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!"

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!

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.

Friends & Family

Hanging out with Simon at Myrtle Beach

My week at the beach was awesome. Got to relax, spend time with family, eat good seafood, sampled plenty of key lime pie, possibly had some of my last days of sunbathing (can't be out in the sun after transplant) and discovered the joys of non-alcoholic beer! But the best part was getting to spend so much time with my almost 3-year old nephew Simon.

Simon and my brother Nathan playing mini-golf

My mom (grandma!) reads The Nose Book to Simon while he holds his purple elephant

Simon and his mom JoEllen bundled up after a swim at the pool

I am glad to have a couple of down days now before my last two days of transplant evaluation on Tuesday and Wednesday. Tuesday is a day of more or less regular pulmonary clinic testing (x-ray, blood tests, arterial blood gas, pulmonary function tests) and important consultations (cardiologist, pulmonologist and surgeon.) Wednesday might or might not be a long day of heart tests depending on whether or not they want to do the left heart catheterization. I will also be getting an ECHO cardiogram and an EKG.

And then, I wait. For a week. Until the following Tuesday (June 3rd) to find out their recommendation(s). Possible recommendations include: 

1. I am ready to be listed (not likely)
2. I am looking good as a candidate but need to do X, Y or Z before they can make a final decision
3. I am looking good as a candidate but am not yet ready to be listed - come back in three months
4. Something cropped up during the evaluation that makes me not a good candidate and they will not be listing me (very unlikely)

My personal guess is that their response will be a combination of #2 and #3. And in the meantime, I continue going to the daily rehab in Durham.

My Best Friend's Wedding

Fortunately there will be a lot going on to distract me. My oldest best friend from Michigan, Erica, is getting married on June 7 in Greensboro. I am the one and only bridesmaid. I think it's going to be fantastic.

However, being in end-stage lung disease is far from the ideal time to have this honor bestowed upon me. So far, I managed to throw an excellent bachelorette party in the mountains in February...barely! I went wedding dress shopping and bridesmaid dress shopping with her. I went to the engagement party and there is a wedding brunch I hope to make it to next weekend.

But a lot of that has been just me showing up. Aside from making the wedding favors (60 small bars of 808 soap!) I haven't been able to do nearly as much as I would have wanted for this wedding. When Todd and I had our commitment ceremony five years ago, Erica was my right hand lady and she did so much to ensure the big day ran smoothly and that I was happy and able to enjoy things. I had total confidence in her. And now I wish that I could return the favor. Aside from showing up with my bars of soap and making a toast, I'm not really going to be able to do much of anything. Honestly, just showing up and making it through both the rehearsal dinner and wedding day is going to be a major accomplishment.

Me, enjoying newly discovered Coors non-alcoholic beer, while my friend Erica sips on a margarita

I know this is how it is - these are my limitations right now and fortunately I have a friend - friends - who understand and who are fine with picking up extra slack. But that doesn't mean it still doesn't make me a little bit sad.

So while it's a once-in-a-lifetime event for my friend, to me it will also be another weekend of making sure I plan for enough portable oxygen, trying to keep up with my insulin pump and an irregular eating schedule, doing enough chest PT, getting extra sleep, taking the pills that make me cough less/keep my back from hurting/give me extra salt in the heat and trying to not cough so hard that I pee myself in front of a bunch of people in an expensive dress. In other words, it's hard to give someone else the attention they deserve then you are so busy trying to take care of yourself. What did I tell you? My health is a full time job! With no weekends off.

A Mix of Emotions, But Mostly Really Really Happy

This week I both completed four days of transplant evaluation appointments at Duke and bought a fabulous new car. I am feeling relieved to have made it to the end of the week. I have two more days of testing when I return from the beach, but I have 10 whole days to just relax until then and play with my 2 year old nephew. **big smile**

Reflection

I drove to Durham for the first time by myself in my new car today - it was just to have a nose catheter thing for my 24-hour esophageal pH study pulled. As I was driving home, it was my first real chance to think alone after everything that's happened this week.

I started to get a little emotional. I felt overwhelmed by the amount of love and support I have gotten as I've started this journey. People have reached out to me and offered to help, some I didn't even think were that close of friends. My close friends have been amazing - incredibly understanding and supportive. And, importantly, they allow me to keep some semblance of normal in what I jokingly refer to as my convalescent stage. My family has continued to be some of my biggest cheer leaders. And Todd has - as always - been my rock, my lovable Buddha, my most trusted confidant.

As hard as it was to start asking for help, people have been so happy to do it! They run errands for me, bring me delicious home cooked food, come clean my house. Later on in this process they will be carting me back and forth to Durham.

Seriously, How Jealous Are You of My Life??

A natural filtering process has removed all but the very best, most awesome, supportive, loving, kind, considerate, authentic people in my life. How lucky am I? If only I could have this AND my health life would truly be unbeatably amazing! But of course it is because of my health that I have gotten this clarity.

Similarly, all of my worries, concerns, things I tried to control that I couldn't, and to some extent my fears about the future have dissolved away. I will not let one single ounce of negative use up my valuable health and energy. I feel free.

Of course, as a part of this process there are people and things that could not come along. And for some of this, I am still sifting through sadness. I am grieving disappointment. I am feeling the loss of all things left behind.

But other than that, my gosh, I've accomplished this huge thing! Going from being unsure about transplant, scared, my health on a downward trend to being here and now, and dealing with everything (at least trying my best!) including transplant one day at a time. Coincidence or not, my health also seems to have hit a plateau for the time being.

So if you're one of the amazing people mentioned above - thank you! And if by chance you are someone in one of the other categories, well, I hope you understand that I have to do what's best for me right now. Preparing for death and one's (hopefully) impending rebirth makes one have to be a little selfish.

I want to end this blog on a positive note: I am so so happy right now!! And really, now that I have my brand new Jetta, there's nothing else in the world I can think to ask for. :)

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.

Friends are the greatest

My friends Jacqueline and Brian and me, circa 2003

This has been a week of catching up with friends. Wednesday night, I had dinner with my friends Jacqueline and Amy. I hadn't sat down with Jacqueline in probably three years so it was really nice. Thursday, I had my friend Jeff over for dinner. He is always good company. And yesterday, I went out with two of my best female friends (and my two soap partners) Elaine and Maura. These kinds of days are so good for the spirit.

I spent a good bit of time yesterday going shopping for and helping my mom to prepare for her upcoming hip-replacement surgery on Tuesday. I think we both know what a huge thing we have ahead of us, but we are trying to roll with it as much as possible. My mom has gotten to the point where she is in a good bit of pain just walking around the house, so it will definitely be a big change for her to be more mobile again. Lunch out this week and a short shopping trip wore her completely out!

Todd's dad is coming for his second chemo treatment on Monday, just coming to Raleigh for the day. I hope that he continues to not have a difficult time with side effects. He and Todd are leaving for Montana in two weeks. Sadly, I don't think I'm going to be able to join them for part of it. We have had so many expenses this past month, and tickets out there are not cheap. I hate to miss it, but think the best thing for me to do is stay here.

My leg is doing about the same...not very good...although it did get a teeny bit better this week. I managed to get some lidoderm pain patches, but I'm not sure how much good they are doing (yet?) My turtle-paced progress continues to frustrate the hell out of me. And I am now gaining weight from my lessened schedule of exercising and the recent stresses which have made over-consumption sort-of inevitable.

Lastly, we have not for sure decided whether or not this week will be my last week on coumadin or not, but I have a feeling I am going to end up taking it for an additional three months. I am disappointed, but it is not the end of the world.