Writing for gratitude

My last post was two months ago. I certainly was not sure if I would ever write again at that time, and I am still not sure what I am going to do next...or if there is still anyone out there reading. But that's okay. I am writing today with gratitude in my heart, and a completely new life that I am living.

Lots has happened since March. There was a turn around. There was a time not too long ago that even though I was feeling better and better physically, I was so changed emotionally that I did not know who I was. Transplant somehow took something away from me. I could not figure out why this was happening. I was breathing, I was alive, I was with my family, but I was lost. I guess I wanted so much more. Dreamt of being normal and capable, and as much as I wanted that, it was not happening. Not right away anyhow, and I wanted it right away.

During the last few months, I feel like I have been reborn. That's the best way to describe it. My past life living with CF lungs is just a faint memory. Did I really live my life coughing, wheezing, gasping, medicating? How did I do it for 30 years? I guess I did. But the fact is, I don't miss a bit of it. Not anything. The life I have now is better than a dream. Better than I could have imagined. The fact is, I have never been healthy, so how could I have ever imagined what it would feel like. Well, now I know.

It feels like each day is a new one. If I have a tiring day, I sleep, I eat, and I have energy for what is to come tomorrow. That's like most people I'm guessing. Well my CF body never seemed rested enough. I never ate enough, I never slept enough, I never coughed enough to clear my lungs. It was never enough. It was always a battle. Always a catch up game. These days my days look something like this:

6:30 - 7am Scarlett wakes up, so I get out of bed. (I take insulin - nothing else! My Cf lung 1 hour routine is now 30 seconds)
7-8am Martin and I eat breakfast with Scarlett (we watch daddy leave for work)
8-10am We dress, shower, have play time, or a walk, or grocery shopping, or if it's a Monday we clean the house (I take my pills at 9am)
10-noon Scarlett naps. I make sure laundry is done, bills paid, lunch made
noon - 1pm We eat lunch.
1-3pm We usually are outside again. Long walks, shopping on yonge, coffee with a friend, a play date,today was an afternoon in her blow up pool in the backyard (great fun!!)(2pm pills)
3-5pm (sometimes 230 -4pm, Scarlett naps again) During this time I make dinner. Since I'm eating nearly no carb right now, I always have to prepare the meat, veggies, whatever is on the menu. We are eating well these days. I am so happy to be able to prepare fresh food for my family. I was so sick for so long that we had to sacrifice very healthy eating. These days Martin, myself, and little Scarlett are eating all veggies and fruits and lean meat. (Scarlett of course is allowed carbs as a baby should!!)
5-6:30pm We eat dinner. Martin is home anywhere during that time. We all eat together, and talk about the day, and watch as Scarlett makes the biggest mess possible as she learns to eat all sorts of things. We love it!!
7pm I go do yoga. Martin bathes and puts Scarlett down. She's usually so tired after our busy day, that sleeping comes quickly and happily.
8:30pm I return home, and Marty and I have some wine, sit on the porch, or watch a movie. (9pm pills)
10pm We are sound asleep. Scarlett is a great sleeper. Sometimes it scares me and I look in on her while she's sleeping. She often wakes up only once, sometimes I only hear from her at 7am, like clock work. There have been harder nights, when she was getting used to some changes. But that came and went. I don't blame her for having a hard time, with all that's happened. Actually for a baby that has been through everything that she has, she is the happiest, most well adjusted baby I know.

For those of you that have followed closely during the past year or two, you'll remember that my mom was living with us for about a year. A huge sacrifice on her part. Well, my mom has moved out. Sooner than I ever thought she would. I just started to do so much and feel so good, that we were all able to move on with our lives. To me, the fact that I take care of a 10 month old all by myself all day, and the house, and the garden, and I make the meals....(well you get the idea) is an absolute miracle. Never in my wildest dreams did I ever think I would be able to. But the truth is I do it with pleasure, with a smile on my face, and more gratitude every day.

The one constant these days, is that I am more thankful than ever. At least once a day I will do something that makes me teary eyed. I will be in the grocery store and people will be smiling at Scarlett and I and telling me that my daughter is beautiful and I think, yup that's my daughter. To them I am just a regular mom. How cool is that? The other week I decided to run up a hill with the pram. I don't really know why, may be because I could. And I did. I felt like I was flying. By the time I made it up the hill I was in tears. A month ago I did my first power yoga class without once stopping or resting. It was amazing. My body and mind felt like one. Last week I decided to take Scarlett on a day trip to my in laws cottage. I packed us up, and spent the day at the beach. Something I never thought I would do by myself. Scarlett and I had the best time. At one point I walked past the cottage where I have spent some time during the past few years. Often not being able to go to the beach since I was so tired and sick. Often watching families walk as I stayed on the porch or inside. On this day, I wish I could go back in time and hug that girl on the porch. Tell her not to worry, good things are coming your way. Just hold on, be strong. That girl that I was, that I no longer am. I wish she could see me now.

I have also had quite powerful moments when I think about the woman that lost her life 6 months ago. A woman that never imagined how her life would end, and I am sure never imagined that she would save a life as she lost hers. Thought I know she was not aware of her fate, and thus not aware of mine, I like to think that her spirit knows. I often look up to the sky and thank her quietly. Her family might think they understand what they did for me, but I don't think it's possible to understand. I wish I was articulate enough to express to them (and I have tried) what my life is now. To thank them in a way that would mean something - to find those words. I am not back to the person that I was. I am a new person. A person that has the luxury of health, and happiness, and the privilege of insight, as I know how it feels not to have any of those things. It makes me so sad to think that we are not all organ donors. That we don't all think about the lives that we could change. The responsibility that comes with living in a world filled with our brothers and sisters. I urge you all to make that choice. Become a organ donor and become a hero. What a legacy to leave. I think about my donor and her family all the time. Mostly in awe of their ability to think of others when their world was crashing down. It seems like an obvious choice, a simple choice, but the donor numbers in Canada will tell you what they did for me was extraordinary.

The first month

As I mentioned previously, I do not remember a lot about the first little while after my lung transplant. I do think about it a lot, and certainly I have heard many stories from family and friends and even seen segments from the media that have allowed me to 'remember' more. The truth is I don't remember how sick I got before. When I was still at my CF ward at St.Mike's and was put on the ventilator. As if it never happened. From there I was transferred to the Toronto General Hospital ICU where I waited for my lungs.

