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. :)

Busy Bee

This is what the inside of my new car will look like!! First VW, first diesel, first BRAND NEW CAR!!

Two weeks ago we got married, this week we bought a car, next week I start transplant testing and the following week I go to the beach - how crazy is my life right now? And this is while also juggling my bridesmaids duties for my best friend's wedding in early June, continuing with the arduous process of applying for social security disability insurance (SSDI), getting our wills done, starting the new pulmonary rehab program in Durham and on and on.

My car! I got a 2014 Jetta TDI (diesel) manual transmission car - very fun to drive! Very cold AC! Light color outside and exterior to help it stay cooler in the summer! (good for my breathing) Plus, lumbar support in the seats!! (good for my back) It also gets great gas mileage especially on the highway. And it's a sweet ride...nice and new...I never thought I would have a new car EVER.

The timing may seem strange, but we have been thinking about it for a long time and I have done a ton of research. Now we finally know what our income will look like with me not working and I am in need of reliable wheels with all of these trips to Durham. I HAVE A NEW CAR - AWESOME AWESOME AWESOME!!! (I won't pick it up until early this week, hence the stock photo above.)

The good news is that I have managed, for the most part, to not totally wear myself out with all that we have done. And it has been so awesome! The getting married and the car I am super excited about. I am also actually a little bit excited to start my evaluation.

I thought I might get nervous, but so far not. I am taking it one day at a time. Here is a run down.

Patient is positioned, laying down, into the circular part. Then a die is injected into you making your whole body feel warm while it takes pictures.

Tomorrow I have only an orientation class, a scan and a meeting with the nutritionist - and believe me, there will be a lot to talk to her about with all of the weight I have recently lost. The worst part of it is that we have to be there AT 8 am, which means leaving here at 7 am, which means getting up at 5:30!

The next day is also short: a CT scan of my lungs followed an imaging of my upper GI tract.

This shows someone's intestinal tract in the Barium study

Wednesday is a bit longer: I have an ultrasound on my liver (people with CF an also have liver issues - hopefully it looks good or else they may want to do a biopsy!) Next is meeting with the infectious disease doctors. We will be discussing my bacterial resistance and how to best deal with that during and after surgery.

Then I meet with the social worker who meets my mom and Todd (primary and secondary caregivers), makes sure we are capable of getting through post transplant at home, makes sure nobody smokes, and just basically inquires about your support system. Lastly we meet with the financial councilor. I hope for this to be a fairly uneventful meeting with lots of good news. Meaning, that Aetna has agreed to cover my transplant 100%.

Thursday starts out with what I have heard is the worst of the tests. It's called a manometry pH test. I have renamed it "the barf test." Here's why. The first part they put a small tube into your stomach through your nose and check the pH levels there. Then they have you swallow sips of water while they watch how the esophagus behaves. It's supposed to make people really nauseous and if you barf you have to swallow it again. The good news is it's only 10 minutes or so. The second part is that either with the small tube already in your nose or another one they measure the pH in your stomach over a 24-hour period. So you go home, eat and drink "normally," record what you eat, and then come back the next day for them to take it out.

Next Week: Beach! Beach! Beach!!

The next week, we are off to the beach for the week with my mom, brother, sister-in-law and nephew. Actually, Todd can only go for the first part sadly. I am super excited if you can't tell.

Right now I am feeling good about my energy level. I hope this holds up. I am going to be very diligent about rest this week. My lung function numbers are still really low, but I have been less short of breath this past week, I am coughing a little less and my energy is better. Yay!

When I get back from the beach, I will have Sunday and Monday (Memorial Day) to recover, and then two more days of transplant testing. Tuesday is super busy with labs, PFTs, xray, and a cardiac consult (for Wednesday's test) and meetings with both the surgeon and pulmonary doctor.

For this test, a catheter is threaded up through your groin to your heart (only on one side, not both). They look around and make sure everything's working alright. Fortunately you get conscious sedation.

Wednesday is the other day tied with manometry for most fun: the cardiac cath. I don't actually think the procedure will be a deal at all, I will be twilight sedated so I won't know what's going on. The hard part is that you have to lie flat (problem!) afterward and avoid coughing (not even sure how that's possible) so that a blood clot doesn't break off into your leg. Ugh! I will definitely talk to them about all of this beforehand. And surely I am not the first cystic to have coughing issues when I lie flat...or the first one to not have to cough for two hours. I probably cough every two hours in my sleep!

After that, my life becomes all about the 1:30-5:30 daily rehab sessions in Durham and preparing for my best friend's wedding on June 7. It really wasn't bad, the one I went to last week. Very comparable to what I was doing before. Then that next Tuesday (June 3rd) the committee meets to discuss all of my tests and decide about me being ready to be listed or not. I am putting the odds at 70% they won't list me, 30% they will. That is assuming nothing has cropped up in the testing.

So yes, that's what all is going on. Wanted to fill you in about the transplant stuff in case I don't get a chance to blog for the next couple of weeks.

Thank you everyone!!

My Amazing Week (Last Week) In Fuzzy iPhone Pictures

On the fifth anniversary of our commitment ceremony, May 2, Todd and I got legally married!!

