Strength

Life is funny. And though I should be quite used to its ups and downs, and its unexpected turns, I never seem to be less surprised when one day things are down, and the next they are up. I should be better suited for such such a life. But I'm not.

The sun has been out here in Toronto, and the temperature has been hovering in the 15 degree zone, and people are out and about loving it. Some people loving it a bit too much, as I saw a girl in a skirt and t-shirt today freezing her butt off - but over all it has had a great affect on the mood of Torontonians. We are so sick of winter by March, and it shows - hence the girl with the bare legs today. I am no exception. Today Scarlett and I took a long walk. We sat at Starbucks and soaked up the sun. We drank tea, watched people with their babies and dogs, and even ate a chocolate covered caramel pretzel stick that has made its way back onto the Starbucks menu. Thank you Starbucks!! It was amazing, and Scarlett had a great long happy nap, as I relaxed and oozed happiness.

Besides being lazy at Starbucks, I have been working out at our club. It's been so great to be back there, getting a great workout in, and being among people again. I have a program that a trainer has put together for me. It's great. Today especially I felt so strong, like something has changed, like finally my body has freed itself from the aches and pains of tx and is able to gain strength. I was looking in the mirror today as I was working out, and I could not help but think of where I was 3 months ago. Even a month ago. How my body is changing and muscles are growing back. I feel strong. When was the last time I felt like this, high school perhaps. I walk with my shoulders back, taking in lots of air into my lungs. God I am happy to be alive today. Happy to have this body that is responding to my demands for it to get better and stronger. With each work out I feel less anxiety about rejection, about infection, about something going wrong. Since it's not. It has not since. Positive energy in running through my veins today.

Since the biopsy results came back negative for rejection, infection, or fungus growth of any sort, I have had my prednisone lowered by 5mg. I am also able to stop the blood thinners in 10 days when I get my filter removed. The filter and this blood clot that I had 4 months ago has been such a pain, that I am thrilled to have that chapter of my life closed. I saw the Thrombosis doctor this week, and the ultrasound showed no blood clots, and that's what we wanted to see. I don't think anyone expected for it to still be there, but who knows how long these things can drag on. I am just happy it's over. So much of this extra stuff that I have been dreading is coming to an end. It's amazing how things change in 3 months.

So what now? Do I keep the blog? Do I keep writing? I don't know. I have committed myself to writing a book. It has always been something that I have desperately wanted to do. To accomplish. I have lots to say, and always thought that I would want to get it down on paper after I had my transplant. Well, the time has come. I have started to write, and it has taken me away from the blog. I simply don't have enough energy for both. I find writing tiring, but rewarding, often exhilarating. Sometimes I can't stop. At the same time I don't want to make my blog something that I never wanted it to be. About what I had for dinner, and what Scarlett did today. Not that there's anything wrong with that, it's just not me. It's not what I wanted to say here. I guess time will tell.

My first 30 with CF

Scarlett,

A few days ago an old friend from high school came to visit me. We were very close before K moved to Vancouver and her short visit reminded me how much fun we used to have. She got a very special book for you...soon I will start to read it to you. It's a book that my mom used to read to me in Polish when I was little. Anyhow, K and I spoke about the transplant a bit, and she said something interesting to me, which has inspired this post. K said to me, 'Scarlett will never know this life before her.' This amazed me, even though it's an obvious observation, it's also an insightful one. Just the thought that all that has happened for these 30 years you will never know, since you were not here yet with us. For some reason this amazes me. 30 years with CF, 30 years you will never know.

In so many ways I am glad you will never know it. That transplant comes at a time when you are so little. You will know as much as you ask, and as much as we talk about. 30 years is a lot of story to tell. And of course it's not all CF. In fact very little is CF. My life has been full of so much more, but also as a result of CF, in some ways much less.

Before you, I had to do a lot daily to keep myself healthy and living my life. My daily routine included 2 nebulized masks a day which later became 4 a day, and later 3. Depending on what medication I was taking. Things did change over 30 years. I was always on a lot of pills. Enzymes whenever I ate (5-8 with each meal) and others such a vitamins, heartburn medication, antibiotics.... Pills were never a big deal for me. Next came the puffers, as well as emergency puffers for exercise and when I was in school. The most time consuming of all my therapies was always my physio. When I was a child, your grandmother and grandfather (my mom and dad) did most of it for me. It involved clapping on my back and chest to loosen up the phlegm inside my lungs. We did about an hour a day for years and years and years. When I was in my late teens I began to use other devices and ways to do physio, so it allowed me some independence in life. Lastly, every 3 months I went to clinic to see the CF team. The doctor as well as her or his team made sure that I was on track and controlling CF the best we all could.

During the last few years I have been going to the clinic a lot more. Sometimes every week, sometimes once a month. This was due to constantly battling infection, resulting in IV or oral antibiotics either at home or in the hospital.

