2011

Time for a little update.

Life has been really good. For the first time in many many years I am really enjoying winter time. I love the snow, the chill, all of it. Hmm who knew? When I was younger I used to ski with my family, and really enjoyed the winter. As I got older and my health got worse, the winter became the season of infection, flu, snow banks that were hard for me to walk in, and after a while the season that was mostly spent inside. Blah....

This winter is different. Scarlett and I enjoy sled rides, and walks. We walk through snow blizzards and icy streets. I look forward to the day when we can begin her on skis and get our whole family out on the slopes. Certainly a winter sport I look forward to getting back into my life. I have a feeling it will all come back quite naturally.

The Holidays also proved to be quite nice. It seemed really busy this year, which is nice. Again, the past few seasons have been either in the hospital for me, or stuck at home quite unwell. I was a little lost at first. I was not sure why until I went for my monthly blood work at TGH. Sitting there waiting at the lab, I realized a strange thing looking around at the tacky hospital decorations, I realized that I felt at home. The hospital during the holidays especially was a familiar and somehow comforting place for me. Blah again.... How terrible of a realization is that?! After that visit I promptly decided to decorate the house, bake some cookies with Scarlett and really get into the Christmas spirit. Since I have not for so many years, I realized that I had to create a new feeling of comfort and holiday spirit. At home with my family. so that's what we did. Christmas morning was spectacular. Scarlett came down the stairs and could not contain herself. She was in present heaven. We made pancakes and drank champagne with orange juice, and it felt right. No more thoughts of Hospital glee. Strange things happen in the brains of chronically ill patients, the things you miss, the things you learn.

We spent time at our new cottage that holiday week. Up until New Years. The cottage just underwent a renovation, and we finally got to use it. The furniture came, and took time to set it up, and then we built a nice fire and enjoyed the snow. There was lots of snow up there, unlike Toronto. It was a nice time away. It was so nice we had no idea it was New Years. This year to stayed inside with our babe, and took it easy. We have partied for so many years, we just didn't have it in us this year.

So that has been our winter thus far.

The new year will bring really great times I think. We are making plans to visit family in Chicago soon, as well as a March holiday. We want to take Scarlett somewhere amazing, but have not made up our minds as to where to go. Caribbean, Europe, perhaps South America. We will see. Right now we are working on her passport. Then we book.

My health is great. Scarlett just got over a cold that left her snotty and grumpy. But I am glad to report that even though she was in my arms day and night, sneezing and often coughing on my affectionately, I stayed cold free and feel great. I swear I thought I was lacking an immune system...

Scarlett January, trying on her new bathing suit

Thank you to all those that faithfully read. I know you are still out there even thought I write not so often.

Martin, myself, and Scarlett Christmas eve.

Approaching the 1 year mark

Looking back.

There has been much of that happening during the past few weeks. It's hard not to think back to what was a year ago. As far as I'm concerned, it's what wasn't. By this time I was not aware of anything. That long long road to where I am now had begun, and I was hardly aware of what it would all mean in the long run.

As November 21st approaches, it's hard not to try to put all the pieces together. All year I have been focusing on every day life. Rarely thinking about what was. How horrible it all was. But now I find comfort in thinking about it all. Running things in my mind over and over, being amazed at how crazy it all really was. How much of a miracle it really was.

Life now days is normal, busy, tiring, exciting, and possibly the most present than ever before. For so long I was so sick, that I was living in a fog. I had not realized it until now, until that fog has been lifted slowly over the past year. I see things clearly. I see life clearly. This is how I know that what happened to me and to my family, defies all explanations. It just happened, and somehow we ended up on top. I still don't know why, or how. It could have been so different. My life was defined by those seconds, minutes, hours, days, before my transplant. And in the final seconds, in the 11th hour as Myles had written, the coin landed the right side up. That still takes my breath away.

Today, I'm looking forward for the first time in my life. The future is not a scary place, it's only filled with what we'll make of it. And Martin and I and our Scarlett have big plans.

(November 2010)

Walk down memory lane

This week, August 9th to the 13th, CBC will be re-airing the segments that they did on my transplant journey. On the 13th however they will run a new segment that we filmed while Martin and I were on vacation in northern Ontario a few weeks ago. Though I was apprehensive about doing any more interviews (as I really don't feel like re-living it all, over and over again) I thought that this one, the last, is the most important, as it will show so many people the true gift that is organ donation. I would also like to inspire all those that are waiting for their new lungs, or are recovering after the very difficult surgery.

