Home in Time for Christmas (?)

Hi Everyone,

Natalia’s journey continues to make great progress from the depths of where she was just before her transplant last w/end – she continues to fight, to heal, to improve and get closer and closer to being able to return home; indeed, if all goes well, there is optimism that she will be home in time for Christmas(!).

Natalia’s progress, though steady, hasn’t been without a setback of sorts.....the setback seeming relatively “minor” in the context of recent weeks for Nat and all she has been through. Under more normal circumstances, the setback and even more so the remedy would have seemed a lot more significant.

Natalia had to have a tracheotomy.

Going off the ventilator last week proved too early as mentioned in last update, so for a more phased approach doctors had to give Natalia a “trach” so that when she needs the assistance of a ventilator, it's already connected to her via intubation via her throat (vs. having to re-insert all the tubes through her mouth, down her throat and into her lungs like previous ventilator setup) and all the medical staff have had to do is turn the ventilator back on for instant mechanical ventilation when required. This method has allowed Natalia to breathe by herself for growing periods of time, starting with short periods at first and now, at current stage, she’s pretty much breathing entirely by herself all day and, very soon, all night.

Natalia’s sedation has continued to be reduced. She’s no longer sedated for the purposes of actual sedation, but due to heavy pain medications, is still groggy.

Her awareness of everything is there though.

The only thing that’s preventing her from being able to speak at the present moment is the tracheotomy (which will likely be closed up in the next couple of days). So she’ll be able to start communicating properly very soon.

Swelling is down almost entirely now.

Physiotherapy began a few days ago, and there is optimism that medical staff will be able to get Natalia up and walking for short periods of time as soon as today.

2 out of 5 drainage tubes that are connected to her chest cavity to drain excess fluids and blood have now been removed.

The blood infection is still there but continues to be managed.

Her vitals remain strong. And her white blood cell count which spiked up to 29 late last week has trended down to 13, which suggests that the immunosuppressive drugs are working and preventing her body from rejecting her lungs.

Natalia will be moved out of the ICU in the next couple of days which will be a huge milestone - down to the 7th floor where TGH has a “Step Down Unit" where extensive physiotherapy and rehabilitation will take place as they prepare Natalia for her return home.

So some amazing progress has been and continues to be made.

Martin and family are doing very well and are of course more and more relieved. Their happiness quotient continues to grow as Natalia gets stronger. Due to the rollercoaster ride they’ve been on in recent weeks and the overall ride they’ve been on due to the nature of Cystic Fibrosis, they do have some inherent caution as a preemptive coping mechanism so-to-speak because they do know things can change. They haven’t been jumping up and down with blind elation, but their smiles are defininitely getting wider and wider. And their excitement grows about the very real prospect of Natalia getting home in time for Christmas – something that, as you well know, was beginning to seem like an impossibility up until her new lungs came.

It's all a continual testament to the power and life saving & life changing importance of organ donation. As John stated so well in the last CBC installment, if there is a moral to this story, let that be it. The difference it makes cannot be put into words.

Thank you to everyone for your sustained concern, thoughts, prayers, hope and optimism for Natalia, her family, their journey, and her upcoming return home.

What a day that will be.

And although the walk in the park with Scarlett and Martin may have to be a snowshoe or cross-country ski, that day will come as well.

We’ll continue to keep you updated as Natalia’s victories continue - and it won't be long now before Nat will be online, typing, and sharing her journey again with all of you.

Myles

TO Star Coverage

The Toronto Star's coverage and support of Natalia's story continues - here is a link to an article today - special thanks to reporter Barbara Turnbull.
http://www.healthzone.ca/health/yourhealth/women%27shealth/article/730426--miracle-lung-transplant-call-came-literally-at-11th-hour?bn=1
To help keep you updated, Natalia continues to improve w/ leaps and bounds - general swelling has come down signficantly in the last 24 hours and today doctors tried to remove her ventilator (ahead of their original forecast of up to 2 weeks post-op) but quickly realized that her body isn't quite ready yet. Soon though. Soon.
Myles Slocombe

CBC Coverage

Here are some links to CBC's most recent coverage on Natalia as the new show "Connect with Mark Kelley" follows the journey...
Installment 4 - On A Mission: Natalia's New Lungs:
http://www.cbc.ca/connect/2009/11/on-a-mission-natalias-new-lungs.html
Connect's main page for the story:
http://www.cbc.ca/connect/2009/11/natalias-new-lungs.html
Continued thanks to Producer/Reporter Nick Purdon.
Natalia's recovery continues to progress - reaching the 72 hour milestone tonight!
Myles Slocombe

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)

11:59 Of The 11th Hour

Hi Everyone,

At no time was hope ever completely lost but I must admit things did reach a stage for Natalia and the decline of her health in the last few days (CO2 levels came down w/ the Novalung but getting enough oxygen into her blood was starting to prove an insurmountable challenge plus she was going septic) that makes writing the following 3 words a rather surreal and hard-to-believe experience:

NATALIA GOT LUNGS!!!

