Rambling and finished my ivs

On Friday I went back to the hospital to see my team. I had finished my ivs the day before but just as I finished them I literally had a stuffy nose and really sore throat! I now have a dry tickily cough and pray it doesn't go to my chest as I really cant cope with more ivs at the moment! So typical that it happened the day I finished rather than why I was on them so they could help protect my chest if it was to go there.

I had my needle taken out. I always love when it comes out as I can have a lovely bath fully immersed in the water. I the did my blows which I was disappointed in. When I started 2 weeks ago my lung function was 37% and it only went up to 40% on Friday. I feel like I did all those 2 weeks of hard work and feeling yucky on my ivs and its hardly done anything. I usually get back upto about 46% post ivs. I know 6% doesn't seem like much but when your lungs are damaged as much as mine 6% means a lot to me! I cant help it my team always tell me not to focus to much on the numbers but I am a numbers girl. They say to go on how you feel which didn't help on this occasion as I felt like crap still. I am so annoyed about it id worked really hard during my ivs to walk the dog round wicksteed park and back home which is most walk I usually do and was managing it ok. I was proud of myself for doing it and did it a lot during the course so was really hoping for good results. Some times it feels like no matter how hard I try, no matter how much I take all my medication and do exercise, it just doesn't help. My lungs will do what they want and give up on me when they are ready which is a scary prospect. I am hoping my low lung function was down to me having something viral and will pick up next time.

There is a new drug in the pipeline which will help me as its for use in people who have the double DF08 Cystic Fibrosis gene which I do. A drug came out recently in the UK called Kalydeco for people who had a different mutation and has had some great results. This will work the same as Kalydeco for people with my faulty gene. I have put a lot on this as it could help me and potentially slow down my decline if it works for me. It is still in research phase but they are now recruiting for people in the UK to take part in the trial. I need to get in on this but they are not doing it in my hospital damn! Hopefully if it works it will come out quickly. There is some really exciting stuff in the pipeline for CF at the moment and hopefully they can go on to find something which can help all the CF mutations eventually.

Not much else to report haven't had anything amazingly exciting going on since my last post. Neil went away to Scotland for a week on a boys biking holiday so I was home alone for the week. I did well walking the dog all week by myself and we did a few good walks. Was great exercise for me. He is still a bit naughty at times and had me pulling my hair out a few times! But he is also great for cuddles especially when feeling down and poorly and it always makes my day and cheers me up.

Dexter my doggy. (Excuse my foot in the pic we were having cuddles!)

I am also off to Birmingham with Neil next weekend we've got a hotel for the night and are going to Cadbury World, Warwick castle and off out in the eve for dinner and drinks so looking forward to that. Hope I feel better by then!

Clinic and the dreaded iv's

So yesterday I had clinic at my hospital. I hadn't seen my team since I finished my iv's last time about 9 weeks ago. Thats a long time for me but I kind of forgot as ive been feeling ok since the last lot. The weather has definitely helped I always do so much worse through the winter. I was dreading having my port flushed as it had been so long but luckily it was fine! It was an eventful day to say the least as my sister needed a new picc line putting in. (We tend to go hospital together saves on petrol as its a 90mile round trip.) But she needed that doing at a different hospital so we parked at our hospital and jumped on the hospital hopper bus as parking is a nightmare at the Royal Infirmary. So after 2 attempts, 1 in each arm she has a shiny new picc and its bruised and sore. So we head off for the bus to go back to our hospital for our appointment. It was 32 degrees and we got on the wrong bus! So an hour later after going the wrong way and changing buses in the heat we made it back for our appointment.

Dissapointed with my blows. I feel  reasonably ok for how long ive gone but my blows wern't. They were at 37% from 46% after my last ivs. I knew I wanted to get iv's sorted today as there isn't as much room for error these days I did not want my blows to go down any more or I would struggle to get them back up again. Ive lost about 10% of my lung function from 18 months ago so im really on the ball at just doing them even if I dont want to. I had also lost 1kg in weight im now only 45.3kg so not happy with that. I must be back into the 'underweight' category when I spent so long to get me just into the 'normal.'

