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