(Nearly 10 weeks post lung transplant, January 27th, 2009 - today!)

It was during this time that my family started to notice my rapid decline and the fact that I had little time left to live. I was sedated, and not breathing on my own. My lungs failed, I was hemorrhaging blood when I coughed into the ventilator and when I was suctioned. Martin was unlucky enough to have witnessed one of the the times that I was suctioned in the ICU and he said it was horrific. I was convulsing and bleeding a lot. So, my family decided to push for a living donor scenario. There was just less and less hope in those lungs coming. The first step was for everyone to get tested for their blood type. To every ones surprise both my mom and dad, as well as John were all B+ (same rare type as me) and Martin was O, also able to donate. Everyone was ready to donate a lobe, including my husband. Not a thought went through their minds not to, in fact they were all joking about who would be lucky enough to do it. We also got calls from my aunt in Chicago who is also a B+ and my uncle in Poland that was ready to fly in right away. When I think about all these people willing to go through this surgery to save my life, it makes me feel like the luckiest woman in the world. Their fight was just as strong as mine. I would do the same for each and every one of them in a split second.

November 21, 2009 came around, and my dad said he felt that I only had a few days to live with my lungs. He saw the doctors getting worried, running out of options after the Nova Lung started to cause problems. Martin said that he knew one way or another we were going to operate that weekend, but everyone thought it would be from family live donors. Martin was sitting in his office at work, ironically fixing up our Will, getting ready to be called into the OR when he got the call. It was not him going into the OR, I was, the lungs had arrived. At first he thought it was a joke, after so many ups and downs, it was hard to believe that now, truly in the 11th hour, a donor had been found. It was the best news he had ever heard he said. The news got around quickly. He called my mom right away, who has heading to church with Scarlett at that very moment to continue to pray for our miracle. When my mom called my dad, he cried on the phone, the lungs are here, her lungs are here!

My mom, John, Angie, and baby Sophie (who was only 8 days old at the time) stayed at our house during the operation. I always told my mom, no matter what, not to drag Scarlett to the hospitals. She needed to continue her schedule, and so that's what my mom did. Always respecting all my wishes regarding my baby. I trusted she would be a perfect babcia and caregiver along with Martin. So the 4 of them spent the next night at our house. Comfort in numbers at the most critical time. Martin and my dad were at the hospital.

My dad never left my side. He slept in the chairs, in the waiting rooms, even though others told him to sleep, go home, rest, he rarely did. He just could not leave, even though I was unconscious and in the impressive hands of the ICU at TGH. Those people kept me alive. I have a lot of people to thank before I even went into the OR.

(Holding my favourite Christmas gift from friends Kelly and JR - my new lungs in plush blue)

It was my dad and Martin that walked with me as they wheeled me into the OR. Martin and my dad remember the dramatic unplugging of all my tubes and devices, and that being a very scary and emotional moment. And the the doors closed, at that was that. It was all in the hands of Shaf Keshavjee and Tom Waddell, my surgeons, and the many other staff involved. I wish I could know them each by name and person. They are all so valuable to me, and all so committed to saving peoples lives. I don't remember really waking up and the days that followed in any logical order. I remember one time waking up, I think I was still in the ICU but I am not sure, and my dad's face and Marty's and them saying to me over and over, you got your lungs, it's all over. Big smiles all around. On my end I felt nothing but discomfort, confusion, and distress. I was unable to move, and had tubes coming into my nose, throat, hands, everywhere. I was confused as to how I got in that room. I could not speak due to the trach, and I found that difficult and I panicked a lot as a result. I remember the horror of the panic of not being able to move. I had pain medication that was used liberally, so I was not in terrible pain. It was more a tension and stillness of my body that I found unbearable. I was soon sedated again since I could not calm down. It took me a long time to discover that I had had my operation, I was alive, and that I had been very very sick. This took the longest for me to realize since I did not remember a thing.

(Seeing Scarlett again on Christmas day)

Over the next month the recovery was the hardest part of my life thus far. Before I turned the corner, both mentally and physically, I went through a dreadful time. My brother said that I looked constantly in shock, ready to die, cry, ask and beg for help, even though there was not much anyone could do. Time had to pass, meds had to work, medicine had to do its thing. But after dealing with CF for 30 years, one comes to think of lung transplant as the easy part. At least that's what I thought. I heard stories of people leaving the ICU in 2 days, then out the door and home in 10 days or 2 weeks. That is what I expected for years and years. I did not expect for me to get so sick, so fast and to have to fight like I did.

By far the hardest part was not being able to move. I began to get sore, and agitated. Lifting my arm over my head was impossible so I started with physio by just lifting my leg a few inches, my arm a few inches, stretching my toes up and down, and trying to sit up in a big chair for an hour or so a day before getting back into bed with the help of a lift. It was devastating for me to have to go through that. I felt very sorry for myself and really believed for the first few weeks that I would never walk or move again. A silly thought when I think where I am now 2 months later. But when you expect something so different and wake up one day, and this is what you have to deal with, your mind plays tricks on you.

Martin had a lot to do with my rehab. He took time off work and worked with me for weeks, until I was walking with him down the hall. Large walker, small walker, holding his arm, then on my own. We did a full weights program, Martin pushing me all the way. Even when I did not want to move from bed. He would make sure I got my pain meds, that I ate, and that I got out of bed. It was the hardest part. Sleeping was easier since it was so much work to move. But things got better and better. Every day a better step, stronger legs, small changes. My body began to respond.

(Arriving in the TGH Atrium December 26th, 2009 - 1 month post transplant)

There were set backs along the way. Since I was so weak, I was in bed longer, and unable to get to the bathroom for nearly 5 weeks. This is so difficult as an adult. I had to wear a catheter that was removed quite early as to prevent infection, at which point I wore adult diapers and used bed pens. No one really talks about such things, but the challenges of that are huge. I was also on Lasics at the time, which is a medication that makes you get rid of the extra fluid that your body is holding, which meant that I was urinating all the time. And when I say all the time, I don't think I can even describe how much that was. At times I would wake up to a bed soaking from top to bottom. Needless to say, the doctors soon evaluated me and noticed that what was happening was unusual. My bladder had stopped contracting and letting me hold urine. So I went back on the catheter to make my life, and those poor nurses that were in and out of my room 24/7 lives easier. That time was so hard for me. I had bladder pain from not being able to empty in time. I had bowel pain. It was insane. There were nights that I prayed for relief in any form. Most of the time I got good drugs to help me sleep and get relief.

