Tuesday, December 29, 2009

Finally.

So here I am. So here we are. December 29th, 39 days post transplant. I am here, alive, breathing, writing, once again in my blog. How cool is that?

I know it has been a while, and I am sorry I could not write sooner. So many times I wanted to. I missed the outlet so much, but it was not time yet. Not until today, 39 days later.

Today I am perhaps a week or so from going home. I am so lost right now as to where to start this post. I was told just to make it short, but how can I? I have so much to say, and over the next few weeks may be months I will try to say it all, as well as write about home, what it feels like to finally, finally be home. As I said I am perhaps a week away, from home.

Let me start off by saying thank you. Thank you, thank you, thank you. To everyone out there, and I now know there are many of you, that have supported me through what has been the most difficult thing I could have ever imagined going through. There are so many of you out there that I am often stunned by the response. It has been captivating for me to watch. But I have to say that I feel honoured to have your attention in the way that I do. The people I have met, the love that I have been shown is unbelievable. From neighbours dropping off food, friends helping out where they could, to the most heroic gesture I could imagine: A man calling TGH and offering to be a living donor of a lobe of his lung to save my life, when there were no lungs in sight and my family was strongly considering the living donor route. I will never forget the city that Toronto is. Though of course we have received notes from all over the world. People are just good.
It has been terribly difficult for me to get emotionally well again, but I am getting there. This is partly due to the fact that I don't remember months before I got my lungs and much after the operation. It is a strange and unsettling feeling when one moment you are at a certain point in time, and one day you wake up somewhere new, with seemingly everything lost. That's how it felt anyhow. I don't remember waking up from my operation, it happened several times in the ICU and each time my family had to relay the fact that yes I did get my lungs, it did happen, it's over, it went well. i was in and out, and every time the same conversation occurred. The problem was when I finally did come to I could not move a single body part. I could wiggle my fingers, and toes, perhaps my feet. My neck could barely shift from one side to the other. It was singlehandidly the most horrifying moment of my life. The weeks to follow I will slowly write about in the posts to follow. There is so much to say. But I have to say the first 3 weeks were nothing I could have pictured, imagined, or even believed if I was told that could happen to me. I was in bed so long, got so sick before the transplant, that I had lost every other capacity. Those first 3 weeks. I close my eyes now I cannot believe I am here. Like this, now. I made it. With incredibly hard work, pain, will, and determination, and let's not forget the most unbelievable family anyone could ask for.

My lungs came. Can you believe, my lungs came. i call them mine, but there belonged to a lovely woman that lost her life. Her family made the decision to donate her organs, and in turn saved my life that Saturday afternoon. Truly at the 11th hour. When I breathe now, I breathe a little bit of her. I don't know who she was as a person, but I know her in some way. She is certainly watching her perfect lungs working away, and she is so deeply proud of her family for making the choice that they made and followed her wishes. I have so much gratitude in my heart. I wanted to live, and only due to her and her family was I able to survive. I know the family is reading this, I know it, so thank you. You saved my life, and gave my daughter her mom back, my husband his wife, my mom and dad their daughter, and my brother his sister. I can continue to be a friend and live the life that I have always wanted to live, breathing deeply.

I'm sure you're all curious how it feels. Now that I can walk again, and though weak and thin, and still with much more strides to gain, how does it feel to breathe? The answer is, it's like magic. i don't cough. Ever. At all. In fact I am learning how to cough, as it does not come that easily now, especially after being on the ventilator as long as I was. i have a saturation of 99%, sometimes 100% at rest and when walking or exercising. I can hold my breath for ever. I can talk and talk without choking or having a coughing fit. It's magic. There is nothing else I can say about it. It has been worth every struggle, pain, fear, and tear. It's been worth everything.

