having complications the doctors can't figure out. I hate it for him. It makes me sad.

I also had more sad news: I texted the woman to whom I gave Oliver to see how she's been feeling - last I heard her cancer was back and the chemo was not going well. A couple of hours later, her husband called to tell me that she passed away yesterday. I had no idea things had become so serious so fast.

But despite all that, or maybe because of it, I really wanted to get out and do something today - even in the heat. We decided to go to the Museum of History to see a bluegrass exhibit and an exhibit of photographs from Historic Stagville Plantation.

Task: Visit one of Raleigh's fine museums.

Verdict: We didn't make it to the photographs (3rd floor) - we'll have to save that for another time. But it was a really nice, simple fun outing for the two of us. It was also nice that it was fairly handicapped accessible. I don't mind walking, but it's tough on a really hot day. Shocker: I went into a museum gift shop and did not buy anything!

Day 13

In the midst of my world of health things these days, some things have gotten swept to the side. One of those things is any non-urgent things having to do with the pets. This past week, we finally took Diosa to the vet - she was WAY overdue for shots and had an ear infection. I also wanted to get some baseline blood work done and make sure her kidneys were holding up alright with her current arthritis medicine (Metacam).

The vet thought that Diosa was probably having a good amount of pain from her arthritis. Cats are good at hiding it, and she herself is probably used to it to an extent. But hearing that motivated me to get on the ball to make sure she is on the proper medication. Yes, Diosa is good at looking pathetic when she wants, but she has been looking at us sadly and meowing to lift her up onto the kitchen table so she can get to her food and water

I also wanted to do one other thing to make her life a little easier.

Task: Find kitty steps for Diosa to get up onto the kitchen table.

Verdict: Success! She took to them right away. (She already has one set of kitty steps to get up onto our bed.) I don't want you to think that Diosa is a total old lady - she still does alright, she just moves a little slower than she used to. And we are more than happy to accommodate her aging kitty bones.

Day 14, 15, 16, 17...

I am unofficially putting this experiment on hiatus. I didn't think it would go on this long!! I am getting so fed up with waiting. It's not only gotten to me but the steadfast Todd as well. Still trying to do new and fun things on days we have time, so the spirit of this has been a success.

Tuesday, August 26, 2014

Doing Unusual Things

Lounging with my snuggliest cat and watching a Bogart movie? That IS something I would do every day.
In the spirit of making my wait for transplant more interesting I have decided to try to do something each day that I wouldn't normally do.

Day 1

The idea for all of this came about very organically. Todd and I were on our way home from Durham and were going to stop to pick up my IV antibiotics. I casually suggested we go to the nearby Hooters. I thought it might be entertaining to go and wanted to see for myself if it was as degrading to women as I'd always imagined. As I thought, Todd did not believe I was serious.

Task: Go to a restaurant I would never go to.

Verdict: Yes, it was as degrading to women as I imagined, but the women didn't seem to mind. The surprise? Hooters is just as much about ass as tits. And they have hoola hoops! Did I mention that our waitress was named Princess?

Day 2

I convinced a reluctant Todd to watch the movie Forest Gump. I had gone my whole life avoiding it, but a little part of me wondered if there was something I was missing. We got our fill of the movie's "dime store philosophy" as Todd called it.

Task: Watch a movie I would never watch.

Verdict: Yes, Forest Gump was a horrible movie. The one interesting thing was seeing a young Robin Wright after recently having watched two seasons of House of Cards. Probably a waste of time but at least now I know the context of the damn 'box of chocolates' line.

Day 3 

Today is my nephew Simon's third birthday. Although I already sent him an assortment of garbage truck-themed presents (he stands by the window fascinated by the garbage truck on trash day). I had the idea, in the spirit of doing something unusual, to compose a song for him, sort of a life before and after he was born. I am super scared to sing in front of people so this is a big deal for me.

Task: Face my fear of singing in public (sort of).

Verdict: It's much easier to do this when it's just you and the computer when you are recording it...but I do know that an awful lot of people watched it that I otherwise would never have sung in front of. Bonus: how many kids can say they have a song written just for them??

Day 4

I really like sushi. But I have always been totally grossed out by raw sushi. I had the idea for this day to expose myself to the more authentic side of sushi-eating. So out we went for a sampling of raw salmon, mahi, tuna, yellowfin, tilapia and we also threw in some roe for kicks.

Task: Eat a food I would never eat.

Verdict: Well, it wasn't as gross as I thought it would be - although I didn't care for the roe much at all. I also didn't see how it was so much better than the type of sushi I'd been eating all along. Good to know I haven't been missing much. Also, good to get this experiment out of the way pre-transplant since raw sushi is a no-no after transplant.