So I know that was too much information, but I said I would be open. After that when I got stronger, the doctors told me the catheter had to go. I had all my tubes removed and it was the last to go. I was so horrified that I would have no bladder control again, but this time they took it out and everything worked as it should. The muscles had come back, like everything else in my body. It was just time, strength, and it felt great to feel that much more in control of things. Let's say that I will never ever take for granted such simple things again.

So that was my first month. The second was wildly different. I moved ahead faster and faster. I spent more time alone, without as many frets about being alone. I started to gain confidence in myself and in my new lungs. I reached a new plateau those last few weeks.

The second month...To be continued....

Amazing things.

Today I was at my TGH clinic. Another super long day. It started off a little bumpy, literally!! When heading out this morning to the car, with my mom Scarlett in tow (since I can't drive yet, I have to rely on my mom with Scarlett to drive me) I fell on the road. I did not slip, there was no ice or snow. I just stepped off the curb and my knees just gave in. Ouch! I forget still that my knees and legs are so skinny and there is so little muscle! Yikes. It was not the nicest thing to have happen at that early in the morning, especially since I knew I had a long day ahead of tests. As far as I can tell all is okay, one sore and bruised knee.

So I had my PFT's first, followed by treadmill room (basically physio - treadmill, bike, weights, and legs....I have to continue until 3 months post-op) then blood work, xray, and finally clinic. My day started to my pft's, which are the tests that require the patient to breathe in to a machine and find out lung function. I know that not all my blog readers out there know all the CF and transplant lingo and tests, so I am going to explain as I go along. Anyhow, today we saw another incredible number. My new lung function is 76% (or 2.65L for those that follow those more accurate numbers).. I was in shock. About a week ago I was at 63%! My family and I are so happy, we're thrilled. It's all like a dream.



Clinic went really well. The doctors are thrilled with everything, and hope that it all keeps on track like this. My drug doses were changed, so that I am not on such high steroid doses, and that's always great news. My xray is pretty, clear, and when the doctor looked at it today, she was thrilled that after 2 months and all that I endured waiting for my lungs, they were able to achieve such positive results. I can tell from the staff, everyone in surprised. To be honest, I am too. I believe in science and medicine, but really it all just feels miraculous to me. From what was a bad dream, so just plainly a dream come true.



I am very tired, and am off to bed. Scarlett is long asleep, the good baby that she is. Mommy's little helper I think of her. Being to sweet as mommy goes to her clinics and tests - and it seems like she understands it all. That we need to stay strong together, not only her and I, but her daddy, and grandparents. Stay strong and keep going as we have being. Together, no matter what, how hard it got. And it got so hard, and now the clouds are parting, and 2010 has emerged, again like a dream.

Myslef and Martin with our little Scarlett - who loves to hold on to daddy's hair!!

Home tomorrow, 63%, and a little Jungian perspective

Sorry for all those expecting what I promised, the more itty gritty parts of transplant in this post, but that will have to wait. I am actually working on that one. It's started, but other things came up during this admission.



Needless to say I am tired of being here. Really really tired. I feel really good, and run around this place, or ride my stationary bike to keep those new lungs working. I am loving the fact that I can ride that bike on and on and as my legs get tired, my lungs are no where near ready to quit. That's pretty cool I have to admit. Pretty darn cool. I get my heart rate to 156, and my SAT's (oxygen) stay at about 97% on room air. Whoaaaa. I know. My pulse is raging and my body is working and my heart and lungs can work together to exchange those gases and safely deliver them where they need to go. It's like magic. Well not really, but it is like a healthy body, or one trying to get there.


I am only starting to enjoy this recently, and I am not sure why. Why I have been so hesitant to let go and enjoy the gains of this battle that I am fighting. There are so many gains, yet I have found myself focusing on the negatives over and over. Very unlike me. Is this the new me? I don't think so, but the change that I do feel is profound. May be one day I will get it, may be this is just part of the healing and it will go away, or may be it will just be like it is now. What I am mainly talking about, is fear and anxiety. In that specific order in fact.


Recently I have been speaking to a spiritual counsellor here at TGH. I did not want to speak to a priest (I already know to pray, thanks) or a psychiatrist (I don't need meds nor a quick fix) I just wanted someone to speak to that would listen and, if I am so lucky, give me some insight and may be a book. I was lucky when I met Derek, I got both. We spoke about my being tired of being sick. of a need for a break, for me and my whole family. We also spoke about death, mortality, those thoughts that creep up here and there post transplant. Normal thoughts he said. I'm sure, of course, normal, but this kind of normal is still a difficult one to live with.


The book I got to read is Swamplands of the Soul - New Life in Dismal Places by James Hollis. The chapters are divided by emotions, which I really like. I opened up to fear and anxiety right away, and just found it so right on, that I was more and more pleased with myself that I found my way onto Derek's office door step. One of the fundamental questions in that chapter: ...why, then, in the midst of something wondrous and transcendent, would one feel this undercurrent, this pull down into a dismal swampland? Good question. Why is it, that I am doing so much better than I have in years, had the gift of life given to me at the last possible moment, when my life was seemingly expired, why after all these gifts am I riddled with anxiety and panic.



As the process unfolds, my transplant journey I guess it can be called, this anxiety and panic is getting better. As I improve and find more and more of my old self within this new one, I feel it's easier to cope, and not only that I find myself having to cope less. What does James Hollis say? It seems like the only antidote, the only way out he says is to face these fears and anxieties head on. He quotes a poem by M.Truman Cooper that I love so much, it's so simple yet it explains it all to me:



Suppose that what you fear
could be trapped,
and held in Paris.
Then you would have
the courage to go
everywhere in the world.
All the directions of the compass
open to you,
except the degrees east or west
of true north
that lead to Paris.
Still, you wouldn't dare
put your toes
smack dab on the city limit line.
You're not really willing
to stand on a mountainside
miles away,
and watch the Paris lights
come up at night.
Just to be on the safe side,
you decide to stay completely
out of France.
But then danger seems too close
even to those boundaries,
and you feel
the timid part of you
covering the whole globe again.
You need the kind of friend
who learns your secret and says,
"See Paris first."