Yes....you read it correctly....

NATALIA GOT LUNGS!!!

After a successful transplant she is back in the ICU where she is stabilized and doing well considering the battle she has been through.

There was some initial concern about post-operative blood loss but that is being controlled, her blood pressure has become normal again, her C02 levels are currently 39 vs 120+, she is now receiving 40% oxygen on a ventilator vs. 100%, her oxygen saturation is 98, her temperature is up at 38.3 degrees C but white blood cell count is down to 13 (which suggests her immune system isn’t creating white blood cells to fight against her new organs). Her O type lungs are healthy and working.

Apparently Natalia will likely be kept completely sedated for several more days and it’s unlikely that she will be coming off the ventilator for the next 2 weeks or so (when she does come off it will be done in stages) because she is currently too weak to breathe on her own.

How close things came for Natalia is hard to fathom and harder to convey.

It has been discussed and agreed by Martin and family that the timing was quite literally a miracle.

To give you a sense of how close things were, when I spoke with Martin less than an hour before the call came out-of-the-blue he was literally at his office preparing his last will and testament and putting his business affairs in order as a precautionary measure in preparation for the possibility and hope of going into surgery as a live donor to try and save her life.

Indeed, Martin, John and Chris were fully and equally prepared to hear the results of a meeting with doctors scheduled for yesterday afternoon that either A) Natalia was no longer a candidate for any form of transplant due to her deterioration or, in their hope and estimation more likely B) the living donor option would be moving forward and likely moving forward almost immediately with 2 of the 3 of them before it was deemed too late to be viable, her candidacy removed, and all options and hope lost.

And then, the lungs came.

During what must be a profound period of mourning for another family right now, the ultimate gift was bestowed upon Natalia. The most generous gift a human could ever possibly receive has been provided by complete strangers and the gratitude of Natalia’s family cannot be expressed in words.

There’s actually quite a lot about the last while that can’t really be expressed in words.

Natalia’s journey - her battle, her will, her spirit, her determination, the love she has for her family and the love her family has for her - defies measurement and defies description.

It's a story that couldn't have had many more twists, many more turns; any more ups, any more downs - and any more at stake.

Martin and family are doing really well. They’ve been on the rollercoaster ride of rollercoaster rides as you know, and currently have what I think is a sense of cautious relief with elements of residual disbelief. The reality and extent of the recent course of events hasn't had a chance to settle in for them yet, plus they are fully aware of the fact that Natalia is still in a fragile and vulnerable state. So they’re optimistically realistic or realistically optimistic, one of the two.

Natalia's battle has been one of unbelievable proportions where human will, science and the skill of incredible doctors and medical staff all came together to beat what was quickly becoming a certain path - but as she sleeps and rests and recovers right now she is not out of the danger zone yet.

But she is on the other side now. A new battle has begun. And also another chapter.

A humble and continued thank you on behalf of Natalia and her family for the concern, thoughts, love, prayers and support of all of you, and to the donor and donor family who gave so much.

We’ll continue to keep you posted as things progress for Natalia. There will be more obstacles. But there will also be more victories.

And Natalia is a giant leap closer to that walk in the park.

Myles

Everything's Okay

Hi Everyone,
Due to some patient confidentiality policies that we understand and respect, it's best that we not publicly blog current events at the moment - please know that Natalia is doing well, and we will be writing more soon.
As always, thank you for your support....your thoughts....your prayers.
Myles

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

CBC Coverage

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

Next Step

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

Cautious Optimism

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

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.

Thursday morning, 4am

This is Natalia's brother writing, not the message i wanted to share with you, but last nite things took a turn for the worse. Natalia struggled in clearing her CO2 levels and a decision was made to put her on a ventilator. She is now resting and is not in pain, so overall this is a good thing since she won't have to suffer the way she has for the last number of months. She is still at St. Michael's hospital but will be transferred to Toronto General Hospital later today where she will wait for the lungs to arrive.

So keep praying and hoping and spreading the word about Organ Donation. I am really sorry to have to tell you this, it really hurts me to write it since i know how much you all care and love Natalia, and how invested you are in her recovery. I have a strong belief that a donor will be found. Really do.

