My CF and Transplant Story (GP)

I’m Sasha and I have Cystic Fibrosis. I was diagnosed with CF when I was just 5 days old due to being 6 weeks premature and having a blockage in my bowels. I had a pretty healthy childhood, was a chubby little baby and I was always active. When I was 8 years old, my weight was so severe I had weight 2-3 stone and I was struggling to fight infections so they decided I needed a food tube. I had my mickey button until I was 14. It wasn’t until I was 14/15 years of age when things started to deteriorate and started changing my life slowly. I was so fed up of living the life I was living, I started missing medication and wasn’t keeping up with chest clearance. It got the better of me. When I went into year 11, I picked up a little but it still wasn’t the best. I was in hospital very sick when my GCSEs had started and was in hospital for the period of the time from start to the finish of my GCSEs and unfortunately I wasn’t allowed to re-sit them so I left school with no GCSEs and all my coursework wasn’t in count with it and I was proper gutted. I had a Saturday girl Job in a hair salon from year 10 and I started a apprenticeship and I was over the moon. Unfortunately after 3 months of working my health was deteriorating again where I had to stop working and going to college as my doctors thought that was best as my lung function had dropped within the 30s and I was having more frequent IVs.

In June 2016, I become very poorly and we wasn’t sure what was causing it, I had been on IVs for a long time and every time I started having my IVs my temperature would rise and I would uncontrollable shakes and shivers for 15-20 minutes. We finally had results from blood tests and my white blood cells were low, on the dangerous side. I was admitted into hospital straight away. By the time I had got the hospital that evening, I was worst and my condition had deteriorated bad. Every time they were putting anything through my line and portacath, I was puking and shivering and shaking again. Even started to puke blood, nothing but blood. Throughout the night I was deteriorating bad and was moved onto high dependency ward and being monitored 24/7. The next 3 weeks flew by and I don’t remember what went on through those 3 weeks. I had a port infection which got so bad I had a whole body infection everywhere! Fungus was growing on my lungs and I was in a bad way. It took me a year to recovery fully from this awful infection.

Unfortunately due to that bad line infection, my lung function was stable around 30. I transferred to adults in September 2016. Because of how bad my lungs become with that one bad infection. I was on constant IVs from November 2016 and that lasted until July 2017. I was growing so many different infections which was declining my health faster every infection I got. I tried a trial of the orkambi drug in November 2016 but didn’t work for me because I was too poorly. It dropped my lung function to 16% and my body was just too weak to give it a proper trial run. So in December 2016, my doctors thought it was best I started speaking about getting on the transplant list ASAP and it’s was becoming more of emergency. I was seen pretty quick and in June 2017 I was officially put on the transplant list and it was just a waiting game from then. I still achieved to pass my driving May 2017 and I turned 18 in the June of 2017 and then my health started getting a little better. And I managed to stable my lung function to 30-35%. I was buzzing as it was stuck in the 20s for a long time. Then in September I was suspended from the list because I was healthier and was seeing my transplant team every 6 months. Although I couldn’t go back to work, my life felt more normal and I felt more like an 18 year old girl.

This was my life.

In October 2018, I was due to see the transplant team for my 6 monthly review with them. So here’s the routine , bloods, chest x-ray, echo, lung function, height and weight in the morning and then in the afternoon you see the doctor. When we saw the doctor and we thought maybe I would be took off the list completely because I was healthy and stable and I didn’t think I need to be on the list anymore for hopefully another couple years. Well actually it didn’t go like that. She basically told me and my dad, because of my sizing and anti bodies and everything else, it would be a longer wait. The average wait was 18 months and mine was double that because the most common lungs they receive is big biker man lungs who have been involved in bike accidents. If it wasn’t for that she said because of how stable my lungs have been and my lung function was, she would take me off the list. She sent me away for 3 months to have a proper think about what I wanted to do. So in November 2018, I asked my local doctor about giving orkambi another go and I did. I was stayed in hospital for 4 weeks and was slowly put onto the full dose. My body and strength was strong enough to handle the knock back orkambi can cause at the beginning. I managed to get my lung function to the higher 30s and was more stable. But I was still making the decisions of going back on the list for good.

