I wanted to write this series for a few reasons. When I first publicly announced that I was being evaluated for transplant, I had an incredible outpouring of love and kindness. I started a public Facebook page, as a way to continue being an advocate and spread awareness about cystic fibrosis, but also to share my new transplant journey. I had over 500 likes in just two weeks and had dozens, if not hundreds of comments and messages. Family, friends and even strangers from all walks of life were getting in touch with me to say they were thinking of me and they loved me. I had so many people supporting me as I started this new process. Sadly, I haven't had a chance to update any of them on how it went, because immediately following my evaluation, I ended up getting a cold and was sick for several weeks... cystic fibrosis always has impeccable timing like that. I have chatted with family and some friends when I've seen them recently, but the majority of my friends don't know what happened, so that's why I'm writing now (p.s. here's a shameless plug to say please like my Facebook page, High Heels & Hospital Bills if you haven't yet :D ).The second reason for this series is because in preparing for my transplant evaluation, I had questions.
I wanted to know what it was going to be like. What tests they would perform, what feelings I should expect, what indicators they would be looking for, what the timeline would be. I researched, read blogs and asked a lot of people who I know had already experienced it, but truthfully I couldn't find a solid example of what the actual evaluation looked like. I wanted to know what exactly, step by step, those two days were going to be. Maybe I wasn't asking the right questions or wasn't looking in the right place. Or maybe the evaluation varies by person and by center... who knows. But I realized that for as much awareness and information as we have for cystic fibrosis, that was something that was missing. And something that I could do to help the next person that was in my position.
Finally, I want to write this blog because when it comes to cystic fibrosis, transplant is a very complex and misunderstood phenomena. Most people don't have the slightest idea why or how it happens or even what it is... Not that cystic fibrosis is exactly a well-understood entity in and of itself. Ha. But really... even me, a 25 year old with cystic fibrosis who has known for years that I would eventually need a transplant, didn't really get it. I had so many questions from family and friends about transplant, which I love. I am and will always be open to talking about and answering questions about my cf or my transplant, no matter who is asking. But I know that most people are probably scared to ask. They don't want to be rude or insensitive. So for as many people that have asked me "does your donor have to be dead or could you get a lung from someone who is alive like they do kidneys?," there's a hundred more wondering the same thing but don't know how to ask. So, here I am, doing what I can to answer the hard questions and sharing what I've learned myself so that others can understand too.
So with that... welcome to My Steps Towards Transplant.
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The Decision to Evaluate
If we're going to get technical about it, my evaluation started at 7:50am on Monday, May 8th. But like I mentioned above, my steps towards transplant really started much earlier.
I couldn't tell you exactly how I old I was when I learned what a lung transplant was or that it was common for cystic fibrosis patients. But I can tell you the exact day I realized it was a part of my future. I can you the exact moment, when I felt my stomach twist and my heart sink, because I was recognizing for the first time that this was something I would actually have to do one day.
It was December and I was 16, almost 17 years old. I had just gotten out of the hospital for a tune up and was at clinic for a follow up appointment. I was having a really tough year, physically but more so emotionally. My admission was triggered by a decline in my PFTs and an almost 10lb weight loss, but it was also because I was suffering from depression and anxiety that led to a panic attack so severe that I ended up in the Emergency Room. I was struggling to keep up with my medicines and treatments because I just didn't want to be reminded I was sick anymore. I just wanted to be normal, I wanted to hang out with friends, play sports, eat too much junk food. At my appointment, I told my doctor this and at one point, I think I must have said "I just want to be a junior in high school who doesn't have to deal with this." My doctor, sitting in front of me, was quiet for a minute, and then calmly said, "Jillian, what can I do to help you? What can we do together? I can't take away your treatments but we have to find a way to make this work for you, because your life with cystic fibrosis is not going to get easier. It's going to get harder." Then he paused, looked me dead in the eye and said, "And I'm scared. I'm scared that if we can't figure this out soon, you're going to need a double lung transplant before you even graduate high school."
My entire world changed that day. I cried, a lot. But I didn't really talk about it. I'm honestly not even sure if I told my mom or not. I was scared. I think I wanted to forget we even talked, or maybe I didn't really believe him. In retrospect, my mind was probably cycling through all five stages of grief at 100mph an hour. But I think I mostly just didn't understand. I didn't know how long it took to get a transplant but I knew enough to know it wasn't a quick process. I knew it was December of my junior year, so that meant he thought I would need new lungs within 18 months. At the time, I equated needing a transplant with death, because I thought it was an absolute last resort and you only got it when you were literally weeks away from dying (also a point of misinformation but we will get there eventually). I remember thinking "There's no way I'm going to die in the next year and a half."