I don't want to stop writing, I have so much to say, but I am tired. My eyes are not used to the screen and typing quite yet. Before I go, I want to say a few things about my family. i can't leave that for another time. When I was unable to fight any longer, when I was that sick, and when many people gave up on a transplant ever happening, my family fought. They worked so hard, got me the best care, and each and everyone were ready to give up part of their lungs to save my life as a living donor. My mom and aunt were deemed too small, so my dad, brother, and Martin were all assessed and ready to go. All are a compatible blood type and all did not hesitate for a single second. When I think about that, well, you can only imagine. During the last month my mom has been faithfully raising Scarlett, who is growing healthy and strong. She has done such an incredible job, and its amazing to see how much they both love each other. Martin is the man that has done the impossible (the doctors and rehab people are completely shocked at the progress i have made during the past 2 weeks) and got me walking again. Moving, lifting weights, the whole deal. He is the reason why I am going to walk out of here soon. Once again proving to me that we're such an awesome team, and so utterly, without a question, almost to a fault, in love.

Ah, it is time to stop writing.

i have contemplated if I should post these pics, and I have decided to. If they are too hard for people to see perhaps because I am so thin, or due to the scar, or my breasts (what's left of them anyhow) just be warned. I think they are incredible. They will help me remember. These were done by Myles who's an amazing photographer, and someone who I am filled with gratitude for having in my life.


(Above: right side drainage tubes)


(Above: today at 95 lbs., ouch...gotta eat)



(Above: The Novalung scar)

(Below: The whole incision, two drainage tubes on the right, three on the left)

45 comments:

Julie said...

Wow! Yet again, you have managed to bring tears to my eyes. I'm so grateful I read the original story on the Toronto Star's website about you and your blog and your incredible, heartbreaking, difficult, painful, joyous, miraculous and positive journey. I've always known I would be an organ donor if anything were ever to happen to me, but your story has compelled me to talk to others about their choice as well, and to make sure their families know what their wishes are.

When I was reading about your health failing so much, and the seemingly insurmountable wait for lungs, I was going through a rough patch myself (absolutely nothing compared to you), and I remember praying that your lungs would come - even if it meant that the stuff I was dealing with didn't work out. I had such an awful night one night, and then read the post about your transplant - and it really put everything in perspective for me.

So thank you... thank you for sharing your incredible and painful and personal story. Thank you for opening so many people's eyes to the importance of registering as donors - and telling people about their choice. Thank you for sharing your amazing family with the world, and thank you for sharing the brutal honest facts about living with CF and going through a transplant. Your scars might look shocking, but they are truly marks of beauty as they mean you've been given your life back, and you yourself have been given back to the family and friends who love you so much.

I can't wait to read more about your recovery and your return home and back to your life.

Blonde Saffron said...

What an amazing story. Scarlett is so lucky to have a mother as strong as you are. Your family has raised you to be an amazingly inspirational person. Even at the 11th hour, you may not remember, but your body knew what was going on, and knew that it was not a time to give up. And for that, you got your lungs, and are slowly taking the steps to becoming healthy once again.

Your scars are beautiful. They are your battle wounds for your fight against CF. They will be there to remind you of the hard times in the past, and of the good times in the future. Those scars have given your daughter back her mother, your husband back his wife, your parents back their daughter, and your brother back his sister.

Best of luck in the days, weeks, months, years to come.

Congratulations: You made it!

jsiewert said...

.... I dont know what to say. You amaze me in so many ways. How you kept fighting is something I dont always understand. Then I look at my husband and daughter and I know how you did it. My heart is there with you and your family as you get stronger and come home soon! Kiss your family for me because you can!

LittleM said...

It's tough for us commenters too, Natalia, on this first one :)... but wow.. great to have you back, excited to hear your side of every detail, appreciative of your candidness in both words and pictures, and thrilled that you are looking at going home soon. You give us hope. Here's to 2010.

Thara Kilburn said...

I think your scars are beautiful. I posted my husbands on my facebook too. When we look at the scars they are a new life. We love them as he is here today beacuse of what is under them......be proud...scars are priceless and so many never get the chance. Best of luck to your family...xox

John and Angie said...

Natalia, glad to have you back. I am so proud of you for writing again and those pics are incredible.

Your brother John

Håp said...

Thank you so much for sharing all of this. I've been following your blog, and praying for you. I'm so happy that you are feeling better and soon coming home to your baby and husband and the rest of your familiy.

Sending you lot of love and hugs from Norway

Julia said...

It is absolutely amazing to hear from you.

