Clinic = amazing

Today I had clinic at harefield, I'm 5 months and 13 days post second double lung transplant. Me and stu turned up bright and early and got to spend most of the day with my friend Emily assin, her baby Sophia and sister Abbey. Emily and Sophia visited regularly when I was in rejection and Sophia would cuddle up with me while Emily made sure I was fed, watered, pain free and calm. So as you can tell already these visits were very special to me. Emily is 7 years post transplant and had her baby through surrogacy. Sophia is 8 months now.




Me and Emily.


Me and baby Sophia!

Clinic started with blood, an achievement in its self, my veins are now accessible and bleeding well after a well earned break. Yep 4 1/2 months free of un planned hospital admissions, iv only been in for a couple of days for planned bronchs! This feels amazing to me!

Then lung function, my fvc = total capacity = 88% and my fev1 = amount I can blow out in the first second showing how well your lungs are working = 96% so I can blow out 96% of 88% in the first second = 100% amazing!

I them had a 6 month exercise test, walking for 6 minutes I covered 570meters the most my physio had personally ever seen! Which again is amazing!

Also over the last month or so my blood sugars have been playing up first my insulin need went up dramatically, I tried incredibly hard to tackle this, which resulted in a fair few hypos and now after going back to the gym and trying to cut down my carbohydrate intake iv been off insulin for two days and still managed to have a hypo. Obviously a hypo isn't good but it's really something that I'm off insulin I now just have to get the right amount of carbs in to keep my blood sugar stable. So that's pretty.......amazing.

The only slight issue is my white cell count is to low and so are my neutrophils. I have stopped a medication and will have to keep an eye.

I'm really enjoying life and feeling like things are going in the right direction. I'm so happy and thankful it's positively sickly ;-) I'm now on my agents website and waiting for the work to come in, which will hopefully result in being able to leave my job at next and focus full time on public speaking, tv presenting and get back to teaching pole (once my garage is converted in to a studio).

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And so the ball just kept rolling

I know this is over a week late really but I'm here to update you all on how clinic at Harefield went on Monday last week.

Well it was a long old day to say the least, 6am knocking at my front door, tap tap, tap, I had forgotten to set the alarm. The first time ever I get hospital transport and I forget to actually get up. I ran down stairs in my dressing gown and told the driver I would be ready in 10 minutes, luckily I had indeed had a shower the night before got my clothes ready to put on and my food for the day packed. So running round getting dressed, I did my hair up in a slick donut Hun. Pristine and easy, make up in a bag, I would be putting make up on whilst in a moving vehicle! (I did not understand how hard this would in fact be!) and food thrown in so I wasn't quite 10 minutes but 15 isn't bad when you've just woke up!

So the journey was long, we went via Southampton for another pick up several hours later we arrived, I'm just glad the company in the car was good, otherwise it would have dragged!

I felt particularly nervous about this appointment, sometimes you can build things up in your head, bigger than they actually are. Possibly what iv done over this while fundoplication operation. But anyway my lung function has been a bit lets say squiffy and I had a heap of questions about this operation, in fact a huge sheet, not all for Harefield as there not the hospital doing the operation but they can certainly answer a lot of them. So I had bloods, lung function (which wasn't as bad as it had been(yay)), x-ray, then we lunch for a bit and go back, by this time tiredness was setting in and in the hot environment of the hospital I was falling asleep.

I was called in, a doctor I have never met before, although he assures me he knows me as he was at a talk I did on transplant and organ donation (humm I wonder whether he's another stalker(only joking)) we sit down and the first thing he asks is have I had it, had it, had what? Had a baby? Did I look pregnant? No the op, did I have the op, humm straight in there with that are we, interesting. So I fidget in my seat uncomfortably and tell him that I actually really don't want the op as the surgeon scared the living s*** out of me, I blurt out all my fears and uncontrollable thoughts and he steadily looks through all my information, with my one big question, do I really need it? Well he explained the risks, which I knew already, I wish doctor would ask that before explaining away, a simple, do you know the risk of not having the operation if you do indeed have reflux? I could say yes then 5 minutes wouldn't be wasted of me going yes I understand that. I sit and go through the reasons I'm worried about the op, such as open surgery being a big op, with huge recovery times, iv just got recovered from the last one, yes al be it slightly more major, I also said about affecting my career, well everything.