Fortunately, I was able to get to a much better place mentally and in turn, my physical health improved as well. Actually, after that appointment, I went a year and a half without being admitted to the hospital which is the longest I've ever gone since my first admission in 2007. I would never encourage a physician to use fear/transplant as a means to motivate their patients to be more compliant, but I'd be lying if I didn't say that's exactly what worked for me. My doctor wasn't trying to scare me, he was trying to be honest. But that honesty was what I needed to find myself again and keep fighting. I stabilized and the t-word wasn't uttered again.... until my senior year of college.
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| The face you make when it's senior year and the only shots you're taking are sugar-free hospital jello |
Again, fortunately for me, things got better and I ended up stabilizing. The lifestyle change from college to working full time was surprisingly easy and positive for me, and I know that Orkambi had a huge influence as well. In the 12 months following my graduation, I was only admitted to the hospital once. And it was technically for a drug allergy, not because I was sick. So, again, transplant was pushed to the back burner.
Fast forward another year and half and I'm about to turn 25 years old. I'm admitted to the hospital and my PFTs are down to 30%. What started as influenza turned into pneumonia and wasn't getting better. When I finally went to the hospital, I had been sick for over a month and a half. At my follow up appointment, I was feeling better but my doctor sat down with me and my mom and brought up transplant. He told us that he wanted me to go to Duke University for a transplant evaluation. He was very honest and explained that it wasn't a clear cut situation. I had some of the indicators that it was time, namely my PFTs that were consistently less than 35% and even lower when I was feeling sick. But in other areas, I was still doing well. I was working full time and while I did use supplemental oxygen at night, I was able to maintain my o2 during the day and during exercise without any trouble. He told me that he felt like I was in a gray area but that this wasn't his expertise. His job was to keep my lungs healthy, not replace them. And he just didn't know if my lungs had it in them to health on their own anymore. He wanted Duke to make that decision. And he wanted me to have the opportunity to learn and understand what transplant was, which is something he couldn't tell me but Duke could. The three of us chatted back and forth for a really long time. I asked some questions, he asked some questions, my mom asked some questions... we talked through it together. My doctor made it very clear that this was what he recommended, but ultimately it was my choice. I didn't have to get the evaluation.
Well, spoiler alert, I did choose to go to the evaluation... and it was a surprisingly easy choice. I think, because of the history I had over the course of the 8 year prior, I wasn't so shocked to hear him say it. I knew he was right. It was time to start considering it and time to start learning because even if I am too healthy right now, I have a progressive illness and I will get eventually get sicker and need a transplant.
I've heard others say that they had a really rough time when their doctor brought up transplant and I can totally understand that. It is terrifying. And even though I walked out of that doctors office that day in January without a single tear, the roughness came later. I'll get to that in part two of these series, but at that point, I felt calm. I'm glad I was able to make a well informed, collaborative and rational decision that day to move forward with my transplant. I think it gave me a very healthy foundation for what will probably be a very long and difficult period of my life.
Last night, I was talking to a friend about why people with chronic illness struggle to accept help from their loved ones. Her boyfriend, who happens to be one of my best friends, has cystic fibrosis just like me. She asked if I "feel comfortable" asking for/getting help from my family or friends. I laughed and said I don't think I'll ever feel comfortable. Because asking and receiving help, by definition, means accepting you need it. It means swallowing your pride and facing the fact that you can't be independent. I went on to add that I think independence is something we, as humans, need more than anything. The idea that we are okay and we can survive. That we don't need others and we are in control of our own lives. Animals don't care, they just follow their instincts. But humans need to feel like they have a choice. They need to feel in control. And living with cystic fibrosis is anything but being in control.
Looking back, I can see that I was okay with making the decision to have a transplant evaluation and to start this process because I didn't feel like I was forced or rushed into it. Because of the openness, compassion and wisdom that both my doctor and my mom demonstrated, I was okay with it. I knew it was my choice, and that it was the best choice. I knew for this moment, however brief, that I was in control and not my cystic fibrosis.
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