Tara’s Story
Tara was diagnosed with Cystic Fibrosis when she was 14 months old. Around the age of 17 her lungs began to deteriorate as CF started taking its toll. She spent a year and a half in and out of the hospital until receiving her double lung transplant on February 1st, 2012 at age 18. Tara was kind enough to answer some of my questions about her experiences living with Cystic Fibrosis and how her double lung transplant has impacted her life. Tara is currently waiting to re-list due to Chronic BOS rejection. We wish Tara all the best as she waits for her new lungs. If you would like to support Tara and follow her medical journey, visit her Facebook page here. Bria: What was it like growing up with CF? Were there limitations you encountered? If so, how did you face them?
Tara: I was very fortunate to grow up as a very healthy individual with CF. I was able to play sports and go out with friends with few limitations. I had to incorporate treatments into my day which on average took about an hour each, three times a day. I always had to remember to bring enzymes with me wherever I went so that I was able to eat. But for the most part my CF life was easily incorporated into my regular daily activities. It wasn’t until I was in grade 12 and my lungs began failing that I found CF really overtook my days. I was up to doing 6+ hours of treatments daily. I was on oxygen full time. In and out of the hospital for stays. Off and on IV medications. Slowly I went from being the healthiest CF patient in my clinic to the sickest patient in my clinic. CF began taking over my life so I was unable to do much other than focus on my medications and treatments – which isn’t much of a life – so I decided to list for a transplant.
B: If you could tell people one thing about living with and having CF what would it be?
T: I would tell them that CF robs people of many things. It takes away childhood innocence because you learn at a young age that you have to grow up and be mature about managing your treatments, medications and health. CF never takes a day off, so neither can you. It manipulates the way you think, the goals you set for your life and the dreams you create. Suddenly your dream of traveling the world takes a backseat to simply graduating from high school or university. You want to achieve normal life goals that someone without a chronic illness would consider to be a ‘given’ in life but CF starts to shape your goals. But for everything that CF can take from you, it doubles your dedication, desire and motivation to overcome and defeat the disease. You want to live one day longer, to fight and win one more battle, it overpowers the negatives of CF and you are left with an eye opening appreciation of life itself and the drive to live it to the best of your ability. This appreciation for each day is something some people will never realize no matter how long they live. A quote by Oscar Wilde that I recently found sums up this life lesson that many living with CF learn at a young age, it says “to live is the rarest thing in the world. Most people just exist.” So although CF may make day to day life challenging and difficult at times, it grants us one of the greatest gifts – a love and appreciation of life.
B: How did you feel after you received your transplant? Did it change your perspective on anything?
T: After my transplant I felt like a completely new person – as if I had been given a ‘redo’ on life. I was more energized and excited about everything and anything. I was alive and living was so much easier. My perspective on how I would carry out each day definitely changed immensely after transplant. I’ve learned to try to not dwell on hardships or struggles and to enjoy each day. I’ve started living life in a different way. The smallest things such as a phone call, a nice hot shower or a delicious home-cooked meal make me the happiest. By enjoying these things I find that each day is more exciting and wonderful so I’ve been trying to pass this outlook on to others around me. When you can realize that there is something good about everyday your life becomes richer and that’s when you really begin living.
B: What do you think we can do to increase organ donation awareness?
T: Start the conversation! By telling just one person about your wish to be an organ donor or even just bringing up the topic it begins to raise awareness. Then hopefully that person will begin the conversation with another individual and so on until organ and tissue donation become a normal day-to-day conversation topic. Even growing up with CF I had never heard of or thought about organ donation until I was told I would need one to survive so I understand that it’s not a popular or common thing to talk about. That’s the first thing that needs to be changed to help increase awareness.
B: Is there anything you feel like you have learned because of your experiences with CF?
T: Living with CF brings about many struggles, fights, disappointments and troubles that the average person doesn’t encounter but each has taught me something. One of the biggest lessons I’ve slowly come to learn is that so many people rush through life without appreciating the small things. My attitude towards each day has been impacted by CF because I now live each day for me. When the little things in life such as showering or carrying a conversation become exhausting to do, you learn to appreciate the ability to be able to do the small things. I now do things that make me happy, I live in the moment and I try my best to not take anyone or anything for granted. Whether you are living with a chronic illness or not, your life is not guaranteed so you may as well make the best of what you’re given! However I think the most important lesson for anyone living with CF to learn is that you are not your disease – it does not own or define you. I am thankful and appreciative of all the battles I have overcome and the ones I still have yet to face because they have made me into the person I am today and I love the person I have become.
