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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
CBC will be airing a third installment on Natalia and her family tomorrow night (Friday) on their primetime show "Connect with Mark Kelley" during their 7:00-8:00pm and 8:00-9:00pm (Eastern Standard Time) cycles, covering aspects of the current stage of Natalia's journey.
The goal of the coverage was and still is to tell Natalia's compelling story to bring a human face to the national issue of Canada's terribly low organ donor rates with the hope that it would motivate viewers and readers to discuss their wishes with their loved ones, sign their donor cards, register their wishes with their provincial organ donation agency and/or even better, make their wishes known in a living will (links to further info will be provided in an upcoming post to help you do exactly that).
Best case scenerio, this coverage will help bring a direct donor for Natalia, help in it's own way to alleviate our national organ donor shortage, and hopefully help save and enhance the lives of other Canadians.
Worse case scenerio, the latter two still apply.
So tune in if you can.
If unable to see it tomorrow, we'll be posting a link to it once it's up online.
For those that may not have seen the first two installments:
CBC PART 1:
http://www.cbc.ca/connect/2009/11/on-a-mission-new-lungs.html
CBC PART 2:
http://www.cbc.ca/connect/2009/11/on-a-mission-new-lungs-pt-two.html
Special thanks to Producer/Reporter Nick Purdon - he and the Canadian Broadcasting Corporation are growing members of Team Get Nat Lungs.
Myles
Hi Everyone,
Last night at 5pm the decision was made by Dr.Keshavjee, his team, Martin and family to proceed with putting Natalia on the Novalung (option 4 in previous post) due to dangerously high carbon dioxide levels in her blood that were not coming down despite doctors' best efforts and if left unchecked would have poisoned her. Once decided, doctors moved swiftly and by 6:30pm they were performing the 1 hour surgery in her room to connect the device to major arteries near her hip. The procedure went smoothly, her C02 levels immediately started to come down and she slept through the night under heavy sedation.
This stage is a double edged sword. We had hoped that the Novalung would not have to be used....that lungs would have come by now......but are fortunate that this option even exists as it is the only thing that's keeping her alive right now. In a best case scenerio, doctors will be able to reduce Natalia's sedation and if her lungs will allow it, with a bit of time, they may be able to remove her ventilator. There have been cases on the Novalung where patients have been able to walk and talk and eat quite comfortably. Whether the ventilator will be able to removed in Natalia's case is yet to be determined.
Bottomline, the Novalung buys Natalia time until lungs do indeed become available. The only immediate risk to the decision that had to be made was alluded to in previous post: blood thinners are required in order to prevent blood clots on the Novalung and because she had been showing evidence of bleeding a few days ago, this is of some concern. If she starts to bleed, because of the blood thinners, the bleeding won't clot and therefore won't stop. If it's substantial bleeding, there is nothing the medical team can do. If it's moderate bleeding, my understanding is there are steps they can take to help manage things (ie/ blood transfusions) while the waiting game continues but, again from my understanding of the conversation with Dr. Keshavjee last night, it will likely eliminate live donor option due to the risks that are placed on the 2 live donors for an operation that has less of a chance of success. It may also rule out the possibility of a transplant from cadaver lungs. There would be no more options available.
A harsh reality indeed, but at this point in time, merely speculation and only if she bleeds. If she doesn't bleed, there is still every reason for lungs to come in time. The Novalung provides the opportunity for that to happen.
Lungs could still become available in the next few days.
Indeed, if well maintained on the Novalung, she has upwards of a month and because she's high urgency status for both B+ and O type lung types, there's every reason and very high chance that lungs will come with time to spare.
Incredibly, as early as 2 weeks after her transplant Natalia would be released from the hospital.
And within a matter of just a bit of time, she could be and still every reason why she will be pushing Scarlett's stroller with Martin in the park.
Myles
Hi Everyone,
Natalia remains well stabilized and has pretty much been completely out since last update. She appears to be more comfortable with the ventilator and tubes than she was when first transitioning into the ICU. For the first few days it seemed her body’s natural inclination was to continue trying to breathe for itself but is now in synch with the rhythm of the pump and at better ease in general which is reassuring to all.
She’s also more comfortable with the suctioning process. Despite being on a ventilator, her lungs continue to fill with fluid of course which needs to be manually suctioned out on a regular basis. To do this a hose device is pushed down the main tube down into her lungs, you push down on a button to create a vacuum seal and then pull the hose out which brings the fluid out like a siphon into a suction tube much like the one used at your dentist’s office. It was a painful process to witness at first (Martin, her dad Chris and I have actually performed it on several occasions as well) but her body doesn’t react to it in as tense a way as she first did (much like witnessing someone vomiting, but without any sound. [If too much information, my apologies, but as you know, Natalia doesn’t like things sugar coated]).
There have been a couple of things on the medical team’s radar. There has been some bleeding from the lungs that was coming up into the tubes so some bronchoscopies (bronchoscope is a flexible tubular instrument with camera and additional ability to suction lungs) were performed which weren’t able to identify a source, leading them to suspect that it isn’t chronic bleeding (which is a good thing) and likely a result of the intrusive nature of the ventilator.
She had a mild fever yesterday which indicated her body may be fighting an infection. It has since come down a bit which is encouraging.
Also of some concern is that her CO2 levels are higher than doctors would like. For those that may not know, sustained high levels of carbon dioxide essentially poisons the human body and can lead to cell damage, including cells in the brain (that’s worse case scenario, which this isn’t). This is not something that doctors have said explicitly to us, more a process of deduction, but if C02 levels don’t improve it appears to be raising the likelihood of moving to Novalung option which, as mentioned in previous post, is a transplant bridge until other option(s) become available.
There is tremendous upside with the Novalung. It’s actually a technological marvel that keeps people alive until organs become available and Dr. Keshavjee is a pioneer with it. In many ways it would be far better than where Natalia’s at with the ventilator because it’s far less intrusive, would enable the tubes to be removed from her lungs and mouth – it could even provide opportunity to eat and speak and move if she doesn’t have to be as sedated.
The downside is that blood thinners are required to reduce likelihood of blood clots on the Novalung which can be problematic A) if the bleeding in her lungs is more significant than suspected and B) for time when organs come and transplant comes and they need to operate. Also, the body’s natural reaction to the Novalung which is essentially an external organ is to create antibodies against it which has potential to increase chances of organ rejection when lungs or lobes are received. I don’t know what the odds are, my understanding is they are remote, but all factors under consideration and part of decision making process.
On the living donor front, Natalia's brother, mom, dad and aunt have all been confirmed as B+ bloodtypes which is very good, and Martin is O+ which as mentioned before is a bloodtype that can work with others. Efforts are being made for the screening process to move forward in an expeditious manner, but understandably takes time. On a related note, we were actually contacted by a good samaritan who was so moved by Natalia's story that he wanted to be considered as a potential living donor and actually donate one of his own lobes. It's against hospital policy for members of the public to come forward for something like this, which makes sense, but it's testament to how much Natalia's story has affected people. The messages of support keep flowing in. As always, and again on behalf on Natalia and family, thank you.
So the wait continues. With optimism...cautious as it may be. We’ll of course continue to keep you posted as her journey unfolds and decisions are made. All of the above said, and all of the above aside, the best headline in the near future will of course be “LUNGS ARE ON THE WAY!” and the last 6.5 days will likely be something Natalia won’t even remember.
Myles Slocombe
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.
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