I'm not sure what answers I got from this poem, and from these chapters and from this book. But I certainly understand that after the experience I have had, so different and unique to my life thus far, fear and anxiety is the norm. I have the choice each day, at this point in my recovery to face depression or face anxiety. Nice choice huh? But that is exactly how I feel. When I sit back and feel helpless I get depressed. When I move forward and onwards, I get anxious as I have to face the unknown. But there seems to be progress. One last quote to bore you guys, that I really liked, and made me think: "Anxiety is the price of a ticket on the journey of life; no ticket - no journey; no journey - no life" Somehow this explains it all to me. Suddenly. What it says to me, it's all worth it.

Enough of the psycho babble, I think I've bored you all by now. Today has been a great day. Everything looks good for going home tomorrow (Thursday 21st). This I am thrilled about. The other amazing news, that has me and my family thrilled, is that my lung function this morning was 63%, 2.3 L. Only a week or so ago it was 48%. This change is incredible for me to see. It is encouraging, and has me really motivated to see how much more it will rise and how quickly. It is certainly the kind of news that you want to hear.

My mom and dad, proud grandparents, with Scarlett (now 6 months) and Sophie (now 2 months) on Christmas day in the Atrium of TGH.

A bump in the road - 8 weeks post

Wednesday I had my first biopsy of my new lungs. When they went in, they found infection. But that's only part of the story. After the bronch I was really ill. Doctors said i just reacted badly to the biopsy, my lungs became inflamed, and the reaction was vomiting, severe chills and total misery. I walked in there for a few hour appointment feeling great, and ended up terribly sick. Anyhow, going back to the mucus they found. The reasoning is I developed a sinus infection that drained into my lungs. I'm not going to go into specifics of Wednesday night, but it was a rough night. I got a bed later on that night on the same floor that I was just discharged from 9 days earlier. I have been put on a 3 week course of iv antibiotics to get rid of everything in there.

There are two pieces of good news here, may be three. One, I have no rejection. Two, I can do home iv's after they see the iv's working. Three, this is very common with CF patients since our sinuses are still CF, but our lungs no longer. So this is not a huge set back, but more just part of the process. I have become really good at accepting that things take time. Lung transplant is such an undertaking that really teaches patience and the ability to look past this moment and know things change every second, minute, every hour.

I am feeling stronger and stronger and gaining weight! I am, as I write, looking at my bike and weights, that I use in the hospital. I am starting to move faster, with better balance and range of movement.

But enough about today. I am wondering at which point in time is best to tell about my experience. I really don't know. I remember so little, in fact I don't remember anything from TGH until I was in step down. That's a long time. I feel like that loss of time has completely made my head different, the way that I perceive things. I feel that time lost, and I don't feel good about it. My last images from St.Mike's are of me doing pretty well, waiting for my lungs. After that - blanc - and I was told the story of how I started to be in more and more pain, more sedation, then I was vented. I don't remember even the slightest snippet of that. Then I was transferred to TGH, and a week after being in critical condition waiting and being on every machine known to man to keep my body going. They did amazing work in the ICU. Again I don't remember this but most of the gest you can get from the CBC interviews. I watched it and I could not believe that was my life. That was me!!

For me the real fight started when I was fully aware of what was happening to me. I woke up, I don't remember who was with me, and it hit me that something has happened. I could not stop looking at my arms, they were like a skeleton. Then I lifted the sheet and saw my legs, my scars, it was horrifying. Of course I was on many sedation drugs and pain killers, so everything was extra dramatic, but I can say for sure when I woke up I was in shock. My brother John told me recently that I was like a wounded soldier coming back from war. I would flinch when someone touched me. I remember my skin really hurt, and my tail bone since it stuck out so much. This 'shock' lasted for quite some time. Only now do I feel okay being alone. All those anxieties passed once I got walking around and eating well.

The hardest part for me was being unable to move. I tried lifting my arm, it did not work. I tried lifting my leg in bed, it would not budge. I was in that state for about 3 weeks. It wore on my quite a bit. My mom spent a lot of time with me in the evenings and we would set up a whole spa. We did the whole routine together every night, and I loved those nights. They were my favourite. The hospital was dark and quiet, my room always had low music on courtesy of my husband that set up our iPod. Think Enya or Sarah McLaughlin. My mom would help me brush my teeth without me having to get more pain killers. I was in a lot of pain still from the operation. She would brush my hair, and do a full sponge bath with my favourite lotions. It was so nice. But I remember that time well, and I was in such a dark place. Emotionally I fell apart. I don't know what happened, but it was all too much for me then. I had panic attacks that were beyond my control, something I started having while waiting at St.Mike's, when I could not breathe. Overcoming the emotional part is just as difficult as the medical part. If I were to walk into that operating room months earlier, it would have been different. I had to take the hard route. haha

I guess all change is hard. Most of us are not good at being thrown out of our happy little lives and be forced to be a patient and nothing else for a period of time. There is something very fragile and at the same time very powerful about such a dramatic change. Things right now are moving forward and that's all I can ask for. I hope to be running by the end of February at the gym. I also want to keep gaining as I have been and have each day get better.

Next post: the gory part of transplant. Ok may be not gory, but for sure humiliating hospital experiences.

............. and this is our Scarlett at nearly 6 months!!

....ok and for those of you that have not had enough, a video.....

(I promise that's it)

Home

January 6th, 2009 I finally got discharged from TGH. Home after all this time.

For the past 4 days I have used this time to settle in at home, and spend time with Martin, Scarlett, and the rest of the family. The first day was very hard, as I just learned to walk the stairs and was not sure if I would be able to do so at home. But things got better each day, and these past few days have been strong, and quite amazing.

Today my Scarlett reached out for me, for the first time, and though I still can't lift her due to rib and chest pain from the surgery, it was such an incredible thing to experience. My daughter and I seem to fit like mother and daughter, and no amount of time, and illness, and hospital time will change that.

