2nd Post Op Clinic Appt.

What a day! It started with going to clinic at 10:00 this morning and getting labwork, xray, and pft's. This is standard procedure. Afterwards, I went to the Center for Living for my rehab session from 12:30 till 3:30. Finally, I had to go back to the clinic at 4:00 to see the doctor. I can honestly say, I am tired, but I could tell today at rehab that I am getting stronger. I was able to get up from the floor exercises without the aide of a chair, which is a great accomplishment. So far so good with the transplant. It is so great to be able to breathe!

To The Mall

Yesterday me and Jess went to the mall and I found out just how out of shape I am. I was breathing fine. The mask I had on was annoying, but hey, no choice there. We weren't gone long, but the simple act of walking tired me out. It was my legs that couldn't keep up, lol. The physical therapists say that is the number one complaint after surgery is weakness in the legs. It is getting to be frustrating. I haven't fallen down anymore and I can step up and down from a curb slowly and carefully. I've got to remember to take it one day at a time and be patient.
It felt good to get out even for a little while.

Weekend Thoughts

I have to say I am truly blessed. I feel better and better everyday. I'm looking forward to getting these staples out and I'm hoping that happens at my clinic appt. this week. My legs are getting a little stronger thanks to rehab. I had a weekend session yesterday to catch up from missing a week after surgery. Most of the time it's only Mon. thru Fri. I'm glad to have Sunday off. Jess, my step-daughter, my daughter!, is here visiting for the week. I think we'll go to the mall this afternoon. Don't worry, I'll wear a mask and I'm not shopping all over the mall, just a select few stores I want to go to. I don't want to tire myself out trudging through a mall, lol.
It's still amazing to me how I get up each morning now and I don't cough, I don't get short of breath, and I don't have to do a nebulizer treatment before starting the day. I never knew breathing would be so awesome. That may sound ridiculous to some, but for those like me who struggled to breathe, being able to breathe is like WOW! I can walk and talk at the same time now without stopping to catch my breath. I can get dressed, shower, and fix my hair without having to stop to catch my breath. God has truly blessed me and I am thankful everyday.

Pulmo Rehab

It was back to the grindstone today. I went to be re-evaluated to get back into the program. It is mandatory that after transplant, all patients have to complete 23 sessions of pulmo rehab before being discharged by the doctor. It felt good seeing my pulmo friends again. Some were out due to their transplant, woo hoo! yay for them! They'll be back in the program soon. I am just glad to be working on getting my strength back. It's crazy how surgery can make you so weak!

1st Clinic Appt. Post-Op

Yesterday I had my first clinic appointment since surgery. It took most of the day, but I had to get labwork, xray, pfts, and see the doctor. I had many questions and my doctor patiently answered each one. It felt strange not knowing what was going on with my body and having to ask "is this normal". I'm so used to knowing that I just tell the doctor what I need. It is a whole new world when it comes to my health, but apparently I'm doing everything right, so far.

Swallow Test Follow Up

It isn't uncommon for people who have a lung transplant to have trouble swallowing after surgery. Partially due to the tube down the throat for many hours along with the new lungs gaining strength afterward. This is the way I understand it anyway, so if I'm wrong forgive me. Anyway, I was one the more fortunate people because I only had to have a feeding tube up my nose for a week and some people have to go home with a feeding tube in their tummy. While wearing a feeding tube, you aren't able to eat or drink anything by mouth. Can you say cotton mouth? While I was in the hospital they did a swallow test to see if the food and drink was being ingested into my stomach and not into my new lungs, without my knowledge. See when the new lungs are attached, the nerve below the cough reflex is cut and you won't know that food or drink is going into your lungs. I don't understand it either, but it will lead to rejection and I certainly didn't want that to happen. I semi-passed the test meaning I was able to drink nectar thick liquid and eat chopped/soft foods without it getting close to my airway. This has gone on since I left the hospital, but it finished today! I went for my followup swallow test and I passed, meaning I could swallow anything, thick, thin, etc. without any problem! Oh Praise The Lord! I can eat good food again! I don't think my stomach could handle many more nectar thick liquids. There is no way to make a drink good with thickener. When we left, me and daddy went to Bojangles and got chicken for lunch. Then to chik-fil-a for vanilla milkshakes, yum! Later this afternoon we snacked on a watermelon that was brought to me all the way from my home state. Great Food! I'm stuffed.

