Life to the Fullest-RIP Emily

I know many of you were following the recent journey of Emily Haager (better known for her blog, "Life to the Fullest." She went home to the Lord yesterday, as she lost her battle with CF. Just from reading her blog, and commenting with her back and forth, and reading the daily updates from her family, I know she was a wonderful person, and truly lived life to the fullest. I was always amazed at how healthy she was and with her love of surfing! This was such an unexpected journey Emily's body went on....and no-one expected the outcome. This just reconfirms how CF can take unexpected and sudden turns in life. I felt a little more connection to Emily, as I had my transplant at USC. USC was her CF center and where she had spent the last few months battling constant infections and other complications. I know the team at USC did everything they could and truly cared and loved Emily.

This was the post on the CarePages USC site from her family earlier yesterday:

"Today Emily peacefully went to a place without CF, a place where she can run, surf and breathe without worry. She lived her life exuding love and grace, impacting everyone who ever met her and showing the power of the knowledge of the resurrection of Christ in our lives. We already miss her and are so grateful for the support of everyone who knew Emily and loved her as much as she loved everyone else. We will post with more information at a later time with information about the memorial."

Please keep her family in your prayers during this difficult time. I know she is now in an eternal place with God, and with a pure body, free of CF.

Recap: About Me Part IV-Final Post

Here is the About Me Part IV Recap and final post!

It was Sunday night before the transplant. I was really sick, and didn't know much of what was going on around me. I remember my Dad and brother coming up to see me that night, but that was it. I don't remember anything from that point forward. Evidently, the decision was made to precede with the living donor transplant. Although my parents claim they told me about it, I have no memory of that and seriously had no idea I was about to be transplanted. I think this was another blessing from God, as I didn't have to worry or experience anxiety like most everyone else would before a major surgery like this. God held my hand through this and took all the pain away. The doctors "gave" me just a few days to live, so in order to save my life, this is what had to be done. On Monday, things kept getting worse, and my CF doctor decided that I needed to go ahead and be put on the ventilator. The transplant was scheduled for Wednesday morning at the University of Southern California in Los Angeles. I would fly by MedJet Tuesday morning along with my Mom and my other donor. My Dad would fly out there with our back-up donor, and my donor's brother, would fly out as well.

On Monday, my mom and my other donor had to undergo numerous tests at UAB, so a nurse and close friend stayed with me Monday. My CF doctor came in to discuss putting me on the ventilator and told me that about 50% of CF patients who go on the ventilator are not able to come back off of it. My response to that (as I was told...remember I have no recollection of this)was "That means that 50% DO come off of it, right?). I held my CF Dr's hand as they took me down to ICU and prepared me for the ventilator. My Dr. let me use his cell phone (or someones..not sure who's it was) to call my Mom, who was at UAB at this time. My Dad was preparing for the trip to California (there was a lot that needed to be arranged). I called my Mom and told her "Bye" and that I would see her soon with my new lungs. My Mom said she could hardly hold herself up at that time, being away from me, and knowing that there was a pretty good chance of me not making it through the night.

Tuesday morning came along, and the doctors called my parents early that morning. The plan was for everyone to meet at the airport, but plans changed. They didn't think I was going to be stable enough to transport. My CO2 level had already risen to about 4 times normal and things didn't look good. My Dad told me the weather was horrible that morning too. My Dad called one of our friends, who is also my parents Sunday school teacher. My Dad told him to just pray, pray. This guy, when he got off the phone, called everyone he could and told them to pray. Within 10 minutes of of my Dad making that phone call, by the grace of God, things began to stabilize enough and my Dad said that I had never looked so peaceful as I did that morning. At that moment, he knew everything would be ok.

Upon arrival at USC, I was immediately sent to the ICU. Mom and my other donor had to do some more tests to prepare for the next morning. Shortly after arrival at USC, I began to deteriorate and one of the Transplant Nurse Coordinators tracked down my Mom and told her that the only way I was going to live until morning, was to be placed on ECHMO, which is a heart-lung bypass machine. This machine performed every bodily function for me. At this time, my CO2 level was 5 times normal (211). A person with this high of a CO2 level does not live. A normal CO2 level is between 35 and 40. God helped me hold on until the next morning, February 25th, 2004, and the transplant was a huge success. I was told my lungs crumbled into pieces as they were removed from my body. The surgery definitely had it's worries and concerns. Imagine from my Dad's point of view: his wife, daughter, and best friend all in surgery at the same time, and are running the risk of loosing their lives as well because of the risky surgery. But again, by the Grace of God, everything went smoothly. I made it through the surgery with "flying colors" but I wasn't out of the woods yet. The transplant team expected me to have brain damage, kidney damage, etc., because of the record CO2 level and being placed on ECHMO. Once again, God had a plan for me, and I didn't incur any of those complications.

