I miss my blog!

I know everyone gets worried when I don't write in a while, and I don't want anyone to worry! I am doing fine. No call yet, and nothing else to report.

Things have been busy I feel, may be due to my going to physio twice a week at TGH, or with Scarlett growing in her little milestones. We had a doctor visit this week and our little girl is not so little. 11lbs 12oz. Yeah we know. No need to say it. 97th percentile. This is certainly something that you aim to be in the 50th percentile range, but hey, this is how she rolls!! Our Scarlett likes to eat and sleep, and as I said is a previous post, has not yet learned how to burn some of that off. Again, we're not complaining, more like finding her mildly amusing. She is, as a result, one of the most cuddly babies you can imagine. All pudge and smiles. Yes there have been smiles, looking around at mommy, daddy, and grandma, and a strong love affair with her soother. Everyday I feel like she's bigger, happier, and stronger. She keeps her head up when we're on the bed together and we're tummy to tummy, looking at me. She's one strong kid. Just how we like 'em!

We also got her sitting in her Hushamok, that just arrived last week after a 4 month waiting time. But it came just in time for her to hang out in it. She loves it. It's in the kitchen where she can watch my mom cook or prepare bottles. I think she looks hilarious in it!! Picture below:

(Scarlett thinking she's pretty cool)

So there you have it. Our little one month old, nearly 12 pound baby!! Who would have guessed it. She is by far the best baby I could have ever have imagined having. It makes me smile just writing about. Everyday she becomes more and more like a little person and less and less like a baby. Which is funny to say, since she's a month old, but it's true. She's developing ways that she looks at me, or parts of her personality shine through, and I think to myself, that was another day of her life. Wow.

The other day I was think about the future, and I pictured Scarlett thinking about her past one day. It will happen. One day Scarlett will be sitting in her dorm room, or in her apartment, or in her house, or at her boyfriends house, or with her husband on a family vacation, and she will think about the story of her life. Experience tells me this will happen. We all do it, sit back a few times (or many times) in our lives and reflect. Something grasps us, and we think of something and we wonder how that part of our undiscovered lives felt like. These days I look at Scarlett and I wish she was old enough for me to tell her the million things that I want her to know. About what her mommy and daddy are going through right now, the fight that we have encountered, and will continue to cope with for the rest of our lives. I know that one day when she does start to think about it, I will be there to tell her so many things, and when I am not there her dad will be. There will also be my writing. Lots of it. She will know everything. But I still think there were things I could explain, now, that I will let go of, then. I think most people if they were to explain to their children something when their children were babies, the explanation would be quite different than later in life, may be simply due to the passage of time. May it's a way to only remember the good stuff, not dwell on the hard times. I don't know, but whatever it is, that's why I am writing.

When I write this blog, I often write to someone....but to whom? I sometimes write to the blog world, but in reality more friends and family read this than strangers. And really, I don't write for strangers, no matter how much I love and have grown to rely on the friendship of people I have never met. I feel silly writing in the old school way, the dear diary type of way, it never felt normal to me to write to a diary fairy...or book, or whatever that being was to be on the other side. Anyhow, the more I thought about it, and re-read my older posts (before the talk of Scarlett being Scarlett, or tx for that matter) I always get the sense I am writing to my child or children. I am almost certain there will be more. So, from now on I will write to Scarlett. I think this will allow me to say more, be more focused, and feel more of a purpose to my day. I want to write Scarlett about today, as tomorrow is uncertain. So when she has those moments in time later on in her life, when she's thinking about her life, this part of the story is quite a lot more clear to her. Since I told it to her right from the very beginning of her life. The reason I have decided to keep this public, is simply that I don't want to stop this blog, but I feel that if I start to write only for Scarlett I will be too tired to write things twice. We'll see.

Treading Water

I feel like I am treading water, and though I feel strong and confident that I can wait it out and not drown before the rescue boat comes, there are times that rocky waters make it extra hard to stay afloat. Sometimes the water is nice and calm and I get some rest and enjoy the swim a little more, but a large wave comes in and takes me under without any warning.


This is the best analogy I have. I am treading water. My doctor says often, we just need you to keep treading water. It's work and it's getting harder and harder, but just keep treading. You know what that's like? It's like asking a person with less than 20% lung function to work for it, that's exactly what it's like.


I'm still treading water.


The last few weeks have been terrible. The last 3 days have been so much better. I think I was pulled under water time and time again and the cycle left me tired and discouraged, in pain from the struggle. A vicious cycle. Takes me more and more time to bounce back and start working at it again. Yesterday and today I feel like I am treading comfortably again. Tired, but head above water, even enjoying the sun on my face from time to time.