I feel like now I am ready to start to tell my side of the story. It seems like when I was far gone, the paper and the news told their version and my family's. But where was I during all that time? I have lots to say both pre and post operation, and I am going to start to write. I want to be truthful, and tell it how it is, and though the outcome is such a miracle, the ups and downs of transplant (how it was for me) is something I want and need to share. It make take me 5 posts, it might take me 20. but there is lots to write, and I can't wait to share.

I want to thank everyone, again and again for the support on the blog, the house, the hospital. For the cards, well wishes, presents for the whole family, the food made, the emails, the texts, the calls....and on and on. I cannot thank everyone in person, even personally, but here I thank everyone. I feel like it was not just me in that operating room, it was the hearts, and prayers of so many people, and my great city Toronto. I am immensly flattered, as my lung transplant is one of 100 last year. Including many people that I know, that are just amazing.

Finally.

So here I am. So here we are. December 29th, 39 days post transplant. I am here, alive, breathing, writing, once again in my blog. How cool is that?

I know it has been a while, and I am sorry I could not write sooner. So many times I wanted to. I missed the outlet so much, but it was not time yet. Not until today, 39 days later.

Today I am perhaps a week or so from going home. I am so lost right now as to where to start this post. I was told just to make it short, but how can I? I have so much to say, and over the next few weeks may be months I will try to say it all, as well as write about home, what it feels like to finally, finally be home. As I said I am perhaps a week away, from home.

Let me start off by saying thank you. Thank you, thank you, thank you. To everyone out there, and I now know there are many of you, that have supported me through what has been the most difficult thing I could have ever imagined going through. There are so many of you out there that I am often stunned by the response. It has been captivating for me to watch. But I have to say that I feel honoured to have your attention in the way that I do. The people I have met, the love that I have been shown is unbelievable. From neighbours dropping off food, friends helping out where they could, to the most heroic gesture I could imagine: A man calling TGH and offering to be a living donor of a lobe of his lung to save my life, when there were no lungs in sight and my family was strongly considering the living donor route. I will never forget the city that Toronto is. Though of course we have received notes from all over the world. People are just good.

It has been terribly difficult for me to get emotionally well again, but I am getting there. This is partly due to the fact that I don't remember months before I got my lungs and much after the operation. It is a strange and unsettling feeling when one moment you are at a certain point in time, and one day you wake up somewhere new, with seemingly everything lost. That's how it felt anyhow. I don't remember waking up from my operation, it happened several times in the ICU and each time my family had to relay the fact that yes I did get my lungs, it did happen, it's over, it went well. i was in and out, and every time the same conversation occurred. The problem was when I finally did come to I could not move a single body part. I could wiggle my fingers, and toes, perhaps my feet. My neck could barely shift from one side to the other. It was singlehandidly the most horrifying moment of my life. The weeks to follow I will slowly write about in the posts to follow. There is so much to say. But I have to say the first 3 weeks were nothing I could have pictured, imagined, or even believed if I was told that could happen to me. I was in bed so long, got so sick before the transplant, that I had lost every other capacity. Those first 3 weeks. I close my eyes now I cannot believe I am here. Like this, now. I made it. With incredibly hard work, pain, will, and determination, and let's not forget the most unbelievable family anyone could ask for.

My lungs came. Can you believe, my lungs came. i call them mine, but there belonged to a lovely woman that lost her life. Her family made the decision to donate her organs, and in turn saved my life that Saturday afternoon. Truly at the 11th hour. When I breathe now, I breathe a little bit of her. I don't know who she was as a person, but I know her in some way. She is certainly watching her perfect lungs working away, and she is so deeply proud of her family for making the choice that they made and followed her wishes. I have so much gratitude in my heart. I wanted to live, and only due to her and her family was I able to survive. I know the family is reading this, I know it, so thank you. You saved my life, and gave my daughter her mom back, my husband his wife, my mom and dad their daughter, and my brother his sister. I can continue to be a friend and live the life that I have always wanted to live, breathing deeply.

I'm sure you're all curious how it feels. Now that I can walk again, and though weak and thin, and still with much more strides to gain, how does it feel to breathe? The answer is, it's like magic. i don't cough. Ever. At all. In fact I am learning how to cough, as it does not come that easily now, especially after being on the ventilator as long as I was. i have a saturation of 99%, sometimes 100% at rest and when walking or exercising. I can hold my breath for ever. I can talk and talk without choking or having a coughing fit. It's magic. There is nothing else I can say about it. It has been worth every struggle, pain, fear, and tear. It's been worth everything.

I don't want to stop writing, I have so much to say, but I am tired. My eyes are not used to the screen and typing quite yet. Before I go, I want to say a few things about my family. i can't leave that for another time. When I was unable to fight any longer, when I was that sick, and when many people gave up on a transplant ever happening, my family fought. They worked so hard, got me the best care, and each and everyone were ready to give up part of their lungs to save my life as a living donor. My mom and aunt were deemed too small, so my dad, brother, and Martin were all assessed and ready to go. All are a compatible blood type and all did not hesitate for a single second. When I think about that, well, you can only imagine. During the last month my mom has been faithfully raising Scarlett, who is growing healthy and strong. She has done such an incredible job, and its amazing to see how much they both love each other. Martin is the man that has done the impossible (the doctors and rehab people are completely shocked at the progress i have made during the past 2 weeks) and got me walking again. Moving, lifting weights, the whole deal. He is the reason why I am going to walk out of here soon. Once again proving to me that we're such an awesome team, and so utterly, without a question, almost to a fault, in love.

Ah, it is time to stop writing.

i have contemplated if I should post these pics, and I have decided to. If they are too hard for people to see perhaps because I am so thin, or due to the scar, or my breasts (what's left of them anyhow) just be warned. I think they are incredible. They will help me remember. These were done by Myles who's an amazing photographer, and someone who I am filled with gratitude for having in my life.

(Above: right side drainage tubes)

(Above: today at 95 lbs., ouch...gotta eat)

(Above: The Novalung scar)

(Below: The whole incision, two drainage tubes on the right, three on the left)

Unprecedented Progress

Hi Everyone,
You’ll be happy to hear that Natalia is now fully defying all expectations and doctors have started to express astonishment at how well and quickly she’s recovering given the severity of her circumstances up until 3.5 weeks ago when she received her double lung transplant at the absolute 11th hour.

