2009 all in a year for the Ritchies

What can I say about 2009. Never in my wildest dreams did I ever think things would go as they did, but at the same time, now things are perfect, as they should be. I have my husband, my daughter, and my new lungs. Somehow, 2009 accomplished what we wanted, but it was a battle in every way.

On July 17th, we finally met our little girl Scarlett after a lot of hard work getting her here. But it was more than worth it as we met the most amazing family on the way. Scarlett came into our lives and changed everything for the better. She is now 5 months and amazes all of us, and is a true blessing in all of the pain that we have all had to endure otherwise. We just love our Scarlett Anna more than anything. I cannot wait to back home with her very soon taking care of her, being her mom.

Health. 2009 was the year of bad and good health. In January 2009 I was already very unwell and on IV antibiotics. In fact I was on IV's most of 2009, until this miracle came and I got the lungs I needed. It began to be incredibly difficult in the summer, when I had to use oxygen 24 hours a day and life just had no quality left to it. It was then that all we could do was wait. No one expected me to get that sick. It happened so fast. From lungs that still somewhat worked for me, to ones that were no longer working in a matter of a week. Then came the ventilator, sedation, ICU, TGH, Novalung, and finally before there were no more options, a donor. Lungs. That miracle. How it all unfolded, is a story I am yet to tell. It is uncanny. Due to the media coverage, the story was much more than a regular transplant. But I will leave that for another time. There is too much to say, too much to write about. Much of it is just pure miracle.

On the family side of things, we once again proved that together we are stronger than when we are apart. There was a wedding, John and Angie's. And their little girl born November 13th, Sophie. All such amazing news.

So, we welcome 2010. It will be amazing. A new chapter, and a new beginning of sorts, but really a continuation of my life. Good or bad. With all it's up and downs. My life.

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)

Mother and Daughter Reunite (+ Toronto Star)

Hi Everyone,
A lot has happened since the last blog update - and you'll be happy to hear that all of it is good news : )

Natalia is right back to full-steam-ahead recovery and progress, back to the second stage Step Down Unit after last week's setback, starting to eat food in mass quantities (she's currently only 88lbs from trials, tribulations & transplant with an ideal weight of 125-135lbs [I know, I'm sorry Nat, I just told them your weight:], gaining more strength every day, walking further and further, in better and better spirits, and continued monitoring of her new lungs have doctors concluding that they are a particularly strong set...and Natalia is adjusting to them superbly.

Natalia and baby Scarlett were reunited yesterday via a covert, undercover visit (children under the age of 11 aren't allowed in this part of Toronto General Hospital so Scarlett was snuck in - for any/all medical staff currently reading this thanks in advance for turning a blind eye). It was quite a sight to behold (see video link below).

The key components to Natalia's next steps are continued patience combined with food. Lots and lots of both (Natalia is busting to get home), but food in particular for critical weight and additional strength.

So, Natalia won't be home for Christmas, but she will be home soon. Exact date is yet to be determined because every day is a little bit different...sometimes 5 steps forward, other days a few steps back, but overall progress to the goal line which is the most important part.

Her hands are still shaking (cause cannot be determined....likely due to how under weight she currently is and not related to immunosuppressive drugs as mentioned in a previous post) which has been preventing her from getting online to start writing in her blog again, but her emotional and psychological healing from her too-close-to-death ordeal has been particularly tremendous in the last few days which has encouraged her to fight through the shaking and personally type a Holiday/Christmas message to all of you very soon so keep your eyes peeled....

All the Best and Happy Holidays To All,
And continued thanks on behalf of Natalia, Martin, Scarlett and family for your incredible interest, support, thoughts, prayers, love, offers, wishes.

Myles Slocombe
PS: FRONT PAGE COVERAGE WITH UPDATE ON NATALIA&FAMILY's JOURNEY in the TORONTO STAR:
http://www.thestar.com/living/christmas/article/742570--a-breath-of-life-for-christmas?bn=1
Special and ongoing thanks to Reporter and friend Barbara Turnbull

Recovery Setback

Hi Everyone,
Since the last update on Wednesday morning Natalia has encountered an unexpected bump in her progress.

It's not entirely known yet what has happened, but her body may have had a reaction to one or a combination of the medications she's on that may have created an adverse reaction and/or medical staff may not have provided her with the amount of food her body required via feeding tube after she had another bronchoscopy (Natalia is also Type-1 diabetic so food intake is critical).

