Our beautiful daughter Aisling passed away in my arms at 11:15am on Friday
23 December 2011
Aged 20, her courageous battle with Cystic Fibrosis has now ended. If this
has come to you as a shock please don't let it spoil your Christmas - Aisling is
finally at peace and has taught us so much about true grit, tenacity, courage
and determiniation. She even took control when she decided to let go and die,
asking for me to hold her in my arms, remove her BiPap oxygen mask and take one
Here is a photo of Aisling with her American fiancée Chris.
I was hoping to be able to go home for a few hours for Christmas dinner and presents. However, reality is, I'm just not strong enough. I'm still on the NIV most of the time.
I feel like my chest is good now, but i've lost so much muscle and strength. It's a long way up from here. Had another iron infusion to try and boost my red blood cells. Yesterday I got up loads, but today nothing! I started a new feed regime to try and get me more rest at night, doing bolus feeds in the day - so just quickly pushing it in with a syringe every few hours. Just made me not want to eat though, plus it's an extra thing to do. I'm going back to overnight feeds tonight. Phew :)
I have all the presents for my family here. No wrapping paper, so I just took prices off and delivery notes out and put them back in the box/bag they came in. I used some medical tape to put tags on them - sorted! Lol. Mum's bringing me Xmas dinner on the day and her, dad, Brendan, Robyn and Declan are all bringing the family presents so we can open them here. I'm excited.
Wonder if I'm ever going to get out of this place some times...sighh...
Brendan and Robyn came to see me. Dad stayed in my room last night on the spare mattresses they had for relatives here. Robyn gave me a pedicure and because I can't bite my nails with the NIV on, they've grown, so she could give me a manicure too!
Aunty Heather has been to see me too. She's not a blood aunty, she's become known as aunty because she looked after us so much as babies. Someone at her work place make this giant Christmas cracker, but I'm not allowed to open it until Xmas! Makes me even more curious to see what's inside.
They've done most of the tests for the transplant assessment. They have to do a 24 hr urine collection and i can't walk to the toilet yet so they've had to put a catheter in. It stings every time I cough or sneeze ugh it's just so uncomfortable! Grr...at least it's just for 24 hrs anyway...phew!
I've been given a big thick book from harefield which tells you in detail about every aspect of the transplant. I'll be reading it tonight and note any questions I have. Hopefully I can sleep tonight with this catheter in...eww!
Sorry I haven't written a blog in a while. I've felt so ridiculously exhausted. My iron levels are low again so they're consulting with the 'blood doctors' what to do. They can't give me a blood transfusion because then I wouldn't be allowed a transplant. Hopefully they'll just give me another iron infusion. I've literally slept the whole day. Even when I was sitting up, I was finding it hard to keep my eyes open. Constantly dosing off. It means I haven't been able to do physio properly either because I just don't have the energy. Now it's the weekend too, so I doubt anything significant will happen from the doctors side.
I switched back to my old mask because the newer one, nice as it is, it just too big. the straps aren't short enough for me to tighten it properly so it kept leaking around the edges (making farting noises of course!). Abbey, my maid-of-honour, and her boyfriend, Olly, came to see me. I'd never met him before - shame that the first time I meet him I'm like really ill and stuff lol. Always like to make a good impression on the best friend's boyfriend - ah well! They brought me a whole wrapped up shoe box of goodies - soap, chocolate, teddy bear, photo album, candles etc. Cheered me up and it was very well wrapped! Looked like something you'd get in Lush - all wrapped up nice mm!
I've had a CT scan, ECHO and ECG. The CT was easy, just had to hold my breath for a few seconds and they scanned my lungs. Mum saw it and said that all my mucus is right down the bottom of my lungs. I have no idea how I'm going to get to that stuff! The ECHO looked normal to me - my heart looked so cool on the screen pumping away with the little valves flickering. The ECG is just a trace of my heart beat, boring but quick so no problems there. I also had some blood tests for tissue typing. They use these to match with the new lungs so very important!
Hopefully once I get my energy back, I can start walking again. I've lost so much muscle. I have no idea how I'm going to get it back - it's really hard to imagine being able to walk normally again because I've been sat in bed all this time.
Today was an okay day. Bit of a temperature and 130 heart rate due to loads of mucus again. I got up some of it but it's pretty hard to get up now it's all down the bottom. Mum's been here a lot and even just having her sit with me is comforting. Dad's been coming after work and bringing all his gadgets with him like nice headphones and iPhone speakers so I can listen to my music.
They've started the transplant assessment tests. They did my liver ultrasound and it's all normal and good :) I'm currently wearing a heart tape thing which traces your heart for 24 hours. They took a lot of blood from my port for more blood tests. So everything's underway which is awesome!!
Chris goes back home tomorrow for a couple of weeks :( I think he needs the time off lol. I'll still miss him everyday. They gave me a different mask for my NIV. It's a lot more comfortable. The old one had a strap around the forehead that i think was giving me tension headaches.
I haven't walked for a few days now. Honestly, I feel I've become dependent on the NIV. It's hard to have to use my muscles suddenly when the NIV has been doing all the work for me. The Physio has a plan to exercise me on the NIV and get me as fit as possible then I can walk better without it when it comes down to it.