I know there are many people out there wondering how things are with us, so please pass on the news of the CBC segments. They will air nightly, on CBC with Mark Kelley. I believe at 8pm.

Everything is still great. Scarlett is now a year old and starting to walk with the help of various objects around the house. She is big and strong. Healthy, and extremely happy. Martin is doing very well. Working away like always. Keeping busy, taking care of us as he's always done. As for me, I am busy busy. I tend not to have time to think about what if's....that's the magic of a 1 year old. All day I run around after Scarlett, try to keep up with the house, the garden, friends, groceries, blah blah blah....boring mom stuff. Life's pretty good.

Oh and the lungs are super.

Writing for gratitude

My last post was two months ago. I certainly was not sure if I would ever write again at that time, and I am still not sure what I am going to do next...or if there is still anyone out there reading. But that's okay. I am writing today with gratitude in my heart, and a completely new life that I am living.

Lots has happened since March. There was a turn around. There was a time not too long ago that even though I was feeling better and better physically, I was so changed emotionally that I did not know who I was. Transplant somehow took something away from me. I could not figure out why this was happening. I was breathing, I was alive, I was with my family, but I was lost. I guess I wanted so much more. Dreamt of being normal and capable, and as much as I wanted that, it was not happening. Not right away anyhow, and I wanted it right away.

During the last few months, I feel like I have been reborn. That's the best way to describe it. My past life living with CF lungs is just a faint memory. Did I really live my life coughing, wheezing, gasping, medicating? How did I do it for 30 years? I guess I did. But the fact is, I don't miss a bit of it. Not anything. The life I have now is better than a dream. Better than I could have imagined. The fact is, I have never been healthy, so how could I have ever imagined what it would feel like. Well, now I know.

It feels like each day is a new one. If I have a tiring day, I sleep, I eat, and I have energy for what is to come tomorrow. That's like most people I'm guessing. Well my CF body never seemed rested enough. I never ate enough, I never slept enough, I never coughed enough to clear my lungs. It was never enough. It was always a battle. Always a catch up game. These days my days look something like this:

6:30 - 7am Scarlett wakes up, so I get out of bed. (I take insulin - nothing else! My Cf lung 1 hour routine is now 30 seconds)
7-8am Martin and I eat breakfast with Scarlett (we watch daddy leave for work)
8-10am We dress, shower, have play time, or a walk, or grocery shopping, or if it's a Monday we clean the house (I take my pills at 9am)
10-noon Scarlett naps. I make sure laundry is done, bills paid, lunch made
noon - 1pm We eat lunch.
1-3pm We usually are outside again. Long walks, shopping on yonge, coffee with a friend, a play date,today was an afternoon in her blow up pool in the backyard (great fun!!)(2pm pills)
3-5pm (sometimes 230 -4pm, Scarlett naps again) During this time I make dinner. Since I'm eating nearly no carb right now, I always have to prepare the meat, veggies, whatever is on the menu. We are eating well these days. I am so happy to be able to prepare fresh food for my family. I was so sick for so long that we had to sacrifice very healthy eating. These days Martin, myself, and little Scarlett are eating all veggies and fruits and lean meat. (Scarlett of course is allowed carbs as a baby should!!)
5-6:30pm We eat dinner. Martin is home anywhere during that time. We all eat together, and talk about the day, and watch as Scarlett makes the biggest mess possible as she learns to eat all sorts of things. We love it!!
7pm I go do yoga. Martin bathes and puts Scarlett down. She's usually so tired after our busy day, that sleeping comes quickly and happily.
8:30pm I return home, and Marty and I have some wine, sit on the porch, or watch a movie. (9pm pills)
10pm We are sound asleep. Scarlett is a great sleeper. Sometimes it scares me and I look in on her while she's sleeping. She often wakes up only once, sometimes I only hear from her at 7am, like clock work. There have been harder nights, when she was getting used to some changes. But that came and went. I don't blame her for having a hard time, with all that's happened. Actually for a baby that has been through everything that she has, she is the happiest, most well adjusted baby I know.

For those of you that have followed closely during the past year or two, you'll remember that my mom was living with us for about a year. A huge sacrifice on her part. Well, my mom has moved out. Sooner than I ever thought she would. I just started to do so much and feel so good, that we were all able to move on with our lives. To me, the fact that I take care of a 10 month old all by myself all day, and the house, and the garden, and I make the meals....(well you get the idea) is an absolute miracle. Never in my wildest dreams did I ever think I would be able to. But the truth is I do it with pleasure, with a smile on my face, and more gratitude every day.