I am sitting here with tears running down my face and I honestly don't know what to say.
For now I will simply say - congratulations, you did it! You are an inspiration to us all. What an incredible story of hope and determination. Thank you for sharing it. Your donor's family must be so proud to have a part of their loved one living on in you.

Scarlett - your mommy will be home soon... yahhhhhhh :) :) :)

Christy said...

So so awesome Nat. You will definitely get stronger, gain weight, and your scars will eventually fade so much, you can hardly see them! I can hardly remember my transplant experience anymore, so I'm so glad I wrote it down too. :)

I'm so happy for you, and can't wait to read that you are home with your beautiful daughter and awesome hubby. Your story is awesome and you are amazing! :)

sandy said...

Words really do fail me Natalia other than to say you are one incredible lady.

Welcome back, it's wonderful to read your blog.

Anonymous said...

Natalia, you can't even begin to know the joy I feel reading your blog today. I'm a complete stranger to you, but you're story has touched me so much. I am beyond thrilled to know you are getting better and will soon be home with your wonderful husband and beautiful baby. You're an inspiration. Lots of love. Keeping you all in my thoughts.

Sarah Andrews said...

Bravo! Beautiful words by a beautiful woman! This post means such wonderful things Nat that all of your readers have been waiting for. You are making great progress and are on your healing journey. What a battle you have had but you won!!!! Can't even type how happy I am for you and your family. So excited for you to get home and get out of hospital life!

Encore! Looking forward to your next blog!

Anonymous said...

Oh Nat. You're back! It's just such a happy thing. You are so brave, thank you for sharing your story and thank you as well for posting these pictures.

GeGe said...

Natalia,
You don't know me, but my daughter had a baby girl on July 17 through surrogacy also. All the bloggers got an SOS from J0jo (Flight of the Humblebee) to pray for you. You have been in my prayers daily, so I can't tell you how thrilled I was to see your post this morning.
I will continue to bring you before the Lord for the rest of your re-cooperation and for the years to come. Scarlett is a blessed little girl to have such a fighter for a mom.
I wish you many many blessings in the new year.

jhudberg said...

How wonderful to hear from you on your blog! Your story of near death and absolute life leave me speechless. I am praying for you and your family as you continue the journey. Blessings from Columbus, OH.

p.s. Scarlett has the most deliciously chunky cheeks, I want to kiss them!

honeygraham said...

Natalia, I am overjoyed to read your touching words this morning! I don't think there is one single English word to describe you. You share so much of your journey though perhaps at times,very painfully honest,I'm sure hundreds of people cannot beleive this is only one persons life unfolding before us! Not many people have fought such a victorious fight and opened up to share their trials and tribulations,failures and successes,to show that faith and determination, courage and bravery, are only a few words to describe you. I don't know if you realize the degree of inspiration you and your family have been for so many many many people. You are definitely one of Gods' spokespeople for Organ Donation! And to me, I see this as the extreme power you have to "Pay It Forward"!!!!!You truly have changed many lives because of your decision to share your story of HOPE and belief that miracles do happen to everyday people. Keep exceeding every expectation as you recover and become the Mom,Wife,Daughter,Sister,Aunt, Friend and Hero that you were meant to be.

Poppy said...

Wow...I burst into tears when I realized it was you, Natalia, who was updating us today. Praise God!

You are such an awesome, amazing woman! What courage it took to share so much of yourself with us. Your scars...they're beautiful. They are the signs of what a hard battle you fought for your life, for your family.

I don't know what else to say except...welcome back. You've been missed and I hope you know how much so many of us have come to love and admire you.

Sending positive energy, along with many prayers your way...

Til next time~

Taryn said...

Natalia,
It is so nice to see you write again and hear your story from you. You have gone through an incredible ordeal but you and your family have faced it and dealt with it with such amazing strength and determination that put me in awe. You have been through a lot and not it is time for you to heal both psychologically and physically. you are strong and determined and brave. You have overcome what would have been insurmountable odds and continue to defy everyone with your recovery. Just remember that this is not a race. Take your time and get back into the real world and everyone will always be around you. You are truly amazing.

Unknown said...

Bravo, Natalia, bravo!

Unknown said...

