My Two Favorite Dorks

My Two Favorite Dorks

Sunday, May 25, 2014

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.

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