The one constant these days, is that I am more thankful than ever. At least once a day I will do something that makes me teary eyed. I will be in the grocery store and people will be smiling at Scarlett and I and telling me that my daughter is beautiful and I think, yup that's my daughter. To them I am just a regular mom. How cool is that? The other week I decided to run up a hill with the pram. I don't really know why, may be because I could. And I did. I felt like I was flying. By the time I made it up the hill I was in tears. A month ago I did my first power yoga class without once stopping or resting. It was amazing. My body and mind felt like one. Last week I decided to take Scarlett on a day trip to my in laws cottage. I packed us up, and spent the day at the beach. Something I never thought I would do by myself. Scarlett and I had the best time. At one point I walked past the cottage where I have spent some time during the past few years. Often not being able to go to the beach since I was so tired and sick. Often watching families walk as I stayed on the porch or inside. On this day, I wish I could go back in time and hug that girl on the porch. Tell her not to worry, good things are coming your way. Just hold on, be strong. That girl that I was, that I no longer am. I wish she could see me now.

I have also had quite powerful moments when I think about the woman that lost her life 6 months ago. A woman that never imagined how her life would end, and I am sure never imagined that she would save a life as she lost hers. Thought I know she was not aware of her fate, and thus not aware of mine, I like to think that her spirit knows. I often look up to the sky and thank her quietly. Her family might think they understand what they did for me, but I don't think it's possible to understand. I wish I was articulate enough to express to them (and I have tried) what my life is now. To thank them in a way that would mean something - to find those words. I am not back to the person that I was. I am a new person. A person that has the luxury of health, and happiness, and the privilege of insight, as I know how it feels not to have any of those things. It makes me so sad to think that we are not all organ donors. That we don't all think about the lives that we could change. The responsibility that comes with living in a world filled with our brothers and sisters. I urge you all to make that choice. Become a organ donor and become a hero. What a legacy to leave. I think about my donor and her family all the time. Mostly in awe of their ability to think of others when their world was crashing down. It seems like an obvious choice, a simple choice, but the donor numbers in Canada will tell you what they did for me was extraordinary.

Saying thank you and goodbye

After lots of thought and conversation about the topic, I have decided that it's time for me to shut down my blog. I will print everything that I have written, and I will bind it, so that I have it for the future, but I will shut it down.

When I started this blog, it was a huge source of comfort and relief for me. I never expected it to become as large as it did. For so many people to connect to it. That was a lovely surprise. I started to write when Martin and I found out that we were expecting. We had just gone through Invetro, and with the help of our amazing friend Beth, we were awaiting our 9 month journey to meet our daughter Scarlett. During that time I never imagined the year that 2009 would be. If someone told me what the year had in store for us, I would not have believed them. It all unfolded so quickly. So suddenly. Looking back, it has all been like a bad dream. A dream that we are all just waking up from now.

During the time that I was waiting for my lungs to come, my blog was my support, my comfort, and my connection to something I was physically unable to connect to any more. I was so isolated socially, so emotionally robbed, and physically broken, that the blog, and the Internet allowed me to make connections with people that I missed so much. That I needed so desperately. During the most desperate times, my blog allowed me to express what it was like to be so sick, so sad, and so scared. I never expected the support and love that I got from perfect strangers, old friends, new friends, family, and other bloggers. I was hooked the moment I wrote my first post and got my first comment about what I had written. The connection was real, and it moved me.

As much as there has been support there have also been critics. People that have wondered why my family and I would be so public with something as personal as my illness and lung transplant. I want to use this forum now to answer those people. There are many reasons why we went public, and why we continued to be public. The first and most immediate reason was my need for lungs. I was very sick. I was on my death bed. I needed an organ that was not coming. I was a rare blood type, and we came to the conclusion that since there was nothing we could do for me at that time, the only thing we could do was to get awareness out about organ donation, tell my story and may be, just may be, reach that one person that would make the choice for a loved one that had passed away. It was a difficult thing to do, knowing the nature of organ donation and the controversy that is always around it, but it was all we could do. To this day, I would do it all the same way. I believe it worked. It helped me get my lungs, and many other people too. I believe that with my whole heart, and it makes what I have gone through, and what my family had to endure, not in vain. But with purpose.