Natalia, I have been following your blog and your brothers as well, since I read your story in the Toronto Star. I can only echo what others have said. My feelings, my thoughts, my admiration for you continue to grow. Your entire family are very blessed to have and love each other. Your scars are beautiful to me as I know they are to you. I'm so looking forward to the day I read that you are home. My thoughts are with you and your family always.

shannysnewlungs said...

Words cannot express how happy I am for you. Every day I check to see your updates, every day I pray that you are ok. So weird because I don't even know you ....but what I know is that you give hope, hope to others and a person like me who is waiting on the list at TGH, waiting for that miracle of a call, waiting to breath again, be a mom, wife, daughter, sister. Take care, get stronger, eat more!! Ha ha.
cheers
Happy New Year
Shannon

Lisa L. said...

Wow I am so thrilled to see your words on the page. It is truly an amazing gift and procedure. Thank you for your honesty and for sharing with everyone. I continue to pray for your speedy recovery. Lisa L.

Heidi said...

So glad to see you back blogging! Can't wait to read more. Praying for you, my friend! And, those scars will be all but a faint, faint line in a few years!

LeeAnn said...

Dear Natalia, it is incredible to hear your voice through your words once again. Bless you - so much to say and not sure how to get it out at this moment. You are beautiful. Your pictures are beautiful. Looking so forward to reading more of your journey and to know that you are home, soon. xo

Lauren Grace said...

God Bless you. You are such a fighter and so is your amazing family.

May 2010 be the most incredible year for all of you! You all deserve it!

Karma & Adam said...

Welcome back, Nat! So good to see you, to hear you, writing again. So much to be grateful for, and I'm sure it's going to take you a long time to wrap your head around all that has happened, and all that is now in front of you because of it.

Lj82 said...

Those are the most beautiful scars I've ever laid eyes on.

You are such an inspiration, and I'm so incredibly in awe of you and your strong family.

Wishing you all the best!

Alison said...
This comment has been removed by the author.
Alison said...

Natalia,
It's SO good to see you posting on your blog again! I've read your story in the Toronto Star and since then have kept up with your blog as well as your brother's and his and your twitter accounts. I knew that after seeing your message on twitter that it wouldn't be too much longer before you posted here again.

Your inner strength and perseverance (and MOST DEFINITELY your scars) are something you should be VERY proud of. What you have been through and how far you have come shows just how strong (mentally and physically) a person you are and what a wonderful family support system you have. I know from personal experience that the family support system makes a huge difference in your recovery from surgery, especially something major like you have just gone through. I also know that there is a long way to go still, but once you get home and are around your family in your own environment (and in your own bed!) you’ll see just how much faster you’ll feel better and better and stronger and stronger every single day.

I wish you and your family a wonderful New Year and nothing but the best for 2010.

Linda said...

Wow!!!!!! What a thrill it was to discover it was you writing for yourself. I check several times a day to see if there is a new message about your journey and your friend has done an amazing job keeping us up to date, so please thank him for posting. However, I am glad he has been replaced! You have a wonderful family and support team and I know they are so happy to have you back. God bless all of you.

Linda in Louisiana
Mother of Mandy (with the angels) Kyle, Hunter and Brady wo/cf and Jamie, 23 yom w/cf

Paprika said...

Live and breathe. Breathe and live. You are a miracle. Happy New LIFE.

N said...

Wow, you are so amazing Natalia. I'm just beyond thrilled to hear from you directly. Keep taking care of yourself and thank you for sharing so much of your strength with others. You are a miracle.

Marti said...

It's so wonderful to be reading your words again. We don't know each other, but I carry you around with me everyday, thinking about you and your incredible family. You inspire me to be a better mother, a better wife, a better woman. I can't wait to read the post that tells us that you are home. Continued healing and nothing but happiness and joy in 2010 and beyond.

Cassie said...

You are beautiful. Just the way you are, today. Beautiful, and whole, and alive. You can breathe!!! You're amazing.

I've been waiting for you to come back. I'm glad you're here now.

Anonymous said...