Day 5

It was Saturday night and the idea popped into my head of what my Sunday thing to do would be. My idea had the added bonus of making my mother happy: I went with her to the church she's been going to for several years and has tried several times to get me to go. It turned out to be youth Sunday, which meant there wasn't an awful sermon to sit through. Enough said.

Task: Going to church.

Verdict: The kids leading the service made it a lot better than it otherwise would have been. Note: coughing in church never gets less awkward although at least when you're on oxygen no one offers you cough drops.

Day 6

I'm not gonna lie. After deciding that I haven't been pushing myself hard enough in rehab lately, I went full throttle into Monday's workout, doing the floor class for the first time in a week or so, walking 30 minutes, doing weights and riding the bike. I was completely exhausted when I got hone and totally forgot about doing something I wouldn't normally do. I could probably make something up that I did unintentionally, but that's not really the spirit of all this.

Day 7

Interesting fact: Sugar gliders and other types of marsupials have handedness determined by gender: males are right-handed and females are left-handed
Not the most successful day, either. I realized after another strenuous and tiring day at rehab that I was due not one but possibly two things to find to do! Faced with the task of making dinner plans for Todd, my friend and myself, I tried desperately to find a type of food that I hadn't had before. (I differentiate this from Hooters in that this would be a cuisine I'd never had before, not just a restaurant I wouldn't go to.)

But I could not find anything! I had a moment of hope when I saw a Venezuelan restaurant but then remembered going to this little place in Queens with my brother years ago that had arepas...sure enough, it was Venezuelan. There's also a Moroccan restaurant that I've actually been to but hadn't been very brave with my ordering - there was potential there but the place is super expensive.

My fall back was to eat dinner with my left hand instead of my right. Yes, this is kind of lame, but hey, I guess I wasn't feeling too creative. But I kept forgetting and ended up eating only about half of the meal with my left hand...and it wasn't as strange as I thought it would be.

Failed Task #1: Find a new type of cuisine
Failed Task #2: Eat entire meal with non-dominant hand

Verdict: I need to get away from food things and expand my horizons a little here! Tomorrow I actually have a something I would never do built in to the day. Can't wait to tell you about it!

Day 8

Doing pulmonary function testing in the lab at Duke - it really takes it out of me these days!

The last couple of times I've done PFTs, it has been on days after rehab and all my regular pills and therapies, both of which make my numbers more favorable than they otherwise would be. So, at my last appointment, my pulmonary doctor and I agreed that I should come in one day before doing my vest, hypertonic saline, Pulmozyme, inhaled antibiotic, Prednisone, Singular, Zithromax and Zyrtec - all the things that prop me up. 

Today was the day! I cannot tell you the last time I have not done my vest (or at least some kind of airway clearance) before leaving the house in the morning. It makes getting ready take so much less time!

Task: Leave the house without therapy and drugs that "prop me up" and artificially inflate my lung functions for the day in an attempt for my LAS score to more accurately reflect the condition of my lungs.

Verdict: In addition to the airway clearance, the thing I missed the most was the body started feeling the absolutely crappy Prednisone withdraw. But, success! My numbers were terrible! I can't wait to see how this affects my score - the holiday weekend coming up is bound to bring a surge of organ donors.

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!

Sunday, August 17, 2014

Disease Change

Disease changes you. But how?

I think sometimes from the perspective of this limbo I'm in - between my former "well" self and my future new and improved self - about how life has changed. It really is a lot for my brain to grasp sometimes. My "well" self, even my fairly sick "well" self, seems far, far away.

At the same time, as much as I tend to be a person with a lot of forward momentum (I prefer that term right now to calling myself a "positive person"), it's hard to let myself spend too much time fantasizing about the things my new life may bring. I am too much of a pragmatist to not know that my life with new lungs may also be filled with challenges, and at the very least I will have to go through some difficult things on the road getting there.

The Comforts of Disease

I wrote a couple of months back about some of the comforts of having lived an entire life with this disease - a life that you get so used to that the routines become comforting in a way. But that has changed: the sicker I've become, the less and less comforting and more and more arduous these routines have become. I've never had a harder time with vesting, boiling my nebs, wanting to skip things I shouldn't. I have not been as diligent as I might have been. (Side note, if my port does turn out to be infected, I will partly blame myself for feeling like I could have taken better care of it these last few weeks.)

As compliant and diligent and zen of a person with CF that I have been until now, I'm fucking sick of it.

The Ways I've Changed

Without further ado, I present my mental list in writing now for your reading enjoyment of all the ways that CF has changed me.
  1. The biggest thing has to be the physical limitations that come with any end-stage lung disease - I don't want to spend a lot of time on this because you all probably already have a good idea of the ways it has affected me. The things I love the most that have been taken from me are yoga, bike riding, hiking, and other exercise.

