Updates on Chase
This is a 2007 photo of Chase with his sister's Casey and Tara.
The following photos were taken 12/19/09 just hours before Chase's 2nd lung transplant.
The following photos were taken in ICU 72 hours post transplant. Chase was on dialysis and VERY cold - this is a warm air blanket.
McGowen family thanks you for considering donating to the cost of care
A MESSASE FROM CHASE
November 16, 2009
My name is Chase McGowen. I am 19 years old and I
have Cystic Fibrosis. I received a double lung and liver transplant at Texas
Children's Hospital on January 5th, 2004. I am currently on the waiting
list for my second lung transplant.
I was always sick, with frequent hospital stays that sometimes lasted up to eight weeks. My life went from bad to worse in 2002. My lungs collapsed 14 times in 12 months and I spent more time in the hospital than at home. It was scary to be playing X-box with my friends one minute and then suddenly not be able to take a breath the next. Often when I arrived at the emergency room there was not enough time to put me to sleep in order to insert the chest tubes. I spent many days in ICU each time this happened. Once the anesthesiologist hugged my mom and told her he had never been so scared … they had lost me on the table. I was 12 years old and that was my life.
My mom and I moved to Houston in May 2003 to begin the lung transplant review and evaluation process. My total lung capacity was 12-15%, and I required constant oxygen. I had little to no energy and I knew I needed a lung transplant to survive. During the evaluation process the wonderful doctors at Texas Children’s Hospital realized not only did I need a lung transplant, I also needed a new liver. Cystic Fibrosis had wrecked havoc on both of these organs. There were only five pediatric patients worldwide and only 17 patients of any age in medical history to ever have this type of double organ transplant. After receiving special permission from Texas Children's Hospital Administrative Board I was accepted and placed on both the lung and liver transplant lists.
In the eight months we waited I was able to remain outpatient, with my mom taking care of the constant IV medications needed for me to stay healthy enough to be ready to receive my new organs. My Dad would bring my sisters from Austin to visit as much as possible. This was a very hard time for my entire family. I missed my Dad and sisters; I missed my house and my friends… I was scared I was not going to live. But that was a risk I was willing to take. I am glad I did.
I was able to return to my home in Austin four months after my transplants. It was the little things that so many people take for granted that made the biggest impact. You can’t imagine how wonderful it felt to be able to sleep in my own bed, to sleep an entire night without someone waking me up for IVs, drip feeds and breathing treatments. Not having to be tethered to O2 tanks and to be able to WALK - not have to be pushed in a wheelchair was priceless. All I ever wanted was to be “normal”. I finally got something close. I was able to exchange the pre-transplant 3-4 times daily breathing and therapy treatments for oral anti-rejection medication every 12 hours. There was no more need for nightly drip feeds because my body no longer required the 4000 calories. I was finally able to gain weight. I think I actually grew to my full potential… I am now 6’3”. It is amazing what a body can do with healthy organs.
I returned to public school my freshman year and only had to make trips to Houston for post-transplant follow up visits. Early in 2007 I began having some problems with my blood sugars. I was told this type of diabetes is not uncommon and is often related to Cystic Fibrosis and post transplant medications. I was on insulin for a couple of months but with diet and exercise I was able to control my blood sugars and stop the insulin injections. Life was amazing! To be able to go on church camping trips, football games, snorkeling, swimming and tubing, to get a job and to just be a “normal” kid who had to take medications twice a day was such a blessing. I attended both my junior and senior proms, and I graduated from McNeil in 2008.
My oldest sister Tara was at Texas A&M, and it had always been expected that we would all attend college. I talked with my parents and let them know that I really needed one semester off before I started. They were not happy but they agreed. I was working at Costco and loved my job. I enjoyed the spending money but most of all I liked being an adult. Unfortunately, in October 2008 it became rather obvious that I am allergic to Doxycycline. My liver really does not like it! I turned YELLOW ! I looked like an M&M. I was rushed to Texas Children’s Hospital and admitted for evaluation. After a liver biopsy and tons of tests, Dr. Karpen explained that the antibiotic had a very adverse effect on my liver. I was admitted again both in November and December and as Dr. Karpen expected, with time my liver healed. But my blood sugar was out of control. I had to begin using insulin again on a daily basis. It sounds like no big deal, but poking my finger numerous times a day and administering the insulin required to keep my blood sugar under control is a huge pain. I feel like a pin cushion. I also have to calculate all the carbohydrates at each meal and take insulin to cover their effect on my blood sugar. The good thing is that no foods are off limits. I can eat anything and EVERYTHING as long as I calculate and cover it with insulin.
After being discharged in January, we all thought I was going to be able to resume my life, my job, and enroll in college for the summer semester. Unfortunately, my lungs were not doing as well as my liver. Dr. Mallory said due to bronchiolitis obliterans we needed to discuss my decreasing lung functions. I just did not understand how I could be healthy and feeling so good and in an instant EVERYTHING was falling apart. Once again, I was that sick kid. It was overwhelming to come to the realization that I needed a second lung transplant. After several months, lots of test and continually decreasing lung functions it was obvious that if I wanted to live another lung transplant was my only option.