The recovery process at USC was the most intense and painful experience, both mentally and physically. I stayed on the ventilator for about 4 more days after surgery. As soon as they took the breathing tube out, I realized I could BREATHE...one of the most awesome feelings EVER for a CF patient. Because I was so sick and weak prior to transplant, and with the addition of paralytic drugs, I was completely paralyzed afterwards. I couldn't move any part of my body by myself. This was the most frustrating thing, as I depended on everyone to do everything for me. My arms were so swollen and filled with fluid, they were too heavy for me to lift them up on my own (same goes for the feet/legs). About 2 weeks after transplant, I began to experience stomach issues. I ended up having an intestinal blockage, which required immediate surgery. This was performed about 1 month after the transplant, and in my opinion, was some of the worst pain ever experienced, even more than the transplant.

Because I was paralyzed, I had to re-learn how to walk again (yes..not just strength but even the technique of walking). It was 6 months later (in August) that I was actually able to walk on my own, without the help of a walker or wheelchair. It wasn't until October of that year that I began to drive again. It also took a long time before I could feed or bathe myself. Because of the lengthy and painful recovery process it was hard for me to realize I was improving. But I did, each and every day. We had millions of people praying for us, and an awesome team of surgeons, doctors, physical therapists, etc. at USC. I didn't think it was possible for me to walk again. But then again, God proved me wrong.

I spent 3 months in California, before returning home to Birmingham. I missed every one at home so so much, especially my brother. It was a truly hard experience but I wouldn't trade it for anything. And if you don't call this a miracle from God, then I'm not sure how you explain it. I truly am a miracle from God and are alive today to share this with others and continue to glorify him in everything I do. As of right now, I was the sickest patient USC has ever transplanted, and had a record CO2 level that anyone at USC, Children's and UAB had ever seen.

Currently, I'm doing pretty well. I have had my share of post-transplant complications in addition to several other things. But transplant complications are so much different that what CF patients experience, and in my opinion, are far easier to deal with.

5 years today!!!

Today, February 25th, I am celebrating God's gift given to me 5 years ago: my transplant! I'm so blessed to even be alive and are so grateful for my mom and family friend-Jeff for sacrificing their life to save mine! I'm not going to go into much detail about the transplant...you can read my previous post or click on the "About Me" label to read more about my story and transplant. But just briefly....my transplant journey was extremely rough.....the recovery was unimaginably hard. I never thought I would walk again! I had to have major stomach surgery 1 month after the transplant. But God knew what he was doing, and the whole process has brought me closer to him and taught me so much about life! God was with me the whole way, and obviously had plans for me! He allowed me to live to experience his miracles, mercy, power, love, grace....etc, etc.

Every now and then my Mom and I talk about this time 5 years ago. I like to remember things, and I learn new stuff everyday. I learn of new people that prayed for me during that time....which was so incredibly amazing! It was the prayers and God's mercy that allowed me to live that day! Being in California was extremely hard for me and my family. I had an aunt and uncle that flew out to help for about 1 week, but that was the only family that was able to fly out. I didn't see my brother for 3 months...that was probably the hardest thing for me! My Dad stayed with us through the 1st two weeks, but then had to return home to care for my brother and also to continue to work and support our family! He came out one other time to give my Mom a break to go home, but that was it. It was definitely hard being away from him too...and I can't even imagine what my Mom went through, emotionally! There were so many little miracles performed during my recovery time in California (such as Vet's working for my Dad for free, donations, people buying plane tickets for us so my Dad could travel back and forth, free car rental and so much more). Too many to count...and some you don't even realize were miracles until later on in life!

Tuesday morning before I was scheduled to fly to California, my parents were told I was too unstable to make the trip, and they should prepare for the worst. I can't even imagine what went through their minds. I asked my Mom if she was every concerned or worried that I was going to die. She said yes, but knew God had a plan! The neat thing about the whole process, is that God gave me and my body an ultimate peace. He took me home for these few days. Upon stabilizing before transport to California, my Dad said that I had a peace and calmness about myself, that couldn't be explained. He said it was clearly God working his miracle!!