    Sub out the Bud Light for an NA beer and the TV remote for the Roku controller and this is just about right.
  2. I've become a TV-addicted, junk-food-loving home body. Partly because of the trouble of going out - hauling around oxygen, being started at in public, coughing in public, trying to avoid coughing so much/seeming sick/out of breath in public. And partly because my energy is limited. But since I've been listed it's gotten really bad. I don't want to be far from home when the call comes - I want to have the maximum amount of time to get things together for the hospital. And so, on to the next episode of Pretty Little Liars on Netflix.
  3. The hardest thing for my conscience to come to terms with has been the almost total surrender of my commitment to living a "green" life. When I think of all the trash from my medication shipments, port needle changes and medical procedures among other things, it makes me sick. I just hate it.

    But there's more than that. I stopped composting because it's too much work to keep up with. I buy things at the store in small, disposable containers because they are easier to grab for a snack and to take on my daily trips to Durham. I get things - a lot of things - shipped to my house instead of going out to stores. I idle through every possible drive through instead of going in places. Convenience by necessity. I try not to be too hard on myself, and I'd like to think that there will be a day when things will change back to how they were, but part of me really hates myself for becoming one of the people I used to deride.
  4. CF has made me more selfish than I've ever been. I have to do what's best for me, take time for me, don't push myself too much. In ways this is nice because I have been able to focus on keeping myself as healthy as possible for transplant. Also, it makes the things I do make time for outside of my disease all the more special. But come on, it's totally against my nature to be self-absorbed. I make a good effort to keep up with those I'm closest to, but there is so much I'm missing out on, and people/things I'm no longer able to keep up with.

  5. I have become a far less interesting person to be around, to socialize with. It sounds cruel, but #1 (having a lot of health issues) + #2 (not doing many interesting things) + #3 (wrestling with the person CF has made me become) + #4 (self-absorbed, even though it's by necessity) does not a good casual conversationalist make. My "news" usually consists of my latest medical adventure. (P.S. Thank you to all of my friends who continue to invite me out and want to see me regardless of this! It is a true test of friendship in my mind.) Also, some people don't want to really tell you what's going on in their lives because they don't want to "burden" you. Well, I think that's a load of crap. Bring it in, it's about all I've got to distract myself these days!
  6. I have gone from "backseat driver" to mere "helpful navigating passenger" with my health management. Since switching to Duke, I have had to get to know a whole new group of people. I was accustomed to how everything was at UNC, and used to running the show a lot of the time. But from day one, I knew that to be successful at Duke I would have to play by their rules. This, to say the least, has been a struggle at times. But I think that my proactive patient self is getting pretty good at knowing when there is flexibility and when I just have to deal with it. It's a work in progress.
  7. I just read over what I've written here thinking I was finished when I realized that this list of change would not be complete without me mentioning the physical changes of end-stage lung disease. I am as close as I've ever been to the skinny, barrel-chested, rounded-shoulder, little pot bellied "typical cystic" image that I have managed to avoid for most of my life. My skin is pale, my lips are constantly chapped, I pee when I cough, my menstrual periods are barely there, the grossest-looking shit comes out of my nose and the stuff from my lungs isn't any better.
So there you have it, a selection of things that have been keeping my brain company while we (brain and I) continue to deal with a life that could drastically change with the ringing of a phone. And by the way, remember when I said that when I got listed, my brain was sort of prepared to wait for either a day (short wait) or a month (long wait)? Well now that it has been longer than a month, it is starting to feel like it will never come. Instead of an increasing chance, it seems less and less.

I suspect I may not get another call until I'm able to improve my LAS score - which basically means that I have to get sicker/worse. I want my time to come. But at the same time I continue to be relatively patient and to have faith in the system: while I wait with a low LAS score, those much sicker than I am are receiving organs when their health situation is more critical, as it should be. If that ever becomes my situation, I will rely on that same patience, understanding, honesty and integrity from others. That makes it a lot easier.

Friday, August 15, 2014

What's the Latest? (Part Two)

Waiting for transplant means being as strong as a lion and as nimble as a little kitty cat
To my friends, family, acquaintances and other people following my journey: I am going to try to keep this page updated with news about what's going on with me now that I'm listed for transplant. Thank you so much to everyone who has opened her heart to my adventure.

Thursday, Sept 11 - 8 weeks listed
Today marks two months of me being listed for transplant. This is roughly double what we thought the highest estimate would be. It feels like we are starting to settle in for the long haul. Unlike last week where the wait had really started grating on us, we've resumed more of our normal lives (doing things with friends, making future plans, etc.) and that has done wonders for our mental health.

