Transplant blog

Well I know its been a long time since I have blogged, but the words don't seem to come easily. Come around from a haze to be told I'd had a lung transplant and all my dreams had been answered wasn't as uplifting as you'd think, I had been through hell and back on ecmo in and out of sedation, ventilated and had a tracky fitted. I had come to peace with the idea of dying and I had prepared myself because transplant didn't seem realistic anymore. I was dying.

 

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 2 false alarms. Then on the 10/7 completely sedated with my family had preparing for the worse. I had hours left. Then everything changed, there were a set of lungs available Sunday night. My family waited for test after test to come back and right up until I was taken down no one knew If they were going to take the chance on my frail and dying body. 11/7 I received the gift of life.

Waking up confused, in pain and suffering from post traumatic stress from hallucinations and vague memories of my time on ecmo. The idea that id had a transplant confused and scared me. Why was I still being ventilated through my tracky? Why was I in so much pain? Why did I feel so ill and tired? I was scared. It took alot of people telling me I had new lungs for me to believe it. But still I felt so despondent and lost, fear had engulfed me and I still felt like death was lurking around. I didn't know how to get through this, how to build my strength, I was unable to tell everyone how scared I was as the tracky prevented me from talking. I was overwhelmed with the sense of guilt for my donor. I knew before transplant what organ donation ment and the idea was easier to deal with then, I had logic on my side. Someone had already been determined brain dead and there organs were there to save others because that's what they had wanted. But after my transplant logic was lost and all I felt was a deep grief for this brave person who had saved my life and I didn't feel worthy.

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.

I also stood and marched, I used a zimmer frame, then I was sitting out of the bed, they were all still baby steps, which left me knackered. I needed help to stand and supporting the whole time.



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.





yes very exhausting, 1minute in with no Resistance, i was very weak. Some of my fav people here. I didn't like my physio to begin with but i wouldn't be anywhere with out her, fantastic nurse as well. helped me through things emotionally as she had had a brain tumour and knew some of what i was dealing with.

My mood was picking up for short periods of time. But I had a catheter and what I describe as a poo bag, these made me very uncomfortable. I developed C diff from the amount of antibiotics I was on. My stomach swelled till I looked 12 months pregnant, if there was such a thing. It was very painful. Making me more uncomfortable.

A week and a half post transplant I was moved to E ward and it was like a weight had been lifted, my tracky was removed, my lungs were cleared a few times by bronch and my breathing was getting easier. The nasal specs were taken away from me and I was breathing on my own with sats of 98-100 something I had never known! I started a slow walk up the corridor and just kept going till the end slow and steady and with my zimmer frame. My catheter and poo bag gone, but the two chest drains stayed with me. I then went outside for the first time in weeks and weeks.

    



Feeding myself



 

 

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.