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.

My Go Bag

When my transplant coordinator called me six weeks ago to tell me I was officially listed it was raining pretty badly. It was that New York monsoon style rain where the red buildings turn to mush and leak into the streets so nothing is quite identifiable anymore. There was something beautiful in it. I wondered how I could embrace this moment and give something to it that made me feel constructive and somehow empowered? I decided to start small. The first and lightest option was presented immediately to me. It was “The Bag” as my mother has since written on a piece of cardboard hanging off a string looped onto the maroon Herschel backpack in my wardrobe. People waiting for a transplant need to have what is called a “Go Bag”. It’s a backpack filled with everything ready to grab when The Call comes and it’s filled with a change of clothes and all you might need when you wake up after transplant.

I made a rough list of what I thought I needed and then set about googling the Go Bag and what others had put inside. I learned that some people said this bag made things feel familiar and secure when they were able to access it after transplant and others said they didn’t even open it for the weeks or months of hospital recovery they had. One of the reasons for this could be that the transplant centre had most things that are needed within their safe infection controlled environment.

Go Bag’s are also important because of something called “A dry-run”.  For example I might get The Call and travel to the hospital and get prepped.  The team will be running more tests on me and more tests on the lungs to make sure they are in perfect condition. Even at this late stage, the transplant team make the decision when they have run all the tests and actually see the lungs if it is a go. This is why having a transplant team you trust is so important.  It’s hard to determine how long you will have to wait in this instance and you may end up going home eventually without transplant to wait again. That is another important reason to have a well thought out Go Bag!

Here are my current Go Bag items and why they are included

  1. A list of medications and health insurance card. This is basically the essential item presented upon entrance to the hospital so that the doctors are up to date with all medications and the insurance is checked so that surgery can happen.

2.   PJ’s. The operation requires a medical gown and just after the transplant I will be ventilated and there will be wires and tubes and multiple chest drains. I’m not sure until it happens when pyjamas will be allowed so I am going with a button down top and shorts to be practical. I know they will try and extubate me as soon as possible – usually within 24 hours – and they’ll remove some of the six chest drains. I will then get walking with a team effort and a few chest drains still in. Shorts and a button down top seem like the best options for this – just in case I am allowed wear my own clothes that early! (My Mom brought me some over from Pennys back home in Ireland!)

3. Slippers. These are essential to get walking as soon as possible post transplant. The slippers in my bag have a pretty funny origin. Mom presented me with a freshly wrapped pair she kept from the beautiful Fitzpatrick Manhattan Hotel where we were lucky enough to spend last Christmas as a family. Taking my first steps after transplant in the comfiest hotel slippers is OK with me! They are professionally wrapped so they are super clean and safe.

4. A small dry erase board so that when I wake up  I can write words and point at them emphatically to boss people around! Ahem. Just kidding. Once the restraints from surgery are removed and while I am intubated I am determined to have my voice even if I don’t actually have it. Hopefully, I won’t be too grouchy.. I hope for floods of love and joy and marvel. I know I will be strengthened by my gratitude for my donor and hold their family’s loss in my heart as I fight hard for this new gift of life.

5. Toothbrush and toothpaste and toiletries. Nothing feels better after any kind of medical procedure or surgery than a good tooth scrub. I’m not sure how long it will be until I can do this – or rather until someone will do it for me – but it will be good to have. (I am guessing they will have basic lip balm in the ICU and those rollers to keep the mouth lubricated)

6. A wide toothed comb.  Hopefully, I won’t have too much bed hair tangled up.I have been thinking about chopping my hair altogether as it gets harder to wash the higher my oxygen needs get or depending how the day is. (I once had bed hair so bad from an admission where I was recovering from lung collapse and no amount of recommended oils would work. The only option was the hairdresser at home who spent hours brushing out the knot for me. She was the kindest most tender detangler I have ever met! It would have been easy to say – in her professional opinion – off with her hair! But it all worked out. Thanks Sharon!)

5. A copy of the poems and the music that inspires me to feel peaceful but also work harder than I have ever worked to get back on track. I know I will need these to help me ninja my way through! #NinjaMoves

6. A protective mask for when I am able to walk out those hospital doors.

7. My Harper. A Small, black furred American short hair almost three years of age. Excellent for snuggling and formidable radiator. Guardcat also. OK. Ok.. She might be difficult…

If you have had a transplant and a Go Bag or if you have helped someone you love pack theirs please comment below or mail on the contact page what you packed and how it helped you. I would love to know.