As of Monday she has now ‘semi-graduated’ via the next stage of Step Down where she's now on the 7th floor of Toronto General Hospital vs. the 10th - no more multiple hook-ups to monitor her vitals, tracheostomy tube has been completely removed so she’s breathing on her own and able to speak consistently, all of her staples from surgery have now been removed, her drainage tubes are long gone, she is walking around the wing of the hospital an entire lap at a time, her burning desire to start eating food again should be satiated in the next day or two when the green light to eat is given and the feeding tube is removed, and recent results from chest Xrays were described by one doctor as “beautiful”...they are completely clear and her new lungs are working superbly.

All of the good being said, in the last few days Nat has been in more post-operative pain than usual, around her ribcage and along her sides in particular (for the operation doctors had to literally cut her chest open, move her ribs apart, and then join them back together afterwards with titanium) which has required additional pain medication, and the immunosuppressive drugs that she’s on (and will be on for the rest of her life) are causing her hands to shake a lot right now as doctors adjust dosages to find the right combination that works most effectively for her. She has also had quite a bit of abdominal/stomach pain. But Natalia keeps these factors in context and sees them as small inconveniences when compared to the bigger picture of how far she's come and where she's working on going...: home.

As those of you who have been following Natalia’s journey over the last month or so in particular already well know, her will to recover and be home for baby Scarlett is an undeniable and unstoppable force. You’ll be happy to hear that as her strength continues to grow, so too does her will and resolve and determination to get better even faster. Her thoughts are on Scarlett always. A small example to illustrate her mindset: when a doctor was visiting with her on Monday and exclaimed that Natalia is now recovering faster than most double lung transplant patients under the best of circumstances, her innate and natural reaction was to express surprise because she’s of the opinion that she’s just not healing fast enough. Typical Natalia fashion.

With all this talk of progress, many of you are likely beginning to wonder when Natalia will return to writing in her blog. Rest assured that it will be quite soon. There are several reasons why she hasn’t been able to just yet, first and foremost because her hands are shaking from her anti-rejection medications she has limited ability to type short messages via her BlackBerry and typing with a computer keyboard is proving particularly challenging. She’s also on heavy doses of pain medication (probably enough to knock out an elephant - Natalia is of course quite unphased but the meds do prevent clarity of thought at times). And lastly, there’s a bit more emotional healing that needs to take place for her. When she learns and thinks about what she's been through (fortunately she doesn't remember anything since her last day at St.Michael's Hospital just before being intubated and transferred to TGH) let alone what she is going to write about and where to start, it all becomes a bit overwhelming for her as I’m sure you understand and can appreciate. But she will be reaching out soon. A particularly meaningful and symbolic further step forward that will be indeed.

So. Lots of positives! And unprecedented progress. Feedback from doctors in the last few days about how far Natalia has truly come from how far gone she really was has further confirmed to us that not only has Natalia defied all the odds that had quickly stacked against her, she has pretty much transcended them. All of them. Every single one. She continues to amaze...and will be home with Martin and Scarlett and family soon.

Myles
ps: the photo below is Casa du Ritchie - with Christmas and Welcome-Home-Natalia Tree - Martin has it primed and raring to go...

The LEAP to Speech + Online Resources

Hi Everyone,
She speaks!
With her new tracheostomy tube, you'll be happy to hear that Natalia can speak again!

In her typical style, Natalia has leapt right over the hurdle of potentially needing a speech pathologist after a month of not being able to say a single word and weeks of tubes pushing past her vocal chords. It's a bit whispy at the moment, but Natalia's voice is back.

So she's now walking (in longer and longer stints, with a bit of assistance, down the hallways of the Step Down Unit) and talking.

Small steps are turning into longer strides.

Given where she was just 3 weeks ago - deteriorating quickly and getting far too close to death's door - thanks to hope and determination and science and medical skill and the incredible generosity of someone who gave the gift of life and his/her incredible family that helped make it happen, Nat is walking and talking and smiling and getting closer and closer to continuing her recovery at home where she can return to being a Mom and Wife and Daughter and Sister and Aunt and Friend on a bigger scale and more consistent basis than ever; moving forward with her new lease on life and getting busier as she gets stronger to catch up on lost time and experiences (I think it's starting to make Martin a little nervous - early morning runs, visits to markets, long walks, trips....he's going to be quite busy)

As I'm sure you'll agree, it's all really quite incredible. Miraculous even.

The power of determination, patience, will, spirit, love, family, support, generosity, medicine, technology....and serendipitous timing.

Your unfaltering support of Natalia and her family's journey has, is and will always be something that they appreciate and thank you for on a scale that can't be expressed.

Nat's original hope and goal of sharing her personal story to help people understand the trials and tribulations of a terminal disease....to leave a journal and lessons for her daughter Scarlett....and to help humanize a national issue by helping to put a face and personal story to the importance of organ donation with the hope of helping bring some greater good for other Canadians that are currently on a transplant waiting list (approx 4000) and to help future Canadians in need of an organ transplant has been working: there is strong evidence from many of you that a difference is indeed being made.

Victories on two fronts.

For those that may not have had an opportunity yet, please consider your choice and wishes about organ donation, discuss them with your family, and see below for more information.

For Natalia, a final bronchoscopy was conducted yesterday and all was clear, the trach should be completely out in a couple of days allowing her to breathe entirely on her own all the time, to start eating food again, and to continue the count down to getting home with her family which doctors currently estimate to be approx 2 weeks.

We'll keep you posted as the victories and remarkable journey continues...

All the best,
Myles Slocombe

ORGAN DONATION:
By making your wishes known, you have the opportunity to save up to 8 people’s lives and enhance the lives of up to 75 more should, God forbid, something happen to you. In many cases, when families lose a loved one, the gift of life their loved ones were able to provide is the one tangible silver lining that brings a degree of comfort at a time of loss. Don’t just discuss it with loved ones: sign your donor cards and add your name to applicable provincial registries in the provinces that have them. Even more powerful is to state your wishes in a living will. All of the above will let your next-of-kin know your intentions, having your name in a registry can save important time, and a living will with a health care directive carries the most amount of weight.

