I Wanna Go Home

Tomorrow will be my 8th week post transplant. I'm doing great physically, but mentally I am missing home soooo bad. I know I'm on the downhill slide from here, but you know how you feel after being sick and you start to feel back to normal? I feel better than normal. I'm feeling good and am ready to get back to my life! I like Durham, but even if we were here on vacation I would have been ready to go home long before now, lol!

Another bummer to my phychie is the fact that I am still on IV's and two different nebulizer treatments. The fun part is that I get to wear a mask instead of the mouthpiece so I can inhale it through my nose, ha ha, not fun. My sinuses are where the "bugs" are now, but thank the Lord my lungs are clear. Got to keep the bugs out of the lungs!!! Must get rid of them!!The picture above shows me with my combat gear. I just had grand visions before tx that afterward I wouldn't have to worry with iv's and nebulizers every day! I know some people have to use them for a month or so after tx, but mine is going till October 1st. I know that for sure. The one phrase I repeat to myself when I get in this mood is, "I Can Breathe!" That is always the main concern.....Love To All

Transplanted and at "Home"

I know a lot of you have been wondering about me and why I haven't updated my blog myself in so long. Honestly, I didn't even turn on the computer in the hospital. I was too tired by the end of the day. I don't regret choosing Duke as my transplant center, but they are serious about getting up and moving as soon as possible after surgery. I walked 3.5 miles one day around the floor. It felt sooo good to be able to do that without oxygen up my nose! It's hard work, but it will pay off when I'm healed. I was so thankful to be back at the hotel/"home" yesterday. To sleep uninteruppted was a blessing in itself. I don't think me or Philip even moved once our heads hit the pillows. Today has been another day of rest and learning about the new medicine regimen. When I first saw all those pills I was thinking "I'll never figure this out", but with patience and a little organization it's not too bad. I'll get my rest caught up soon and get my strength back. I didn't realize how weak I was until I went to step up on the sidewalk at the hotel and my leg wouldn't support me and I went to my knees. It scared me, but Thankfully I didn't fall onto my hands. I don't know if I could have stood opening up incisions. Now I have two scraped knees in addition to all the other scratches, holes, bruises, tape and iodine residue left on my body.
I'm so Thankful to be alive. It is amazing to be able to breathe. I am very blessed and I want to Thank Everyone for your love and prayers. I want to Thank my baby sister, Melissa, for keeping my blog up to date. She is an awesome woman! Please continue to pray and I'll keep you posted of how things are going from this point forward. What a journey I'm on!

1st Dry Run

I woke up Tuesday morning a little before 7am. Right after I took off my bipap mask and put on my O2 canula, my cell phone rang. It was a tx coordinator who instructed me that I had a potential donor match and I needed to be at the hospital within an hour. Wow! I just got listed this past Friday and I'm already getting a call. I was excited about getting called so soon, but I was reserved to the fact that I would believe it when they told me it was a go. Once we arrived at the hospital, I had to do labs, xray, and had an iv started. They gave me an iv antibiotic, an anti-rejection med, and some vitamin E. The vitamin E helps with the healing process. As the day wore on I started getting hungry, then grouchy, and then my sugar started to bottom out. I was feeling nauseous, sweaty, and clammy. My sugar was checked and it was at 95 so the doctor's would not treat me with anything. I kept pestering the nurse to get the doctor. I felt like crap and was hoping at this point that the lungs weren't good so I could just go back to the hotel and eat. By this time we had been at the hospital for ten hours. Right about the time I getting ready to really show my behind, I got a call from the tx coordinator telling me that the lungs were not a match for me. I was kind of relieved and within ten minutes one of the nurses brought me a coke and a sandwich. She quickly recognized that I was indeed need of something to eat. I found out today that two men that have been waiting for lungs got theirs last night. Breathe Easy Guys and Congratulations! So I survived my first dry run and learned a few things for the next call. Unless I'm told to get to the hospital "now", I will eat before I leave and make sure I have some caffeine to keep that pesky headache away. ;-)

