|Ventilated through my mouth and on ecmo|
|Still on ecmo but ventilated through tracki. the red tube (blood) is the ecmo which went into my neck on the other side|
I had been ready to die, I had accepted that death was coming, I had even tried to communicate on ecmo that I'd had enough. I never wanted to die, I just didn't know how to do it anymore, I was suffering and I didn't like it. So having a transplant felt like maybe someone else deserved it more because I was so weak and so tired and I had given up for those brief moments. What kept me going? Stuart, My Mum and a visitor I had one day, I saw her in the corner of my eye, standing there, I tired to point her out to my mum and Stu and said 'whos that' there was no one there in there eyes, but the was to me, I don't think it was a hallucination, I think it was my angel Debbie and she was obviously willing me on, telling me to carry on fighting that little longer. Debbie was a CF friend of mine who died at the very young age of 16 after an unsuccessful transplant, I was only 10 at the time, I looked up to her, she was an inspiration.
In ICU after the transplant I struggled to grasp reality. What was real? The terrify things I remembered where they true or some terrifying hallucination. The reality and the hallucination, both were as terrifying as each other and they stopped me from sleeping, I begged to be sadated again just so I could rest.
The next thing the physios were at my door, already wanting me to start my rehab, the thought terrified me, my body felt like a dead weight, like nothing wanted to move and I didn't even have the strength to undo envelopes. What were they going to try and make me do. Sit on the edge of the bed. It sounds simple, but I was found it hard lifting my head how was i going to maintain holding my body up. I had two chest drains in, wires attached, tubes everywhere. this was going to be hard. I reluctantly agreed. they sat me up using the bed, moved drains and wires, slowly the moved me into position, I had to start using my stomach muscles to hold myself up as I Slumped forward. I started to nose dive off the bed, but I was pulled back by the physio behind me and pushed upright by the one in front. We tried again. My sats were still good, but I felt so breathless, I was working my new lungs. I think I was on just high flow at this time as they had weened me off the ventilator, on to cpap then high flow. So we tried again, I straightened up hand down on the bed and I held myself, with little to no support. I didn't feel that happy about it though, now I see it was such a big mile stone, but then it was just baby steps and I knew it would continue being baby steps for a long time.
I had restricted my visiting, I had been so overwhelmed the first day, all I wanted was my mum, I even stopped Stu coming up one day as I couldn't face him, I felt like such a disappointment, I should be happy, I should be pushing myself, but no all I wanted was to rest. I was suffering from being in icu, I had post traumatic stress and I was on diazepam for my anxiety and citilopram an anti depressant. I never thought I would need anti depressants but the trauma had truly shaken me. I felt fragmented and couldn't make sense of things. I finally had a voiceinator put on to my tracky once I was just using my nasal specs with very little oxygen. I talked a little, but then felt to tired to continue communicating, it was really hard just to get the words out. Eventually I talked more and more, but my silence was also because of my depression and despondency. I started to wade through my thought and fears, asking about my time on ecmo.
I had a few more visitors but kept it to my Mum in the morning, Stu in the afternoon and My dad and Step Mum in the Evening. I was still in and out of sleep, tired by doing simple things. I was hungry and I wanted to eat, I'd watch food adverts longingly. We started to introduce water, I tried a sip whilst sat on the edge of the bed, It was ok, It went down the right whole, but my tracky made me feel uneasy and after every time I drank I felt like I had to be suctioned through my tracky, I was worried It was going into my lungs, It wasn't, but I was still very confused.
I started drinking squash, then eating ice lollies. Slowly I was persuaded to try yogurt and soup. Then more solid but still mushy food.
|Rehab, i had to learn to feed myself, sit up, |
use my arms and legs, walk with the zimmer
|They had me on the bike quickly but this smile was a little bit forced,|
I hated it.
I then started to move around my room, with out the zimmer until I just decided actually I don't think I need it. walking anywhere got me very tired but once I was rid of the zimmer frame I felt like I was gaining far more energy. Then I decided it was time for stairs 2 days earlier then I was suppose to. Me and Stu went and tackled the stairs.
It took alot for me to get rid of my depression but having a shower and knowing I was going to be out of hosp really lifted me, having my chest drains taken out after 4 and half weeks was amazing, the day before I was suppose to go home, the shower the next morning the first in 6 weeks. I was on cloud nine.
But that day I had a blip about a liter of fluid was sitting between the lung cavity and squashing my right lung. I was devastated. I would have to have another chest drain put in under local no sedation and it was going to hurt, i was shaken like a leaf as they inserted the tiniest pigtail drain, but right into my back. Sleep that night was horrible, I was in agony and unimpressed.
The next day I waited, trying not to get excited, finally I was allowed home. Amazing!!
Stuart drove me out of the hospital, with the documentary team filming. I stayed at my dad for 2weeks with appointments at harefield twice a week.I walked everywhere, building up my muscles, shopping, cinema, seeing family who live in London. It Felt amazing, my breathing just got better and better, the more I walked the better I felt. The aches of rebuilding my muscles killed but I had to push on. The first few week were important I knew that. My reluctance of the first few week was gone and now I was ready, ready to re engage in life, plan what I wanted to do next and think about my list of things to do.
Im now home home, back with my kia and i haven't stopped all week, I even went canoeing. I can't wait to go swimming and start building up my for my charity cycle ride, which I think will be in september next year. From exeter to harefield over 3 days.
Finally to some up the big update, I'm so happy to receive this gift of life, I can never explain how amazing it is each day. It was hard to begin with, but when you get to where I am today you know you'd do it all again if you had to just to get this ounce of freedom, sense of life, I'm so happy happy happy.
|Me canoeing with friends and kia.|