Natalia,

Thank you for your vulnerability and for the extra special care with which you carry on in your life that reaches so many others. May God continue to bless you. Your paragraph explaining what it feels like to breath again.....amazing..... I long for that easy breathing....hopefully, my transplant will come soon... Oh, what you have endured is so great....

Love, a cyster,
Kerry
http://breathingyouin.blogspot.com

Anonymous said...

Natalia,
I didn't see any email address for you...so this may seem a wierd question for the comment section but I wanted to ask your permission to mentioning your blog on my blog and quoting you in a post? I really love your writing.

Thanks, Kerry

jojo said...

My God, Nat. You are a brave and powerful woman.

I'm so glad you're feeling well enough to blog, but please don't hurry yourself. We'll all be waiting right here for you...take your time.

I look forward to a long friendship with you.

xxx

Wewurtskihit said...

NAt...no words!! (mainly because i am too choked and emotional right now to say much!)

SO HAPPY to have you back!!! SO HAPPY you made it (not that there was ever much doubt on my part!!)

welcome back!!!!

xox
Mark

Heather said...

i am so happy for you that you got this second chance. i believe you are going to take advantage of it to the fullest. enjoy breathing clear & hang in there for the recuperation.

xoxo
HKD

tcole2 said...

You are so amazing!
You give hope to mom's with cf children.
I am a mom to a 3 year old boy named Anthony. I still cry daily.
You have showed so much strength sharing your story , you have been such an inspiration to me. By you sharing your story, so many more people have learned what CF is and it's devastation.I pray for you and your family everyday!!
Stay strong and THANK YOU!!!
Tracy in Peterborough.

Bonny said...

You are wonderful. And I am so very happy for you and your family. It was a gift that could not have came at a better time and although a life was lost yours was gained and that has to be some comfort to her family. So glad you are back and getting well.

Mary said...

Wow, you remind me so much of how I felt 5 years ago when I woke up with most of 2 months gone, and what I remembered made little sense as I was totally wacked out from the drugs I'd been on. I could barely wiggle my toes and the sheets felt heavy, it was really scary. I'm so glad you're able to post again. I know how great it is the first time you're able to do something that makes you feel "normal." For me it was the first time I managed to pick up and dial a phone - my arms were so weak and hands shook so badly and I had to use a phone card and I had a very hard time manipulatng the phone, but I did it and the recipient of the call burst into tears. Probably like many of your readers are now when they see you posting for yourself again!

I hope you continue to do well and get home soon. I didn't have a blog when I was sick the first time, and it was so traumatic it took me a long time to write about it, but I did. I think you might enjoy what I wrote, and it may even encourage you. Here's a link: http://web.me.com/kindredspirit7/KindredSpirit7/Wings_of_an_Eagle.html

I hope you are home caring for Scarlett really soon.

God bless!

Mary

Sally said...

Happy New Year ... Happy New Life! I was thrilled when I realized it was you doing the blogging ... absolutely thrilled!
Thank you for sharing your incredible experiences, your beautiful family and your wonderful optimism with us. You go, girl!

MyLifeMyWorld said...

Words cannot express my sheer joy at seeing YOUR words on your blog today. I have to say I've been pretty busy and couldn't get to the blog world until now, but checking in and seeing YOU writing, YOUR words, YOUR thoughts, it's just so incredible. I am giddy with joy to hear that your doing good. I am excited to hear what will be ahead. Sure there are challenges, we all expected that, but you are an AMAZING AMAZING person that can go beyond all odds and get through on the other side.

Just look at how many follow your story? How many people you have touched in one way or another, including me!

I think those photos are beautiful, they are your triumphs over a great battle, their proof you made it through and are proud!

Just simply amazing! Happy New Year Nat, welcome back!!!!

Angie said...

I find these pictures very inspirational and slightly intimidating. I willbe going to my pre evaluation appointment soon and there is so many concerns and questions that I have.

One night, my honey and I were in bed talking and I asked him if he would still find me sexy after transplant scars. His answer took my breath away. "If you are healthy and breathe better, they will be the sexiest scars I have ever seen in my life"
He is the sweetest man I know and the biggest support system that I have.
Thank you for sharing your post transplant stories. I am new to this site, but I will be keeping on eye on your updates. You have a beautiful family.