Not a lot of news to report from the last week. I have heard of only one transplant that happened, and it was a single lung.

Health wise I'm remaining white count is creeping up again, same old story there. My energy is pretty good, rehab is awesome (walked 2 miles today in 40 minutes!) although getting really old...five days a week just feels like too much right now. I am giving myself tomorrow off. My rib is doing better. I have also managed to put on a couple of pounds.

On the not so positive side, I am completely sick and tired of doing IVs every 8 hours!! It has been 10 weeks with no break. I'm. So. Over. It.

I am still coughing a lot, coughing up choice goodies (no blood though!), coughing a lot at night, sometimes I feel like I'm going to pass out when I cough...that is something new. Often things just feel stuck in my lungs. I've been having some back pain and hip tightness. I forget stuff constantly. Every day on my way to rehab I decide if it's a two-Advil day or a four-Advil kind of day - Advil takes the edge off my general "yuck" tired, worn out body feeling.

Basically, my life right now = one big party!

Next week I will go back to clinic for my monthly "check in," testing, meeting with doc, etc. I'll let you know how it goes unless there is something to report sooner!

Thursday, Sept 4 - 7 weeks listed
**giant sigh**

Waiting is getting old. Really fucking old. It's old for me, it's old for Todd, and I know it's old for all of you, too.

There has been a "lull" in organ donation recently - no shit!! According to my coordinator, Duke has gotten offers but none of the organs have been up to their standards. I feel a little better knowing they are at least getting offers. And it does not appear that my antibodies are playing a larger role in my wait as I previously suspected. 

Duke has 16 people on their list right now! That is huge for them - the highest I've ever heard it be is 12. Usually 10 or fewer. And it's not just my blood type that there has been a lull for, although there are a lot of O's on the list right now. Also, the donor surge over the Labor Day holiday didn't amount to much. Although there have been a few calls this week, perhaps a trickle out from that.

So that's pretty much it: No one's getting transplanted and Todd and I are getting cranky.

Wednesday, Aug 28 - almost 6 weeks listed
Awesome news - my LAS score has gone up to 40.94!

How did this happen so quickly without a big drop in my health? At my last pulmonary appointment, the pulmonologist and I agreed that I should come in one day before exercising, before doing my vest, before hypertonic saline, Pulmozyme, inhaled antibiotic, Prednisone, Singular, Zithromax and Zyrtec (all the things that prop me up and keep me as healthy as possible) and do pulmonary function tests. My last couple of PFTs, we think, make me look healthier than I actually am.

So I went in today without doing any of that stuff to get a truer reflection of where my lungs are actually at. (Man it was strange leaving the house without doing therapy. I can't tell you the last time I did that.)

The experiment was a success! My score went up about a point, which doesn't seem like much but puts me further ahead in the pack. Higher score + holiday weekend = very good chances of me getting a call this weekend!

Thursday, August 21 - 5 weeks listed
Lots of good news today!

  • We retested my white blood cell count yesterday after concluding that the spike must be "just" from lung infection and my number has gone from 30 to 13! This is awesome and means we must be doing something right. So no antibiotic changes for now.
  • I told you we were tinkering and my LAS score has been adjusted from 38 to 39. While that doesn't seem like much, I have moved up two places on the list which is awesome.
  • We retested my A1C (diabetes control) and my number was down to 6.8! That is awesome - my blood sugars have been really good so I was the one who requested a retest. I feel happy for all of my hard work. In the end, I don't think it's so much any major changes I made did but rather more natural fluctuation in control...because seriously, if you saw all the sugar I've been eating lately you would be amazed!
The weekend is coming! So hopefully a call will come. I am ready! Three people from rehab had dry runs last weekend and I haven't heard about anyone being called this week. Time for some lungs to start rolling in!

If no calls come this weekend, I have a doctor visit on Tuesday which will give me another chance to possibly adjust my score a little higher. We'll get there!

Thursday, August  14 - 4 weeks listed
Today was supposed to be a quick trip to clinic for drug levels before rehab, with an add on of PFTs (pulmonary function tests) and ABG (arterial blood gas) to see if my condition has worsened any to make my LAS (lung allocation score) better, speeding up the likelihood of transplant.

Labs went as planned. The PFT lab was running behind so I decided to go to rehab and come back later. I had my heart set on trying to floor class today which I've been avoiding with the excuse of my rib hurting. Floor class was alright, I got my weights and also my walk in and headed back to clinic.