The last 3 days have been unsettling for her - she may have had a seizure, lost a lot of weight rapidly, was at times feeling paralyzed and numb, had to be taken back up to the Step Down Unit on the 10th floor where she is right now and has experienced a few other things that have all been a physical, emotional and psychological blow for her and shock to Martin and family.

The GOOD NEWS is she's starting to feel better. And has been sleeping alot. And eating alot. Current theory in the Ritchie household is that her current recovery is due in large part to her mom Hanna's polish soup recipes... (Nat has just started to be able to eat actual food again)

The last few days have certainly been a confirmation of the nature of cystic fibrosis, organ transplants and Natalia's journey. And proof positive of why it's important to not get too far ahead of one's sense of relief and excitement when progress is being made due to the nature of the beast. There can often be unexpected turns for the worse. But as you know there can also be expected and unexpected turns for the better as well and that's what's being focused on right now.

Thank you in advance for an increased infusion of thoughts and prayers at this time.

We'll update you again when we have a better sense of things...and as Natalia gets back on her road to recovery full steam ahead which she'll undoubtedly do.

Myles

Unprecedented Progress

Hi Everyone,
You’ll be happy to hear that Natalia is now fully defying all expectations and doctors have started to express astonishment at how well and quickly she’s recovering given the severity of her circumstances up until 3.5 weeks ago when she received her double lung transplant at the absolute 11th hour.

As of Monday she has now ‘semi-graduated’ via the next stage of Step Down where she's now on the 7th floor of Toronto General Hospital vs. the 10th - no more multiple hook-ups to monitor her vitals, tracheostomy tube has been completely removed so she’s breathing on her own and able to speak consistently, all of her staples from surgery have now been removed, her drainage tubes are long gone, she is walking around the wing of the hospital an entire lap at a time, her burning desire to start eating food again should be satiated in the next day or two when the green light to eat is given and the feeding tube is removed, and recent results from chest Xrays were described by one doctor as “beautiful”...they are completely clear and her new lungs are working superbly.

All of the good being said, in the last few days Nat has been in more post-operative pain than usual, around her ribcage and along her sides in particular (for the operation doctors had to literally cut her chest open, move her ribs apart, and then join them back together afterwards with titanium) which has required additional pain medication, and the immunosuppressive drugs that she’s on (and will be on for the rest of her life) are causing her hands to shake a lot right now as doctors adjust dosages to find the right combination that works most effectively for her. She has also had quite a bit of abdominal/stomach pain. But Natalia keeps these factors in context and sees them as small inconveniences when compared to the bigger picture of how far she's come and where she's working on going...: home.

As those of you who have been following Natalia’s journey over the last month or so in particular already well know, her will to recover and be home for baby Scarlett is an undeniable and unstoppable force. You’ll be happy to hear that as her strength continues to grow, so too does her will and resolve and determination to get better even faster. Her thoughts are on Scarlett always. A small example to illustrate her mindset: when a doctor was visiting with her on Monday and exclaimed that Natalia is now recovering faster than most double lung transplant patients under the best of circumstances, her innate and natural reaction was to express surprise because she’s of the opinion that she’s just not healing fast enough. Typical Natalia fashion.

With all this talk of progress, many of you are likely beginning to wonder when Natalia will return to writing in her blog. Rest assured that it will be quite soon. There are several reasons why she hasn’t been able to just yet, first and foremost because her hands are shaking from her anti-rejection medications she has limited ability to type short messages via her BlackBerry and typing with a computer keyboard is proving particularly challenging. She’s also on heavy doses of pain medication (probably enough to knock out an elephant - Natalia is of course quite unphased but the meds do prevent clarity of thought at times). And lastly, there’s a bit more emotional healing that needs to take place for her. When she learns and thinks about what she's been through (fortunately she doesn't remember anything since her last day at St.Michael's Hospital just before being intubated and transferred to TGH) let alone what she is going to write about and where to start, it all becomes a bit overwhelming for her as I’m sure you understand and can appreciate. But she will be reaching out soon. A particularly meaningful and symbolic further step forward that will be indeed.

So. Lots of positives! And unprecedented progress. Feedback from doctors in the last few days about how far Natalia has truly come from how far gone she really was has further confirmed to us that not only has Natalia defied all the odds that had quickly stacked against her, she has pretty much transcended them. All of them. Every single one. She continues to amaze...and will be home with Martin and Scarlett and family soon.

