Hospital... Where It All Went Wrong...

As many of you know I attend the Cystic Fibrosis Unit at The Royal Papworth Hospital. If you have read my previous post then you will also know that I am due to start an innovative treatment called Orkambi!

So I headed to Addenbrookes to have a Periferally Inserted Central Cathetar (PICC Line) inserted. It didn't go exactly to plan and was difficult to get in, but they managed. I had a call from Papworth on Thursday to say they had a bed for me on Friday, only my sister was ill so couldn't have Ellysia. I ended up taking her to the hospital with me, starting the IVs and coming home for the weekend, with the aim of returning on Monday. I had awful weekend, and then came to Papworth as planned.

 

On Monday evening I started to get a lot of pain in my arm and it started to swell. The nurse stopped my IVs until a doctor could see me. The next morning I went for an X Ray, I don't know what that showed but I was then sent for an iltrasound on my arm. They discovered a blood clot the entire length on the line (15cm)

I had it removed that day and waited until Tuesday for the next plan. No access meant no IVs. A blood clot meant anticoagulant meds. But they wanted me to inject them into my stomach every day... I can't deal with needles so I said I didn't want them. They said I had the option of tablets instead, I need to be on them for 6 months but I can't take the oral ones with the Orkambi. This means that I have to push back the new treatment for another 6 weeks!!

It's an unfortunate set back but I need to sort these other issues out. I will start the Orkambi, but it's just going to take time! Thank you to the people that have supported me through all the problems I've had recently! I may not show it, but it's very much appreciated!! K💖

The Weight Of The World On My Shoulders...

So previously Ellysia never had a relationship with her dad. I always felt guilty. Like it was somehow my fault. It wasn't. The situation was just difficult. But...

I am now in hospital for 2 weeks to start the new drug I spoke about before, and Ellysia is finally going to spend some much anticipated time with her Daddy. I hope they have a fantastic time together and can start to build a bond with each other! Words honestly cannot describe how pleased I am that this is finally happening!! 

Ellysia has some amazing family that love and care about her and I will never ever stop them from doing that. I spent my entire life moving from family to family, not knowing my parents and I don't want her to have the same. She has the family there so why should I take that away from her? Family is one thing that is so important and means so so much to me!!

Ijust hope that she grows and can see how much people love her. she will probably be a little rascal at time and we will more than likely fall out at some point in our life together but what mother and daughter aren't like that? K💖

The Wonder Drug!!

A New Start?

So about 2 months ago, on 12th Januay 2018, I was an inpatient at The Royal Papworth Hospital, Cambridgeshire, England. I sat in my room with my consultant, Dr Helen Barker and a specialist nurse, Lyndsey. In front of me was the orange Patient Information Pack for a brand new drug. I was about to sign the consent forms for me to start this AMAZING new treatment. I was scared. I was worried. I had some questions. Who wouldn't feel like that, right?

Let me tell you about:

ORKAMBI

So What Is It?

Orkambi (ivacaftor/lumacafter) is the second of drugs like this to be licensed for use in people with Cystic Fibrosis. Although it is not currently provided by the NHS, you can only get the medicine on 'compassionate grounds'.

• Orkambi treats the DeltaF508 mutation, which around 50% of people with CF in the UK have.
• Data has shown that Orkambi can slow the decline in lung function by 42%!
• Orkambi is a combination medicine, made up of ivacaftor and lumacaftor. Lumacaftor helps get more proteins to the surface of cells in the body, and ivacaftor helps the chloride channels in the cells to operate more effectively. The combination of these two things helps to keep a healthy balance of salt and water in the organs – particularly the lungs. Orkambi is manufactured by a company called Vertex Pharmaceuticals.

Why Isn't It Available On The NHS?

• According to the 2014 UK CF Registry Report, there are around 3,000 people across England, Scotland, Wales Northern Ireland who could benefit from the use of Orkambi.
• Orkambi has been licensed for use in the UK for people with CF over the age of 12 who have two copies of the F508del mutation. The National Institute for Health and Care Excellence (NICE) has rejected its use on the NHS on grounds of cost-effectiveness and a lack of long-term data. Although they do recognised Orkambi as an important treatment.
• Orkambi is currently only prescribed to patients who fulfill a number of criteria.