In order to have a change to my LAS for even a point or two, my PFT/ABG numbers were going to have to be significantly worse than they were two weeks ago. I wasn't convinced that would be the case. BUT, I appreciated what my coordinator was trying to do - use what's in her power to move me up on the list - so I went along with it. She knows I have been struggling, and my white blood cell count has been creeping up, I'm now needing the pain meds to rehab, and I'm on three antibiotics to curtail infection with not a lot of other good options pre-transplant. Basically, there is a lot that is "propping me up" right now, and if these things start to fail, we may get into serious trouble very fast.

The result? My numbers - every single one of them - were higher than last time. Maybe it's because of all the exercise I'd had today, but I think it was basically as I suspected, that my infection is sort of under control right now and my broken rib isn't affecting my PFTs.

So that was a waste of time! I was on my way home for the day (ok, you caught me, I was in the Starbuck's drive thru!) when my coordinator called me to say that my white count from this morning was really high. It's not uncommon for me to run high, up into the low or even mid-20s, which is pretty damn high ("normal" is under 10) - today I was up to 30! They wanted me to come in for blood cultures asap to make sure I don't have a blood infection going on or that my port itself is not infected.

So back to clinic I went for the third time today! (Did I mention that each trip to clinic is a 10 minute walk to and from the parking garage? Yea, got a lot of walking in today.) They took three giant bottles of blood from my port, and three identical bottles of blood from my vein (think slightly larger than airplane bottle size.) I will find out results tomorrow.

My speculation as a lifelong patient, etc. is that my port will end up coming out and will be replaced by a PICC line if there's any chance at all that it could be the culprit. It's coming out during transplant anyway, so there's a low threshold for removal, and there's no sense in putting me on even more antibiotics/anti-fungals to try to treat it right now.

To me, a port infection makes the most sense. I've never had a white count this high to my recollection, and I would not have been able to make three trips to clinic and go to rehab today if this was from infection. Or so my thinking goes. But enough speculation - I will update when I know results in a few days.

Friday, August 8 - Broken Rib = Ouch
Today I felt vindicated - proven right, reasonable and justified - in my search for pain control over the last week. 

I met with an Infectious Disease doctor today who I really like to discuss whether or not we were on the right track with my antibiotics and to address the pain I've been having. It didn't take long for him to discover examining me that, as I suspected all week, my rib was fractured.

After that, it was like music coming out of his mouth as he explained that while Duke has a strict no narcotic policy, this was most certainly a case that should be an exception - especially as the pain is hampering my airway clearance and pulmonary rehab. He was going to have a chat with my pulmonary doctor but as soon as he said that I knew they would allow me to take some of my Vicodin for pain. Yes!!!

I felt so happy after that appointment! We finally know what's going on (although I do think I am also having some pain from infection in that lower lobe, but hopefully that will go away with some of the meds I've started recently). And not that they didn't all believe me before, but now I have something concrete to show them: coughing with a broken rib from coughing is painful people!!

So yes, that "clicking/popping" noise I've been having when I move or breath sometimes - that's right where it's cracked. Unfortunately there's nothing to do for a cracked rib except give it time to heal. The doctor didn't think it would impact my transplant surgery, which is great. And pain management is critical as I need more than ever to be able to exercise as much as possible and clear secretions.

In other's the weekend again!!! Waiting for that phone to ring any day now.

Wednesday, August 6
No calls over the weekend like we hoped. I did hear that one person was transplanted and then two people had a dry run yesterday. According to my coordinator, my score puts me in the middle of the pack (9 people currently). This doesn't necessarily mean I have to wait for half of these people to be transplanted, I just need the right set of lungs to come along at the right time!

Unfortunately I did not end up having a good weekend otherwise, either. My lung pain that started on Thursday got much worse on Saturday. I was almost to the point of needing to go to the ER just to get something to take the edge off. Fortunately, I found some cream that seemed to settle things down (Capzasin). But with my constant coughing dealing with pain has once again been a struggle at times. I was also clicking in the spot with pain!! I was making everyone feel it and freaking them out. The folks at rehab had no idea what it was but were kind of fascinated by it.

I had a CT scan yesterday to again attempt to find out the exact cause of my lung pain (although at this point, "exact cause of lung pain" seems like an oxymoron to me.) It showed no problems with my ribs or cartilage, but it did show an increase of infection in my lower left lobe where the pain is. 

SO, we are now thinking that the infection could be making me cough more/heavier which led to some kind of cartilage/muscle/tendon displacement which is causing my pain. To address this, they are putting me on an additional oral antibiotic, changing the anti-fungal medicine I've been on and, if I'm not better by Friday, I'm going to see the Infectious Disease doctor (who is awesome) to decide what other IVs/things to do. They also prescribed Lidoderm patches for pain - I'm happy to try them, but I'm not optimistic they will be effective in treating the kind of pain I'm having.