B: What is the most important thing that has helped you through living with CF, receiving a transplant and now facing chronic BOS rejection and having to re-list?
T: My support group consisting of my family, my friends and my boyfriend. I would be nowhere in life without their constant support. I always have someone I can talk to or cry with, rant to or laugh with. Whether they realize it or not, sometimes the little conversations – related to my health or not – are what get me through the tough days. The people in my life are what make life worth living which in turn gives me the strength to continue fighting no matter what the battle or obstacle is. The whole reason that I can remain positive or inspirational through the bad times is because I know that there are so many people that always have my back and are willing to do anything for me. I know that I am the one who has to physically go through each test, treatment or doctors visit but I also know that each and every member of my support group goes through them with me whether mentally or in person. I’ve also learned that it’s okay to have bad days. You just have to learn to not let them consume you. You have to go through the bad to appreciate the good – all of which is easier said than done – but if you realize you’re not alone in your battle it makes things a little bit better.
B: What are your hopes for the future of organ donation and transplants?
T: My hopes are that someday we won’t have to worry about rejection being an issue with transplant, resulting in the need for second or third transplants. A majority of the time when someone has to deal with rejection, there is nothing they could have done to prevent it from occurring and the treatments – whether for acute or chronic rejection – are harsh and take a toll on you both mentally and physically. There are enough complications and issues that come along with receiving a transplant, such as increased chances of developing cancer or the wonky side effects from all the harsh medications we take just to prevent osteoporosis, low vitamin levels, improper kidney function, etc. all caused by another medication or the transplant itself and I feel as though once you’ve fought to receive your transplant you shouldn’t have to worry about ever having to go through that portion of the process again. The surgery in itself is complicated and stressful and usually requires a long, dedicated recovery process. It would be nice to know that you will never have to go through it more than once so you’re left with some peace of mind knowing there are fewer obstacles to jump over in the years to come post-transplant.
B: What would you tell someone who is hesitant to become an organ donor?
T: Whenever I encounter someone who is hesitant about organ donation the first thing I do is ask them, “What are you unsure of?” Most of the time after listening to their response, I am able to answer their questions and concerns and bash any thoughts they had about organ donation that are actually only myths. On the rare occasion that someone is still unsure I tell them that they have every right to make their decision, one that they are comfortable with – I never push anyone to become a donor – but then I share my story of organ donation. I find that the media usually only follows negative stories, whether it is about organ donation or a natural disaster, they tend to overpower the positive stories. Although they are improving on following positive stories, the negative outcomes of transplants that are seen by the public tend to sway their opinions on the success of transplants. For CF’ers transplant is still the only treatment but to anyone living with CF whether they get one year or twenty years from their transplant it is time they are able to spend as a free, normal individual – or close enough to it. This is something that as a CF’er you only ever dream of and never imagine actually happening. So when the public hears about someone who has had a positive experience with transplant and who is forever grateful for however much time they were given from their transplant it tends to sway the public’s opinion in a more favourable direction – which is ultimately why I love to share my story with others.
B: Is there anything special you do in April to celebrate National Organ and Tissue Donation Awareness Month?
T: April is always a busy month! There are many awareness events occurring throughout the month and I always try to attend as many as possible! They range from flag raising ceremonies and speeches to memorial services. We remember the donors who have selflessly given the gift of life to so many individuals. We celebrate those who have received transplant and are now able to live their lives on their own terms. We encourage those who are still waiting for their transplant to keep up the fight until their call comes. We pay tribute to those who have helped increase awareness for organ donation and we carry on the memories of those who have passed away after receiving a transplant. By saying ‘we’ I am referring to my newly found transplant family. Whether you have met someone in person or on Facebook or have just heard their name from a friend, you immediately have a connection by both having lived in the ‘transplant world’. This connection creates a bond that is unlike any other friendship you will ever make. It is effortless yet you feel the closeness associated with family. It truly amazes me what the transplant community can do when we all work together. It is a family that I am blessed to have become a part of. So April has become one of my favourite months! It definitely is busy and hectic at times but it brings about a feeling of gratitude and thankfulness that I then can share with anyone I encounter.