I also went public with my story, since it brought me comfort. I know for many people it would not, but for me it did. In October when I was at St.Mike's and in so much pain, waiting for my call to come, and the Star ran that beautiful article about Scarlett, Martin, and I, I gained strength from the fact that everyone knew, and that most people wished us well. I say most, since I know it was not all. Some people were outraged that I would have a child knowing how sick I might become. I have never addressed those people. I was always very kind. Today I will say what I have wanted to say for over a year. How dare you judge me? My decisions. My life. I only have the strength to say this now, because I see the child that my daughter is. The perfect person that she is, and the love that she is raised with. She is proof of what family love is. The assumption that a mom and a dad make a perfect family is pure ignorance. We all know many moms and dads that should not be parents. But they had the freedom not to be judged. My illness has always opened the doors for judgement. In fact many people with CF are judged every day for the choices that we make. We are people, we have the freedom to do like all other people, and our children will grow up with a perspective that will make them incredible people. I watch Scarlett grow up. Happy, healthy, and strong. Smart, loving, and caring. She has been raised by my husband while he went through insurmountable stress. She was raised by my mom, who was there when my husband was by my side when I was dying a terrible death. The result is a child that loves unconditionally. Loves her mom, her dad, her babcia, her dziadek, her uncle John, her aunt Angie, her cousin Sophie, her nana, her papa, and on and on. Her connection to her mom, to me, is unwavering. She knows I am her mom, even though I did not carry her, and I was away unable to see her for months. This is love. To those people that doubted that love. That criticized my family and our intentions (and our very difficult and calculated decisions), you people must lack that love, as you would never doubt it if you knew it.

I don't want this last entry to be about negative people. Since out of thousands there were only a few. But I had to write what I felt, I think everyone out there has come to expect that from me. Recently I have had the opportunity to go through some of the comments, and emails, and letters, and I felt like I needed to say what I felt. So there it is.

To everyone else out there, I have felt so much love and support, it's hard to imagine. Toronto was more than supportive. I felt the love through the walls of the hospital, through the darkest days, through the pain, through the set backs, and through all the victories. While I was at TGH I got to know a lovely woman that was a perfect stranger to me (T you know who you are), a woman that waited in the ICU waiting room for days and days while I waited for my lungs, and as I recovered from the operation. She came with cards, with gifts, with love and support. I also knew of a young man that had come to offer a part of his lobe, to act as a living lung donor, to save my life. He wanted to share the life that he was given with me, someone he only knew through the media. To him, even though I do not know who he is, I want to say thank you. The gesture to want to do such a thing is larger than the words I can use to thank you, and certainly larger than my ability to comprehend. But what a testament to how much we as people care for one another. I will never think anything, but that people are, by nature, good people.

Today, March 21, 2010, is the 4th month anniversary of my lug transplant. 4 months ago, a woman named Sandra Foglia was removed from life support by her daughters and was granted her wish to be an organ donor. I don't know a lot about this woman. But I do know that she was also a mother, like me. She gave to her girls, and she gave to me. I'd like to think she knows what she did for me and my family. That somewhere out there her spirit is free and she smiles upon the gift that she gave. Not many people, like Sandra, are organ donors in Canada. This makes Sandra a very special woman in my eyes. A woman that was able to think of a time that she would no longer be of this world, and would so generously pass on what she could in her death. I am trying to be articulate here, but I am failing short, as her gesture is too grand, too real, too close to my heart.

Four months ago I was somewhere else. I don't remember where I was, but I know I was close to my god. I felt his presence. I knew that no matter what, I would be okay. I have not written a lot about the things I remember and the things I don't. The impressions that are ingrained in my mind, the thoughts that run through my head to this day. I have not written much on the subject, since there is too much to write, and truthfully, I tend to weep when I think about it all. So, slowly I am trying to get it all down, so that it is not lost, but it will be quite some time before I am ready to share any of it. That's where my hope of writing a book about it all comes in. The question is, will I ever be brave enough to share the mystery of it all.

Today, my friend and Toronto Star reporter Barbara Turnbull wrote yet another amazing article about my journey, and now the journey of the donor family. I have added the link below as it's a wonderful showcase of what the donor-recipient relationship can be.

http:// http://%20http//www.healthzone.ca/health/newsfeatures/article/782895--finding-hope-in-a-mother-s-death?bn=1

So I thought it fitting that this be my last post, as I feel a sense of closure to it all. We have come full circle that's for sure.

With love and eternal gratitude.

Natalia.

Strength

Life is funny. And though I should be quite used to its ups and downs, and its unexpected turns, I never seem to be less surprised when one day things are down, and the next they are up. I should be better suited for such such a life. But I'm not.

