One Year Later. 2014.

Around this time last year I was planning a surprise party for my dear friend Rachel and I was revelling in the fact that for the first time in over five years I would not be in hospital or on treatment for Christmas. I would be at home with my family. It had been a funny few months. That September the idea to come to Columbia University had occurred. It was at a release party for Meave Binchy's Irish Times columns and a conversation with some kind hearted creative minds that made the impossible seem possible. The next morning, while cleaning my room, I found myself suddenly unable to lift the duster. Somehow my body had locked in place and any slight movement forward meant severe bolts of pain shot through my upper chest. I curled downward in a ball searching with one outstreached hand for the phone. I knew what it was, My mom on the other end of the phone knew what it was, but I needed her to tell me it probably wasn’t that. The last time my lung collapsed – two years earlier -  it was transplant and death talk. But I had kept working. I wrote all sorts of things and stayed focused and that is how I stayed alive. Now I was out of that situation, I had hoped anyway, and I was one month on this new combination trial. I would not go backwards. I could not. Lying in bed, unable to move, for the next few weeks the pain killers blurred my mind and made communication interesting to say the least. I thought about New York. There was a video online that adverstised Columbia University, it’s where an author who attended here calls it ‘doubled magic’, It talks about the rectalinear boundaries and illuminates walkways with artificial light in a kind of time lapse that shoots possibility from the screen. I talked to a writer I knew who went here. They gave me hope. I got through it. My lung reinflated. I got to Christmas. I was ready to apply to University. The surprise party happened – my favourite people all together again and so full of love and boundless creativity carried with them from their new homes abroad so that when we came together the love magnified. A few days after the party, two days before New Years Eve, I got a cold. 48 hours later I was admitted to hospital. One day later I was delirious. My body sweated out it’s insides for days. I threw up, bled, emptied and shook. People wore white masks and white gowns to tend to me. Only close family were allowed. I wrote mindlessly when I was not staring, drooling at Netflix. Thank God for The Good Wife.  Six days in I had a conversation with a medical team member who told me it was Swine Flu. She reminded me that if I could have a semi coherent conversation with her I could write my admissions essay. Of course she was right. I couldn't really see how it came out at the time. I was jacked up on everything. I wrote about Just Kids by Patti Smith. Every word shook, every word felt like a mountain. My temperature was sky high. Nurses brought coffee. Toast. I sucked melon. I threw it all up. Panted at the screen. Typed. The lines were violin strings taught along my spine.  It looked ok. While this was happening , across the world, my friends, my exceptional  friends, were typing up my articles and columns into the correct format so I could imput them on the system. Because the downloads were not a suitable format and I had barely enough strength to type the admissions essay.  I sent it all in 29 minutes before the application deadline.Together we did it. Days later the temperatures stopped. And the week before I left the hospital I think I changed from the placebo drug, on the drug trial, to the real deal.  It’s been almost a year and instead of having intravenous antibiotics every six weeks I have had them  but three times this year. One of those was due to travel exhaustion after insane delays I would argue under normal circumstances it wouldn’t have been needed and the other a precautionary back up pre the long, risky flight to America. It’s now December 16^th  and the first semester at Columbia is over. And I got through it. It was rough but it is done. And I have made some wonderful friends and felt all kinds of newness. I got here because of hard work and because of the hard work of others. Because of the incredible generosity of others, of so many people who gave on so many levels to allow me live my dream. Here I am at 27 and I am still alive. And every single day I try to stop, to breathe, and to process the sheer beauty of being on this journey. I am so grateful for life. Thank you thank you thank you.

Day #6

Day #3

I just want to say I really appreciate all of the responses I've had from various candidates. A few people commented that I had said only party leaders should visit yesterday - in the post below this. They're right, but I didn't mean it like that. I was just so exhausted and wanted to convey that. I'm grateful to all of the people who have showed interest. Because I am so tired I would like to try and limit it to one candidate per party, and obviously an Independent or two. Hoping that doesn't offend anyone but am just exhausted. The unit in Vincents is being built but it will take a year before it is complete and ready to open. A lot happens in a year for someone with CF. That issue and issues nation wide including the setting up of the National Transplant Authority and much more are very important for people with CF.

I just wanted to say thanks to everyone for their support.

Orla x

Day #2

Today was much more quiet, as it usually is on Sunday's. My Mom and my friend Q came to see me which was absolutely super. Mom brought wonderful macrobiotic quiche that she made. It was so delicious after salt and vinegar hula hoops for breakfast. Ahem. A mere slip in desperation.

I was up pretty early and  another girl with CF that I knew died this morning. I don't feel it's my business to say any more than that, but it was a very sad, sad day. There was also a really interesting discussion on when a death should be announced and who should announce it. People often find out about their dead friends on facebook, which can be terrible. The way social networking is changing the way we grieve is fascinating. I spent a lot of time thinking about that today. And trying to read, and craving a blue Slushie - neither of which happened.