I really struggle with my iv's these days. Never had any problems until about 2 years ago but now I get very anxious and sometimes suffer panic attacks when on iv's but giving my first dose this time I was ok. I think im finally working through my fear and anxiety and its getting easier. It all started on a normal day when I went to the hospital as a day case to start iv's and finish the course at home. My nurse was giving my meropenum which I have regularly. All of a sudden I felt like I couldn't breathe. It was like a fat person was sitting on my chest I was unable to inhale. I was so scared I thought I was going to die. I had visions of them sticking a biro in my neck as a make shift tracheostomy like you see on the TV! Then all I remember is my sister started screaming/crying and was pulled out of the room. All the doctors and nurses came running in and got me on oxygen. I came around after this and started to feel like I could breathe again. It was bizarre if it had been an allergic reaction/anaphylactic shock I wouldn't have recovered without adrenaline etc. They were puzzled! I found out after that the reason my sister was crying and was pulled from the room was because I turned bright blue. Everywhere on my body I just went blue. It was like all the oxygen was gone scary stuff! Anyway after a blood test which eventually confirmed it wasn't an allergic reaction they found out it had happened to other CF patients in the surrounding hospitals using this certain new brand of meropenum. It has happened since and I can no longer have that brand. Well a long story short I was suffering from anxiety with everything that was going on in general life and hadn't really realised and this just pushed me over the edge. I started to have regular panic attacks whenever I felt scared/worried and whenever I had new medication. (Which is a right pain I can tell you when you have CF and take tonnes of medication to keep you alive.) I had CBT after to try and help me through my feelings and help me cope and it has done but was a very slow process. Im not cured I dont think I ever will be but I can manage it now.

So 1 day in and I feel terrible. Sick, tired and just not with it at all. Want to feel human again soon as I have a double date tomorrow with our friends to catch up before he goes to Afghanistan as hes in the army. And I am praying for nice weather as we want to have a bbq and a dip in her parents outdoor pool. (Not me I cant as my port is accessed boo.)

I am struggling to get up at 6am and do my ivs as im so tired. This is what I have to do 3x a day for the next 2 weeks. This was my breakfast at 6 this morning...

Also below is a picture of my port-a-cath. The device I have under my skin so that I can do my intravenous anti biotics. It is on my side about boob height so when not in use you dont even know its there at all.

Sisters and Transplants

So I am not currently on the list for a transplant. Sometimes people think it may not be to far off for me but I am hoping to prove them all wrong. Nothing wrong with a bit of positivity right? Anyway... So although I am not there yet transplants are a big part of my life right now, they are all around. First and foremost my sister is on the waiting list right now. I have friends post transplant, I know of people waiting, and I know of others who are no longer with us as they didn't get one in time. 

The journey to my sister getting listed for transplant has been tough. Not just on her but on me as well. She is not just my sister she is my best friend. We have been through so much together and we are always there for each other no matter what. I think both having CF has made us closer, we know exactly what the other person is going through and we can go through it together. It does on the downside mean that when one of us is sick it does put a lot of pressure on the other to look after each other as well as ourselves. But I wouldn't have it any other way.

The thing with CF is you can not put a time of when transplant may be an option for you. Some people decline at a steady rate and then transplant is talked about and it isn't a major shock to hear. Others are plodding along steadily and then one nasty chest infection or something else can make them so ill that transplants are mentioned and its a big shock. My sister was not super healthy with her CF. She hadn't been for years but she was 'steady'. Her lung function was low (in the 30s fev1) but she didn't lose anymore of that permanently. Transplant was mentioned 2 years ago as a looming possibility but she was not there yet. But the problem with lung transplants in CF is you have to be well enough to survive one and ill enough to need one at the same time. Its a fine line, and sadly many people miss their 'window of opportunity.'

So we were getting on with life thinking shes ok she has been for a while when that all literally changed. She had booked to go away with her friend abroad for a week and went in for routine iv antibiotics before hand. She didn't get better though and the doctor said that she should't go just incase. Thank god she didn't because 2 weeks later her lung collapsed and she was so poorly. Had she of gone it could have collapsed whilst she was away or even on the plane due the altitude. I have to say that was the scariest 2 weeks of my life. She looked so frail, so poorly. Collapsed lung does happen sometimes in patients with lung conditions and low lung function, but I can honestly say I thought she might not make it. I was so scared. I was by her side everyday in hospital to help her get better. And eventually she did but as we thought she needed to be listed for transplant. The collapse had damage her lungs more and her lung function was now in the 20s. It is now her only option.

And this journey has been tough. She needed to gain a lot of weight to get onto the list which took a while. Its so hard for CF people as most of us have trouble gaining weight and keeping it on but you have to be heavy enough to be able to fight and survive the operation as its so big. So shes now on the list and now we just wait. I know how scared I feel at times so I cant even imagine what its truly like for her. I think she plays it down at times to try and help me. And I play down my feelings at times to not worry her. Its a bit silly when were not communicating how we really feel but its hard when trying to protect a person you care about. But our hospital team realised what was going on and got us talking! My main fears are her getting the operation and coming through it. I truly cannot imagine my life without my little sister. I am positive most of the time but there are times those thoughts work their way in and it is hard to push them out. (Where's that positivity when you need it!) Especially when others who you know through the CF community are passing away waiting. I will need a transplant one day, so me watching her through this journey is going to affect how I feel about it for me. 