The sun has been out here in Toronto, and the temperature has been hovering in the 15 degree zone, and people are out and about loving it. Some people loving it a bit too much, as I saw a girl in a skirt and t-shirt today freezing her butt off - but over all it has had a great affect on the mood of Torontonians. We are so sick of winter by March, and it shows - hence the girl with the bare legs today. I am no exception. Today Scarlett and I took a long walk. We sat at Starbucks and soaked up the sun. We drank tea, watched people with their babies and dogs, and even ate a chocolate covered caramel pretzel stick that has made its way back onto the Starbucks menu. Thank you Starbucks!! It was amazing, and Scarlett had a great long happy nap, as I relaxed and oozed happiness.

Besides being lazy at Starbucks, I have been working out at our club. It's been so great to be back there, getting a great workout in, and being among people again. I have a program that a trainer has put together for me. It's great. Today especially I felt so strong, like something has changed, like finally my body has freed itself from the aches and pains of tx and is able to gain strength. I was looking in the mirror today as I was working out, and I could not help but think of where I was 3 months ago. Even a month ago. How my body is changing and muscles are growing back. I feel strong. When was the last time I felt like this, high school perhaps. I walk with my shoulders back, taking in lots of air into my lungs. God I am happy to be alive today. Happy to have this body that is responding to my demands for it to get better and stronger. With each work out I feel less anxiety about rejection, about infection, about something going wrong. Since it's not. It has not since. Positive energy in running through my veins today.

Since the biopsy results came back negative for rejection, infection, or fungus growth of any sort, I have had my prednisone lowered by 5mg. I am also able to stop the blood thinners in 10 days when I get my filter removed. The filter and this blood clot that I had 4 months ago has been such a pain, that I am thrilled to have that chapter of my life closed. I saw the Thrombosis doctor this week, and the ultrasound showed no blood clots, and that's what we wanted to see. I don't think anyone expected for it to still be there, but who knows how long these things can drag on. I am just happy it's over. So much of this extra stuff that I have been dreading is coming to an end. It's amazing how things change in 3 months.

So what now? Do I keep the blog? Do I keep writing? I don't know. I have committed myself to writing a book. It has always been something that I have desperately wanted to do. To accomplish. I have lots to say, and always thought that I would want to get it down on paper after I had my transplant. Well, the time has come. I have started to write, and it has taken me away from the blog. I simply don't have enough energy for both. I find writing tiring, but rewarding, often exhilarating. Sometimes I can't stop. At the same time I don't want to make my blog something that I never wanted it to be. About what I had for dinner, and what Scarlett did today. Not that there's anything wrong with that, it's just not me. It's not what I wanted to say here. I guess time will tell.

Bronch and Biopsy day..and a whole bunch of good news

This week is my 3 month assessment. Monday I had clinic, PFT's, x-ray, CT Scan, and fasting blood work. Tuesday was the MRI of my brain. (Shannon I found out after I saw you Monday that it's not a standard 3 month test, so not to worry. I had it due to the fact that I was on the Novalung pre tx) Today I had my bronch and biopsy of my lungs. As we all remember, last time I had the bronch it did not go well. I had a massive infection and ended up back at TGH for a week on IV's, and then 2 more weeks on IV's at home.

I am proud to say that today it went really well. My lungs were clear, so the procedure was quick and easy. My doctor found no infection, and took a sample to check for rejection. So fingers crossed that goes well too. But so far I am thrilled that I had no reaction - and that the doctors are so happy with everything.

At clinic on Monday I was removed from a medication, which makes me very happy. If the biopsy results go well, I will have a whole bunch of other medications stopped also. I am VERY excited about that. Very exciting stuff.

On another exciting note, it seems like my leg pain is gone. Just like that. I did not take the hydromorphome this morning, and as I suspected, no pain. So I will continue to see if this goes well. I am still on the long acting oxycodone, but am being weaned off slowly. I am hoping to be off all pain killers within the next few weeks. Again, great news. By the end of March I may be off all my inhalations and half the medications, as well as all pain meds. A dream come true if this happens.

This week is also my last week of physio at TGH. This is so great for many reasons. I am ready to start attending the club gym, and I signed up for a few Yoga classes starting mid-March. I am also quite tired of being at TGH 3 or 4 times a week. It's too much. Now I will be attending clinic once every 6 weeks, and that in itself is a miracle. I will be leading a pretty normal life. Whatever will I do with all that free time...LOL!!

On a completely separate note......I have some great Scarlett news....

Today, my little Scarlett had her first poop on her potty!!!! We sat her down, and within minutes she did that magical potty business. I know this is lovely to talk about, but I had to share!!

And of course, a blackberry pic that we had to snap during the big moment!!

Here's to a good day, full of great news.