10.06.17 – Bulk Up

“You are not medically fit for transplantation, just yet” My heart sank as soon as the Dr said this. I was a bit taken back by their decision as it seemed as though they were very keen to re-list me yesterday. It almost seemed as if it was a last minute decision by the team. So the plan is to build my weight up by tube feed whilst in hospital. My weight had always been a main concern for them but they hadn’t mentioned anything about needing to bulk me up via tube. I wonder how long it would be until they are satisfied with my weight, so that they can consider re-listing again?

The nurses inserted an NG tube yesterday afternoon, shortly after I received the news about listing. The medical team made it clear that I needed a transplant, and so their decision was to help me get to a safe weight for surgery. I completely understood as to why they needed​ to do this, but didn’t really see it coming. It’s become the norm for me to be underweight, that it was never really viewed as an issue to myself anymore.

Ive started on 30mls feed per hour. It’s not the most comfortable treatment to receive. The tube irritates my nose and the back of the throat, but I’m sure I’ll get used to it. The plan is to keep it going day and night until discharged​. I’ve been told that this will be mid week, next week. I am to not solely to rely on the feed, so instructed to eat as normal in between. Im just going to have to grin and bear it, however uncomfortable it may be. I keep thinking about my friend Kim who is currently tube fed overnight at home. I don’t know how she does it. I just think of her if I start to moan. What a strong and inspirational young lady she is! 

IV Tazocin (antibiotics) and feed. 

09.06.17 – Back on the list?

Sitting by the window in hospital being treated with antibiotics for my first episode of Cholangitis as an adult. I’ve never been jaundiced (apart from when I was a baby) so it was a bit of a shock to witness my skin and eyes changing colour. I couldn’t even mix the right colour foundation to cover it! I didnt look as yellow as some patients so just didn’t bother trying to cover it up in the end. I guess it’s good to let your skin breathe from time to time. 

I’m being looked after pretty well, so I can’t complain. I’ve been in since 28th May and didn’t think it was anything significant. I felt guilty attending a&e as if it wasn’t anything serious. I expected to at least be in for a day or two, but not for this long! I’ve had to continue on a long course of IV antibiotics three times a day. I’m having bloods taken daily to monitor my progress and assessed for possible transplantation​ for the third time. I’ll be receiving the news on whether they want to list me or not, later on today. I don’t really feel as if I’m in need for a transplant as I think I’m pretty invincible sometimes. Maybe it’s because I don’t really see it as a big deal, as I’ve been on the list before. Having this mentally can be dangerous for me sometimes as I find I tend to push myself and over do it. I forget I need to take a step back and really think about how important it is to look after myself.

I do feel as if I’ve been feeling quite exhausted and run down for a while. It seems to all make sense now. My Hepatologist said that there is a chance that the Cholangitis was always lingering, so was likely to flare up at some point. I’m hoping that once I’m over this infection, I’ll feel better than I have done for a long time. Since getting back to work again in November, I found I had been struggling to get through the day. I was worried that I’d be seen as a lazy nurse, even if I felt I had been working to my best ability. 

So seems like I’ll be here until Wed/Thurs next week. Another few days and I’ll be free to roam. I know I’m in the best place right now so will just have to stick it out.

Bloods taken for transplant assessment – about 100mls taken.

12.05.17 – International Nurses Day

Some of my earliest memories when attending hospital were when I used to visit Prof Kelly at Birmingham Children’s Hospital. These were routine appointments which involved weight, height, vital signs (Blood Pressure, Pulse etc.), basic abdominal examination and bloods. It usually took up the full day so my Mum used to stop off at Toys R Us as a little treat. I never remember complaining about going, partly because I enjoyed watching and engaging with the nurses, doctors and assistants when visiting. They always seemed to look so passionate about what they did and always seemed to strive to deliver the best care.

I don’t think I ever had a poor experience as a patient, and always felt valued. It does make a difference in care, when you come across a familiar face, but I do believe that we should all be treated the way we expect ourselves to be. Living with a long term medical condition has definitely helped me become more empathetic towards others when in need. This was noticed by my family and encouraged me to look into studying Nursing.

I passed through clearing and started studying Adult Nursing at Birmingham City University for 3 years. I qualified in 2013 and headed to Torquay to work in the A&E department. This helped me develop my knowledge even further and after just over a year there, I moved home. I knew that having A&E experience under my belt, enabled me to get to my dream job of working with Liver Patients.

I have recently secured a job working on a Liver ward which I’m really looking forward to. I believe I will be able to really empathise with my patients more so than usual as having experienced similar.

Being diagnosed with Liver Disease at a young age was always hard to accept. I always felt very insecure and different to everyone else. I never felt I was able to fit in, so grew up as a shy, timid individual. It did affect me mentally, however without the condition, I’d not have the strength I have today. You could almost say, I’m proud to have Biliary Atresia, and that nothing will change that.

Card from a student nurse

A card received from a student who worked with me only a couple of times last month. What a delight it was to receive that feedback. Maybe I’m doing something right!

Thank you to all nurses, doctors and medical staff who have cared for me all throughout my life. Not forgetting my colleagues and university tutors who have made everything possible for me.

Happy International Nurses Day!