I'm Going To Duke

Today I found out I am going to be transferred to Duke University Hospital in North Carolina to be evaluated for transplant there. It seems that the other transplant center, where I am currently listed, doesn't feel like I'll be able to wait long enough for their average wait time which is 6 months to 1 year. Maybe they have too many people ahead of me on their waiting list, I don't know. I know my doctor doesn't want me to wait too much longer and frankly I don't either. The average wait time at Duke is only 21 days! Is that not awesome. I guess they have a lot more organ donors in their area than we have here. It happened like a whirlwind. One of the doctor's came in my room and said "it looks like you are going to be transferred to Duke" and I was like "ok?". It was like wham and my heart started pounding like I was waiting to ride the scariest roller coaster at the fair. The rest of the day me and my mom were on the phone letting family and friends know what was going on. Of course we have no definate answers yet because it is all still being "planned" as in whether I will be taken by airplane, ambulance, or private vehicle. I'm all for a road trip but planning to travel with oxygen is never easy. I guess I'll leave the planning to them and just know that all I'll have to do is concentrate on breathing and keeping my nerves in check.

Donate To My Lungs Fund

I'm not one to ask for charity. I've always tried to be independent, but sometimes a person just needs to get over it and realize it is okay to ask for help. I am currently waiting for my call to get my life back, which is, I'm waiting for my call for new lungs, in case you've just tuned into reading my blog. I decided to add a donate button to my page to help with travel/lodging expenses, etc. so any help will be truly appreciated. Some people may not realize how expensive a transplant truly turns out to be. It isn't just about the days leading up to the transplant or even the weeks afterward. It is a life changing surgery that will entail expensive anti-rejection drugs and numerous doctor visits for the rest of my life. I have good insurance, but even insurance doesn't cover everything. I am ready for this commitment. I just don't know if my wallet is, lol. Please do not feel obligated to help if you feel you cannot. The economy is tough for a lot of people now days and I wish my health could wait till things looked up, but sadly life doesn't work that way. God Bless You and Have A Wonderful Day!
Recycle Yourself, Be An Organ Donor!

Road Trip to Duke

It looks like I may be taking a road trip in the near future. My doc wants me to consider being listed at Duke University in North Carolina. Duke has a track record for having a short wait time on the transplant list. Apparently I'm too fragile to even go home now. I may never go home again. This is a reality that hit me last night. If I go from the hospital I'm in now to Duke, I may not ever come back home. It is a harsh reality. Scary, but true. It's not something that will keep me from going. I'm ready for my chance at a new life. The way my health is now is not living. It won't be easy for my family to re-locate, but it can be done. I've had my evaluation at the transplant center in Alabama which is in drivable distance from my home, but hey, if the average wait is 6 mo. to 1 yr. or longer, I may not make it till then. I think I'll take door number 2. As of now I'm just waiting to find out just when my chariot will arrive..............

Life As I Knew It

I thought I might need to put an update of what is going on with me, since I'm the one that created this blog for friends and family. :) I've just been reflecting on my life and wondering how did I get here? I don't mean in the hospital on Iv's, I mean for my CF lungs to be so bad that I am on a list for a double lung transplant. When I was in my 20's I used to always have the mantra "CF won't kill me, it will just aggravate me the rest of my life". I also said I never wanted to get a transplant. Back then I was working, spending time with friends and family, shopping, just living life. Now I am just existing. It seems like so long ago. It makes the decision to have a transplant much easier when you get to the point that your everyday life has come to a halt. Some of the things I miss is being able to visit friends and family. To be able to get out of my house is a treat in itself these days, but I don't have the energy most days. I save outings for doctor appointments. I miss shopping, even grocery shopping. I remember when I COULD grocery shop I thought I hated it. Now I long to have those days back. To be able to "run to mom's house". Although I never actually ran any step of it, I could jump in my car and go without worrying about becoming too tired from having to sit down many times, in the process of getting dressed, to catch my breath back even though I was wearing oxygen.

There are a lot of things I miss and I believe I will be able to do again. I may receive a call for lungs today and it may be a year from today and it may never come. No matter how this journey ends, I will have no regrets.............

I'm Finally Listed For Transplant!

After four months of testing , weight gain issues, waiting for insurance approval, and being multi-resistant to antibiotics, the transplant team finally decided everything is in place for me to be placed on the transplant list. There was some confusion among family members so some of our family friends have thought I have been listed for transplant since I started the evaluation process back in December. I was never on the list until yesterday. There always seem to be some little problem holding me back. Not anymore! I am on the list! To all of my friends and family reading this do not misunderstand again, I am listed for lungs!!! Thank you all for your thoughts, prayers, and offers to help any way you can. This is only the beginning so please keep the prayers coming. I Love You All!