We didn't want to make too big of a deal about it - we just went down to the court house with my mom and my longest best friend Erica. Everything was smooth and fast and then I was a Mrs.! This is going to make our legal and financial lives so much easier - as well as the the transplant process.

Quick Update About Other Things

I am feeling pretty good these days. I actually feel fairly stable since coming off the IVs two weeks ago - yay! Don't get me wrong, I still have limited energy and frequent coughing fits but that is just a part of life for me now.

I am officially starting lung transplant evaluation at Duke on Monday!! I may blog more about this over the weekend, but just wanted you all to know. And I officially started Duke's pulmonary rehab program on Wednesday, although today will be my first full day of exercise.

Some Things I Liked About Duke

I had my initial Duke appointment for lung transplant evaluation this week. The day consisted of an introductory meeting with the pulmonary rehabilitation folks, some basic tests (lung functions, x-ray, a blood draw and a 6-minute walk) and a meeting with the head pulmonologist. Mom, Todd and I were there for about seven hours total. Long day!

So many things were going through my head as I sat in the back seat with my big oxygen tank on the ride home. I felt numb and discouraged...  I could not wrap my brain around how this was all going to work out, and all of the pictures of transplant I'd had in my head suddenly seemed like looking back at old black and white photographs. Was I sure this was really for me?

Probably some of that was fatigue. And the fact that one should feel overwhelmed after a day of going from clinic to clinic, seeing all new faces crowding into a waiting rooms filled with the ghosts of Christmas past and future. It was like all of the progress I've made toward warming up to transplant was stripped away.

The Next Day

It's a thing with me that I hit rock bottom before a big upward swing. And fortunately I woke up the next day with less doubt, fear and feeling less overwhelmed. Let's do this!

I emailed my transplant coordinator some bullet points I wanted to be sure the pulmonologist understood about my current state of decline, went to pulmonary rehab and continued talks with Todd and everyone about what all of this means, what it might mean and what all that means about what we should do now.

Looking super dorky with the pulse-ox around my forehead before my walk test

The Outcome

Ultimately, we and the pulmonologist agreed that it was the best thing for him to recommend me to go ahead with a full evaluation. There is a committee made up of the doctors, transplant coordinators, social workers, pulmonary rehab folks, et al. that meets every Tuesday which makes decisions about who to accept (and, after evaluation, who to officially list) for transplant.

They will discuss me on Tuesday - I should be a pretty clear case since there are no "deal breakers" with me at the outset, I am clearly either very near or at the start of the window for transplant evaluation and (I hope) because they have realized my awesomeness and what a good candidate I am in their short time knowing me. I should hear either way from my transplant coordinator by the end of next week I hope.

Assuming that I get the green light, scheduling will then begin for evaluation stuff in the coming weeks and (at some point) they will want me to start their treacherous month-long pre-transplant pulmonary rehab program. I am confident after meeting everyone that they will not let me  deteriorate waiting for the four weeks to be up if I continue to have these (pretty much) recurring lung infections causing more decline. Physically, I am fit enough by their standards to undergo transplant; anything else is icing on the cake as far as I am concerned.

Some Things I Liked About Duke

And now for promised things I liked or was impressed with on Wednesday:

• Everyone was super duper good about gloves, sanitizing, washing hands - of course that should be expected but I was impressed nonetheless.
• For every test I had, results were printed out for and given to me to keep without me asking! That was like a dream come true for me - I am always trying to scribble things down in my notebook otherwise and then later can only half-interpret some things.
• With all the tests I had and places I was shuffled around to, I felt like they were really well organized...they never lost track of me.
• The doctor was very thorough, and I have since seen the same thing from my transplant coordinator although I have yet to meet her.
• I came across some really nice, helpful and caring people there who were also really good at their jobs.

Some Things I Didn't Like So Much About Duke

• Long walk to the transplant clinic with end-stage lung disease, no nearby parking, valet parking with a huge waiting line.
  
• Crowded waiting room filled with people who were not wearing masks - what?!?
• My appointment with the pulmonologist was kind of strange...it was as if he had his own way the appointment was going to go in his head but that he wanted to keep that a secret from us. I wasn't sure when to talk, when to let him type, and he did not give me any clues. He was thorough, but I also left feeling like he missed the big picture of why things have become so serious so fast with me - part of that was my jumbled mind at the end of a day's worth of appointments, but part of it was him, too. I do not want to form an opinion of him based only on this one meeting though.
• Arterial blood gas draws at every appointment - yikes! For those who do not know what that is, click here (note, I will spare you an informational page with photos for those who are squeamish of needle photos like I am. Suffice to say, not fun.)

Overall, we all left feeling like we had come at the right time, and that we were in good hands. And while they told me there was nothing more I could be doing to be a better candidate, I have decided to try and start doing pulmonary rehab 3 instead of 2 days a week in Raleigh. And I am making a better effort to get my blood sugars under better control - things have just been wacky lately and it doesn't help that my sugar intake is higher than it should be.

Other than that, continuing to talk about and process things with my friends and family, doing IVs every 8 hours, living life as normally as possible these days and still holding onto some hope that things may improve or at least stop declining so that this won't all feel like it's happening so fast.

