Today, I want to talk about the weeks before my evaluation. The logistics or timeline, if you will, what steps I took to prepare and most importantly, how it felt.
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How long did it take?
For me, the time between making the decision to get an evaluation and the actual evaluation appointment was just over 3 months. I will say though... each person, center and situation is different so in full disclosure, this is only my personal experience and should not be considered an absolute standard. Some centers could be a shorter wait, some centers could be longer. There's plenty of factors that can go into this too including physical condition, insurance, and whether your hospital is a transplant center or if you have to travel to a new center to be evaluated.
I am seen at a military hospital that does have an accredited CF Center, but it is not a transplant center. Instead, I was referred to Duke University Medical Center in Durham, North Carolina. Duke is the closest transplant center to me, located about 3.5 hours away from me. There is one hospital, Inova Fairfax Hospital, that is in Northern Virginia and also about 3.5 hours away, but both my doctor and I opted to go to Duke because it is considered one of the best lung transplant programs in the nation.
I had always heard good things about Duke and I know several individuals who have received their lung transplant there, but I began researching them more heavily once I knew I was going myself. I quickly learned why they were considered so good. At Duke, the average wait time for a lung transplant is about 14 days. The national average is four months. One of the reasons for this is their aggressive and innovative organ-recovery efforts, as well as a very intense pre-transplant program that centers around physical therapy and education. I'll get more in-depth on both of these in my next blog, when I talk about the actual evaluation.
I also learned a few really interesting facts about their transplant program as a whole including:
- Duke has been a pioneer in organ transplantation for over 50 years as the were one of the first hospitals in the country to establish a kidney transplant program, as early as 1965.
- The head of their hand transplant program participated in the first two hand transplants performed in the U.S. in 1999 and 2001. Since then, less than 30 hands transplant have ever been performed in the US and less than 100 in the entire world!
- Duke's Cancer Center was the first hospital in the country to establish an outpatient bone marrow transplant program.
So all of that to say... I'm extremely fortunate to be so close to Duke University and felt very good about going there to begin this process. My doctor had to submit some paperwork to Duke's transplant program, as well as a referral to my insurance and both entities had to approve me before we could schedule the appointment. My doctor and I made the decision for me an evaluation in early February. By the time all the paperwork and approvals were finished, it was the first week of April. I got a call from the transplant coordinator at Duke that everything had gone through and it was time to schedule the evaluation. The earliest appointment they had was May 8-9, just over three months after my doctor and I had discussed and agreed to move forward with the evaluation.
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What did I do to prepare?
In those three months, I definitely spent some time getting ready. Like I said before, I researched Duke but I also researched lung transplants in general so I could begin to understand what I was getting myself into. The amount of information that can be found on the internet is limitless and at times, can be overwhelming. I tried to stick to what I knew would be reputable and relevant. For example, individuals with cystic fibrosis have to have a double lung transplant, not a single lung transplant (this is because if they got a single lung, the existing bacteria in their old lung would infect their new, healthy lung), so there wasn't much reason to read about single lung transplants because I knew it didn't apply to me.
Growing up with a physician as my mom and primary caretaker, I have always be encouraged to actively participate in my healthcare and my mom always made sure that I really understood what was going on. She helped me to learn what all my medications and treatments were, but also why they were important. This has stayed with me, especially now as a young adult as I am primarily responsible for taking care of myself. I believe knowledge is power and I am a strong advocate for doing your own research and asking (a lot of) questions. Transplant was something I was not familiar with, so I wanted to be proactive in learning as much as possible prior to going to Duke, so that I could ask questions about the things that I didn't understand or had concerns over.
In addition to giving Google a run for its money, I also reached out to others through social media to learn and understand. I found a few private support groups on Facebook: one larger group of about 4,000 people was for for all lung transplant patients/caregivers, and then two smaller groups, a CF lung transplant and a Duke lung transplant group. I took some time to introduce myself to the others in these groups and I must say, I received some really warm messages in return. They offered their support and encouragement, as well as advice. Being in these groups, I could see the questions, concerns and discussions that other patients had. It helped me to 1) fill in some of the blanks or answer questions I had started forming about my transplant and 2) put a human touch on the whole situation. Reading about how a lung transplant works on a website and hearing from someone who's lived through it are two completely different sides of the story, and equally important.
Similar to the Facebook groups, I reached out to friends and acquaintances I had that have already been through the transplant process, several even at Duke themselves! Transplant is scary, so there's definitely a level of security you get from having someone you know, trust and care about as a role model.