I was also pretty exhausted because of the drugs and the noise, but this is definitely not the worst ward I have been in. Because I have been on the new IV's for over 48 hours now they are starting to affect me and really wore me out today. I bought The Observer and just kind of stared at it. IV's can turn my mind to mush and make it impossible to focus or concentrate. It drives me mad because it's like hitting the pause button on current affairs for two weeks. I can't absorb and forget so much - what a time for it! The lack of sleep just amplifies it to infinity.

Thankfully the large, grey sheets that were covering the entrance and exit to the corridor have been lifted. This means I no longer have to walk through two other wards to get 'out'. This is brilliant. I was afraid it would be one of those things that's meant to finish at a specific time, but drags on for weeks. It looks like it was just a paint job. I was actually holding my breath walking through them or trying to and keeping my hand over my face.

Two of the women in my room are actually great craic. The lady who yells at me is really lovely too and very very forgetful. God knows what she's experiencing when she hears me cough. Earlier she asked 'Where is that dog hiding?'. We had a nice walk along the corridor earlier while the nurse got her tea. It was actually the highlight of my day. She's not yelling so much tonight either. But someone else is snoring loudly. Hilarious!


I got a call from Eamon Gilmore's assistant today to say he would call tomorrow. I really appreciate that. I also got a communication from Mannix Flynn (Ind), Ciaran Cuffee(G) and Oisin O Halmahain(G) saying they would all love to visit. Since I am exhausted and have limited energy it would be great if only the leaders came in. But I'm not so sure that will happen. Wish we had a country where it did though. The offer is still open. They can just tweet me @orla_tinsley or call Vincents and ask to speak to me. I think all the women in this room deserve that respect.

By the way, the empty Azo wipes tub that I replaced on my first morning here is still beside the new one in the same bathroom. As in no one has coped that it's empty yet and thrown it out.
The nurses are really lovely on this ward though, and they are better than some other wards on their knowledge about CF.

X

Day #1

I actually had a sleep last night, which I didn't expect. From my entrance onto the ward until around 1am one of my room mates was very unimpressed with my cough. She just kept saying 'shut up!' 'I'm trying to sleep" 'Shut up!'. It's a pretty normal response to encounter on a 6 bed ward, but when I realised the woman was not confused and SEEMED totally with it, it kind of upset me. I feel like a broken record. 'Sorry, but I have to cough. I can't help it'. This is a hospital lady! I don't waste anger because I know it's just ignorance and it's not her fault she doesn't understand, but it can just grate. I cough every 3 minutes or so when I'm sick. Every single time, including while I was going to sleep she said 'shut up' or moaned loudly. It's obviously not fair on her either. But it is seriously tough to listen to. I don't think I should have to apologise for something that is out of my control and if we had a proper health sytem, wouldn't be bothering her at all. The lady across from me today told me that she had seen me on the Late Late Show and then said she remembers that time I was meant to go on and I was too sick. She seemed to remember a lot which was v strange. Turns out she had two babies born with CF about 30 years ago. Neither of them survived. She chatted with me for a few minutes and it was tough to listen to her. She was lovely though, very nice and very supportive. But I'm just so exhausted.

I have so much stuff with me in here that it blocks up my entire corner. Most people with CF bring so much stuff with them to hospital. It's necesarry to stay sane. We mostly get dressed every day too. I haven't showered today yet because I hate using the showers in here and I can't unpack because there is not enough space like there is in single ensuite rooms downstairs My friend text me earlier and told me a woman with some easily transferable infection had just been removed from her room. No one told her, she just saw the curtains being taken down (which is what happens if there is dangerous infection in the room, they are cleaned) Afterwards I tweeted that I would like any candidate in the general election who had the guts to come and visit me here and discuss the situation with me. I want them to see the reality. And this ward is actually very good and the nurses are very nice. It is certainly not the worst ward I have ever been in. But any ward that is not a single en-suite cubicle is not good enough.

This morning I went to use the bathroom and there was no azo wipes in it. They are the wipes used to clean the residue off the toilet seat before using it. I walked out and took some from the counter, and told the nurse there was none so I was taking them. The other thing is that three times I've left the ward this morning to get some fresh air. There was a bad, strong smell of urine here for an hour or so this morning. Unfortnately to get down to ground floor and outside I have to walk through two other wards and take lift, or walk down 4 flights of stairs and walk through the ward the woman with MRSA was on. I checked and it says the contruction work will end tomorrow evening. That would really be great. Two days might not seem long, but infection risk is so significant to me. It could damage my life. I really hate this place.