So the first thing we looked at was my previous reflux test, he said it was positive, this is 2 years ago I had this test, when I was having severe symptoms, before my transplant, in which time my reflux has vastly improved, iv had some dodgy bout after my stomach bug but actually on the whole it's lots better. So we decided I needed to have a retest, also I would need a ct scan to see if I have any signs of chronic rejection from any possible reflux, then a lung biopsy to also check for rejection. He conversed with my consultant and came back at which my consultant had said they were surprised about the possibility of open surgery as they hadn't realised my former bowel surgeries and agree that they should retest first as open surgery poses many more risks, including infection due to weakened diaphragm and intercostal muscles.

So I heard what I wanted to hear, if the tests come back and If i need it then fine. Ill be straight In that operating theatre. The tests are all to be carried out immediately so that if there is reflux we won't be delaying the operation to much and no further damage will be done, iv also been prescribed higher doses of meds for reflux in which will prevent it as much as possible.

As for my lung function they weren't all that worried.

So that was it, the big appointment I was nervous about, I had no reason to be.


I will be writing a blog on a few other catch up things but just to let you all know I will be on itv west country today (Tuesday) at around 6pm it will be available on the Internet and ill post it here. It's for itvs 'from the heart' campaign supporting organ donation. It's an amazing step in the right direction and I'm glad to be a part of it and I even got to introduce and sign off my own piece a small step toward TV presenting.

So I will leave you all now, hoping all my readers are happy and well and if not I wish it for the future x

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Harefield, fundo operation, Neil and thought for Kerry

I have been rather quiet everywhere, on Facebook, twitter and even here. I have needed some breathing space time to just be me. I have to say I think it's worked, I feel so much better inside myself. I have thought about my life inside and out. I started to think about what I actually wanted and what was stopping me, in conclusion I decided I didn't want to live this life where I'm struggling for money, bored out my brains. I came up with a ultimate career goal and smaller ones that will help me get there. I decided I love teaching pole and love pole but as a main career it's to stressful, people cancelling on you all the time, never knowing what your income is from one week to another, it was zapping all the fun out of it.

Thinking about what sort of lifestyle I want, what makes me happy and what I enjoy, I decided I would like to be a presenter, I think my background in media has prepared me for the highs and lows. I have contacts in this industry and thinking about all the different aspects of presenting there's not many areas I don't like. I mostly love public interest stories and journalism side. So to get to my main career goal I have lots of little goals, first being, get a part time job on top of pole to supplement my low wage, well done that, I start of Friday with a temporary contract with next in women's wear, which I'm looking forward to. Next goal, a portfolio and show real, both of these I'm organising. Then there's also contacting all my contacts which iv done and had some feed back from. I know this is going to happen over night but I know I can do it.

So other things I've been up to, Iv been up to London for Harefield check up where everything's all well, I was prescribed a drug for nerve pain that's been agony, but good to say that's all sorted. I also had a appointment at st Mary's for a operation I need, I have had bad reflux for years, before transplant and now after, so they have decided to do a fundoplication, basically wrapping the opening of my stomach with flesh from the stomach, by pulling it up and around.

This is a very common operation post transplant. It's done through key whole and is a minor op. unfortunately mine may not be so minor, it turns out that due to various stomach ops I have had micolium isleus and appendix, I may have a lot of scar tissue, they think this because of all the blockages I get that the scar tissue may be one of the reasons. If they can't do it through key whole they will make a scar from the bottom of my sternum to my belly button. A substantial scar. I was devastated to be honest, I take pride in my body and my looks, I don't think there's anything wrong with that, I have near 40 scars now, I get over them each time a new one appears but for some reason the idea of this one really upsets me. I hope that it doesn't come to this. It's strange though my transplant scar never bothered me.

While I was up there I took the time to catch up with friends and saw Neil who's doing amazingly and on the last day I said goodbye had the best smile on his face. Transplant is no easy journey but when you get to where your going its amazing.


This is a picture of the scrap book I made Neil, it's one of the hardest and best presents iv ever done for anyone, following his journey from his call to when he gets home, leaving him space to put other stuff in. There's spaces for firsts, first Christmas, golf game post transplant.

All my Christmas decs are up and I've been baking. Feeling festive.

I'de also like to leave you with one last thought, while your wishing
for those pair of jeans for Christmas, or new straighteners. My friend Kerry thorpe is wishing to make it to Christmas, she is wishing for her call to come. Without that call we don't know how long Kerry will survive, so when your making your lists for Santa please make sure you fill out the organ donor form and get all your family to, when your making your Christmas wishes, make one for Kerry. She is now suffering regular respiratory arrests, I went through many of these and I cannot express how scary they are because you are literally staring death in the face.

Stay strong Kerry we are all thinking about you xxx


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