As for the pain, I don't know what to tell you people - buy stock in Advil! Because I've been using a lot of it. Also my non-benzo muscle relaxers, Tramadol and Capzasin cream. But none of that helps very much, if at all. Rehab has been increasingly difficult this week - it hurts when I take in deep breaths during exercise. Today it kicked my ass. I was so tired afterward I was almost to the point of falling asleep on the drive home.

Friday, August 1
Can you freaking believe it's August? Can you believe it's August and I haven't been transplanted? I am surprised...the doctor yesterday said if I had no antibodies (I have 25%) I surely would have been transplanted by now. I just wanted to complain for a minute about how inane Duke's anti-narcotic policy is. 

My side/lung pain escalated today after a distinct "popping" when I coughed while driving after rehab. I emailed my coordinator sure that I could get her to go along with my reasoning: it's Friday afternoon, I'm not sick or in pain enough to go to the ER, but if I continue my Advil/Tramadol/heating pad and continue to be in pain could I take some Vicodin?

Well, no. If I get called for transplant, they will screen me for narcotics. If they are present, they will not transplant me. This is crazy! I know the type of people for whom Duke's policy is a good thing to have in place. I am not one of them. And I feel like my coordinator should know me well enough by now to know that. They refuse to treat me for infection, so I am stuck with treating pain...kinda bad pain...with freakin' Advil! I am so disgusted by all this. 

My one avenue to narcotics, potentially, would be to get an appointment at the pain clinic. There they do a thorough assessment, suggest as many alternative things as they can think of (sound familiar?) - but then if that doesn't work they will give you pain meds. Real pain meds. The problem is it takes weeks to get an appointment there.

Thursday, July 31 - 2 weeks listed
I have been waiting for two weeks today. No more calls since the 19th. 

Had transplant clinic today - it was good timing because I've been feeling kind of crummy...not exactly sick or full blown exacerbation but just super tired and not myself, a few sniffles and harder coughing. And I developed some pretty decent pain in my left lung with indeterminate cause.

I am doing well by the numbers! My PFTs (pulmonary function test) and ABG (arterial blood gas) were up slightly from a month ago. I was surprised about the PFTs because I really thought the lung pain would have impacted my breathing. I also had an x-ray which showed no significant change (wanted to make sure a collapse wasn't the cause of my pain).

Lung pain is very mysterious, and I am no stranger to it. Lung collapse, mucus plugs, pulled muscles or tendons/bruised ribs, blood clots and pleurisy, can all be culprits.

Pulmonary doctors will always say, "there are no nerves in the lungs!" -- as if that somehow means there can't be pain sensations coming from there. This is very frustrating because of course our pain is very real and does indeed feel like it's coming from the lungs. I am not the only one to experience this.

Anyway, my pain is probably either a mucus plug or infection that has gotten so bad it is irritating the pleural lining. Duke being Duke they want to make sure it's not muscular so I was sent home on Advil and am to start taking my muscle relaxers three times daily as well.

And besides my sort-of vague symptoms from the last couple of days and lung pain, I'm not showing signs of exacerbating. The plan is to treat the pain and if it doesn't go away, try another antibiotic or possibly increase my Prednisone a bit. I know what would help...Vicodin! Well I can dream on about that because Duke will try every last possible thing - and then some - before they will let me take that pre-transplant. <>

The wait continues... It has been hard for me to keep a positive outlook since putting my cat down last week but I feel like I have turned a corner and am once again excited instead of dreading the call. I still miss my little girl terribly.

Saturday, July 19 - Dry Run!
Got THE CALL at 4:20pm today!! Unfortunately turned out to be a dry run but it went as smoothly as it possibly could have. Now we know what to expect - except for, you know, the actual getting down to it stuff. :)

Find out what went down in my blog post from the next day.

Thursday, July 17 - I am officially listed for transplant
I am LISTED! This is both incredibly exciting and one of the most terrifying moments of my life!!

What can I expect? Half of Duke's listed patients receive lungs within two weeks of being listed. The lung allocation score (LAS) is the single most important thing that dictates priority on the list. However, blood type, blood antibodies, body size and whether or not you are willing to accept higher risk organs also play in. I'm sure a lot of you are wondering about the term "higher risk" organs - I will expand on that if I continue to have more time to wait.

Sunday, August 10, 2014

CF Friends

A recent lunch date with Jessica Newport - she's four years out from transplant at Duke!

I Remember...