Myles
ps: the photo below is Casa du Ritchie - with Christmas and Welcome-Home-Natalia Tree - Martin has it primed and raring to go...

The LEAP to Speech + Online Resources

Hi Everyone,
She speaks!
With her new tracheostomy tube, you'll be happy to hear that Natalia can speak again!

In her typical style, Natalia has leapt right over the hurdle of potentially needing a speech pathologist after a month of not being able to say a single word and weeks of tubes pushing past her vocal chords. It's a bit whispy at the moment, but Natalia's voice is back.

So she's now walking (in longer and longer stints, with a bit of assistance, down the hallways of the Step Down Unit) and talking.

Small steps are turning into longer strides.

Given where she was just 3 weeks ago - deteriorating quickly and getting far too close to death's door - thanks to hope and determination and science and medical skill and the incredible generosity of someone who gave the gift of life and his/her incredible family that helped make it happen, Nat is walking and talking and smiling and getting closer and closer to continuing her recovery at home where she can return to being a Mom and Wife and Daughter and Sister and Aunt and Friend on a bigger scale and more consistent basis than ever; moving forward with her new lease on life and getting busier as she gets stronger to catch up on lost time and experiences (I think it's starting to make Martin a little nervous - early morning runs, visits to markets, long walks, trips....he's going to be quite busy)

As I'm sure you'll agree, it's all really quite incredible. Miraculous even.

The power of determination, patience, will, spirit, love, family, support, generosity, medicine, technology....and serendipitous timing.

Your unfaltering support of Natalia and her family's journey has, is and will always be something that they appreciate and thank you for on a scale that can't be expressed.

Nat's original hope and goal of sharing her personal story to help people understand the trials and tribulations of a terminal disease....to leave a journal and lessons for her daughter Scarlett....and to help humanize a national issue by helping to put a face and personal story to the importance of organ donation with the hope of helping bring some greater good for other Canadians that are currently on a transplant waiting list (approx 4000) and to help future Canadians in need of an organ transplant has been working: there is strong evidence from many of you that a difference is indeed being made.

Victories on two fronts.

For those that may not have had an opportunity yet, please consider your choice and wishes about organ donation, discuss them with your family, and see below for more information.

For Natalia, a final bronchoscopy was conducted yesterday and all was clear, the trach should be completely out in a couple of days allowing her to breathe entirely on her own all the time, to start eating food again, and to continue the count down to getting home with her family which doctors currently estimate to be approx 2 weeks.

We'll keep you posted as the victories and remarkable journey continues...

All the best,
Myles Slocombe

ORGAN DONATION:
By making your wishes known, you have the opportunity to save up to 8 people’s lives and enhance the lives of up to 75 more should, God forbid, something happen to you. In many cases, when families lose a loved one, the gift of life their loved ones were able to provide is the one tangible silver lining that brings a degree of comfort at a time of loss. Don’t just discuss it with loved ones: sign your donor cards and add your name to applicable provincial registries in the provinces that have them. Even more powerful is to state your wishes in a living will. All of the above will let your next-of-kin know your intentions, having your name in a registry can save important time, and a living will with a health care directive carries the most amount of weight.

For more information and to register your wishes now:

->Alberta, Nunavut, Northwest Territories:
No registries at this time – sign the back of your health card
->British Columbia:
http://www.transplant.bc.ca/index.asp
->Manitoba:
http://www.gov.mb.ca/health/donor.html
->New Brunswick:
http://www.snb.ca/e/0001e.asp
->Nova Scotia:
http://www.legacyoflife.ns.ca/
->Newfoundland & Labrador:
Donor Card/Driver’s Licence
->Ontario:
http://www.giftoflife.on.ca/page.cfm?id=3F79E442-F7FD-4057-AA63-7B0279A17EF1
->Prince Edward Island:
Place sticker on your health card renewal form onto your health card and/or have red heart engraved into your driver’s license at time of renewal
->Quebec:
Obtain donation sticker from local hospitals and pharmacies and attach it to your health card
->Saskatchewan:
http://www.health.gov.sk.ca/organ-and-tissue-donor-information
->Yukon: Donor Card

ADDITIONAL RESOURCES:
http://www.organ-donation-works.org
http://www.recycleme.org (Ontario only, but a very effective & informative website)

Thank you.

Onward & Upward

Hi Everyone,
This afternoon, we're very happy to report, Natalia walked : )

We're not talking 1 or 2 steps here. We're talking full-on-no-holds-barred-taking-physio-up-a-notch walking all the way to the end of the hallway.

