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.

On The Comeback Tour, How You Can Help + Online Resources

Hi Everyone,

It gives Martin and team great pleasure to let you know that Natalia is doing very well since last night’s blog post. In her typical fashion, she’s fighting, fighting, fighting, starting to make progress in her recovery sooner than anticipated, and is currently exceeding expectations. The bleeding which was an issue has completely stopped. And all of her vitals are at normal levels. She does have a bit of a blood infection but it's being managed. The sedation has been reduced enough for her to start to wake up and open her eyes. As of right now, she can communicate by blinking & nodding yes/no and is cognisant of the battle she’s making strides towards winning. As Martin updated her and explained the gravity of what she's been through, her tears started to flow. Whether she will remember today once she gets past this next phase is to be determined.

As an aside, to help raise awareness about the trials of terminal illness and the incredible importance and benefits of organ donation, as most of you know, Natalia and family’s journey has been followed in the media --- to the chagrin of some and gratitude of others.

They made the choice to make their private story a lot less so in the hope that it would bring a greater good.

The outpouring of support for this choice has been overwhelming. The number of people who have written to say they have been inspired by Natalia’s story....inspired by Natalia and her family....inspired and motivated to make that important decision about their organ donation wishes should anything ever happen....to discuss their wishes with their loved ones (even better is to also make wishes known via signing organ donation card and even more importantly registering with provincial organ donation agency as a matter of record [see links below])....well....it has been equally inspiring and rewarding for Martin and all.

Countless people have also reached out and offered help in Natalia's time of need. Everything from babysitting Scarlett, to dropping off food, to coming by the hospital, to sending out emails to raise additional awareness. Martin and family can never thank you enough. Right now there's enough support to babysit Scarlett until she's well into her 30's (hopefully that won't be necessary:), feed an army, and keep a signficant part of the Toronto population awake with vats of tea and coffee.

Here is what you can do to really really help:

Consider making the very personal choice about organ donation, and take time tonight to make your organ donation wishes known.

On behalf of Natalia, her family, the approximately 4000 Canadians currently on transplant waiting lists; and of course on behalf of future Canadians who will need the gift of life, to those that have already done so: thank you, thank you, thank you.

Hopefully events over the last few days will inspire even more of you to do the same, because it really does save lives and makes the most profound difference for entire families and many many others.

On the media coverage front, tune into CBC’s “Connect with Mark Kelley” tonight for an update on Natalia and visual account of the last few days.

Also, here is some recent coverage by our Team Get Nat Lungs supporters at the Toronto Star:

Today:

http://www.healthzone.ca/health/newsfeatures/article/729390--new-mother-well-after-double-lung-transplant
Yesterday:
http://www.healthzone.ca/health/newsfeatures/article/729154--surprise-lung-transplant-gives-mom-renewed-hope

CBC Coverage from last week as promised:
http://www.cbc.ca/connect/2009/11/on-a-mission-update-on-natalias-health.html

Very best to you all,
And here’s to Natalia’s continued recovery,

Myles Slocombe

It’s never too late to register your organ donation wishes. 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)

Just Around the Corner

Hi Everyone,
So far things are going well with Natalia's new phase on the Novalung. Her CO2 levels have been substantially reduced from 120's down into the 50's which is a safe zone (we hover in the 40's), and there has been no indication of bleeding on the blood thinners so things are very stable which is excellent. With some additional research it's my understanding that the Novalung was invented in Germany back in 1996 and since then there have been approx 1200 uses of it in Europe with a 95% success rate. In Canada or North America it's been used 13 times to date, and in every single case it has enabled recipients to make it until lungs became available. If things remain stable for Natalia, there's every reason why the 100% success rate will remain exactly the same. She has some time (approx 1 month) and due to highest status for next set of B+ or O lungs that are the right size, they're just around the corner. Plus we still have the living donor option - Hanna and Maria have been removed from the list of potential candidates due to age and size, but Chris, John and Martin remain in contention and are busy undergoing a battery of tests.
Keep up the positive thoughts, keep up the positive prayers...let's get this done!
Myles

6 days

Last night I wrote a post, and after reading it this morning I had to erase it. It made no sense at all!! I promise to do more frequent updates as things go along, since longer ones I never have energy for, and that means they never get done.

I have been here for about 6 days. Tomorrow is a week. I know time flies like crazy. Especially for me, since there has never been a dull moment. Mostly however I am on percasette's feeling dopey and sleepy, and on my bi-pap sleeping. It's the only relief I get and that's okay with me. It's better than the alternative....wait, is there an alternative....that's right no there is not.

I have had a few scary episodes where breathing did not come. Instead a heart rate of 165 did, and the panic of chocking. It's the worst thing, and it happened last night leaving me tired and scared and defeated. Today I have seemed to returned to some sort of comfort. My slight panic over coughing and chocking I am working on. Last night did not help. The doctors keep reminding me about the anxiety component of not being able to breathe, but for some reason when they say it, it's like they are not giving me my share of credit for how the situation felt and how awful it was. Meaning that if I didn't panic, I would have been able to calm down sooner and not have the extent of an incident that I did. I guess I don't know how to stay relaxed when I am unable to breathe. I'm just a person here people, just a person that is weak and tired a yes panicked when was unable to inhale. The Bi-pap saved me. I grabbed it and slipped it on my face and it started to work for me. Seriously thank god for that machine.

