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.