I've had my ups and downs post-transplant. And there are times when I get frustrated and think things aren't fair....However, because God gave me this precious gift 5 years ago, I can't complain! I'm just thankful to be here on Earth...and are so eager to please my Lord and Saviour!!

I'm going to post some pictures throughout this week of my transplant journey in California!

I leave this post with this quote from my Dad that the Birmingham News used in one of its articles about me:
(from reporter): Buddy Ballard (my Dad) said he will never forget sitting in a hospital waiting room while his daughter, wife, and best friend underwent surgery at the same time. (directly from my Dad): "You just pray that everything is going to go fine. You just constantly pray. I had a pretty good peace about it that morning. I had this feeling that everything was going to come through. I'm not saying there wasn't a doubt in my mind; those five hours were scary. We just witnessed so many miracles."

"Thanks be to God for his indescribable gift"! 2 Corinthians 9:15

Living Donor Lung Transplant?

Lobar lung transplantation is becoming an alternative for those patients who are too critically ill to survive the waiting list for cadaveric donors. The donors are friends or family members of the patient. There are two donors, each donating a lobe to the recipient. Donor lobectomies for living-related lobar transplantation require a thorough evaluation of potential donors, as well as modification of standard lobectomy and pulmonary preservation techniques.

Lobar lung transplantation was pioneered by Dr. Starnes at USC University Hospital and provides an alternative therapy for severely ill patients who are unlikely to survive the waiting that is often required for cadaveric organs to be available. Dr. Starnes was the first in the world to perform a living-related double lobar lung transplant on a patient with cystic fibrosis. Strict criteria must be met before a patient can qualify for these living related procedures.

The first step in becoming a donor is to determine the blood type and lung function capacity by spirometry in the Pulmonary Function Laboratory. There will be numerous diagnostic and blood tests performed. The results of the tests will determine donor suitability. The lower lobe from each donor will be taken and placed into the recipient to take the place of their diseased lungs.
After appropriate donors are identified, one is selected for right lower lobectomy and the other for left lower lobectomy. In our experience, the donors do well after surgery. They are up walking 24-48 hours post operatively and usually are discharged in 1-2 weeks. The long term effects for the donors are minimal to none.

The transplantation procedure is as follows:

Figure 1. Dissection and division of the pulmonary artery for donor right lower lobectomy.

Figure 2. Dissection of the right inferior pulmonary vein so that a vascular clamp can be placed on the intrapericardial left atrium.

Figure 3. Dissection and division of the bronchus to the right lower lobe.

Figure 4. Dissection and division of the pulmonary artery for donor left lower lobectomy.

Figure 5. Dissection and division of the bronchus to the left lower lobe.

Dr. Starnes at USC performed my transplant. My mom donated her right lower lobe, and a family friend donated his left lower lobe. USC is a small hospital (extremly small compared to our UAB), but had an excellent and very well known transplant team. Since the UNOS guidelines changed regarding how patients are listed for transplant, there have not been any more Living Donor-lung transplants (to my knowledge--Please correct me if I'm wrong) since 2004. USC did its final 3 within 1 1/2 months of each other. One of those being me (the 1st), then a young CF woman exactly 2 weeks after, and the third, a young married CF guy. Because our transplants were performed so close together, and since I was in the hospital for 2 1/2 months, our families grew close, and me and the other girl became good friends. They both live in California.

About Me...Part IV and Final Post

It was Sunday night before the transplant. I was really sick, and didn't know much of what was going on around me. I remember my Dad and brother coming up to see me that night, but that was it. I don't remember anything from that point forward. Evidently, the decision was made to precede with the living donor transplant. Although my parents claim they told me about it, I have no memory of that and seriously had no idea I was about to be transplanted. I think this was another blessing from God, as I didn't have to worry or experience anxiety like most everyone would before a major surgery like this. God held my hand through this and took all the pain away. The doctors "gave" me just a few days to live, so in order to save my life, this is what had to be done. On Monday, things kept getting worse, and my CF doctor decided that I needed to go ahead and be put on the ventilator. The transplant was scheduled for Wednesday morning at the University of Southern California in Los Angeles. I would fly by MedJet Tuesday morning along with my Mom and my other donor. My Dad would fly out there with our back-up donor, and my donor's brother, would fly out as well.