Finally, once my evaluation was scheduled, Duke University sent me a packet in the mail. It included a couple forms that I had to fill out prior to my appointment, (a medical history and a psychological evaluation), basic information like maps of the hospital campus, my schedule (including check-in times and locations for each of the appointments) and hotel/lodging information. It also had a spiral bound book called Before Your Transplant. This book was about 40 pages and served as a comprehensive guide for all aspects of the Duke Lung Transplant Program. If you're interested, feel free to check out the online version here. But, basically, it included everything from the program and the team to the requirements for being listed, the evaluation process and the surgery itself. It also had a relocation guide and examples of the patient and caregiver contacts that Duke requires their patients sign.
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| Teddy was very excited to read with me, although I did have to help him with a few of the bigger words ;) |
Up until this point, all I knew and had learned was sort of.. abstract. It was just information and very surreal. But when I sat down and read this book, it really started to sink it just what was happening... I was getting a lung transplant. Normally, when I research things for my health, it's because I'm looking for something to improve my lungs. Now, I was looking at replacing them. A team of doctors would be literally taking a vital organ from inside my body out and putting a new one in. This wasn't just a new brand of enzymes or antibiotic. This was a life-changing, life-threatening surgery. I've experienced a lot of things in my journey with cystic fibrosis. But this was a totally different ball-game than anything I have ever known before.
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How am I doing?
Without a doubt, the biggest question I got asked during those three months was "How are you doing? or "Are you okay?". I mentioned in my last blog that the decision to get a lung transplant was pretty easy for me. I didn't cry or yell. I wasn't anxious or frustrated. I made a choice and I was okay with it.
Yeah, well... that didn't last long. I felt calm and comfortable with my decision, but the nerves and sadness set in pretty soon after. Within the first few days, I got in touch with each of my five siblings to tell them what was happening. When you have a chronic illness, it can sometimes be both physically and emotionally exhausting to keep people updated. When I have to go into the hospital, I usually try to let my siblings know by text and then once I get settled in, they call me to see how it's going. This wasn't a text conversation though. One by one, I spoke to them on the phone and I choked up each time. I explained what was going on and as soon as I said the words, "I need a transplant" out loud, I felt sick to my stomach.
After that, it got a little easier. I told other family and close friends, but I still wasn't very open about it. I wanted to wait until I had more information from Duke as to when I'd be going before I made anything public. I knew a lot of people would have questions and be worried. I also just needed time to process it.
I went through a lot of emotions in those three months. I was definitely scared and sad, even angry. But I think mostly, I just felt anxious. I'm the kind of person who thrives on having all the information, even if I don't need it. I was the girl who did extra credit assignments in school not because I needed the points, but because I wanted to learn. I felt anxious because I didn't have the answers this time. I didn't know what was going to happen. The uncertainty was paralyzing.
I knew I couldn't change anything until I just had the evaluation and got more information, so I tried not to think about it. But that didn't always work. At times, I had trouble focusing on work. Or I'd be in the middle of a conversation or errands and something would jog my memory, and then all of the sudden, the only thing I could think about was transplant. I had so many questions. Other times, I would get so stuck in my head trying to rationalize things, that I would work myself up into a panic.
Having anxiety is pretty common when it comes to chronic illness. I've certainly dealt with it plenty of times before. I've been in therapy and on medication before, but lately I just usually talked to my mom. She's my best friend. I trust and value her opinion more than anyone. She does a pretty good job of helping me calm down and focus. I also have a few friends that I can talk to and on a number of occasions, during my freak-out sessions, I blew up their phones with text messages of what I can only assume came off as exasperated ramblings before they responded with a simple "it's going to be okay." I'm a firm believer that sometimes, you just need to vent and get it all out there, no matter how ridiculous or irrational. It's like you have to literally get all those thoughts out of your head in order to find the clarity you need to move forward.
I also had a lot of doubt. My doctor and I discussed that I was in a gray area for "needing" a transplant. As I learned more about how serious the process, surgery, and recovery were, I questioned if I was really there yet or if I should wait. The more I learned about how sick other people were when they had their transplant, the more I was convinced that I wasn't sick enough yet. A few times, I considered calling and cancelling the appointment, but ultimately I knew I needed to go. Even if I was pretty sure they would tell me I was too healthy, it would be really beneficial for me to get a chance to talk to the experts and get to know the program.
Once I got confirmation from Duke about when my appointment was, I made where I was with transplant journey public. I started a new public Facebook page to share updates from and I was taken back with the support I received. And that... that gave me hope. Knowing that I had so many people loving, encouraging and cheering for me. It made everything else sting a little less. All the sadness, angry, fear, anxiety and doubt seemed to fade because I had confidence, now matter how difficult things got, I wasn't going to be alone.
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