Thank you from our entire family.

Hard Days

Starting a post is hard when I have not written for a bit. I feel like saying I'm sorry for not writing more often, but the past week or so have been a blur for me in many ways. I have been dealing with more pain and more panic attacks. Just when it seemed that things were getting better, I would experience something else. A thought or a conversation that would trigger an attack and my inability to breathe.

After that original attack on Friday, things seemed more stable, though the presence of small attacks were there all day. Throughout the week things got much better, and then finally something set off another pain attack and another panic attack would set me back all those days I moved forward. These days have really worn on me. I can't say that going through this has been expected in any way by either my family or by myself. Along with the on and off bleeding, we have been in real disbelief with which how much we have had to cope. The last time I had severe bleeding was 2 nights ago, and it was much more than usual. This time my haemoglobin was effected the doctor said, and the effort of coughing up the blood was really hard on me. I was choking on the blood and had to leave my Bi-Pap in between the cough ups, to help me get through it all. By the time I had cleared all the blood, I was so tired that they gave me something for the terrible pain I had. I slept for most of the day.

Due to the blood I was unable to get my Tobra and Pulmazyme as they are irritants and would likely make me bleed from my lungs again. This was really hard for me to do. Those drugs allow me to breathe somewhat! When the blood totally stopped on Wednesday, my friend Melissa was helping out that night by staying the night at the hospital with me. She's amazing, Taking the time out of her life and spending midnight to 6am by my side. The doctors really want this as I am often sedated and need more help. Anyhow, Melissa arrived with her boyfriend (he just wanted to pop in and say hi to me), and at that moment, for no reason I began to once again cough up tons of blood. Her poor boyfriend, who's never been around CF before got quite the show!! But he hugged me and was amazing. He's a good friend of ours. That was Wednesday, with a few hurdles that night. Thursday, no blood, lots of pain killers due to lots of pain. Friday, more blood, controlled pain through long acting and short acting pain killers. Ups and downs. Finally I had had enough and took an Activan to sleep. I needed a break! So I slept 16 hours.

Friday evening before everyone went home, my doctor stopped by my room before she went home to speak to me. She was visibly upset when she spoke to me. I was sleeping when she came in. Martin was with me, I was on my Bi-Pap. I opened my eyes. She told me that it was going to get better, that we were just going to have to get past this. Whatever this was. These attacks were just panic attacks, and were not a reflection of what my body was doing right now. The fact was I had just gained weight due to the Lipids. My white count was down, and the bleeding seems to be over with. Panic attacks are common in this situation she said, so close being able to breathe, but not being able to. But we will get through it together she said and I believe her. I do. As she walked out the door she turned filled with emotion said "I will not let anything happen to you" Dr. S is another one of my favourite people here.

Since I have been very immobile to do anything in my condition, I have been able to do a lot of exercises in bed as well as a new physio therapy. I will ask what exactly it's called when I see my physiotherapist tomorrow. It focuses mostly on massage and relaxation to allow me to move as many secretions as possible. It has really been working, especially since E came in on her weekend on her days off. I really do have an amazing team that will do so much to help me get stronger and past these tough moments. I just adore E, she is unbelievable and has done so much for me during the past few weeks. When I have one of these attacks E is one of the people that can help me breathe.

The weekend was overall better than the week. Last night my mom stayed with me. It went pretty well. I am a lot stronger and feeling like perhaps this could be the end of the attacks. We certainy hope so. They have taken a toll in my treatments and even in my overall CF care. This is why I really want to move forward from this. It has been just so hard on us. The stress has been too much. We are now hoping that things stay more stable, and of course that this call comes.

Below is a really really cute Scarlett video! I thought it would put a smile on your face....since it really put a smile on my face!!

2 days

During the last 2 days (Friday and Saturday), I have been facing a new battle that I certainly have not expected, at an intensity that I have not expected. Yesterday I woke up and had my first, of what would be a series of debilitating panic attacks. Panic attacks that constricted my air ways so much that the team had thought that I had collapsed my lungs.

Yesterday morning I woke up and I could not breathe. I slept for a few more hours than usual and no one woke me up as I have not been sleeping well and they thought to let me sleep. When I did finally wake up, I was so congested with mucus that I was unable to catch my breath after taking off the Bi-pap. Along with the pain that I was experiencing in my lungs, I quickly became unable to move and panicked. I used my call bell to get help, but at that point I knew I was in trouble. The nurse came in to give me my IV medication and my pain medication, and from then on everything is a blur. I was unable to breathe, gasping, begging for her to help me. All I really remember then is a stream of people coming in, coaching me through the breathing, telling me that they were hearing air in my lungs, that they were still working. A portable x-ray machine was suddenly here and I had a blood gas done. I have no idea how my RT did a blood gas during that first few minutes. I remember I was shaking. They asked if I wanted morphine, I said yes I did. I got it. Relief came.