I have started my Toronto General Hospital (TGH) physio sessions at the treadmill room. I'm 20 years younger than the oldest person in that room (since no CF patients are allowed in the room at the same time, so it's mostly people with COPD and the like). Much older people, and much more healthy than I am. CF is a very different illness. What must those people think when 20 or 30 somethings come in looking as thin and tired as we do? One lady, a wife to a gentleman waiting for a transplant, said to me, but you're so young!! Yeah well I don't feel young. I feel old. All except in my mind, in which I feel like I want to go out dancing or to a friends wedding, or the cottage....oh that's what I feel like.

It is such a relief to feel a bit better, I am so happy to feel this way, that I cannot imagine what feeling much better will feel like?! I really can't.

Sorry, not the happiest post. I'm grumpy. Tired and grumpy. So to lighten the mood I post a funny picture of Scarlett from this morning. She wanted to eat, not to be photographed. Can you tell?

More Scarlett

These pictures are from August 12th:

Scarlett Update and more

There she is, our little monkey. She's growing like crazy, up to 10.7 lbs right now. This might have something to do with the fact that she's figured out that moving or crying burns calories. Since she never cries, and only moves to stretch (I might be exaggerating slightly, but only slightly) and thus has taken well to gaining weight. Not that we're complaining. We're not. She's healthy, alert, happy, and generally when you see her, you get the sense that she's content.

Scarlett loves to hang out with me, on a pillow next to me in bed. I'm in bed a lot, so it suits us both. But if not with me, she's upstairs in her crib. Has slept in her crib since day 1, and loves it. She's independent, and lets us know via monitor when she needs to eat. The funny part, is that once we call out we're coming, or enter the room she usually stops fussing. We think she's a genius because of this. Please, don't burst our bubble....we can't help it we think she's a genius!!

Other than that life continues to roll on. Being on the list is fine, nothing has changed. You'd think I'd be more calm, but I am not. I am anxious. I don't know how long I can last like this. I know it will get worse, and I am scared to suffer more. I am more scared of suffering than dieing, I don't know why. Of course logically that's not the case, I will suffer to the end of the universe and back to ensure that I will be here to see my daughter grow up. But the reality sometimes is that I can only take so much. I recognize that now. There is a limit. I have not reached it yet. I always thought there was no limit, but I know there is. That's why there's transplant. I guess that's part of recognizing limitations.

My health may be slipping, but it seems like people are reaching out more and more. We get packages for Scarlett nearly daily. From people we don't know, from family, from friends, from all over! We are in awe of the generosity, thoughtfulness, and sheer renentlessness of people. We're thinking of you, people are saying, and that lifts me up. It's amazing, and I have no doubt this will carry me right to the operating table. There is such a power in thought, prayer, energy, all of it. I believe it, since I can feel it! Thank you to everyone who has reached out, be it a phone call, email, note, card, facebook...whatever. I am amazed and inspired by your love.

Keep reading out there. I am here, I am strong, and I know when that call comes I will make everyone out there proud.

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.

Listing date

Yesterday was a stressful day, but it's all been resolved now.

I never heard anything from TGH in the morning, after doing my blood work last Tuesday, so I thought I would try them again after the long weekend. Yesterday. When I contacted the tx coordinator she said that the earliest appointment she had for me to be listed (means I have to have an appointment with one of the surgeons to sign the release forms) was August 20th. I was upset at this, and confused. I had waited all this time, and now another 16 days....Anyhow, I did not argue with her, there was no point. I had to contact my clinic and my doctors that understood how sick I was and how bad things were getting. I was told however by that coordinator that if I was an inpatient at St.Mike's I would be listed ASAP. This made me angry. My doctors and I work hard at keeping me home, since they know that I have enough care at home, and that we are so close to the hospital, that it's a better place for me now. I am on IV's, and have been for months now, so I am certainly in the same position as if I was in the hospital.

I spent the day yesterday calling and trying to get someone to listen to me. I finally got a hold of our social worker at the CF clinic. She passed on the information to my doctors. They emailed me right away and agreed that waiting another 16 days was not the right thing for me to do. They would call TGH and try to work things out. They agreed that I am certainly sick enough to be at the hospital right now, but they realize my family can manage having me home on IV's. I really get the same care, but I get my own bed. That's always a plus.

So, to make this story short(er) the same coordinator called me this morning, and said that she made me an appointment for tomorrow afternoon to meet one of the surgeons and get listed. Tomorrow! Thank God. I am ready, and I am so happy that I have people behind me that can help get things moving. I did not want another 2 weeks wait....

Tomorrow is going to be a very exciting day. I cannot wait to get that pager and be that much closer to getting those lungs. I will be listed status 2, that being the highest status. Fantastic.

Lovely pictures

As promised here are the pictures. They are lovely. Jennifer did a great job.

http://www.facebook.com/album.php?aid=111139&id=541641274&l=5da32acab9