For more information and to register your wishes now:

->Alberta, Nunavut, Northwest Territories:
No registries at this time – sign the back of your health card
->British Columbia:
http://www.transplant.bc.ca/index.asp
->Manitoba:
http://www.gov.mb.ca/health/donor.html
->New Brunswick:
http://www.snb.ca/e/0001e.asp
->Nova Scotia:
http://www.legacyoflife.ns.ca/
->Newfoundland & Labrador:
Donor Card/Driver’s Licence
->Ontario:
http://www.giftoflife.on.ca/page.cfm?id=3F79E442-F7FD-4057-AA63-7B0279A17EF1
->Prince Edward Island:
Place sticker on your health card renewal form onto your health card and/or have red heart engraved into your driver’s license at time of renewal
->Quebec:
Obtain donation sticker from local hospitals and pharmacies and attach it to your health card
->Saskatchewan:
http://www.health.gov.sk.ca/organ-and-tissue-donor-information
->Yukon: Donor Card

ADDITIONAL RESOURCES:
http://www.organ-donation-works.org
http://www.recycleme.org (Ontario only, but a very effective & informative website)

Thank you.

Onward & Upward

Hi Everyone,
This afternoon, we're very happy to report, Natalia walked : )

We're not talking 1 or 2 steps here. We're talking full-on-no-holds-barred-taking-physio-up-a-notch walking all the way to the end of the hallway.

Just around the corner, with new tracheostomy tube installed, will be the ability to speak again.

And something Natalia's expressed particular excitement about: very soon the ability to be done with the feeding tube and start being able to eat solid food again (I don't think she'll be able to keep up with baby Scarlett, but that's a whole other story...)

Will keep you posted as more gains are made...
All the best,
Myles

Slower & Steadier Wins The Race

Hi Everyone,
On behalf of Natalia, Martin and family, thank you for your continued support while Natalia continues to recover at Toronto General Hospital. Since the last update on Monday progress has been made for her on some fronts, less so on others, with the key theme being slower and steadier wins the race.

Natalia’s awareness and overall strength continues to improve which is key. After a few tries, she has been able to stand up and walk a short distance on several occassions with assistance. Intensive physiotherapy continues and is helping her body and movement improve.

She hasn’t been able to speak yet, but a new tracheostomy tube is going to be used tomorrow which should allow her to start talking and will be a large step forward (the trach itself likely won’t be required much longer).

Medical staff performed a bronchoscopy today (described in an earlier post: a bronchoscope is a flexible metal tube with a camera and suction that is inserted down into the lungs) and have detected quite a few secretions. Additionally, her white blood cell count has increased since the last update and is higher than ideal. This doesn’t suggest organ rejection as much as it strongly indicates an infection, so doctors will be putting her on a new course of antibiotics which will hopefully take care of it in short order.

Unfortunately, there are indications that Natalia may have to remain at TGH for all of December, but that hasn’t been completely determined yet. As you’ve likely detected over the course of following Natalia’s journey, variables change all the time which can be for the good and sometimes for the bad. The most important thing is she is on an upward trend of improvement...there are just a few bumps which, all things considered, were to be expected.

As you know, where Natalia has been battling back from is a place that hopefully none of us will ever have to experience and a place from which most people, quite frankly, wouldn’t have survived. Natalia has a spirit and will and determination to live and be a loving daughter, and sister, and friend, and aunt, and wife, and Mom to baby Scarlett that really does defy description. It’s inspiring. It’s motivating. And it puts everything we tend to complain about and take for granted into perspective. As much as I’ve tried to put recent weeks into words on her behalf...a lot of what she’s been through...and the totality of what she’s been through...well...there just aren’t.

The intention of this particular blog update isn’t to have a negative tone, but as mentioned in my first blog post, Natalia wants to provide candidness without any sugar coating.

This is still a hard time for her. A different kind of hard, because she is of course on the other side of the transplant now so it’s all about the pace at which she gets better, rather than before when it was all about the speed at which she was getting worse.

Progress will continue to be made. The course of events and the lifeline that became available when the call came with her new lungs just 12 days ago is astounding. But it is still a hard road.

The aforementioned “totality” and culmination of what she has been through takes a toll physically and psychologically. But, as we all know, Natagladiator is an Olympic fighter and be it for Christmas or just into the New Year, she will be home soon where her new chapter and lease on life awaits.

Myles

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

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.

The Toronto Star

I have no words. Certainly we did not expect this. The magnitude of this article. Barb, what have you done?! It's incredible! Thank you, from my whole family.

A link for my out of town followers and family:

http://www.healthzone.ca/health/illnessesissues/article/716418--dying-mom-keeps-online-diary-for-baby?bn=1

I feel very lucky. I will also write more about this day, at a later time. I'm slightly speechless at the moment.

Panic Attacks.

When no one can explain a medical behaviour, or pattern of occurrences. It's a panic attack.

I am not against the diagnosis, not at all. After all I have something to panic about. But I am not so certain that's what we're dealing with here. Time will tell. I am using some new medication and trying to see if things get better at all.

Last night things got really bad. My dad was here with me, after Martin went home to bathe Scarlett, and saw me progressively get more and more unstable. What started off as a low grade fever, ended up as increased heart rate, respiratory rate (which is already high at rest) and blood pressure (which I never have a problem with). I felt like I was going to explode. My chest was so tight, I could not breathe and taking a deep breath was incredibly painful, and as time went on impossible. At the height of it, I was suffocating, choking, and feeling like I was dying. Terror.

This time they did an ECG. Last time it was due to my being up for too long and getting desaturated. This time there was no such moment. It just started to build up in me: The breathlessness, the tightness, the fever and the burning in my lungs. The ECG showed nothing. I knew it would show nothing. (my heart is perfect thank you) The doctor on call was not exactly someone that I knew would come to any conclusion. It was late at night, and after a conversation about what he would get me for the pain (more Percs) and to help me relax (Ativan) he actually asked me the question that I get with dread (do you know when your transplant will be?) ......what? you're a doctor?! How can I possibly know when it will be? When I get that question from friends or family, I think they just don't know, they have not thought about transplant. But from a doctor? It's scary. I smile, and say, well it's not from a living donor.....they smile and GET IT. I think. I hope. I guess my doctors have to sleep sometime. But I wish they didn't.