This is hard to write. It was terrible. I cannot describe what it felt like, aside from drowning or choking over and over again. I was completely floored by what had happened, and what was more alarming, was that it set off a stream of panic attacks for the rest of the day and night. I was mostly sedated for the rest of the day. Clearly not myself. In and out of mini attacks and tears and pain. At one point the pharmacist came in to talk to me about a new anti-biotic that I was going to be taking. My doctors and I had decided that I needed a change, my white count was rising again. So we chose the only drug I have not been on in my life, a drug they only use when options become scarce either due to allergies, or in my case when we're at the end of the line in terms of organ failure and all other options were used and reused and basically used up. So we decided to use Chloramphenical. It has one serious side effect which is the reason that they do not use it until there are no other choices. I will not go into details, but this rare side effect would keep me from a successful lung transplant. The pharmacist came in to encourage me that it was so rare they have never seen it, and in fact research had shown that it only presented itself in the asian population. It is however something they have to tell us about, and I did not use it up until now due to this side effect. I wanted to exhaust all my other options. Anyhow, on Friday I was in such a state, that when he came in to talk to me, mid way during him speaking my ears shut down and started to ring. I heard blood rushing, and heard him no more. Now that's a clear signal from the psyche if I ever heard one! My body was tired, but my mind decided it too needed a break.


Breaking the cycle of the panic was the only thing that helped. Someone was here with me all Friday and yesterday. I needed security and pain meds, and we got through it. But I cannot believe the extend that my body shut down. I was reassured over and over that my lungs were no worse or better, that this was my mind reacting to stress, pain, and difficulty breathing. The power of that is shocking to me. Not so shocking to the medical staff that understand that I am under a lot of stress. Add to that, moments when I cannot catch my breath, hyperventilation, coughing spasms, pain, and new medications., and it all adds up not only physically.


Yesterday was already better. John came both mornings at 6am to see me wake up. Waking up is very hard right now. Sleeping is too, but once I sleep I want to sleep more, and since my mucus builds up, I need to wake up every few hours and clear it out with masks and physio. It's a lot of work, but the alternative is a morning like Friday.


To add insult to injury, if you want to call it that, yesterday morning I coughed a lot of blood up. It poured out of me. John held the garbage can at the side of my bed. Imagine that in the middle of a panic attack. But John made me focus on him, look him in the eye, and we worked through it. We knew what blood was, it was nothing, he said. Just a burst blood vessel. We've seen it before and it's nothing. Get it all out. And I did. The docs took another portable x-ray (I'm getting used to those in my room) and the respirologist on call came to see me. She gave me more Vitamin K and Tranexamic acid to help stop the bleeding. It did, I did not have any more blood.


Today I am happy to say I am basically back to myself. Breathing is good, mind and body are relatively at peace. I think I put too much pressure on myself and think I can take it all, and obviously I can't. Clearly I can't. I stopped the morphine today, and am now back to my Percs for lung pain. I am starting to remember less and less of Friday. I get the two days confused for sure. I know I 'lost it'. That's the best way to put it. My body was just in over-load and my mind had to shut off. I learned something about pain management and asking for help. I need to do more of both. I can't let my pain get so bad that I go into shock. And I have to understand that by not being able to do things for myself I am a disabled person now. Just because in bed I can talk and laugh and overall be ok, the fact is I can't get up easily and get to the bathroom. Everything takes time. I can hyperventilate easily, since I have so little of my lugs working, and so little reserve. Since I can't get up and walk away right now, not down the hall, not down the street, my level of dependence is high, and that's hard for anyone. For a person such as myself that has always led a very independent life, this is something that I have to learn how to do, accept, and not let distract me from the fact that it is very temporary.


These posts can get very overwhelming, I now. But coming along with me on this transplant path, means that you are along for the full ride. And I don't think it's an easy one to read. I hope to have more better than bad days, but I will continue to write as it is, from my heart. I think we rarely get to see inside of the world of someone that is very sick. This world is so intimate for people, as it is to me. It is filled with images and scenarios that are better left for day time soaps, but for so many people they are real. By sharing this, I am feeling that I get to put each day behind me. Thank you for being there for me, putting each day behind me, being that much closer to the future that is ahead.