My thoughts on transplant

I watched a lovely and emotional programme last night called Love on the transplant list, I watched it on BBC IPlayer but it aired on Tuesday BBC 3 9pm.

It was a nice programme about a couple who were planning to get married but the Lady called Kirstie if my memory serves me right suffered from cystic fibrosis and was on transplant list as her lungs were so badly infected they were beginning to fail and she needed a donr asap.

It was great to watch how CF affected her and her husband and family and she was great in it.

A couple of notes on it though.

The programme seemed to generalise CF too much, gave very little information about what cf is and how it works and not once was it mentioned why her lungs were failing or what infections she was suffering from or the drugs that she was on.

I loved watching it and was great to see she made it in the end and seemed very appreciative and lucky to have got through the worst period of her and her families life.

BUT

This programme will not really help to raise awareness as much as it could of.

It only mentioned few facts about CF
Nothing was mentioned about routines with CF
Or how individual cf can be between each sufferer
Nothing was said why her lungs were failing in detail and
What information was too vague

I dare say that anyone watching that who knows someone with CF proberly sat there watching thinking "why, how, when, who and what" and will no doubt be wanting to ask a sufferer many questions.

I think the BBC should now do a series of Programmes highlighting individuals and follow maybe a dozen different sufferers with varying degrees of symptoms.

This could better highlight in detail how different cf can be from one person to another and how it all affects us mentally and physically and give more information on cf and the different treatments available.

I will be writing to the BBC to see if this is of interest but I dare say that others will have already done so or be doing so.

So what are my thoughts on CF (Someone may be saying im sure)

I have for a long time said I will keep myself healthy as best I can and for as long as I can of course I will.

But im 27 years old now and considering when I was first diagnosed life expectancy wasnt much past teen years, Ive done well to get to where I am and still have fairly good health (despite this year being my worst)

Im glad to say ive never had to use oxygen (my lungs have been well enough to work on their own even when ill) and ive never had to consider life saving treatments.

My stance is that when I do become too ill to function on my own that will be it for me I will not accept a transplant and let someone else have a chance.

I have known this for years and am happy to stick with that because ive led a good life and fulfilled many goals I had. Some others have not even had a chance to start life yet so Id be glad to see someone else get a chance with new lungs.

Im not saying that I will never change my mind but im pretty hard fast on how I feel going into the future when it comes to my health as I see myself living for many years yet hoepfully before transplant is ever mentioned by my doctor.

I have fought with cf my whole life but going on the transplant list and going through the rehabilitation process and not to mention possibly getting really ill before the transplant and not even making it. I dont think I could fight through that and the rehab process.

I find it easier to accept the end and not put others at pain. Once I know the path be prepared and thats it not live with false hope, maybe never get it and let others down plus the months of pain before and after. I dont think I could cope. I find my mental strength is good to life with CF but im unsure i could deal with a transplant.

I asked my partner last night "Does it feel different to watch that programme knowing with with someone with CF" without even thinking she said "yes of course it does"

Not many people are aware of how bad CF can get and I think people who watched that programme now have a different mindset of it and are asking themselves lots of questions.

A CF sufferer is used to pain and suffering and day to day life of CF. People outside see it, learn it, understand it as best they can.

BUT

What most people without CF who have a friend, relative or partner with CF do not realise is how bad it can get and how that can affect them watching someone go through life with CF especially if that cf sufferer is on the transplant list. (That programme last night was brilliant at showing that)

That programme last night showed how it affects people who love someone with CF so well. I have the most admiration for them because it must have been so hard to watch and feel helpless.

And thats what people learn the hardest at the worst times.

When it gets bad all they can do is sit back and watch, wanting to help but in no way being able to

That makes me feel guilty to know that I can make people suffer like that even though its not my fault and thats why I have my stance on transplants and not wanting one. I can deal with pain but can others??

I recently spoke to a friend who dated a cf sufferer but they split because she was unable to handle the daily pressures of it. Her words really make that decision easy to explain.

"I couldnt be with him anymore, I couldnt watch someone I Loved go through that, it was best for me and him to split, I still care but now I dont see the real CF I do not suffer the pain I did watching him go through pain. I couldnt take it knowing that in the end the worst could happen and I could do nothing but watch it happen infront of my own eyes. I needed out"

Now some people will scoff at that and say thats not fair and its painful to leave someone for that reason.

But it is not unfair at all.

Its harder for someone to watch it than it is to suffer with it and I totally respect my friend for wanting to walk away. Why love someone so much when you know it can so cruely be taken away from you?

I respect her more for walking away than I do lying to herself and him thinking that all is going to be well.

I have even said to my partner a few times "If this gets too much and you want to walk away I would absolutely accept that because I understand the suffering it causes"

Being a CF sufferer it doesnt only make you suffer it makes the people you love suffer too