In April 2009, my mom and I moved back to Houston to begin the Lung Transplant review and evaluation process. I was accepted for re-transplant. This time for LUNGS only! Due to my constantly decreasing lung functions ,I was once again on oxygen around the clock and my body needed 6000+ calories a day just to survive. Not to gain weight … but just to pump my heart and to breathe. We tried everything and I was still losing weight. All of my doctors and surgeons were concerned. In order to provide the best possible transplant and recovery, I needed to gain weight and be nutritionally stable. I was admitted in early June to start TPN (total parenteral nutrition). This is an IV nutrition that provides additional calories and still allows me to eat. Everything was going GREAT… I had my transplant pager and we were set to be discharged on Monday. THEN MY WORLD COLLAPSED AROUND ME… I don’t even remember what happened. I have very little memory of the three weeks I spent in ICU or what sent me there. My family, doctors and nurses have filled in a lot of the blanks but some facts are better that I don’t remember. I know it was touch and go and that not only was I taken off the lung transplant list; it was very unclear whether I would live, much less recover enough to get back on the list. I think every specialist at TCH was called in at one point or another. I was intubated and on a ventilator, and it became obvious that I needed a tracheotomy. When I was finally stable enough to be moved, I was transferred to the Progressive Care Unit where I continued to be followed by the Critical Care Team.
I can’t begin to remember all the tests and procedures that were done in June, July, August and September. As the rest of my body healed it was obvious I still needed a lung transplant. My liver was stable but my kidneys had been damaged. After 111 days in the hospital I was finally released. We still did not have a clear cut plan of action. The question was how should the doctors proceed? Did I need a kidney and lung transplant? Do we do lung transplant and then dialysis and a possible family living donor kidney transplant if needed at a later date? Lung transplant only? QUESTIONS, QUESTIONS AND MORE QUESTIONS. The not knowing and the waiting are always the hardest parts.
I was discharged on September 29th and have now been at our Houston “Home away from Home” for almost two months. I have a tracheotomy and I am still on the ventilator 24/7 with constant oxygen and IV TPN. I have nurses here around the clock to help my mom with my care and to provide the needed assistance I medically require. It is VERY difficult to get up and down the stairs – this type of physical activity really wipes me out. I go to TCH at least once a week for lab work and clinic visits to monitor my kidney functions and anti-rejection medication levels. For the first several trips to the hospital, we tried to manage with just my mom and my nurse. That was really a disaster. I was stressed and my mom was a basket case and the nurse was exhausted. We tried an ambulance transport company, and we all decided it was easier to do it ourselves than to have their “help”. We agreed to try another company. What a difference they have made in our weekly TCH visits. Other than the stairs in the house they take care of everything else. I HATE having to ride on the stretcher with a face mask on to protect ME from germs. I do not like everyone staring at me but, I know I have no choice, and this particular Ambulance Transport Company helps make the trips as quick and as stress free as possible.
I do not leave the house except for the required trips to Texas Children’s Hospital. It is just too difficult.
My dad is here every weekend from Austin. He brings my sister Casey and our friend Amanda on a regular basis. My oldest sister Tara and her fiancé Garrett visit as often as they can. My grandparents, aunts, uncles and cousins are here in the Houston area, and they come by as often as possible to give us some additional distractions. My friends also try to visit on the weekends when they can work a trip to Houston into their busy college schedules.
Last week Wednesday morning I was officially relisted, for LUNGS ONLY. But just my luck, by Wednesday afternoon I was running fever and feeling awful and had to be “inactivated”. I returned for a clinic visit this morning and was once again placed on the active lung transplant waiting list.
I have no idea what’s in store for me. But, I know this is not the way I want to live my life! I want to get back to MY NORMAL. I want to drive my car, return to work and enroll in college. I want to attend my sister’s wedding and I want to have the “luxury” to make plans for my future. Most people take these privileges for granted… not me!
This has once again been an ordeal in more ways that anyone can imagine. There are only so many emotions you can put on paper. Life is never going to be "normal" for my family. We will continue to worry if I will survive long enough for re-transplant? Will I survive and recover from the surgery? Rejection and the constant fear my lungs will simply stop working are all questions we have in our heads but often don’t speak of. Normal families don’t ever have to deal with these problems. We also must deal with medical insurance and the cost for medical care. All of this takes a toll on everyone involved.
God has blessed my family beyond belief. I am just not ready to give up. I want more!! More days, more nights, more time with my friends and family, MORE of EVERYTHING!!! I pray that God will continue to work miracles through me. My mom always says she prays that God is not finished with me… I know I am not finished. Not by a long shot!
More information is available on the Caring Bridge website.
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