Anyhow, so right now we're waiting to see when is the next time this panic will unfold again. We are trying to stay ahead of the pain, which in my opinion lead to my panic. And if that's not enough, that mild sedative. Personally I would not mind being 'mildly sedated' more often than not in this situation. It's hard. And sleep is the only thing that really makes me happy. Restful, glorious sleep with my Bi-Pap. Anything else leaves me out of breath, choking. Something gasping. Right now I am on a tiny tiny little sliver of Ativan that I let dissolve under my tongue. Not even 1mg. half that. I want to see if it helps with that tightness inside my rib cage. All it really does, is make me really sleepy like everything else. I just want to reduce those episodes, they terrify me. I try everything to calm them away, but nothing works.


My dad and I talked about it last night, after I was back to myself. I told him that I have definitely noticed that since January, I have been more and more insecure to sleep without light or the tv (and this is SO not me), that I liked sleeping with noise and people around, even being up at night and sleep in the day. Nights at home, when everyone was asleep and I was so scared of falling asleep since it was becoming so hard for me. Again this is before Bi-pap. I had just developed habits that were curious, and a reflection of how anxious I have become. Recently I have to say, when I close my eyes I think about only a few things. I think about getting through the operation. I think about Martin and Scarlett's life if I don't make it to getting my lungs. And I don't get sad, I get panicked! Is it possible that Scarlett will never know me? What a crazy thought to even think, but I know, it's all about the toss of a coin. Timing. And things can go one way or the other. and we can believe and pray and hope, but anything can happen. I certainly have known people that were loved and cared for my communities of people, and though it seemed unthinkable, they did not get their miracle in time. Unthinkable. Unless I am very very tired, I think about these things, and I wish I would not. They are not helping me. But I think that's the nature of anxiety. When you fall into that cycle. Anyhow, next week when my doctors are back in rounds, I will have a conversation with them about seriously helping me get through this wait with less panic, and more calm. Since I want to be calm. I am calm. But something deep inside me is evidently having a rough time. No shame in it.

For your viewing pleasure, my baby at 3 months.

Happy 3 months baby cakes!! Mommy will get those lungs soon and be home in no time!! xoxo

Bi-Pap and God

When I had to go to the ER last week, I prayed for a miracle in the car. Anything I prayed for. I was in so much pain, I was so short of breath, that I was not even lucid I don't think. I just wanted relief and calm and did not know what form that would come in. At that point I was so ready for relief, I would have taken anything.

Today, when I get tired and breathless, I put on my Bi-pap and float off to sleep. It's the greatest thing I could have asked for from god. Or from anyone, except for those new lungs, and I don't ask for those, not from god.
I would like to find out who invented this machine, and thank them in person. For them to know what this machine does for people on the edge like me. It saves me the terror of not being able to breathe. It saves me from being put onto a ventilator when the sheer act of breathing will become too much. It saves me from the eventual build up of CO2 in my failing lungs. And, it gives me the best thing of all, sleep. As much as I like. And at this point it's all the time.

A small note on God. I have always been a privately religious. I was born Catholic but I cannot say that I have lead a Catholic life. I appreciate other religious people. I think there is honour is having faith, be it Christian, Jewish, Muslim, Buddhist, whatever faith it is that you have. I will say my two cents about god here though. Don't count god out until there is nothing left, your opinion might change.

Listed for double lung transplant

Today I was listed for double lung transplant. August 6th. Where this will take me I don't know, but I am eager to find out.

When will that call come?

The whole process was easy. Martin and I met with one of the 5 surgeons to sign the consent forms. Dr.P was really nice. We liked him a lot, and saw that he has a great passion for his field. He said I am a low risk candidate. Which is good. On paper I look like an ideal candidate. Meaning I don't have anything visibly wrong with me that would hinder the success of the operation.

I was given a few study forms to fill out. I am going to sign and participate in all of them. The first is a bone marrow study, allowing them to take a sample of my bone marrow for research. It leaks out when they cut into my breast bone, and will be wasted anyhow. What they are looking for is stem cells that are found in the bone marrow and how they can be used to grow lung tissue. Love it, think that's the future of lung transplant and CF treatment.

The second study had to do with a new anti-rejection drug. You get the actual drug or a placebo, and it's one IV infusion in the first week post-op. Again, no skin off my nose, and you might get this new drug that has done some good things so far. Bonus, I signed.

The last is the one we thought about, and have decided that it is something I will do, but it required more thought and consideration. It consists of using something called a EX VIVO lung perfusion for an improved assessment of donor lungs, in hopes to use lungs that would otherwise not be used in transplant. Because 4/5 donor lungs are not used, many due to the fact that they cannot be properly assessed while still inside the deceased donor. Using this EX VIVO system, they will be able to further assess the lung, and might be able to use it in my transplant. Dr.P said there are also added benefits of keeping the lungs at body temperature, have them 'work' and thus recuperate from the trauma of 'death' which is substantial. The most important thing to consider there, is that this may really shorten my wait for lungs, especially in my situation having a rare blood type.

12 Patients have had their lungs transplanted after their lungs have been assessed through the EX VIVO system. Lungs that otherwise would not have been able to be used due to the inability to assess them in their original donor bodies. The system is approved in Europe, and is still experimental in Canada.

Risks are that they don't know how this will affect the lungs long term. Or that I may have an allergic reaction to the Steen Solution. They say these risks are unlikely, but there may be risks that they don't know about.

The benefits are that Ex Vivo perfusion Steen solution will lead to decreased acute lung injury rates after transplantation, as well as a shorter wait, and of course that information learned from this study might help other people waiting for lung tx in the future.

After careful consideration, I will consent to all 3 studies. I think they might benefit me, and I know they will benefit other people in the future. This is all exciting stuff!!

So that's it. Here I am . Relieved. My next few posts have to be about little Scarlett....lots to tell. I've been ignoring her in my blog lately and have to catch up. She's doing great.

Have a glass (or an extra glass) of wine for dinner tonight in celebration. Today is a big day.