19.04.17 – Routine

Jumped out of bed the other morning, as i felt like doing some Yoga. It’s been something that I’ve recently got into by a few friends of mine. I find it beneficial as a stress reliever and helps wake your body up in the morning, or relax you in the evening, depending on what routine you do. I switched my TV on, got my yoga mat out and followed along with the routine, Yoga with Adriene. Once i finished, i opted for a peppermint tea instead of my usual PG tips, as i seem to make better choices once I’ve done some form of exercise. 

I’ve had a fair amount of time off work as I’ve had a lot of annual leave to take. I’ve been allowed to carry it over past April which has given me a bit more free time to get things sorted and back into a good routine. This involves, sorting my tablets out, keeping the flat clean and tidy and organising my expenses now i have a mortgage to pay for. I’ve also been able to get back on track with my exercise and being able to organise my hospital appointments at the times i want. This week, I’m back working full time, so now that I’m feeling more organised, I’ll hopefully be able to keep up with my routine. 

I’ve always wanted to make my parents proud of me as they have always been so supportive. I believe it’s important to stay focused​ and work hard in order to follow my dreams. Staying fit, healthy, motivated and organised is what i try my best to do. Since I’ve now been offered a new job, and now have the ability to get my career back on track, my parents are over the moon. It’s such a great feeling to know that your parents are proud of you. My mum posted up a photo of me at uni on Facebook, along with a lovely comment.

😁😁😁😁😁 I can’t begin to describe how happy this made me!!! 

15.04.17 – Easter

Chocolate has really never been my thing but i’m going to look into a healthier easter alternative. I still live and breathe a healthy lifestyle and have improved on my cooking skills, but give it a year or so until you can expect an invite to dinner. Ill upload a photo and recipe on what i come up with in regards to the easter treats… or ill just give everyone a boiled egg!

Im still keeping as active as i can, working hard without feeling so drained. In the past when ive tried to maintain my gym routine, its always had to stop after a couple of months due to inadequate energy and/or fuel. This time ive kept it up for longer as ive learned how to maintain the balance. 

I’ve secured a new job which is taking me one step closer to my dream of becoming a Transplant Co-ordinator!! I’m so excited to start, but I’m saddened by colleagues I’ll be leaving behind. They have all been great supporters and have been very understanding of my condition and needs e.g. ensuring im taking regular breaks and keeping up with my tablet routine. They will all be greatly missed, but have promised them that I’ll still keep in contact. 😀

Picked this up from IKEA earlier on in the week. Still yet to try it. I have been taking probiotics for a while as recommended by my dietician. They have really helped improve my digestive issues.

06.03.17 – Hello Again :) 

My blog still gets views and puts me in touch with liver disease sufferers. It’s great to be able to share stories and support others this way and through CLDF. I’m constantly updating myself on info regarding liver disease, so able to understand more about my condition, along with other liver diseases. I’ve been watching YouTube videos of talks presented by my Hepatologist at Q.E.(Prof Hirschfield). If it’s my dream to becoming a liver transplant coordinator, then I need to educate myself as much as possible. 

What am i up to now? I work on a surgical ward which is a nice change compared to a&e. I work with great people and felt as if I fitted in straight away. We are a great team which helps a lot in nursing. 

I’m back at the gym and trying my best to increase my weight and protein intake which is important for a scarred liver. A damaged liver struggles to metabolise proteins so often advised to eat 1.5 – 2g of protein per kg to maintain or increase muscle mass.

It’s my birthday month! As long as I’m not in hospital this time, I’m happy.

Munching on my overnight oats made in my nutribullet at work. 

I scoop protein powder

Portion of fruit e.g. banana or skinned apple

Portion of veg e.g. spinach or carrot

Greek yogurt or almond milk.

Blend, add oats, shake.

Store in the fridge overnight and eat cold in the morning. You can eat it hot but I’d advise to add the protein powder after heating as it changes the consistency.

04.01.2016 – Revalidation

I’m starting to focus on blogging more often as I have more energy, focus and drive to do more. So it seems things are coming together, and to say the least, i’m feeling much more positive these days.

The waiting game continues on returning to work, but i’m hoping to be back late Sept if all goes smoothly. Meanwhile, i have been busy working on my revalidation in order to continue practicing as nurse. Revalidation is a process wherby you’ll need to complete a portfolio and gather evidence on continuing professional development, feedback, hours of practice and writing up various reflection pieces.  I have also been volunteering for a charity which i have supported me throughout my journey with Biliary Atresia. Its such an honor to have the opportunity to work along side with Childrens Liver Disease Foundation. I am currently working on various topics that are more relevant to young adults such as advice on taking out insurance, holidays and storing medical documents. I’ve been learning more about the charity, liver disease and what the charity does in order to fund raise and support patients and their families. I hope to fill in the gaps and update some of their content on their website whilst proving to be of good use to them, as i will be able to provide them with information from a patients perspective.

My parents have now adopted a new cat but they are still warming to it. Its beautiful and my sisters and i are all hoping they decide to keep it. Its not doing itself any favors by escaping over the bank holiday weekend. It ended up finding its way back though, so it cant have gone too far. We have named it ‘Boy’ as we cant really decide on any other name and seems like a good temporary name for it until they decide on whether to keep it.

boy.jpg

I recently attended a close friends wedding. I had been looking forward to it for so long and it was definitely worth the wait as she looked absolutely beautiful. The wedding was well thought out and organised. It was situated at a stunning 16th century manor house in Telford. An all round fabulous day!