  • The first one to show me that living a healthy, active lifestyle could go a really long way to keeping CF in check. And that you could be an adult with CF and still have a pretty awesome life.
  • The first one who I really, really cried about after he died. He was a writer, he had come to NC for transplant but had problems getting listed. We had the same doctor, too. One of the last things he wrote that I read was about him escaping with his girlfriend to spend a few hours at the NC State Fair one beautiful October evening. He talked about the magic of this moment as a suspension of his current reality, and about how in love he and his girlfriend were. He died a couple of weeks later.
  • The first one - ok, really the only one - I had a crush on. Hey, just because it isn't advisable to hook up in person doesn't mean we can't have a little online romance!
  • The first "CF couple" that I knew. They created quite a stir in our little online CF community. But they were happy. And everyone could see that.
  • The first transplant scar I saw in person - WOW! - and the amazing strength of the woman who showed it to me.
  • The first person I knew of with end-stage CF who unapologetically did not want to get a transplant...and stuck to her guns.
  • My sweet sweet friend who was so close to death waiting for transplant that her surgeons decided they could no longer wait for the perfect lungs, so they transplanted her with lungs that had a touch of emphysema. She got a few more years of life after that but it was never the post-transplant life she imagined for herself.
  • The first friend I saw develop crazy strange complications after transplant surgery: a nerve to her foot was damaged which made her not be able to walk right; she got a fungal infection in her heart, for which she had to have surgery and almost died; finally, the fungal infection spread to her eyes and she is almost blind because of it. But she is alive and otherwise doing well 5 years after transplant.
  • My friend who created the most unbelievable written chronicle of living with end-stage CF while waiting for transplant - unfortunately, most of the writing has since been lost. He was also incredibly smart and had as good of a handle on CF as many doctors. Losing him was like losing a funny, talented, slightly nutty CF encyclopedia.
  • Being hooked up by the previously mentioned friend with another CF woman because he thought we were a lot alike. We became great friends, she is still one of my closest friends with CF, and we share many interests including yoga, environmentalism, blogging, making soap and enjoying life's little zen moments.
  • Another sweet sweet friend with a penchant for large dogs and taking awesome photographs. She was also one hell of a graphic designer. On her way to the hospital for her transplant she wrote of seeing a rainbow and what a wonderful sign it was that this was her time to be transplanted. Unfortunately, after a smooth surgery and extubation, about a week later things went completely to shit and she died, breaking all of our hearts.
  • My friend who was way more punk rock than CF.
  • An incredibly knowledgeable cystic who we watched slowly die online, mostly by herself, in her apartment, through her posts about wanting relief from the stress and anxiety of breathing with end-stage lung disease.
  • The first two-time double lung transplant recipient I met in person. She's still a very good friend and has helped me with some of the big questions I had about transplant for myself.
  • Meeting a woman with CF online with my exact name! I know, "Laura Smith," what are the odds, right? Still kind of unusual.
  • The first guy I met with CF who was a total goof ball! And not in an annoying way, but in a positive, funny, make-life-more-enjoyable way. He has a heart as big as Texas and a gift for saying the thing you need to hear most at the exact time you need to hear it.
  • The one I thought I could save but could not because I discovered too late how similar we were...we shared most of the very same reservations about transplant and, whereas I was able to reason through mine, she never was able to get to that point. I just have a nagging feeling that things could have ended up differently for her. And it sucks.
  • The one who has always stuck by me, and who is always the first to ask me how I'm doing when we chat, no matter what crazy thing may be going on in her world.
  • The first Duke CF transplant recipient I reached out to when I started pursuing transplant there - she has given me more answers and information and been more helpful than I thought any one person could.
  • The first guy with CF I met when I started pulmonary rehab at Duke. I jokingly call him a "professional rehaber" because he has gotten too healthy since he moved here for transplant. I was lucky to meet him because we have an incredible amount in common: similar age, we're the same type of proactive/informed patient, we're very connected to and concerned about the people around us. I've been able to learn a lot from him.
  • The first of my CF rehab buddies who I was able to see go through transplant - from the ends of the end stage fatigue/nausea/coughing fits to her showing up with brand new lungs and looking absolutely amazing four weeks after transplant.
  • The first of my CF rehab buddies who could never make it to listing, but who died trying.
It's funny how I've gone from the kid who was always "so healthy" with CF, who almost looked down at or felt sorry for other kids with "bad" CF, and had absolutely no desire to connect with them to a woman who will fearlessly almost always go up to someone new I see at rehab or the doctor's office who I suspect to have CF and introduce myself.

People come into your life for different reasons and if you're lucky enough, you discover something valuable in them. And if you're super lucky, you can give a piece of yourself to them to help them on their journey. There's nothing unique about CF, just that we have an extra special value we can bring to each others lives.

This blog is dedicated to John, Alan, Rhiannon, Marjolein, Paul, Kelly, Melanie, Sandy, Shannon and the many others who have touched our lives and then been taken away from us far too soon.

