Saturday, 30 October 2010

Life is what you make it

I came home (properly) on Wednesday. So much has happened over the past 2mths, some of it somewhat unbelievable. Since being home I haven't really done so much, adjusting to life with a PEG tube is taking time. There's alot of maintenance at the moment because it's still new but I'm already feeling the benefits of improved nutrition. It's funny, you don't realise how much your lacking in the essential things, like that, until they're given back to you. I hadn't realised just how bad poor nutrition was making me feel.
Yesterday I went to the funeral of another lung transplant patient. He died suddenly on the ward last week, it was somewhat unexpected. He was transplanted around the sametime as me and lived not too far away. The funeral was of course upsetting, for me personally it got me thinking about transplant, life, death and everything inbetween.
A comment recently got me thinking too. Someone said "you must be proud of how far you've come". Am I? Not really, what do I have to be proud about? I've just doing the best I can with what I have which is what anyone would do, the fact is I have a whole lot more now to make the best of. I'm not proud, I'm just doing or have done what anyone else in my situation would have because really what options do I have? Realistically I can't stamp my foot and pout my lips and say 'no I'm not having that bronchoscopy and I won't take that medication'. The transplant was do or die for me. It isn't that way for everyone, some people have a choice on if transplant is right for them, for me, in my mind there was no other option, the alternative to transplant, well to me there wasn't one. I was not ready to die, I was determined I wasn't going to die of my lung disease and I was too stubborn to sit back and let it kill me. Maybe it's my stubborn streak that at times keeps me going, I don't know but I do know what are sometimes considered negative aspects of people's personalities have helped me along the way and kept me grounded and realistic. I don't have unrealistic expectations of transplant. I never wanted to run marathons or jump out of planes, don't get me wrong the lung function to be able to do that would be nice but I didn't have a transplant to become an athlete or an adrenaline junky. I had one to save my life and that's just what it's done :-)


Mark W said...

Dear Rachael,
So glad to hear that you have been able to go home now and since you have been in hospital you will be interested to know that I have joined you as a double lung transplant recipient. I like you was not prepared for my lung condition to kill me and hope that I will be able to continue to help others in our position in the future I am also someone who doesn't aspire to run jump and assail into the future. To walk and take some good photos with my family with me will do for me.
Thank you for inspiring me with your blog I hope my blog has spoken to others like yours spoke to me about what it may be like.I got transplanted on 4th Oct had some ups and downs but so far so good.Hope things continue to improve for us to our full potential.I hope the PEG tube helps you!
let us do the best we can.whatever we can
All the best Mark

Bitter_Angel said...

People used to say similar comments to me and I would reply pretty much the same, that I do what I have to do. But recently, I have begun to see that yes, it is something to be proud of. How many other people would still carry on? How many would simply give up?

You have fought every step of the way, to get a diagnosis, to get on the transplant list, to make it to transplant and everything that has happened since. Sure you have done it because you had to, but, you have still done it. You have kept up with the physio, the medication regiemes the treatments, the nebs, the oxygen, everything. You have fought every step of the way, and yes that is something to be proud of. Its just a shame you have had to fight, but it is part of who you are.

Wendy said...

Rachael, your strength and tenacity is so wonderful. You really are a wonderful and special person. Here's hoping that you continue to gain strength with you PEG and port now fitted in place.

Bless you, you sweet girl.

Grumpy Old Ken said...

Just come across your blog. Great stuff, will be interested how you go. I'm fairly new to this game, 30 months? Good luck to you, keep positive.

fire in the hooooole said...
This comment has been removed by the author.
fire in the hooooole said...

hi, just came across in ur blog too. i see where you comin' from but just leave and lift everything to God. He'll make ways like no one could. not everyone has the opportunity to reach your age. just don't get me wrong, just tell Him what's on your mind and i'm sure He will listen. i just want you to know that He really would. but im glad of your courage,. God bless,

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