Changes in Time

I have these brand new lungs and can breathe incredibly well; I hope to get caught up on my rest this weekend. The week coming and all following weeks will be busy busy. It'll be back to rehab next week, in addition to clinic visits. I'll be doing all of that while juggling an iv medicine regimen. It's a bit overwhelming, but I'll make it through. It was a bit of a bummer when I got bombarded with iv meds at the hotel, but they won't last forever. I am most looking forward to getting my strength back and not hurting so much anymore. One day at a time, I know, I tell myself that everyday. Today we want things NOW and this isn't something that is going to happen overnight. To get up in the mornings and not have to be a slave to the nebulizer meds to open up my airways is a wonderful feeling. I don't cough anymore except when I make myself. I'm still making sure I clear the airways so no bugs will settle into my new breathers. It's going to be a whole new life once I get healed up and able to go back home.
I have to thank my donor and donor's family. I can't imagine the hard decisions that have to be made at a time of loss. Please consider being an organ donor. You could be someone's miracle. God Is Great!

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!

Timeline of events

I thought I would put a timeline of how things went on the day of Pam's surgery. I feel funny calling her Pam because a lot of the close family call her Wilbur, and others call her Lu or Lu-Lu. So you'll know who I mean if I call her anything other than Pam. So on July 1st 2010 she got the call for her double lung transplant. She was already in the hospital at Duke for a tune-up as she calls it. She sent me a message that day and told me she got the call. I couldn't wait to get off work to try to talk to her before surgery. I was so excited when I found out she wasn't in surgery yet. We chat all the time on Blackberry messenger, but I wanted to hear her voice. Honestly not knowing if it would be the last time, even though I couldn't bring myself to say those words at that time. So we talked for about five minutes, and I was peppering her with questions about how she felt, what was going on, etc. She was so calm. She said she was nervous earlier but had gotten over it. We both figured her nerves would kick back in as she was being wheeled into surgery. I told her we'd be in touch with Philip and would see her soon because we had already planned a trip up there that weekend. I told her I loved her and she said she loved us too and to "Kiss her baby for her." She always says that about our son Joey.

So here's the time and text messages that I received from Philip. I forwarded them on to a list of people and put an update on Facebook each time.

July 1st
3:15pm-Checking in for surgery

4:16pm- Took her back to surgery

6:09pm- Philip called me. He said he'd just talked to the dr. Her heart stopped while they were trying to put her under anesthesia. For a moment I thought he was calling to tell me my sister had died. He caught his breath and said that they got her back and the dr. was trying to decide whether or not to even continue with the surgery. At this point they hadn't even made an incision. They also said they weren't sure how her brain would be affected from coding. I had to call our Mama and tell her. That was hard. She held it together while we talked, but she later admitted that she fell apart after we got off the phone.

8:11pm-Everything going as expected

11:36pm-She is out of surgery and doing good. We will know more when she wakes up.

July 2nd
3:29am-I just got to go back and see Lu. She looked good and the nurse said all vitals and everything looked good!! Please keep praying!

3:39am-You can call ICU and check on her. Her nurse is Katie tonight till about 6am.

We talked some in between these times. She was doing good. So far so good. At some point they hooked her to a machine that checks brain activity and they said it looked just fine. What a huge relief!! I had already convinced myself that would be fine. It's not like she wasn't receiving oxygen when she coded.

6:47pm-Lu is doing real good! She is awake, breathing on her own, with no oxygen just room air! They are going to try and take her breathing tube out tonight.

7:59pm-Ya'll aren't going to believe how good she looks!

July 3rd
12:28am- Breathing tube is OUT!!!!!

12:46am- I thank you all for all your thoughts and prayers!!! I really believe that they helped her get this far!! They sure helped me get thru it so far! THANK YALL!

12:19pm- Lu is sitting up in a chair and walking!!

2:06pm-Taking out chest tubes and moving out of ICU!!

7:42pm-She is gonna stay in icu one more nite

That's the last text I got because we had made it to NC by this time. We checked into our hotel Saturday night. I was so anxious to get to the hospital Sunday morning!!

Out of surgery

I just found out that she's out of surgery and doing good. We'll know more when she wakes up.

It's a go!! Update from Melissa

She found out this morning that they had a set of lungs that were a possible match. They told her this afternoon that it's a go!! I'm sure those weren't their exact words, but you get the drift. She finally went in to surgery around 4:15 our time. She is still in surgery as I write this. Philip called me with the first update and said that her heart stopped beating while they were putting her under anesthesia. He didn't say anything else for a second so my mind starts going crazy thinking the worst. He then tells me that they were able to revive her and were trying to decide whether or not to proceed with the surgery. The doctor said this was not the way they like to start a surgery, and also that they were not sure if there would be any long term effects on her brain. They did ultimately decide to go on with her surgery. Our parents are on their way now. Jake and I will be leaving on Saturday. I can't wait to see her! So for now we are all praying harder than we've prayed in a while and pleading for God to have his hands in this surgery and to heal her in the way that only he can. Philip is sending text updates to my phone and I'm hoping to get another one any minute now. It's going to be a long night, but God's grace will see us through it.