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.

Finally...Progress!

After many weeks of waiting, some progress was made and some good things have happened this week. I can't tell you how excited I am for things to start falling into place.

1. My long term disability got approved through my employer. This means I will get 60% of my pay and can keep my insurance paying only the employee contribution for two years. THIS IS A HUGE AND AWESOME DEAL. At that point, I should qualify for Medicare insurance.
   
   Two days after I found out I got approved, the woman called back with the specifics about monthly income. It's so nice to know this - one less question mark. Granted, when I get approved for SSDI, all of this will shift because I cannot get double payment for my monthly payout, but hopefully it won't change things too much.
2. Having gotten the official LTD approval, I wanted to go ahead and do something else that has been hanging over my head: let my co-workers officially know (those who weren't already reading this blog!) that I would not be coming back to work. It's a sad milestone, but at the same time good to have over with so that I can move on. I sent out an email and go so many responses back right away of well-wishes and people sad to see me go. I feel very loved. I am absolutely dreading going into work to clean out my office...it's going to be so sad!
3. Feeling like I had fallen through the cracks at Duke, I contacted them this week and found out the sticking point: I was in the queue waiting for them to contact my insurance to see what they will pay on my outpatient visit. On Thursday, I found out that Aetna approved my visit and they should be calling me very soon to schedule. Yay!
   
   
   
   
   
4. After hitting another low with my lungs, we decided to start on IVs again this week. I have honestly never been happier to start on IVs...everything was becoming so hard each day and I felt so limited and frustrated with what I couldn't do. Good news! I have had a very quick response to the antibiotics. My numbers aren't a ton better, but every little bit of improvement I can feel. And my kidneys are doing amazing.
5. We finally met with a lawyer today who is going to do our wills and set up our powers of attorney. This has been on our 'to do' list for a long time and it feels good to finally get to it.
6. I got my phone interview for SSDI scheduled for the end of April. So one more step down that long, winding road.
   
   Progress!!
   
   
   
   
   
   Photo credits: A Good Week, virginmediapioneers.com; Charlie Brown and Snoopy, why-knot-kwilt.blogspot.com; L, thevword.net

Re-positioning and re-prioritizing

 
I'm not gonna lie - it's been a hard week.

But! We are smack dab in the middle of my favorite Triangle event of the year, Full Frame Documentary Film Festival. That's right, I am a documentary junkie, I have been for many years, and this is when I get my fix. And the coolest perk of having a friend on the selection committee for Full Frame is free passes to more movies than I can possibly watch in four days. Tom rules!

I have had a bad luck streak with Full Frame in the past. Last year was the first year Todd also got passes, and I missed the whole thing entirely, home with a terrible multi-day stomach virus (which led to a lung exacerbation and eventually my back surgery being postponed.) The year before that I think it was something else that caused me to miss a lot of it.

But then there was one year that the weather was absolutely beautiful...  I went to several movies on Thursday (my then day off work), cut out of work early on Friday to see a couple, more on Saturday, and was documentaried-out by Sunday! Point is, I remember hanging out in the courtyard, iced coffee in hand between movies, thinking that if I had it my way, I would go to Full Frame every single year - and it would be this awesome.

Back to the present, Todd and I knew that, sadly, our free-riding days were coming to an end after this year. Todd took time off work, we planned out a bunch of movies, some together and some not. I dutifully ordered extra oxygen - the special large tanks that require a cart and shout to everyone you wheel by, "hey look, I'm just a youngster and I need oxygen!"

But this whole week I have just been feeling, well, like I am really getting my ass kicked by cystic fibrosis. My lung functions have gone down since I stopped the first week of IVs, I have been needing oxygen basically around-the-clock, my weight has dropped, and my energy...well, you can imagine. Pulmonary rehab was really hard this week, but just plain life has been hard, too.

I realized that even as I have gotten sicker, I am still operating in a bit of a "healthy Laura" mindset - I've not gotten the hang of being realistic about what it takes to do things. I say to myself, "I want to do this, this, this and this today...and maybe that and that if I have time and energy." That is a normal, healthy Laura thing to say. The reality is, I do one or two things and, as I start to feel my energy drain away, quickly start re-prioritizing the list, "well, that can wait, so can that and that, but this has to be done."

I've gotten better about letting go of things that aren't crucial, and I have tried to delegate, too, although I could be better. "Todd can help with this, mom can help with that, a friend wouldn't mind doing something else."

But you can see how, overall, it's so frustrating to not have the energy to do things yourself that you used to be able to do. Frankly, no one wants to ask for help because of not being able to do it yourself. The other thing is, with transplant coming up, I hesitate to start relying on people too much when I feel like I could be asking a whole lot of them in the coming months. I mean, who knows what's coming? But I do know both that I will need more help with a transplant and start feeling less well as the time gets closer.

So: does it suck to be wheeling around a big oxygen tank and unavoidably being labeled as the sick girl at Full Frame? Yes. Am I still happy to be there enjoying it? Absolutely! And that, in a nut shell folks, is kind of like my life right now.

I guess I have to keep in mind what's important, and take it a little slower for the rest.