On Monday, my mom and my other donor had to undergo numerous tests at UAB, so a nurse and close friend stayed with me Monday. My CF doctor came in to discuss putting me on the ventilator and told me that about 50% of CF patients who go on the ventilator are not able to come back off of it. My response to that (as I was told...remember I have no recollection of this)was "That means that 50% DO come off of it, right?). I held my CF Dr's hand as they took me down to ICU and prepared me for the ventilator. My Dr. let me use his cell phone (or someones..not sure who's it was) to call my Mom, who was at UAB at this time. My Dad was preparing for the trip to California (there was a lot that needed to be arranged). I called my Mom and told her "Bye" and that I would see her soon with my new lungs. My Mom said she could hardly hold herself up at that time, being away from me, and knowing that there was a pretty good chance of me not making it through the night.

Tuesday morning came along, and the doctors called my parents early that morning. The plan was for everyone to meet at the airport, but plans changed. They didn't think I was going to be stable enough to transport. My CO2 level had already risen to about 4 times normal and things didn't look good. By the grace of God, things began to stabilize enough and my Dad said that I had never looked so peaceful as I did that morning. At that moment, he knew everything would be ok.

Upon arrival at USC, I was immediately sent to the ICU. Mom and my other donor had to do some more tests to prepare for the next morning. Shortly after arrival at USC, I began to deteriorate and one of the Transplant Nurse Coordinators tracked down my Mom and told her that the only way I was going to live until morning, was to be placed on ECHMO, which is a heart-lung bypass machine. This machine performed every bodily function for me. At this time, my CO2 level was 5 times normal (211). A person with this high of a CO2 level does not live. God helped me hold on until the next morning, February 25th, 2004, and the transplant was a huge success. I was told my lungs crumbled into pieces as they were removed from my body. The surgery definitely had it's worries and concerns. Imagine from my Dad's point of view: his wife, daughter, and best friend all in surgery at the same time, and are running the risk of loosing their lives as well because of the risky surgery. But again, by the Grace of God, everything went smoothly. I made it through the surgery with "flying colors" but I wasn't out of the woods yet. The transplant team expected me to have brain damage, kidney damage, etc., because of the record CO2 level and being placed on ECHMO. Once again, God had a plan for me, and I didn't incur any of those complications.

The recovery process at USC was the most intense and painful experience, both mentally and physically. I stayed on the ventilator for about 4 more days after surgery. As soon as they took the breathing tube out, I realized I could BREATHE...one of the most awesome feelings EVER for a CF patient. Because I was so sick and weak prior to transplant, and with the addition of paralytic drugs, I was completely paralyzed afterwards. I couldn't move any part of my body by myself. This was the most frustrating thing, as I depended on everyone to do everything for me. My arms were so swollen and filled with fluid, they were too heavy for me to lift them up on my own (same goes for the feet/legs). About 2 weeks after transplant, I began to experience stomach issues. I ended up having an intestinal blockage, which required immediate surgery. This was performed about 1 month after the transplant, and in my opinion, was some of the worst pain ever experienced, even more than the transplant.

Because I was paralyzed, I had to re-learn how to walk again (yes..not just strength but even the technique of walking). It took a long time before I could feed or bathe myself. Because of the lengthy and painful recovery process it was hard for me to realize I was improving. But I did, each and every day. We had millions of people praying for us, and an awesome team of surgeons, doctors, physical therapists, etc. at USC. I didn't think it was possible for me to walk again. But then again, God proved me wrong.

I spent 3 months in California, before returning home to Birmingham. I missed every one at home so so much, especially my brother. It was a truly hard experience but I wouldn't trade it for anything. And if you don't call this a miracle from God, then I'm not sure how you explain it. I truly am a miracle from God and are alive today to share this with others and continue to glorify him in everything I do. As of right now, I was the sickest patient USC has ever transplanted, and had a record CO2 level that anyone at USC, Children's and UAB had ever seen.

Currently, I'm doing pretty well. I have had my share of post-transplant complications in addition to several other things. But transplant complications are so much different that what CF patients experience, and in my opinion, are far easier to deal with. I will post about some of those issues with the next day or so.