5th March 2018

I am currently waiting to be sent to Addenbrookes Hospital, to have a PICC (Peripherally Inserted Central Catheter)  line put in. I will then be admitted to The Royal Papworth Hospital again by the end of this week. There I will start a course of Intravenous Antibiotics... 

Towards the end of the course I will start taking the Orkambi. It really does scare me. Without a single bit of doubt, I WILL feel absolutely awful. I will be more breathless. I will be tight chested. I'm going to feel so worn out.

BUT! If I can get through the first little bit, then this medication will almost certainly make my life a bit better!

I'll put up a new post when I am in the hospital!

K💖

Just Pick Yourself Up And Carry On...

The Truth About My Postnatal Depression

They tell you to get on with it. They tell you to carry on. They tell you to keep your chin up... but how easy is it to actually do that?

How Does Postnatal Depression Affect Me?

I struggle daily with EVERY aspect of my life. Being a new mum. A single mum. With a life threatening illness. A very small support network (for which I am ever grateful) Every service you can think of being involved with Ellysia and I. I feel like shit every day. The tidying up builds up. The washing builds up. The washing up builds up. Because my mind tires me out so much I just don't have the energy to do these things every day.

  

It’s so tough. I can’t cope. I don't feel like  cope. I cry EVERY DAY. I wish things in my life had been different, I wish some things were different now. But I push through it. People tell me I’m strong. I'm not strong. I’m just doing things because they need doing. I have no choice.

On top of all of that, my head tells me one thing, my heart tells me another and I get so confused about how I actually feel and how I’m being told to feel. It’s so so tiring. All I want to do is sleep. But I can’t.

A Day In The Life Of Me

This is what happened to me on what I can honestly say, was the worst day I've had since Ellysia-Jess was born...

I felt so guilty. I went to bed at 4am Thursday morning, I just couldn't sleep because I had so much going through my head. Myself and Ellysia-Jess were in bed all day. From the moment she woke up. The lady from mental health knocked on my door. I’d forgotten I had an appointment with her... the house was a mess. I was a mess. Ellysia was up in my bed wide awake, crying. I brought here down, (It would have looked bad if I left her, wouldn’t it?) I didn’t even speak to the lady. Apart from a few words here and there. Watched my friends live video (2 of them actually) while she was here. I was so rude to her. I didn’t even care. I just sat crying. Every time she asked a question. I gave the answer ‘I don’t know.’ I did know. Of course I knew. I just didn’t want her here. I didn’t want to talk about my emotions and feelings today. Anyway. She left. (Finally!) I went back up to bed. And there I stayed. Until gone 8pm. Hadn’t slept. Just lay there. I spoke to two friends all day. One was supposed to be coming to see me. He bailed on me. The other is from the other side of the world so can’t do much but talk to me (which does help a little) I didn’t know what is wrong with me, but I’d never felt this low before...

That was one day, the worst day, I never want to feel like that again. I felt like such a horrible person and a horrible mother... I had so much to do but I couldn't be bothered... I did the minimum, only the things that were 100% necessary. 

So, What Do Us Mummies (And Some Daddies) Want To Say To You?

 If you send me a message and I don’t reply. Don’t keep messaging me. I’ll reply in my own time. Don’t assume it’s you. It’s probably not.

If you ask if I wanna meet up and I say no. Don’t be offended. Don’t assume it’s you. It’s probably not.

If you call me and I sound angry or upset. Don’t assume it’s you. It’s probably not.

If you come over and I don’t talk or I am moody. Don’t assume it’s you. It’s probably not.

If you try to help me and I don’t seem to accept the help. Don’t assume it’s you. It’s probably not.

We barely have the energy to do simple, daily tasks.

Don’t get mad at us. It’s the last thing we need. Please let us have the space. We will contact you when we're ready. By all means message us. But don’t expect a reply instantly. By all means invite us to do something. But don’t expect us to say yes.

Postnatal Depression has a firm hold of me, I can’t shake off the grip that it has and it’s awful. I’ll get there eventually but everything takes time, right?

 K💖