Hi everyone.
Thanks to those of you who sent reminder notes that my blog showed me still in the hospital! I did get discharged :-)
I completed the Rat-G treatment and didn't get sick at all in the hospital...I was so proud of myself! Well...they discharged me on Sunday evening and Monday morning around 3:00 a.m. I was sicker than I think I've ever been:-( Apparently I just had a delayed reaction to the drugs. Ughhhh! It was really horrible! I hope I don't have to do that one again.
That episode was the beginning of November. With me being that sick on the 1st I just knew the rest of the month would get better!
We were scheduled to move out of our apartment on November 13th and we really weren't ready. Lee had been taking loads in his pickup but we both think the junk was multiplying in the night! Lee packed up the kitchen and most of his clothes while I was in the hospital...guess he didn't need to eat or wear clean underwear (jk) !! We finally got it all packed up by the 12th. We had planned to go to a really nice restaurant for dinner on the 12th because we had no dishes, food or anything else. We were so exhausted that we canceled the reservation and I don't think I even ate that night! :-)
Saturday the 13th Lee went to pick up the rental truck and at least 20 people from our church came over to help us load the truck and clean the apartment. That was such a help...I've never walked out of my house and told my friends that they could lock the apartment up when they were done cleaning! Around 10 people drove to Kernersville to help unload the truck. Lee and I have been totally blessed to have found such a wonderful church family in Durham. We were doubtful when we first arrived in Durham but God lead us to Hope Valley Baptist Church and it's been fabulous - great messages, great friends and of course great food :-)
In our update we have now reached the middle of November with very little Christmas gifts purchased and about 3 million boxes to unpack or did it just seem like that many??? I thought we had labeled the outside of the boxes as to what room they went in..NOT. Because we were reusing the boxes we used when we came out to NC, several boxes didn't get re-labeled. That meant that canned goods ended up in the craft room and it took almost two weeks to find Lee's cell phone charger because it was in a box labeled 'guest room misc.' instead of 'office stuff'. Today is December 2nd and in the last half of November we have unpacked the majority of boxes and gotten somewhat organized.
We also had a great Thanksgiving! We went to Michael's family's house and it was so fun. They are the nicest people and it makes me laugh that they have some really funny 'growing up' stories just like we all do! We missed Amy and Michael because they went to Amy's dad and stepmom's for the holiday. Amy said they had a great time and I'm glad. They don't get to see Dale and Lorie all that often (distance) and life is precious and so is family.
About Thanksgiving for Lee and me...I obviously have everything to be thankful for this year! I can breathe. Above all I thank God for always being with me (then and now) and not letting me drag myself too far down in the muck and mire of self-pity and other non-productive emotions. I can't say enough about faith and patience. This year was a year of strengthened faith and new found patience!
Next I give thanks for the selfless decision of another person or family to donate lungs to me. Thanks to all the docs that kept me going until a donor could be found. Thanks to the surgeon and staff that did such an awesome job creating 'designer lungs' just for my body. Thanks to Tracie and the other TX coordinators for always being on top of my health issues...and we can't forget Lauren and Khara for all their work pre-transplant! Thanks to the docs that still keep me going every single day. Thanks for giving me back my life, my family and my friends.
On to a little medical update...
I haven't been in the hospital since the Rat-G episode. Yay!! Lee and I have both gotten run down from all of the moving. I have come down with a cold but it seems to be staying in my head. I've been getting short of breath so Tracie (tx coordinator) wanted me to come to clinic last Wednesday (day before Thanksgiving). I had a chest xray, blood work and a PFT (pulmonary function test). They looked ok but Dr. Zaas wanted to be oh so cautious and I count on that thought process to keep me alive ;-) He wanted to do a 'quick' CT scan to rule out pulmonary embolisms. Well that quick CT ended up taking six hours because the radiology folks thought I'd had a reaction to the CT dye. It wasn't fun waiting in Durham. But all was well and the scan was clear.
I had my regular bronchoscopy on Monday and I cane back again yesterday to see how my breathing was. I had all the same tests from the week before and saw Dr. Z again. Test results were ok again but because my cold was worse and I was coughing up a little bit of 'blood gobs' he put me on an antibiotic.
My bronch still showed a small amount of rejection so instead of the hospital they ordered solumedrol home IV and a prednisone taper starting at 60 mg. I already gave Lee a heads up that by the time I get the solumedrol and prednisone on board I'll be pretty hyped (let's paper all the walls in the house and then paint the outside...oh, come on Lee it's only 3:00 in the morning!!!)
I got a call yesterday afternoon saying I had to have a followup bronch the first of January because I still have mild rejection. I guess I would have had a break for a month or two if there was no rejection. I don't know what their plan will be if January's bronch shows rejection again. I think I won't worry about it because there's nothing I can do about it - except take care of myself.
I do want to remember to ask Dr Zaas at what point mild rejection might become chronic rejection. Chronic rejection is a biggie. So is moderate rejection - haven't had that!
I've been saving the most exciting news for last - Lee and I are coming out to CA for Christmas!!!! Thanks a huge bunch to Gordon and Ronda...your generosity doesn't seem to know any bounds! We will be coming out on December 17th and staying with John and Sharen and the kids through the 24th. Can't wait!!!!! Our baby Missy will be staying at Camp Bow Wow. It seems like a nice place and we'll be able to check up on her via cameras we can access over the internet. Hope that will be a positive thing!
On Christmas day we will drive to Pebble Beach to share Christmas with my side of the family - Gordon, Ronda, Keith, Stephen, Sue, Rick, Mike, Jake and Jen. We will miss seeing Steve, Amie, Phil and Zach but I certainly understand them wanting to stay in Denver with Amie's mom (her first year in Denver). We leave Pebble Beach the afternoon of the 28th so we are back in Sacramento to catch a flight that leaves way early :-)
We plan on attending church at FSBCRL on the 19th. It will be so nice to see everyone...been too long! The rest of the week is dedicated to seeing Lee's side of the family and as many friends as we can fit it!
Look for our Christmas card in the mail...if it doesn't arrive there's always next year to get them out!
Lots of love and hugs,
Lee, Wendy and Missy
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