The radiation has already taken its tole, I feel weak, tired, sick, my body is exhausted and all I can do is sleep, but part of me knows that exhaustion comes from the fact I'm now very ill again. This chronic rejection is so fast, everyday I wake up and feel noticeably worse, today just moving leaves me breathless. I haven't had the puff for a shower today, or to even get changed from my pjs. I'm scared. I try not to think about it, not to worry, sometimes it seems like it all happened to quickly that it hasn't sunk in yet, then I get these moments when just walking to the bathroom feels like a mile again and I know this radiation has to kick in and fast.
A friend of mine who was also diagnosed with chronic rejection but at the moment there lungs are unchanged told me about how they asked how long they had left, I didn't think to ask this, but now I sit here and I guess I didn't need to ask, if this radiation doesn't stabilise me, not very long. If it does well, I still can't imagine with my lung function so low that that would be very long either. I know it's sounds depressing and pessimistic. I'm not trying to scare anyone, but these are the thoughts your faces when everyday things are significantly worse then the day before.
Many people have asked me about re transplant, it's not something that has been discussed in length, more slight whispers and mentions. For me, all I can say at the moment on that one is I'm devastated. I don't want to give up these lungs, they were so perfect and beautiful, they worked so well and then my immune system destroyed them, my old lungs I hated and couldn't wait to give up. These I love, they have done so much for me and I feel emotional attachment to them In A sense. I guess that's all I can say on that one as I don't even really know if it's a option.
I will leave that post there for today and leave you all with my emotional turmoil.
- Posted using BlogPress from my iPad
There isnt much I can say, except dont give up hope. You never know what can happen. Things can change in the blink of any eye, miracles can happen. I know the feeling you are talking about, how going the loo can be so exhausting, that you put it off as long as you can. But hope keeps you moving from day to day. And it sounds like your team hasnt given up on you, so you shouldnt either.
ReplyDeleteI know its hard, but keep fighting, I know you will anyway, but just wanted to say that I am thinking of you.
Hello Kirstie, i,m crying as i read this - i have a very special family member who has CF & whilst trying to bury my head in the sand about what the future may bring your story jolts me back into reality & makes me think " why do bad things happen to good people ? "..
ReplyDeletePlease don,t give up fighting , i will be thinking of you & hoping things get better for you soon
Georgie XX
Kirstie I've been following your story for awhile now. I'm so sorry that you have to go through this. You are in my thoughts every day.
ReplyDeleteAlso, if you haven't seen a counselor already, I would really recommend seeing one. It might make you feel a little better to have another listening ear.
--Emily from Phoenix AZ
(sorry for my english, i come from Canada...) I knew you by your tv show few weeks ago. I saw that you're a strong woman. Don't give up...You are also in my thoughts.
ReplyDeleteCaroline :)
Kirstie,
ReplyDeleteIt's understandable to feel attached to these lungs, these are the lungs that saved your life. Not wanting to give up on them is normal if you ask me.
But they have done their job, and look at all you've accomplished with them. You don't want to get too ill that you end up as you were last time. You have so much more going for you in life, and I, as well as countless others, want to see you achieve everything you set your mind to.
Sending lots of love and positive thoughts.
<3 Ducky
Sweet girl - I'm sorry you are in such a tough spot. Life is hard. I hope a turnaround happens for you, and you're given more time with all the people that love you so much. My strong hope. Peace to you.
ReplyDeleteSending lots of positive vibes & virtual hugs your way Kirstie.
ReplyDeletePraying for strength and hope for you.
ReplyDeleteHugs!
R
Hi kirstie, I read about your rejection etc just as I was about to go to Church. I hope you don't mind, but I now have the whole Church praying for healing for you. I don't know if you are a believer but hey, desperate times and all that.
ReplyDeleteLove and prayers, Paula xx
Dear kirstie
ReplyDeleteTake it one day at a time I understand your worries:( none of knows what will happen! sending prayers for your healing very soon all my best wishes XXX
Kirstie, I agree with Ducky above. Yes, these lungs that you are attached to now are the ones who gave life to you again so they are an important part of your journey; however, they alone did not make this possible. It's been your strong determination to live life to the fullest that's done most of the work. It looks like it's time to give up these precious lungs for a new set that will carry you through the rest of the way.
ReplyDeleteLove, Danna (aka Georgia Button)
Hope you can get better one day earlier... Wish you will be better and better.
ReplyDeleteThe sad and often painful truth is that we none of us gets to choose how long we get on this earth and for a young, vibrant girl like yourself the potential shortness of it seems cruel.
ReplyDeleteYes, I will join others and pray for healing for you.
In the meantime and especially in those lonely moments when you contemplate the 'what might be'... know that you are promised an eternity of health, joy and peace in heaven and I encourage you to spend time getting to know Jesus who has paid your ticket in.
With love
Hx
Wisdom and Strength to you, Kirstie!
ReplyDeleteYour respect for your donor and the incredible lungs you were given - anyone should be able to appreciate your hope that they would remain perfect for many years. Please don't feel like you've failed your donor or that you need to "go down with the ship" or anything like that. Keep your thoughts up, be sharp - time will tell, but be active in the decision-making process.
Interceding for you - for clarity of mind and supernatural strength and wisdom! Have hope.
Dear Kirstie,
ReplyDeleteWe are so sorry to hear you are having to fight this battle again. We are all keeping our fingers crossed in the hope that good health will return to you so that you can carry on being the wonderful, positive, vibrant person that you so obviously are. Sending lots of love, strength and hope across the miles from the NZ side of the family XXX
Hello Kirstie,
ReplyDeleteI am a fellow CFer from Ottawa Canada.
I am 42 and feel very lucky to have lived this long.
I truly feel that life is very unfair sometimes. I'm not claiming victim, but instead the total Opposite.