Yesterday, I woke up with a temperature of 38.9 and heart rate of 150 at rest. Not good. I wasn't feeling breathless and panicky with it like I have before though. I just felt FULL of mucus. It was coming up so easily though - I literally cleared half a cup of the gunk! Felt so much better afterwards though.
Thursday is ward round day, which means the consultant, the dietician, the physio, the CF nurse specialist, the pharmacist and the doctors below the consultant all come to see how you're doing and decide on the next course of action. So they came around yesterday and said that unfortunately with my spike in temperature today and high heart rate, they just can't risk putting me in the back of an ambulance and travelling to Harefield on Monday. So the transplant assessment is off. I wasn't surprised with how unfit I am generally anyway that they said I can't go. Dad was though. I think he was a bit shocked and Mark, the CF nurse specialist, said that he looked a bit deflated when they told us. I just thought, well, feeling sorry for myself isn't going to acheive anything so on we battle!
This morning, Mark came in to have a chat. They'd received an email from Harefield and my consultant had spoken to the transplant consultant. They've decided to make an exception and are doing the transplant assessment tests here. I then just have to arrange to go in for a half day appointment at Harefield for the psychological assessment and to meet the team and familiarise myself with the hospital. Pretty damn good! Everything's happening now - makes me excited for what I could do with new lungs again! EEEEEEEEE!
Getting a bit bored in the evenings now. Being on such a high dose of steroids definitely makes me restless. Feel like I need to be doing something constructive all the time - really get my teeth in to something! Good job Mum bought me a huge Sudoku book to do lol.
I've messed around with my blog layout a bit. I hope it doesn't confuse anyone. There's a drop down menu on the left so you can view it in different ways (Flipcard is my favourite). I think it looks nicer anyways!
Today was an okay day. I woke up at 4am with a really dry cough. Caught the odd hour of sleep here and there since then. Me and the doc decided to try doing my feed during the day instead of overnight. Unfortunately, the insulin doses I'd been taking were for overnight when my sugars are usually really high. So they told me to take my usual doses and I went hypo.
This is when there isn't enough sugar in the blood, so it makes me feel verrry drowsy. It's very hard to stay conscious and you just have to focus on something or keep talking to someone so you don't drift off. The normal range for blood sugars is 5 to 8. Mine was 2.9 this morning, so it was pretty bad. I was given a tube of glucose gel to swallow. It's just pure glucose so doesn't taste bad. I also sipped on a Dr Pepper. An hour later and I was still 2.9! Had another tube of glucose and more Dr Pepper. Another hour later 6.3 - FINALLY! I then had a good sleep.
After my sleep, I texted the physio to say I'm ready when she is. (Makes SUCH a difference that the team here all have mobiles for patients to contact them on.) She came, we cleared a few bits and I went for a walk. My calves were so tight! We walked all the way to the end of the corridor and sat down. She stretched and massaged my calves for me and we walked back a bit faster. My chest muscles hardly hurt as well - I made sure I had paracetamol and ibuprofen before we did any walking.
Mum is being a star and organising my car MOT and test drove some new cars for me. The physio says I can have a battery pack for the NIV that lasts 7 hours so I can go and sit in the cars and pick one. Unfortunately one of them has a waiting list so I wouldn't be able to get it until March - NOT an option with being on the transplant list.
Mum's just being a star generally. Dad's doing his best between work, which I completely understand. He's being a star too! The last thing I want is for them to start struggling financially - stress no one ever needs! He gives me foot massages which really relax my breathing. They both stayed Monday night and Mum stayed again Tuesday night. She left this afternoon to sort out the whole car thing.
Sian, my usual masseuse, came to visit me briefly on Sunday. She did some reflexology on me. For anyone that hasn't had reflexology - you're missing out! It's the most relaxing thing EVER. Sian is amazing at back massage too - always finds the right spots and I always cough up loads after. It's funny because I never realise how tense my chest muscles are until she's done her magic! To see her website, click here.
Chris came to visit yesterday. I miss him so much. He does so much for me so in a way, it's a nice break for him with me in hospital. I just want to be home with him in our big new bed playing my xbox and eating chinese! I'm sure it'll happen eventually. I am making progress - it's just very slow and I'm an impatient person!
Yesterday started off bad. I woke up with a temperature and high heart rate again. Full of mucus and finding it hard to breathe.
My nurse call bell had dropped on the floor so I was stuck...began throwing things at my door window to try and get attention. No one came. I clamped my line so my machine would go off, then a nurse came in and started fussing over the line. I eventually explained to her that I'd done it on purpose because no one was coming. She said she thought she heard something but just thought it was something falling down so didn't bother to check...lol
I wrote to the nurse that I need a Physio NOW and to call mum. She got hold of the Physio and she was here by about 8am. She was annoying me because she kept asking me questions when I just needed to clear the mucus. We eventually got on to that and thankfully it was clearing really easily. I felt soo much better afterwards!
I did another Physio session later on and cleared even more. By the evening, I was off the NIV and on my normal oxygen eating halloumi cheese and toffee yoghurt!
Today, I've woken up feeling good and pretty clear in my chest. Just wonder where all that mucus came from. Hopefully it won't flare up again. On Friday, the consultant will make the final decision on whether I'm stable enough to go to Harefield for the 3 day transplant assessment on Monday. Fingers crossed...