Monday at The Met

You get up, get dressed, do treatments, down a coffee and you get to The Metropolitan Museum of Art. What an amazing gift to have this at your doorstep! This is going to be a great day. Suddenly, you feel overwhelmed with exhaustion. You need to sit down. You want to curl up on the cold tiles of The Sackler Wing in front of the Pharaoh and sleep. You need to re-evaluate the plan for the day. The truth is : there is no plan. This is the world of end-stage CF. A world with no real plan. It’s unpredictable and it cuts you off at random intervals. And we’re only talking about something luxurious like going to a museum. Because in end-stage CF going to a museum is the ultimate in luxury. Walking around without the need to actually go somewhere directly – expending energy for leisure’s sake – is the ultimate luxury.  It became clear that to execute the museum trip we – my Mom and I – would need to borrow one of the many wheelchairs available to visitors but it would need to be one with a holder for my giant tank of o2. (A note on wheelchairs: I absolutely refused to get into them my entire life until the last trip to the museum with my Dad when I took one with my smaller o2 backpack tank. One of my constant battles with insurance the past five months has been to get a small portable o2 machine that will make my life easier. It can be plugged in and charged up and so does not run out in the way tanks do. Any time it is low you can just plug it in. But they won’t supply the one I need so because I have a higher o2 requirement now I need to carry the giant sized tanks. They have to be rolled which is why popping them in a backpack or rolling a tank and a wheelchair together are not possible.)              Unfortunately, the  wheelchair that carries o2 was rented out by someone else that – according to the security guy – didn’t actually have o2 to carry and so I hung out a while in the hopes they might come back. Eventually, I had to make the decision: Do I go home or do I stay and soak up a small visit?  That’s end stage CF. There are days when walking half a block to sit in Starbucks chatting over coffee a half hour is the goal of the day. There are days when two hours supervised pulmonary rehab work out is the goal of the day. Sometimes, it’s getting to the kitchen and back to the bed.  Today at the museum, in lieu of any adequate wheelchairs, we chose to sit down and eat soaking up the amazing sculpture garden. On the way to the cafe we met one of my favourite inhabitants of the museum. It’s the Wounded Amazon figure.

amazon met

“In Greek art, the Amazons, a mythical race of warrior women from Asia Minor, were often depicted battling such heroes as Herakles, Achilles, and Theseus. This statue represents a refugee from battle who has lost her weapons and bleeds from a wound under her right breast. Her chiton is unfastened at one shoulder and belted at the waist with a makeshift bit of bridle from her horse. Despite her plight, her face shows no sign of pain or fatigue.” says The Met website. I am and have always been hugely inspired by these warrior women and feel a kinship with their tribe. I like to say things like “Amazon Power!” to my female friends to give them a boost or to cheer myself along if I’m going into something difficult.

Just after my 30th birthday last March my father wheeled me around the Met during a tour where the guide stopped at that very statue and noted the wound beneath her left arm accompanied by the Amazon’s naked breasts and strong face made her a vulnerable and sexy character. This shocked me. This weird male gaze on the ultimate powerful warrior woman was claiming her dying experience as sexy because of a naked breast and an open wound. I told him perhaps her naked breast had to do with her being in battle and not giving a hell about something ridiculous like covering up her body while literally slaying. His analysis reminded me of how sometimes people project onto those battling hard without having any real perception of their fight. I would bet the Amazon wasn’t concerned with being sexy or his viewpoint probably given she was one of the most badass warriors in the world. (Ok, I know history puts them down as mythological but I can’t help feeling they were out there somewhere. )That Amazon was fighting for her life and maintaining strength and dignity in her darkest hour despite everything. I’m pretty certain of that. 

This whole scenario made me realise I should blog more. I have thought about it often the past while and then resorted to microblogging on Instagram. D’oh. Perhaps it’s easier because darting off a short note about the day is less imposing than staring at a blank page when so many factors and emotions are involved daily. Another, more clear cut, reason I felt I needed to blog was that my friend recently asked me what being listed for transplant meant.  He said he was trying to piece it together from my social media. It never occurred to me that he would be interested. Perhaps more people are interested. Since transplant became real for me I have read many blogs on the subject and those women blogging have made me feel more secure and comforted by sharing their experiences. Hopefully, I will be able to share mine and help others too.

Two Weeks

My Dad took this picture of me a while ago on a necessary walk break along Riverside Drive. The need to pause and perch is positive because the very act compels us into stillness, reflection and gratitude. That day it was for the sunshine, the view across the Hudson and the presence of my father.
I have found cause to pause often over the past few months. This stage of cystic fibrosis means often the mind races as the body struggles to stay in natural sync. One organ being out of sorts teases another and so breathless lungs can lead to an elevated heart rate which perpetuates a hurried mind. The simple answer is to pause, perch and take in whatever is possible. The breath or the view or whatever allows a pathway to a deeper connection to the moment. Sometimes this line from Sylvia Plath’s The Bell Jar comes to mind: “I took a deep breath and listened to the old bray of my heart. I am, I am, I am.”

Today I am grateful for

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Today I am grateful for…

being on the double lung transplant list one whole week

not being too hung up about being on the list one whole week

the giant artichoke pizza I got to try yesterday

the way the sun shines in on my black cat’s shiny fur this morning

waking up without discomfort and being able to get my own IV’s

anyone waking up this very morning determined to improve the lives of people with CF

my Dad showing his support by sitting in on my pulmonary rehab this week

the sunshine outside sparking a feeling that summer is sailing in

my soul sister’s arrival soon from Ireland

Be the lightning bolt!

My new Vogmask arrived just in time for my first pulmonary rehab group session tomorrow. I’m ready to be a lightning bolt of love and positivity! ⚡️⚡️⚡️I’m nervous because of my history of lung collapses and bleeds since I was last an athlete but I am going to trust this is all in perfect time. My only role is to make sure the positivity I feel comes out in my effort and energy tomorrow at the transplant centre. I am ready! The help of my amazing team will ensure I build strength and resilience to be ready and worthy of this gift of new life when it comes.