So needless to say it has been a battle. One after the other.My mom is sending me movies of Scarlett every day. They are so cute. She is incredible. I don't have a lot to say about her. This is very hard for me. I am just fighting my own battles and know that she is being raised beautifully by her family.

2 months, 1 week, 1 day on the waiting list. Every day my doctor hopes it's the day. By placing me on the rapidly deteriorating status, she believes it will be any day. I hope so.

Late night ER

Last night, after days without any sleep, more need for oxygen, and what seems like an infection (even though I am on IV antibiotics) we made our way to the ER. I rarely go to the ER. It never makes sense to since I can often call my doctors and wait for a ward bed at home, avoiding the ER all together. But after speaking to one of my doctors last night, she was concerned enough about the situation to tell me to head over to the ER: She would meet me there.

Martin, my mom, and my dad packed me up and got everything organized for leaving. My mom and Martin would stay with Scarlett, my dad would drive me. Once I got dressed and ready, I really had a very hard time walking down the stairs to the car. Once I reached the front porch I had a coughing fit and coughed up tons of tar-like mucus. Those coughing spells leave me so tired, and part of my wanting to go to the hospital, is that I am starting to feel that being home is unsafe. In case I stop breathing as a result of these spells, I want to be in a safe place that can keep me safe until those lungs come. So off we went.

After that coughing spell, I felt much better. I was able to work less to breathe. For those of you who have never seen someone that is working to breathe from a medical perspective, it's much like seeing someone running to their full capacity on a treadmill. The difference being, with a treadmill there is always a way to step off, and recover. Once the cycle of working hard starts it can last minutes (when I walk too fast to the bathroom, desaturat, but gain my breath back when I sit down or rest), hours (after or before a coughing spell) or when in severe respiratory arrest for days. From being there before, it is by far the worst thing to go through in my opinion. When the heart rate never goes down, the shortness of breath never ceases, the treadmill never stops, it's torture. It can also be incredibly spirit breaking. You just want it to end, that's all you think about. Sometimes I would just sit in bed in the middle of the night and cry, that's all I had as an outlet for the breathlessness.

After about 2 days of this situation, and without the ability to sleep with a heart rate of 135 bmp, enough was enough. I could not do enough physio, or nebulized therapy to calm this down. I knew I had to go to the hospital. I welcomed anything at that point that would make it better.

At the ER, I met my doctor, who was quick to establish a new plan of action. New antibiotics (thank god for my Port - this saved a lot of time so that we could get blood work done, start new meds and not have me in more discomfort than I was already in - I LOVE MY PORT) and the Bi-Pap machine. http://en.wikipedia.org/wiki/Positive_airway_pressure Here is a link to what the Bi-Pap is and what it does. I will not get into it here, but it's a great thing! Has calmed me down and actually gave me the opportunity to sleep last night, if only for a few hours. It's not an easy thing to have on your face, but it's relief. At this point it's about small victories.

Today I feel much better. I have a crazy cough, but I am getting the stuff up. As for staying at the hospital for longer, I think right now I am set on trying to wait out the rest of my transplant wait here. It's a hard thing to think about, being away from home, from Scarlett, from the comforts of that life. But the fact is, home is very hard when you are in my state. I don't want to become more and more of a burden to my family, so I tend not to ask for help with some things, and get more tired. I am terrible for asking for help. Terrible. I hate it. But in the hospital I feel that everyone will get some rest from this. I know that Scarlett is happy and well. I know that people must think how can I possibly be away from her now, but the reality is, it is for her that I am here. To make sure that I can get a bit better (perhaps gain some weight and lung function) before the call comes. Staying at home and risking anything, just for the sake of being physically close to Scarlett is silly. It's childish. I am a mother, and I have to act for her.

One day Scarlett will say, mom it must have been terrible to be away from me when I was just 2 months old, after you waited for me for 9 months. and to her I will say. Yes it was terrible. but the fact is, it was a war I was fighting. A war being fought inside me, inside my body, and in war we do whatever it takes to stay alive. All mom's would do the same thing. It's not about what's comfortable, certainly not about what I want. It's about life and death.

As I sit here in the hospital, I have watched a movement start regarding organ donation on facebook and beyond. We have had friends send letters to the media, and post countless links to recycleme as well as my blog. The letters of support and love have been incredible. This outpouring, often from people I have never met, as well as dear friends has been such a victory for organ donation. With the way that this is spreading on facebook, I would not be surprised that many people waiting for organs in Ontario will get their wish sooner, or just in time, just by reminding everyone to talk to their loved ones about their wishes. The power of this type of media to get people talking is incredible. I am so moved by the movement.