The food is pretty gross too, but I managed to get some nice organic natural yougurt in the shop, along with The Irish Times. Sat there eating and reading for a while to avoid the heavy smells and dead air of the ward. I opened the window last night and one woman got upset about it. The air is so heavy here, like it's humid. My cousin is bringing me in some real food later. SO.EXCITED. It's really hard because I have to eat lots all the time especially when I'm unwell or in hosptial. When I'm sick my body burns calorie faster, I lose fat through malabsorbtion and diabetes. I also lose muscle mass.

I really hope a politician comes in to talk to me. I'd really respect any who had the guts to, but so far - nothing.

First Night in Hospital

I finally got a bed in hospital today. It was a relief as it was Day Three of waiting. I called at 12 and they said there was possibly one and checked again to see if I had VHI. This meant I could go to one of the two semi private wards, which are ok but still have a mixed bag of residents. They are generally much cleaner though. Unfortunately when I called back at 4pm (because they didn't call me back to let me know the outcome like they said) the person had not gone home. I went to Superquinn to forage for dinner resigned to the idea that I wouldn't get one until Monday, unless I went to A and E. I'd been in worse situations than this, so I knew I didn't need desperately to go to A and E. Because of the dangers of cross infection I try and avoid it unless I am in severe pain/have bad bleeding or whatever. A blog I follow www.runsickboyrun is an amazing site by a 31 year old guy with CF in the US. He waited at home for a bed, but then got straight into a cubicle. He posted a picture on his facebook page. I saw it on the second day of waiting for mine and just felt so sad and frustrated. It's now 2011 and I actually frequently say to people "The Unit will be built next year!" It is so exciting to me. And then I think, what if something happens in that time? And then I shake that thought.  I've met the guys involved in building, they were lovely. There is real passion behind the project. As I sit here in a 6 bed room on a neurological ward that does not specialize in CF or anything respiratory, with five elderly ladies, I think of that.

I have a good stock of DVD's (entire boxset of The Wire to watch again) Unfortunately my face cleanser  opened in my bag on the way here (bags literally carrying weights dragged in by my amazing boyfriend!) My corner smells of Nelson's 'Pure and Clear'. It's better than nappies..

I've been here since 8pm and now at 11pm I'm still waiting for the INTERN to admit me. (Le sigh. Interns drive me mad) I've missed my 10pm IV dose, nebulisers and tablets. I'm pretty tired, so it's going to be a nightmare when the intern eventually arrives because I'll get more drousy with drugs but need to stay awake to do physio. Going to watch 'The Joneses' now to stay wide eyed. Not really looking forward to the weekend, they're always the time of week when you can see the tumbleweed wheel through the hospital corridor. You'd think weekends would be buzzing, but not many people visit. The week days are better because there is an actual medication and physio routine, which makes it all a little bit  easier.

x

P.S. Also my WARD is usually accessed on it's own corridor but because of some construction work going on the normal route is boarded up, so I have to WALK THROUGH TWO OTHER WARDS to get to it. That's completely crazy and so dangerous!! I'm really upset about it, but at the same time extremely grateful to have a bed. And I'm grateful to have a wonderful life apart from everything. I'm so lucky.

Waiting

I've been waiting for a bed in Vincents since yesterday. It's not a long time considering the usual wait time, so it's ok. But it is frustrating. I did home iv's for three weeks at home, meaning I spent an hour and a bit a day infusing two different drugs into my system every eight hours as well as my normal nebulisers etc. It was working great, even though it was so exhausting. Last Monday on my weekly check up to the hospital my lung function was nearly back up to baseline. That evening my sinuses started acting up again and post-nasal drip came out of no where. Because of some other physical deformity in my sinuses I can't use most sinus sprays because they could infect my brain. (Problem child est moi!) So there was little I could do but nasal rinses and lots of physio. The post-nasal drip reinvigorates the bacteria in the lungs and literally gives it a fresh army. At my appointment on Wednesday my lung function had dropped 30%, to a number lower than when I originally started IV's. So disappointing. It's literally as if I've been popping smarties and infusing water into my veins for the past three weeks. It's frustrating. I also couldn't run because of my foot, and even though I used the cross trainer, did weights, core and cycled a lot it's not the same as running. The pounding involved in running really shakes up the lungs and moves that mucus out.

So here I am waiting for a bed again. I'll probably get a 6 bed and spend the first week and a half  konked out on new drugs while trying to keep an eye on everything going on around me. I've been mentally trying to prepare myself for it since I found out. That place is so soul destroying.
I was really looking forward to being better and running the Connemara Half Marathon in April. I really needed end of Feb and all of March to train properly for it. I'm not giving up on it yet, but we'll see. I can't afford to be foolish about it.