My Two Favorite Dorks

My Two Favorite Dorks

Sunday, May 11, 2014

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!!

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