Monday, December 22, 2014

83 months

Today marks 6 years 11 months with the new lungs. I am VERY grateful but I haven't had a great day. My mind is filled with everyone that I've known who didn't survive this journey... Jolandi, Helen, Lynn, Dominique, Dave, Louis, Francois, Ninette, Gustav, Santa, Maryke, Trevor (who received my donor's heart)... and I am probably forgetting a few right now.  Also thinking of those struggling in ICU right now, compared to the easy recovery I had. I don't understand why I deserve the luck/grace/miracle I have had and pretty much having survivors guilt. I just hope that my donor would be proud of me even when I'm not proud of myself.

Even with my chronic rejection I've been lucky. Most people I know on Facebook who have had chronic rejection/ BOS did not stabilise, and either received 2nd transplants or passed away relatively quickly. Yet I've been dealing with this for 2 years and it seems like I'm pretty stable... still doing what I could do 2 years ago minus some squash/running.

Hopefully I get out of this mood in time for Christmas. And hopefully everyone in ICU who have had transplants recover, and hopefully everyone doing well will keep on doing well. And those waiting will also get their miracle. And one day we will understand why things happen the way they do.


8 comments:

Alice said...

Siobhan Scallan - Alice, you can be so proud of who you are and what you've done and are still doing with your life. You have given me, and continue to give me, courage during some of the scariest times in my life. Truly, I don't think I'd be "so brave" in the face of transplantation without you as my inspiration. You still manage to find the strength to support others in need, even when you have your own battles to face. You're my hero! X

Alice said...

Nadia Engelbrecht -vAls... jou trials and tribulations is al so deel v jou dat jy vergeet jy stap eintlik n baie moeilike pad in vergelyking met meeste ander mense... jy verdien enige sogenaamde "luck" wat jou kant toe kom.Imagine hoe voel ons klomp wat nog altyd net kon asemhaal!

Alice said...

Dawn Fryer - Alice, I believe your donor would be proud of the way you are living your life. You appreciate the sunrise, forgetting that the reason you are seeing it is because you are schlepping to work at that early hour. You live in the moment, enjoying every little thing about life - a mushroom growing in your garden, your pets, your friends, travel and your wine . You have taken your duty of spreading the word so that many more people may experience the miracle of a new life through organ donation very seriously, going above and beyond what is expected of you, I'm sure. And the fact that you are questioning your worthiness is precisely why your donor would be so pleased that you were the recipient of the gift you were given. So spend the day in reflection, then get back to the fun of living and loving - that's your job now. Merry Christmas. Dawn xxx

Alice said...

Anna Modlin - I am so proud to call you my friend, and a mentor. It is so great that we have these friendships and why some of us are so lucky, I don't know. I just know that every moment I am here I must live hard, speak loud, and believe strong. Love you my friend, and I am so happy you are still here and kicking. Not just kicking, kicking bootay!

Alice said...

René Suzanne Vosloo - I am the very proud mother. Life is not always fair, I often wished that I could take your burden and give my excellent health to you. BUT life is not fair; I remember someone waiting for lungs, I also remember someone fighting for his life. We are blessed, praise The Lord!!

Alice said...

Jenny Marnewick - Well said and agree totally with Nadia! I think I started following your blog after I read an article in a magazine Alice. To be honest I don't think I had ever heard about CF before.

Alice said...

Susan Pretorius - Bid elke dag vir jou - en almal wat ons nie ken nie.

Alice said...
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