On another note I am enjoying our summer (finally!) I am starting to feel a little under the weather, tireder than usual, coughing more, out of breath more. I should be due ivs soon and ive got an appointment next Thursday so ill see what they say. I want to make the most of this sunshine though whilst weve got it before I give in and go on ivs as I always feel run down on them so don't go out and about so much whilst on them. On the bright side my vitamin D levels were low again after the last blood test so im sure all this sun has helped :) May have even helped my newly diagnosed osteopenia.

Sorry for the rambling its been a long few months! 
TaTa for now :)

National transplant week and another CF star in the sky

This week marks national transplant week. The aim during this 1 week every year is to get people talking and thinking about organ donation. The UK is way behind other countries in how many transplants go ahead and something needs to be done to change this. The reality is that 1 in 3 CF people waiting for a lung transplant will die as their are not enough going ahead. This is a scary statistic when one day that will be what I need to survive. 

My little sister, my best friend, is on that list at the moment. (I will blog about this a little later.) So right now my focus is on her keeping well enough and getting that call and a new chance at life. I want those statistics to change not only for her and me but for everyone, their families and friends waiting for a transplant to save their lives. 

Heres the link to transplant week:

 http://www.transplantweek.co.uk/

Today my sister and I were invited to Papworth hospital. This is the hospital where she will get her transplant. They were having a transplant charity event to raise awareness and discuss ways to help many aspects of transplant and the care at the hospital. It was very informative and there lots of exciting things happening behind the scenes which will hopefully improve the currents rates. It was a chance to catch up with many of the transplant team as well as talk to others pre and post transplant. 

(Relaxing after the presentations with a glass of champers and a live band. Of which 2 members are post lung transplant patients. Amazing how donation can transform lives)

There was sad news from the CF community this week where a young girl lost her battle with CF waiting for a transplant. Emma was only 20. I did not know her personally but knew who she was as she went to the same hospital as me. Although we never crossed paths personally I know how well loved she was and what an amazing bright person she was. Her story has affected me, as having CF and knowing lots of others with CF you always find out the good and the bad news through blogs, facebook, twitter etc, so I follow many others with CF although I do not know them personally. It can be an inspiring thing but other times its sad when you see people who have lost the fight waiting for that chance. That's why we need to talk about transplant and get more people to join the donor register. 

The one thing I would say to anyone who says 'yes I want to be a donor I am going to sign up' is don't stop there.  For me the most important thing is to tell your relatives/next of kin your wishes. As if something happened to you the final decision is down to your family and if they do not know you wanted to be a donor they may not allow that to happen. They are grieving  its a horrible time in their life so to make that decision when they are unaware its what you want is very hard. If they know thats what you want it makes it easier for them and more likely for that to go ahead.  TALK TALK TALK about it, We need to spread the word! 

The Beginning

So where do I start... I am Michelle I am 27 years old and I have Cystic Fibrosis and diabetes. I live with my boyfriend, our doggy Dexter and our 2 cats. I also have a younger sister (24) who also has CF. 

I do not let my CF define me but these days I find it takes up more of my life than anything else. I have been thinking about starting a blog for a while now. I know of lots people who use blogs these days as a way of blogging their thoughts, feelings, and sharing their experiences with others. This is my diary. I want to be able to detail my journey and for others to read my experiences.

Growing up CF didn't seem to stand in my way all that much. I had my medications to take but it was all normal to me. But as I hit my teens things slowly started to get worse. The last 2 years things have got a lot worse. My lung function now sits between 35-45%. I have iv antibiotics every 6-8 weeks on average for 2-3 weeks at a time. I do this through my portacath at home as much as I can but will go into hospital for some of my admissions. My hospital and team are amazing and do a great job at looking after me. Transplant has been mentioned to me as a nearing possibility but for now I am focusing on keeping myself well enough to stay away from that right now. It is something I cannot deal or cope with at this moment in my life. Lung transplant is the last resort for a person nearing end stage CF. This is the only thing left which can give you chance of a longer life. It can be amazing but its not an easy ride. 

Life gets lonely sometimes. No one really understands what your going through when you have any illness unless they are going through it themselves. I do not work many hours due to my health and I do not get out as much as I would like to. So I don't meet many new people. Even the closest of friends don't see how hard it is for me sometimes and realise how lonely it can be when you cant get out and about and do as much as everybody else. I am guilty to I don't explain fully to people how I am feeling because ive never wanted to be defined by my illness. I find it hard to get attention for being sick because deep down inside I just want to be like everybody else. I don't want people to feel sorry for me.

Here is a link to the cf trust which explains what CF is:

https://www.cysticfibrosis.org.uk/about-cf.aspx