In January 2019, I was due to see the transplant team for my decisions about going on the list for good or coming off it completely. Unfortunately, I had developed pneumonia so I wasn’t able to have my clinic but I was nearly admitted into a hospital In London as I was so poorly requiring oxygen and had no energy with a high temperature but I saw my doctor. They managed to prescribe me oxygen and I was on the route home to my local hospital. My transplant doctor had a conversation with us before we left and said that my time is running out, I need to get on the list now before I leave it too late. So from that day I was active on the list!!

In April 2019, I was sleeping and heard my phone ring at half one In the morning. At first, I didn’t answer because I thought it was one of my friends ringing because they were drunk or something but it rang again. Again, I ignored it and messaged the number saying who is this. This number then left me a voice message and it was a transplant co-ordinator at Harefield Hospital. Within 2 minutes of receiving this voice message the number rang again. I instantly answered. She called to tell me there was a possible donor me and if I wanted to take them. I was so overwhelmed and feeling all different kinds of feelings. She gave me 15-20 minutes to make a decision. I rang my mum and went straight up to dad and woke him up. After speaking to everyone I needed too speak too, the co-ordinator rang me and asked me if I made a decision. Of course, I couldn’t decline it with knowing this could be my only ever call. As soon as I got off the phone. Me and my dad were in a rush to sort ourselves out. Me, my boyfriend and dad was on our way to London, Harefield from Plymouth and it was a long drive. Especially with all the feelings and emotions I was feeling. The closer we got to London, I still had no call to say it was a false alarm.

This was my first ever call.

We arrived at Harefield about 6.30 that morning. And that morning felt like it was just carrying on and on and on. About quarter past 7, the co-ordinator come in and said that everything is looking really good and promising but wouldn’t know for Definite for another hour or so. That hour felt like a lifetime. I was feeling so sick and so nervous. Another went by and the lungs were still being looked out and tested to make sure they were 100% perfect for me. But still, everything was looking promising. About half 9 I was starting to see everyone. They did my bloods at about 8 but before a surgery like this, you must see everyone. So I saw nurses, co-ordinators, doctors, surgeons, a anaesthetists. I had to have a shower with a specific type of shower wash and I had to fill and sign in papers basically consenting to the risks of the surgery. Including death. After that was done, it was just the waiting game on the lungs and to see if they were a match or not. At 11oclock, the co-ordinator walks in and says the lungs are looking a perfect set and are a go, they are on the way to us now to have finally checks here!! AT THIS POINT I DIDN’T KNOW HOW TO FEEL! Within 45 minutes the lungs had arrived. Normally, they do checks but the lungs were that amazing and perfect, they didn’t need final checks. I WAS GETTING NEW LUNGS! We was told i would be down by 12:30 but it was just a wait on a theatre room. At 2pm, they come in and say are you ready for your new lungs. I was going down to theatre and that’s when it hit me. I was getting my new lease of life and my new lungs.

Me, my family and my boyfriend were waiting together. It was time to say goodbye to the people who I loved the most in my life.

My surgery took 9 hours. And everything went successfully. I was told before transplant I would be asleep for at least 3 days but me being me I woke up within 12 hours after surgery. I was in ICU For one day and was being moved to the chair from bed within 24 hours from waking up. I was moved to the normal high dependency ward on the Friday. And everyday was a better day. I had 4 chest drains and an epidural in my high back. I was on 6 different IVs and 3 different oral antibiotics to make sure none of my old infections in my old lungs got into my new lungs. Within a week I had 2 chest drains removed and was getting stronger everyday. My last chest drain was removed on the 11th April and I was discharged completely and came home on the 18th April. The worst thing about my experience was definitely the chest drains! And the night my epidural was removed was a horrible night. But other than that, my recovery was pretty ace. Today, 7 weeks later, my lung function currently sits at 76% and I never have any coughing fits, I’m never breathless and everything continues to go up and up and up. I’m doing so much exercise now which I love doing as I don’t get tired, achy or have to sit down for a break. I feel like my life is just beginning and it’s all in time for my 20th next month. It was weird to begin with because my normal was gone. And I was just like everyone else. Breathing easy. It’s insane!