Just around the corner, with new tracheostomy tube installed, will be the ability to speak again.

And something Natalia's expressed particular excitement about: very soon the ability to be done with the feeding tube and start being able to eat solid food again (I don't think she'll be able to keep up with baby Scarlett, but that's a whole other story...)

Will keep you posted as more gains are made...
All the best,
Myles

One Step & Victory At A Time

Hi Everyone,
Natalia continues to recover at a good and steady pace: all drainage tubes that were connected to her chest cavity have now been removed, continued bronchoscopies are doing their job, infection remains but is being effectively managed by new antibiotics, white blood cell count is down and in a better range, physiotherapy is progressing, she continues to gain strength and alertness and is, one step at a time, getting closer and closer to getting home.

She hasn't been able to start speaking quite yet, but that step is very close and very soon.

Exact date for her victorious return to baby Scarlett and the elated smiles of Martin and family is to be determined, but Operation Home For Christmas is still in the cards, and, as a fallback position, Operation Home in the Very Early New Year is a guarantee.

Martin & Natalia's mom Hanna are particularly busy getting things prepped on the home front, including Martin having the approx 50 foot fir tree on their front lawn covered with white Christmas lights to greet Nat on her return (professionally installed with assistance of a cherry picker, he's pulling out all the stops). Scarlett is busy getting chubbier and cuter for her Mom (now 4.5 months old, a whopping 20lbs, 3 months ahead of eating schedule & already eating solid food...look out Xmas cake...).

In recent days Natalia has been able to start getting online which is another great step forward. When she's a bit more ready, she'll be logging in to say hello to all of you - a particularly large and symbolic stride forward no doubt : )

Very Best To You All, and continued thanks for all of your support of Natalia, Martin & family's journey,
Myles

Slower & Steadier Wins The Race

Hi Everyone,
On behalf of Natalia, Martin and family, thank you for your continued support while Natalia continues to recover at Toronto General Hospital. Since the last update on Monday progress has been made for her on some fronts, less so on others, with the key theme being slower and steadier wins the race.

Natalia’s awareness and overall strength continues to improve which is key. After a few tries, she has been able to stand up and walk a short distance on several occassions with assistance. Intensive physiotherapy continues and is helping her body and movement improve.

She hasn’t been able to speak yet, but a new tracheostomy tube is going to be used tomorrow which should allow her to start talking and will be a large step forward (the trach itself likely won’t be required much longer).

Medical staff performed a bronchoscopy today (described in an earlier post: a bronchoscope is a flexible metal tube with a camera and suction that is inserted down into the lungs) and have detected quite a few secretions. Additionally, her white blood cell count has increased since the last update and is higher than ideal. This doesn’t suggest organ rejection as much as it strongly indicates an infection, so doctors will be putting her on a new course of antibiotics which will hopefully take care of it in short order.

Unfortunately, there are indications that Natalia may have to remain at TGH for all of December, but that hasn’t been completely determined yet. As you’ve likely detected over the course of following Natalia’s journey, variables change all the time which can be for the good and sometimes for the bad. The most important thing is she is on an upward trend of improvement...there are just a few bumps which, all things considered, were to be expected.

As you know, where Natalia has been battling back from is a place that hopefully none of us will ever have to experience and a place from which most people, quite frankly, wouldn’t have survived. Natalia has a spirit and will and determination to live and be a loving daughter, and sister, and friend, and aunt, and wife, and Mom to baby Scarlett that really does defy description. It’s inspiring. It’s motivating. And it puts everything we tend to complain about and take for granted into perspective. As much as I’ve tried to put recent weeks into words on her behalf...a lot of what she’s been through...and the totality of what she’s been through...well...there just aren’t.

The intention of this particular blog update isn’t to have a negative tone, but as mentioned in my first blog post, Natalia wants to provide candidness without any sugar coating.

This is still a hard time for her. A different kind of hard, because she is of course on the other side of the transplant now so it’s all about the pace at which she gets better, rather than before when it was all about the speed at which she was getting worse.

Progress will continue to be made. The course of events and the lifeline that became available when the call came with her new lungs just 12 days ago is astounding. But it is still a hard road.

The aforementioned “totality” and culmination of what she has been through takes a toll physically and psychologically. But, as we all know, Natagladiator is an Olympic fighter and be it for Christmas or just into the New Year, she will be home soon where her new chapter and lease on life awaits.

Myles