Fighting Hard

Hi Everyone, this is Myles Slocombe typing, a longtime friend of Martin & Natalia & family’s that has had the privilege to be a part of their team for the last while, including in the hospital over the last few days and as part of what Natalia likes to call “Team Get Nat Lungs”.

First, to start with some great news, Natalia’s brother John and his wife Angie had a baby girl on Friday morning at Mt.Sinai Hospital - mother and baby are doing very well (Sophie Boguslawski, a bouncing 7.6lbs). As you can imagine John is a bit busier than usual so I'm tagging in and submitting this blog post on behalf of Natalia and her family.

A lot has happened since John’s update on Thursday. Natalia has since been moved from St.Michael’s Hospital to Toronto General Hospital (TGH) where she is currently in the Intensive Care Unit. Although it may not sound like it at first, in many ways Natalia is actually in a better place in the ICU than where she was just a few days ago. She is now on a ventilator, so her lungs are being mechanically pumped which has brought her CO2 levels down significantly and she no longer needs to fight for breath. Her vitals are good. And she is in less physical pain with the assistance of additional pain meds. On Thursday night when she was moved to TGH, Natalia's mom summed it up when she said that where Nat is currently at is actually a relief.

Natalia has been under varying degrees of sedation, most often completely out so she can rest, other times more lucid and aware of her surroundings. When more awake, doctors & nurses can ask her questions to get feedback (she cannot speak due to the tubes in her mouth, but has been able to move her head to indicate yes/no and at times has even been able to communicate with pen & paper). As many of you know Nat has always been very proactive and in-the-know with her medical treatments, and that continues. Most importantly, Martin and family are able to communicate their love to her, she is able to receive it, and she is still fighting hard with an unbelievably determined spirit.

As serious as things are right now, please know that there are actually a number of positives.

For those that may not be aware, TGH has one of the most advanced organ transplant programs in the world. Natalia is under the care of Dr. Shaf Keshavjee (Director of the Toronto Lung Transplant Program, and is one of the most advanced, accomplished and highly respected lung transplant surgeons out there) and his huge team, so you can rest assured she is in very good hands. She actually couldn’t be anywhere better.

And, as mentioned, Natalia’s vitals are strong. Her other organs are working well. With the assistance of steroids and a feeding tube she is still a good weight. These are all important factors that mean she’s still in good condition, all things considered, for a successful transplant. And she is an absolute top donation priority. I can't quite say that she's absolutely "top of the list" because the organ donation system in Canada is interprovincial (and sometimes, as in Nat's case, also extends into the U.S) and at times complicated (it's more of a 'fluid' list), but let's just say that for her blood type and the lung size she requires, she is highest priority.

Fortunately, right now there are several options available that are under TGH’s, Natalia, and her family’s consideration:

1) Remain on ventilator for the short term while she waits for “B+” [blood type] lungs to become available which is the number one preference and hopefully happens very soon

2) Remain on ventilator for the short term while she waits for “O” type lungs which might be more likely (“0” type is more common and can be used, albeit slightly less successfully, with other blood types)

3) Living donors: Natalia’s mom Hanna, her aunt Maria, John and Martin are all moving forward with possibility of becoming a candidate to donate a section of their own lungs. All have blood types that would work, but there are other criteria that need to be met via an extensive screening process before this option could move forward if it were chosen. This is a relatively new option in the medical world. It requires 2 donors. A lower lobe is removed from one lung of each of the donors, reconfigured, and transplanted into the recipient. The screening process at TGH starts on Monday to ensure option is available should the time come that it is needed.

4) Be placed onto a “Novalung” as a transplant bridge to buy Natalia more time while she waits for options 1, 2 or 3. Natalia can’t stay on the ventilator for very long mainly because it increases the chance of an infection in her lungs due to open and exposed airway. The Novalung is cutting edge technology that works as an external artificial lung. It’s actually quite small (the size of a few CD cases stacked together), would be powered by Natalia’s own heartbeat, and would work by removing C02 from her blood and enriching it with oxygen ( http://www.novalung.com/ ).

The best scenario is of course the first option, followed by number two, then three, with the fourth being an intermediary step. There are both pluses and minuses to options 2 through 4, which can perhaps be explained in more detail in a future post.

Something a lot of readers and followers of Natalia’s blog have expressed an appreciation for is her candidness in what she has written. The experience she has been sharing. And the way in which it has helped people get an understanding of what people with a terminal illness of this nature often go through and have to face.

While Natalia is unable to speak for herself, we will keep you posted as things unfold. We won't sugar coat it, because Natalia wouldn't want it that way. We'll just try to do her blog and her journey justice.

On behalf of Natalia and her family, thank you so much for your outpouring of support - and for your continued thoughts, wishes and prayers.

Her journey continues.