Wednesday, September 5, 2012

Well, where to start...

Ok, I admit. I've been slightly MIA from blog-land. Sorry to those who care!

The past week and a half or so has been a pretty good one overall. Lots of tests, results, etc. While I'm sure you'd rather hear more interesting news, but in the interest of a complete and thorough report, I'll start with the boring stuff.

Last weeks tests and results:

Went in last Tuesday for the last WEEKLY blood draw, chest xray, PFT and bronch. Ill still be doing the blood work and xray each week, but the PFTs and bronch will be cut back to once every two-three weeks, which I guess is a good sign. Of course they can (and will) schedule whatever they think is necessary based on how Im feeling, xrays, etc. But for now, Im gettin a little break. Won't be havin another PFT/bronch day until next week...nice :)

Anyway. As usual, they were pleased with the initial results they had - chest xray looked the best yet, bronch was great, altho they did clear away a few mucus plugs from my lower lobes. That is normal, and one of the reasons for the bronchs. Once they removed my old lungs and put in the new ones, for some reason the "cough reflex" was lost. Happens to all lung transplants. So right now its very difficult for me to cough. You would think that someone whose been hackin herself to death for 28 years would know how to cough, even with new lungs...but apparently no. My cough now is this forced, barking thing and its very strange. I have to allow myself time to heal more and teach myself how to cough bizarre. A CF patient who doesn't know how to cough. Never thought Id see the day....

So in order to keep me clear, since I cant do it myself, they cleaned out a little crap (thankfully not much and even better -- no INFECTION STILL!!!), and took the usual biopsies to check for rejection.

Cut to the next day - back in for the results. Dr Alvarez (my favorite - he's such a cute little man and super funny...even though I don't think he means to be...but he sure does amuse me), let me know he was thrilled with the Xray, but apparently my biopsy is showing A2 mild rejection again. He also said he was very confused as to why its showing that. I was curious until he told me that nothing else looks like rejection - my blood results looked great, stats are great, and xray is perfect. And the fact that my PFTs were up 14% from the week before (77% baby! Haven't had those numbers since HIGH SCHOOL) that it didn't make sense. He said they've only seen that a few times, so they weren't really sure what to make of it. So he said the doctors were gonna look at the pathology slides at their weekly meeting to double check. He told me that my PFT numbers were some of the BEST they have ever seen at this point in recovery!! Which is awesome, but also terrifies me to death. (The whole bigger they are harder they fall mentality?) basically he modified one of my meds, but thats really it. He said that the biopsies are just a snap shot of what the tissue is like at one moment. It could be a matter of some white blood cells that get "lost" for a moment and that we just happened to look at that very moment. (He actually went into this long explanation about a BMW in a bad neighborhood, and if u were to see it you might think it was a good neighborhood cause you saw the BMW, but really its the only one in the neighborhood cause the driver got lost for for a minute...yeah I know. Like I said...goofy little man, but it made sense, I guess lol) And since everything else looks SO good, he's happy with where I am, but to keep them (as always) updates on ANY changes. So all in all, I guess a pretty good report. If they're happy, Im (for the most part) happy.

So now to the more exciting stuff -- last Friday, August 31st, marked ONE MONTH POST TRANSPLANT!! How crazy is that?? Chris and I enjoyed our first weekend alone since pre-transplant when my mom headed over to Tampa to be with my sister Kellyn during her back surgery. By the way, thanks for all the love and prayers for her last week! Shes still pretty sore, but doing good. Hopefully this surgery will relieve a of her pain from a car accident she was in about two years ago. Shes been fightin a LOT of back and neck pain for a while now, and Im just happy she's finally getting some relief. She still has a LOT of neck pain, but that will require surgery on more disks please keep her in your prayers for recovery, pain relief, and whenever she has her other surgery, that it goes smoothly. I know she'll be glad when all this is over!

Chris and I spent Friday workin out/walkin, and had a nice afternoon poolside ( me not in the water and under a canopy since I can't really be in the sun now - :/ - but still nice and relaxing). It was pretty nice and NORMAL! Saturday was restin and football alllll day, a little more poolside, then we grilled out with my cousin. I almost forgot I was in recovery! Of course until Sunday, Monday and yesterday when my muscles have been aching non stop and I have been super tired! I keep forgetting that my body is still healing from MAJOR surgery and I think I have a tendency to overdo it. Its hard not to when, even though you hurt still in your chest and back, you feel better than you have in over a DECADE. Oh well...still gonna keep pushin myself. No pain no gain and whatnot...

Dad came down Sunday and left super early this morning ( :( ). We had a good time just hanging around for the most part, and he and mom had a chance to just have an afternoon just the two of them which I know they enjoyed. Its been over a month since they have been able to hang out together without a group! I think mom is plannin on heading back to Albemarle just for the weekend this weekend which I am happy about. I know she needs a break and to just be home for a while. And she misses those sweet grandbabies of her's in Albemarle! She got to see Mabree last weekend, so Im sure her Mylee/Shelby withdraws are getting pretty bad!

Well that's really about it for now. Told you - nothing super exciting this week, which honestly Im kinda happy about. Its nice for things to be low-key after all the drama and chaos of the past month! Im really hoping this lasts!

Oh and one more thing! I wanted to say a HUGE thank you to everyone who has sent cards, donations, giftcards, and gifts to us the last month! You have no idea how grateful we are to have such awesome people in our lives. The financial contributions have helped SO MUCH. Money is still super tight for us, but the help so many have given has kept our stress levels almost tolerable! LOL! I know there are a few fundraisers in the works for us and for those of you organizing and those participating -- THANK YOU, THANK YOU, THANK YOU! It means so much to us. I just hope that we will be able to return the favor sooner rather than later. We have some of the most amazing people in our lives and we are beyond blessed.

Much love...


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