Saturday, August 2, 2014

CF Husband

I have been lucky enough to have Todd in my life for eight years, but I have not been lucky enough to call him my husband for very long at all.

Todd and I met through mutual friends. I was at the end of a bad relationship. My girlfriend and I started hanging out with a group of mostly single guys and started doing stuff together, playing pub trivia, poker, etc.

One night during trivia, Todd and I started to connect. We ended up staying late and then walked to another nearby bar we both liked a lot. We talked and talked...I loved having someone to talk to who could talk about serious stuff and who knew how to have a good time. This guy was intelligent! He had opinions about the world! And what's more...I agreed with most of them.
One of the best things Todd has introduced me to: Montana!
Our dating started slowly at first. I was newly single and Todd had not been in a serious relationship for a while so we were both hesitant. Two months later, he flew me out to Montana to spend part of his vacation with him and a year-and-a-half later, my three kitties, bunny and I all moved in with him and Doc and Sam. We had things to work out like every couple, but all and all our relationship has been very smooth and we've always gotten along very well.

Enter CF

When I met Todd, I had just started using the Vest. This was a difficult step for me, psychologically, because it meant that my CF now needed more daily maintenance and more of my time. But overall my lungs were pretty good.
Todd and a juvenile Doc hanging out at my apartment in Cary
I can't remember the moment I told Todd I had CF, but, after hearing the story about his mom's diagnosis, rapid decline and death from ovarian cancer, I remember thinking this guy is not going to want to sign up to be with someone who has lots of guaranteed hospital time and health issues in her future. 

But he said that it didn't scare him. We knew I had CF, and I was taking (relatively) good care of myself. That was a lot better than a cancer popping up and then scrambling to control the damage.

Getting Closer

As independent as I am, Todd has not always played an intimate role in my health care like he increasingly has over the years. But he has always been invaluable to me as a sounding board. Todd has a way of very quickly simplifying problems down to their core and then suggesting which courses of action are likely to produce results or not. He grounds me like no one else can.
Todd and Diosa
To say that I am incredibly lucky to have him is a huge understatement. Not a night goes by where I do not thank the universe for Todd, my family and friends, my pets and my health (yeah, that last one is a little iffy sometimes but I really do believe it can almost always be worse.) He is the perfect balance of being there whenever I need him - and there has been a lot of that - and leaving me alone when I don't.

When Todd and I had our commitment ceremony five years ago, one of my good friends told me, "It's hard to believe now but it gets even better!" I hadn't thought much about that until recently when, with my worsening health, I have felt closer than ever to him. He has been absolutely amazing through this whole transplant process, stepping up, helping out, being there for my low moments - all the while remaining his calm, unobtrusive self. I know how scary this is for him and everyone around me, but Todd has the ability to focus on the task at hand and never gets ahead of himself wasting time or energy pursuing "what ifs."

Tying the Knot

After a few years together, Todd and I got the idea to have a commitment ceremony. We didn't want to legally marry for a number of reasons, but we wanted to bring our families together to meet and have a big celebration. So on May 2, 2009, 120 of our closest friends and family gathered at Snipes Farm to watch us commit ourselves to each other and then eat, drink and be merry. What a day!
Corny picture from our commitment ceremony day
Fast forward to our approaching five year anniversary. I'd always thought, and maybe said out loud a few times, that I wanted to do something special for our five year anniversary...maybe go back to Ireland where we so happily honeymooned? But with things as they are, that wasn't going to happen - any trip wasn't going to happen let alone travel abroad.

Then one day while discussing with my dad some of the financial matters I was trying to get in order he said, "this would all be a lot easier if you two were married." And so the seed was planted. We now knew enough about my insurance/financial situation for the next couple of years (me being on long term disability through work and applying for SSDI) to feel confident that marriage wouldn't negatively affect things. So after a thorough vetting of any and all things that might be affected by us marrying and no red flags popping up, we decided to go for it. I'm so glad we did!
Gussied up for our wedding day at the court house

The Caregiver

As if he hasn't done enough already, going into transplant Todd is going to be my primary caregiver. He's going to have to help me both physically and mentally in more ways than ever before. There will be ups and downs and it will be a taxing time for both of us. But there is no one else with whom I would rather go on this journey. In fact, I'm not even sure the journey would be possible or would have come to this point if it wasn't for him. Todd, my family, my friends...I absolutely could not do this alone.

Todd Platt, I love you to the moon and back. I am so excited for us to share many more years together doing the things that we love, and being together with our animal family. Transplant or not, CF or not, you are one hell of a guy, and I'm so glad that I caught you.