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 :)
No comments:
Post a Comment