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.