A whole lot to update

 
So I drove down to my Dad and Step Mum Nicky's on Wednesday. I had had some awful new that day that my nephew Lewis, my Eldest brother Lees baby, who's nearly 4months old, was sick and in peter pan ward Hillingdon hospital. This is where I used to go for my CF care as I used to live in around this area till I was 9, So me and my Mum who came up with me made our way straight to the hospital. My Brothers Children Nathan and Amy, Philip and Lewis were all there and I hadn't seen Nathan and Amy in years. It was so nice to see them and they still remembered me which I was surprised about, or whether they just knew a lot about me from my brother so they said they remembered me. Either way it was so nice to see them.

Lewis Has failure to thrive, he tastes so salty if you kiss him, he's vitamin D deficient and showing signs of liver problems. He was having a sweat test for CF despite having the heal prick at birth. My brother is a carrier, but his partner had never been tested despite telling her GP about Lee carrying the CF gene. I was so worried and felt devastated at the thought that he might have CF, I felt so drawn to be near him, feeling that maybe I'm the only one who really knows what might lie ahead of him. I'm getting much better with babies and I'm enjoying auntie cuddles with them (don't misunderstand me I am still not maternal) The tests came back negative, I'm so happy about this, but there’s still this nagging feeling. But I saw my old CF nurse form here who I am still in touch with and she said it was very negative. Despite this, there is still something wrong with him, I just hope he’s better soon and it’s nothing serious.

Peter Pan ward is the last place I saw Debbie, It was nice and upsetting at the same time.

Wednesday night I went and chatted with the lovely Sophie, she is only 3 weeks post TX but is far more together than I was at this stage. Here's a pic of us together. Doesn't she look great! Sophie is only 17 but she has a chance at life now.

Clinic on Thursday, I did my lung function 68% fev1 and 77% fvc it was 97% and 104% in last transplant clinic, I knew they would have to bronch me and sort this out asp. I was happy that the results reflected the same thing I had been experiencing in Exeter as I didn't want to be sent away for it to keep happening and not get sorted (camera to look into the lungs and take samples of tissue for rejection and wash out and flem or plugs, these are very beneficial post TX but not very successfully pre TX CF). I don't want damaged lungs again. I came back the same night for a bronch the next day. On re entering the hosp there were lots of fireman and one eyed up my mum and asked if she was ok, the silly women said yes, half way down the corridor I said 'why did you say that we could have done with a hand', 'oh yea could have bagged a nice fireman' she replyed as she turned round to continue to walk a wall of fireman were walking toward her, I have never laughed so much, we then met one of my nurse on the way, but I started laughing so much I was coughing really hard and then vomited from the irritation, I felt like my throat was closing up and kept vomiting and struggled to breath, I had already vomited 4 times on the way there due to coughing. The nurse rushed of and got me a wheel chair and wheeled me to the ward, I was put on 02 for a few seconds, My sats are still good but it was a horrendous coughing fit and my throat was closing up due to the amount I was being sick.

Friday, ready to be bronched.

It was possibly the worst Bronch I’ve experienced, I'm pretty sure I woke to them removing the scope and remember being very sick, I also remember coughing up a fair bit of blood. I had 02 on this is very common post anaesthetic and bronch thought, but I hate the leash. I felt sore

I had to have hydrocortisone as my throat started to close up straight after the bronch as the scope they used was HUGE, the secretions in my lungs were soooo thick, they needed a large scope otherwise they blocked the bronchiscope. The doctor came to see me a bit later and said It looks like a fungal infection and we were starting variconazole, also I needed to restart dnase, at which i said I'm still on this and did tell you yesterday, so we’re adding in hyper tonic saline and lots of bronchial dilators.

A few hours later and I was much better.

Saturday I was allowed out and spent the day with my step mum, did a bit of shopping in the lovely sun and bought a new sun hat to shade me as I'm not allowed in the sun due to immune suppression can cause a higher rate of skin cancer and I'm also on 2 drugs that when you just look at the sun you burn.

We also went for a walk around Ruislip lido, this small slop here I struggled to walk up post TX, for the first time I could breath but my legs were sooo weak and I'm proud I did walk up it, it was a huge achievement at the time, But now I can easily walk around the whole of the lido in 30mins at ease, I have come a long way.

I also spent another lovly day with her today and went and saw my dad.

I still have so far to go though, to become the person I want to be, the things I want to do with this great gift. I may have a small hurdle at the moment, but I will overcome it and this wheezing breathlessness with go away. I won't let it stay. The reason I want to do this, one because I love life, two because I want to achieve so much, three because I want to do it for my donor, four for all those who don't get this chance.


My beautiful friend mad's

Mad’s, is a brilliant girl I love her so much, her sense of humour is purely kick ass and she is undoubtedly a fighter. At the moment she is fighting for her life on ECMO, unable to have a transplant. I know ECMO is a horrible place to be and if you asked me if I would do ECMO again I'm not sure, not now I know what it’s like I don't think I could do it. So my sleeping beauty is a fighting battle not many understand and if she does by some miracle pull through, it won't be to a magical world of possibility that I woke to and even then it seemed bleak, it will be to the same pain, agony and suffering. I love her and I don't want her to be in pain. But I don't want her gone either, but that's for my own selfish reasons. I wish I would wrap her up and keep her forever. But that would be wrong. All I can say is mad’s do what’s right for you. I love you forever, the short time we were friends I felt like you understood me like no one else and I think I understood you to because you had been through some of the things that very few understood. Thank you for being my friend. 

Also Stuart,

I found this picture of Stu on his profile, it’s not quite how I knew Stuart but I think it’s a small window of time where he'd want us to remember him by. When he was well. I knew Stu since about November. He was declining after his transplant and unfortunately never recovered. He had a small window of time where he got to feel the freedom of life without CF lungs and their limitations, but it wasn't long enough. Stu passed away this morning in Harefield, I could have gone and seen him in ITU but I had this Fungus and I didn't want to share it with him and make him Sicker. We always had such a good banter, I will miss him, but hoope somewhere he is for once breathing easy.

So a long update with lots of thoughts. Tuesday I'm being rebronched and I'm hoping to go home that night to my husband and little girl Kia. I miss them a lot.