At 42, I have lived a good long time for a CFer. When I look at such a sweet girl like you, with her life ahead of her, married, I reflect on how If I could switch with you I would at Anytime. Its not fair that I have lived til 42 (and counting) and you are having these unfair challenges in your 20s.
One thing, you do have to keep in mind, is the continued great support you have by your side. Living with CF SUCKS. But when you are surrounded by such wonderful people, it helps you wake up in the morning. It gives you a reason to fight this terrible disease, and something to look forward to when you get better. I sadly, do not have that support system.
Fight this for them. But, you know Kristie, its also OK to be selfish. I understand that sometimes if seems that not having to deal with this crap would be so much easier.
I often think before I go to bed at night, that waking up to 2+ hours of NON stop coughing, sweating up a storm, doing MEDS then needing a nap to recover because of the huge energy drain, just may not be worth it. Is it really worth it? Just look around you hun. Look at the amazing people around you, you will you get your answer.
Considering that you are having rough times, I get soooo scared when I see that you have posted to your blog. I worry that this is the last time I will hear from you. PLS keep up the fight. Don't give up. BUT, don't be afraid to be selfish !!!
As usual; you are the tops, the bravest person that I have ever known. I wish the the very, very best and hope that things are sorted out for you very. praying for you, lots of love, K
ReplyDeleteI found your blog a few months ago as I'm currently in the process of trying to get on a lung transplant list. You're such a strong and inspiring young lady. I can relate so much to your feelings of being breathless and scared. I keep checking back at your blog hoping that the radiation has kicked in and you're doing better. My sincere thoughts and prayers are with you and your family.
ReplyDeleteKirstie,
ReplyDeleteDon't ever give up. Keep fighting and know we are thinking of you and praying you get through this.
GA (USA)
Stay strong xxx
ReplyDeleteKeep fighting and stay strong. My beautiful 18 year old daughter passed away in December. She give up and was not accepted for lung transplant as she was growing an aggressive strain of Cepacia. xxxxx
ReplyDeleteHi, I saw your report to the French TV. I don't speak English very well because I'm 15 and I learned English since I was 12 years old.I understand that you made a chronic graft rejection. My cousin also had cystic fibrosis, unfortunately she died a year ago, she was 31 years old. She has not had the chance to have a transplant in time. Your story reminded me a lot of his own. I sincerely hope that you will get better and everything will work out because you deserve it. Remains hopeful and optimistic. It should not be easy every day, but enjoy life and your family because that is what is most important. I hope you live a long time.
ReplyDeleteJuliette ( Paris , France).
Ps : Sorry for my bad English.
Bonjour Kristie. Je m'appelle Mélanie j'ai 26 ans. Je suis française et cela fait deux ou trois fois que je regarde l'émission qui vous est consacré avec beaucoup d'admiration et émotion. Après la rediffusion du documentaire ce matin, j'ai voulu savoir comment vous êtes aujourd'hui. J'ai ainsi découvert que malgré la greffe il y a 2 ans votre vie n'est pas toute rose. Mais vous êtes si courageuse, pleine de vie, ravissante et bien entourée que j'espère que tout ira mieux pour vous. J'y crois en tout cas! Vous êtes si forte qu'une autre bataille de plus ne vous fait pas peur et que vous gagnerez encore et toujours. Chez moi, en France, un jeune chanteur de 24 ans (Grégory Lemarchal) est décédé des suites de cette maladie. Il est devenu un symbole pour tout les malades de la mucoviscidose. Il s'est battu comme vous mais malgré toute la volonté du monde il a succombé à cette foutu maladie. Depuis, la France connait mieux la mucoviscidose et le don d'organe. Je pense que vous êtes un modèle dans votre pays comme Grégory l'était et le sera encore. Je crois en la vie, l'envie de vivre, le courage et l'obstination. Vous êtes vraiment magnifique et forte. Croyez en vous et en vos proches. Vous gagnerez contre la maladie. Je vous envoie des milliers de bisous de France, toute mon énergie et tout mon soutien. Gardez toujours l'espoir qu'un jour tout ira mieux, battez vous telle une tigresse! Je reprendrez des nouvelles de vous plus souvent je le promets. bisous à votre super mari et à toute votre famille. Que la vie continue! Faire de sa vie un rêve et de ces rêves une réalité...
ReplyDeleteHello Kristie. My name is Melanie I am 26 years old. I'm French and it's been two or three times I watch the show that is dedicated to you with great admiration and emotion. After the replay documentary this morning, I wanted to know how you are today. I discovered that despite the transplant 2 years ago your life is not all rosy. But you're so brave, full of life, surrounded by beautiful and well I hope everything will be better for you. I think anyway! You are so strong that another battle over does not scare you and you still and always win. Home, in France, a young singer 24 years (Grégory Lemarchal) died from the disease. He became a symbol for all those suffering from cystic fibrosis. He fought like you, but despite all the will in the world he succumbed to this damn disease. Since then, France better known cystic fibrosis and organ donation. I think you are a role model in your country as Gregory was and will be again. I believe in life, the desire to live, courage and persistence. You are really beautiful and strong. Believe in yourself and your loved ones. You will gain against the disease. I send you thousands of kisses from France, all my energy and all my support. Keep the hope that one day things will get better, you fight like a tigress! I resume from you more often I promise. kisses to your super husband and your entire family. Life goes on! Make his life a dream and those dreams a reality ...
Kristie, have been watching your battle for awhile now, and wish, with all my heart, that you beat this disease. Keep trying to think positive and know that if all our love and support would help, you would get well. Keep fighting and thinking positive...we all love you.
ReplyDeleteGod bless you Kristie we prey for you as we have a young Grandaughter with CF we wish you a long life.
ReplyDelete