Rough Days

Is it just me, or is God calling a lot of the CFers back home lately? Every time I log into CF.com anymore there's at least one other post saying someone else has passed.

I found out yesterday that Jessica had passed away. My family met her husband in the ICU waiting area the night I was transplanted, she had received hers that morning. There were a lot of comlications after the surgery and they ended up having the trach her. Come to find out later that she had B. Cepacia which infected the new lungs. She passed away on March 8th.

I've heard of people having survivor's guilt after transplant but I always assumed it was for the donor. I never expected to have such guilt over hearing this news. There's a whole lot of fear attached to all of this too. I'm 6 weeks post tomorrow... Just 6 weeks. It's just hard to think, that could of been me.

On a brighter note, Kelly's competition went well this past weekend. Her team got several overall high scores and she got sterling silver with her solo. Not as good as she wanted it to be, but she did well and we were proud of her. Solos are hard and this is her first year doing them... and it's in lyrical, which in my opinion is the toughest to compete in! She has another competition this weekend, which I will be at again and I'm sure they'll do great like they always do :)

Busy Busy Busy :)

Over this last week I've been pretty active. No marathons yet, but as soon as my legs are strong enough, watch out!!

Got my INR checked today at the anticoag clinic and they said it was perfect :) 2.2 so they don't need to change my coumadin levels, which makes me happy. Got a call from Cleveland about my other drug levels, they're doing great too! Only thing is one of my white blood cells is a little on the high side so they're increasing one of my meds which will knock that number back down. Glad to hear that they're so on top of things like that :D So there's the boring medical part of all this... on to the fun stuff!!

Sunday was my first outing since I've been home. I did it up big, LOL. Cameron and I went to Smokey Bones for lunch. Apparently, if you walk into a restaurant wearing a mask and want a table for 2, you get seated immediately. hmmmm, maybe this mask isn't such a bad thing :P We then went to Kroger's since I've been craving fruit and dairy. I was able to walk around the store for a good while and when I got to the car... I WASN'T SHORT OF BREATH!!! My legs hurt like I was running, but Andrew was nice and strong still. It was amazing!!

Monday was lab drawl day, so I got poked and then got some yummy McDonald's breakfast :) I spent most of the day on the couch though because my legs were a little fatigued, haha! I did go see Karen Vaske (the angel lady) that afternoon though. Just some theta healing to help with the side effects of all of the drugs. Nausea, tremors, hair thinning - ya know, the fun stuff :) Tuesday was boring, but my legs had recovered.

Wednesday Cameron and I decided to tackle Kenwood mall. I only did the lower level so we could finally get his birthday present. His birthday was in September and I just hadn't felt well enough to go to Fossil with him to pick the watch out. I was able to do that, get some new lotion for my face at Clinique, eat dinner, just overall, be normal. Well, as normal as one can be with a mask on their face that has little multicolored bandaid people on it, LOL!!

Thursday was spent doing some laundry and watching the WKU game later that night - GO TOPS!! and Today I had my clinic visit and then Mom and I went to Target (where I walked the whole store without gasping - BEAUTIFUL!) and then met Caroline, Brian and Moo for lunch at El Caporal. It was very yummy and I was actually able to eat quite a bit which was a nice change. Tonight Aunt Pam, Jerry, Aunt Lois, and Uncle Don are all coming over to watch the X game - Let's hope it's a great game!!

This weekend's Kelly's dance competition so we'll all be busy with that. It'll be nice to be able to go to one and cheer her on :D I'll be sure to update about all of that later on.

HAPPY SPRING!!

Blog Changes

Yes, I like changing things around on my blog... just wanted to let everyone know that I have changed things around again. :)

Enjoying Home

I'm back home in Cincinnati for a few weeks until I go back for another surveillance bronch. For right now the family and I are just enjoying being home.

I got the results back from the 1st bronch and showed slight rejection. My nurse said that it's completely normal and laughed saying if I didn't show any they would think I'm weird. We did a 3 day Solumedrol burst followed by a 3 week prednisone taper back to my normal dose.

All the aches and pains are getting better. The worst part of all of the side effects have been the tremors and my hair's thinning a little. Nothing too horrible and I've been told that within 6 months things should stabilize. Plus, if this is what I have to go through to breathe.... totally worth it!

Oh, and the blood clot thing. They think it's from all of the lines I've had placed over the years. My clotting times have always been fine and I've never had any swelling so no one ever thought anything of clots. After my arm swelled so bad (which is now back to normal - YAY!!) they searched and found several clots. I'm just on coumadin now until a few days before procedures and then switching to lovenox until after the procedure then back to coumadin. And it's only for 3 months they're thinking.

Now comes the fun part of regaining muscles... who knew staying in bed for a week would set me back so much in the physical department :D But that's all that going on here. I plan on taking my demon of a dog for walks this week to enjoy the hopefully nice weather. Plus some blood work, a trip to the angel lady (Karen Vaske) and my first visit at the Coumadin clinic. Busy, but easy week :) Hope all's well with everyone else!! It's just good to be home!

Monday Evening-Surprise!!!!

Hi everyone!
Amazing day! I got to the hospital this morning and the nurse had already told Jennifer that she was being discharged today. The Dr. on the floor came in and said that they were discussing Jennifer in the meeting and said she could go home, but didn't say home, as in hotel, or home, home as in West Chester.
We made a few jokes about it but continued to sit in the room. It was 1:30 and I had not eaten lunch, so decided to go down to the cafeteria to see what special foods they had for today. As I left the wing that Jennifer was in, I ran into KeLynn, the nurse coordinator for the post-transplant and she said we were going home to West Chester. I love that lady! lol She is actually a lovely person and I really do like her, but was thrilled that we were going home. I went downstairs to call Danny, my brother, to let him know that he shouldn't rent a car to come to Cleveland, since we were on our way home! He was in Columbus delivering a load, so told him I would swing by to let him see Jennifer and of course, I wanted to see him too. We spent about 45 minutes to an hour with him, he checked my oil in the car and noticed I was 2 1/2 quarts low. Of course, I got the look over his glasses, like "I thought I taught you better than this" look and said we needed to get oil.

We went to buy oil, we visited for a while and then he had to move down the road to get another load for S. Carolina. We followed him to I-71 and got on the expressway and headed to West Chester. We arrived a little before 9, turning the corner down our street and the whole neighborhood was standing in our driveway all the way into the street. How awesome. I stopped the car at the corner, just shocked, Jennifer and I sat in the car, crying! What an amazing group of friends we have!!!!
There were posters, smiles, hugs and congratulations from everyone.
Jennifer came into the house, afraid to be outside too long. I of course, stood outside talking to everyone and just enjoying everyone being outside and the amazing group of friends and support we have.
So, we've made it back home and so happy to be here. Jack has snubbed Jennifer, but sure he will get over it. Sam has acted like a puppy, turning and running, but can't see. Kelly was crying and excited that we were home, all together again and Ray was just doing his thing, content that we are all home.
We have an appointment on March 24, so she will go back, where they will do the angiogram and not sure if another bronch is part of this or not, but another visit to Dr. Budev. I'm sure that Jennifer and I will sleep well in our own beds tonight. We are beyond thrilled to be home, especially in this wonderful neighborhood with all the wonderful friends that we have. It was truly a moment that we will never forget! And we're HOME!!!!!!
Love to all!
Becky and Jennifer