Three months

A supportive outlet of highly emotional diva songs has helped me channel the pressure cooker of known and unknown feelings that assimilate inside while waiting for transplant. Celine Dion, Cher, Mariah Carey, Toni Braxton and .. some more Celine Dion played at maximum volume are an excellent prescription for dealing with times like this. There is something in the ultimate diva song that shifts even the most immovable curmudgeon. (Sometimes, right now, I feel like that curmudgeon. I need to be shaken up. Diva songs do this.)

(Did you know that Celine Dion is THE OG when it comes to CF awareness. Her nephew died many years ago from CF and she has raised more awareness and given more than anyone else period. I remember learning that she cared about CF as a young kid through a Touched By an Angel episode. It was a pretty sad episode, but, it made me start thinking about CF globally. It opened up my mind to the idea that my illness was not just mine. There were more people out there dealing with it.)

There are some mornings I wake up and my heart is pounding. This is because my heart is beating too fast and working so hard under pressure from my malfunctioning lungs. My lungs are only working at 24% of what they should be. The physiological stress blurs in with the stress of the mind. Anxiety and end stage cf feel similar. The mind races, the heart beats fast and I look for an outlet.  There are the days all I want is silence. I am looking for a way to meditate more effectively.

It’s been three months since I was placed on the active transplant list. Things have gotten much more difficult. I aggressively denied the need for dependence in the beginning. I dragged my own o2 tank everywhere. I was grateful but stubborn when it came to shopping for and making my own food. I refused to let anyone arrange my clothes. I am now unable to do any of those things realistically. The thought of washing my hair is exhausting. The action of washing my hair is exhausting. I have been considering cutting it for a while now to make it easier and one less energy zapper. But there are good things. I wouldn’t be able to do this without my parents and I am so lucky they are supporting me.

I know good things are coming. It is probably usual to feel like this three months on the waiting list. I know there are people who wait years. I know that I can’t wait years because I am too sick. Exercise therapy is one of the most positive, exciting parts of my week. I love being able to work out daily because it is a positive thing only I can do for my body. It makes me feel hopeful for when this transplant happens. I follow some amazing women with CF on Instagram who have chosen to share their stories. One woman is six weeks post-transplant and jogging already! This electrifies me into reality again. Look at what can happen! Good things are coming! Good things are coming.


A bitesized blog

I have not posted here the past two weeks and it has been frustrating me. My time is filled with transplant-related things to do and yet sometimes my space feels kind of empty. The emptiness is not necessarily a bad thing. It swells with love and gratitude often and only on occasion dread arrives.  I am two months and one week on the active transplant list. My main objective during this time was to take up exercise again so that my body is as strong and ready for fighting its way through transplant as it can possibly be. It’s also a requirement of being listed.

It has been a few years since I have been able to run or swim because of recurring lung collapses and infection issues. Frequent exercise with weights used to make my lungs bleed. Somehow once I started pulmonary rehab two months and one week ago this issue mostly disappeared. It popped up in light ways that were not too tricky to deal with. Exercise is so important. An open chest can help the lungs pop out easier during surgery and facilitate a better recovery because the body is going in strong. Muscle and strength are lost with the combination of surgery and steroids on the body. so I have to give myself the greatest advantage going in. I had a fantastic few weeks in rehab and the pleasure of lifting weights again and feeling muscles I forgot wake up and demand to be recognised was a joy. But during this time I had two courses of intravenous antibiotics and after the second course, my lungs had some bleeding again. I am still doing all I can but it is a modified routine. My exercise goals are a movable target that flex up and down depending on how my body is responding. This is a magic trick that people with CF have fine tuned. We deal with what we have to as it comes hurtling at us and are experts at it. I am currently trying out different exercises and always searching for new ones that might work better for my body. Next week I am trying out a restorative yoga.

I look forward to the day post transplant when I will work out with ease. I want to build my body with my new lungs to the best it can be. HULK ORLA! My goal is to be able to rock climb. Somehow this will happen. (I’ve put it here so now I have to make it so..!) I feel very positive about my life right now despite my limitations so although I am waiting for my transplant it is easy to forget my situation. That probably sounds strange given I wheel a tank half my height around everywhere I go. Sometimes my Mum will say that someone has been staring at me while we’re in the grocery store or out walking but I never really notice. I don’t really care. What on earth could be so alarming? We all have our things but some are not worn on the outside.

There will always be people who don’t get it.  The most joyful, motivating elements of the past few months have been those that do or who try hard to. That’s my friends, my family, my professors, my university, my medical teams and every New Yorker who gave me a smile or a motivational one-liner while waiting to cross the street or while hanging out in the vegetable aisle. Immediately moments of mundanity are transformed from placid grey into an explosion of glitter that sticks to my clothes and trails on my feet for the rest of the day.