It is impossible to tell who I would have been without all this in my life. As I said before, there has been so much more than just my CF (I will tell you about all that too). But I think so much of who I am has been shaped by having to cope with being sick and constantly dealing with the medical industry. Having to constantly deal with doctors, nurses, technicians.....the list goes on and on. It made me strong, and it made me effective in getting what I want.

There are so many lessons in going through the ups and downs of chronic illness, and no matter how I try to shelter you from it's hardships, I know I can't. It's impossible. You have already been thrown into it all, at the rockiest time, and I am amazed at how well it's all going. How much love there is around you, how happy you are, how peaceful you are. You sleep with so little fret, your content little smile floods the mornings, and closes each day in the bath. Every storm, is quited by your soft giggle (you are starting to giggle and laugh and watch our every word) and calmed by your simple needs. It's like the hardest of things living in the house with the simplest of things, I think this has saved my life. I have no doubt.

As you grow, there will be many days, I promise you, that we will escape my medical struggles. I promise you that, if nothing else. We will have normal lives. We will focus on growing as a family, and even allow ourselves to get tired by life's trivial motions. As I promise this, I also promise that I will never ever forget what it feels like to struggle in the most fundamental way, as I am now. Since it is this that has brought the most awesome perspective into my life, and it is this that will carry me into the future appreciating every day that I have that is normal, and perfectly trivial. This is the largest and the most significant of things that I can bring into our life together, and the most significant of things that I can teach you. At least I will try.

Approaching 4 weeks on the list.....

It is a cold later summer night. I'm sitting in bed, finishing up IV's and mask, thinking this would be a good time right now. I am ready. That call could come now and I would go without hesitation into the unknown.


Into better things.

Into the unknown.

Into breath and light and something less familiar, but somehow so much more familiar. Than this.

Pretty in Pink, the beginning of Scarlett's letters

August 25th - 5 and a half weeks

Scarlett,

I have been thinking about how I can possibly write to you, about you, about us, when you are so tiny and brand new, knowing that you will read this when you are so much older. It's a funny thing. But I think about you in the future often, and think about what I will say to you when you're 5, 15, 25.....I want to be there to say the things that I want you to know, but I might not be. It could happen to any one of us I know, as humans we live with such an uncertainty every day about what the future will hold. I have never thought about this as much as I do now. My life now is measured on the Scarlett scale. It's not 5 years, it's when Scarlett will be 5. It's not, 2 weeks at the hospital, it's, 2 weeks of Scarlett's life missed. And so on and so on. I can see you now thinking, mom common....and I am enticed to say; Wait until you have kids....but I won't say that. This is just how it is. My life, and that of you dad's has become about the life of Scarlett.

So this uncertainty is what we deal with as humans all the time. I realize that I am not the only one who thinks about the fragility of life. But the fact is, the fact that I have been living with for a long long time, is that I know more. Sometimes I wish I knew less. But I know more. When I was little I knew it, and as I grew up I knew more and more. Today, I feel like I know too much. Sitting here waiting for this lung transplant is like knowing too much information. Like having all the pieces of a puzzle and knowing that you will never have enough time to put it together. That means there is frustration involved, anger, the feeling of being unsettled and constantly uprooted and disheveled. That is now. Waiting for fate.

It had not always been like this, and may be this is where I want to get you up to speed. It has not always been like this. I hope that it will not be like this forever, but that, once again, is up to fate. Right now, all I have to tell you about is the present and what was the past. So this is what I will try to do. Tell you about now, and somehow about then in these notes to you. You might read these one day and think you had a crazy mom, and then again when you are older and something might make perfect sense. The one thing I do know however is that so much of you is embedded in this story right now. In this life that we are struggling to live right now. I watch you, watching me, and I look at those eyes you have, those ice blue eyes, and I think you are taking it all in. You are becoming you everyday. Scarlett, you are becoming and you are growing right along side this chaos and somehow you bring such clarity to it all. It amazes me as I watch. I write to you, but you are here. You were there. I don't worry about you, as I can tell how strong you already are. You my girl have it all figured out.

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?

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.

Birthday weekend and Fathers Day

I have had a good week. Since my 30th birthday is approaching, I decided to do somethings for myself that I used to do all the time, but has become harder due to the oxygen and lack of stamina. I got my nails and toes done, as well as some waxing (ouch!). I got a few nice outfits, some shoes, and got my hair done. It felt great. What an incredible pick me up....I always forget what looking good feels like, how much it helps when you're not physically and mentally 100%. Anyhow, it was great.

Tonight Martin and I went to a great Indian place for dinner with a couple that we like to hang out with. In fact my friend M is one of my oldest friendships. I have known her for many many years, and recently she accepted when I asked her to be our Scarlett's godmother. I cannot imagine a better person for the job! Anyhow, tonight it was great to see her and her boyfriend JR. We had some great conversation, and I managed to feel good through dinner. It was nice.

This weekend we have plans to spend time alone, and with my family. Angie and John are going to john Martin and I as well as my parents on Sunday for a nice birthday dinner at our club. I hope the weather is lovely and we can enjoy the patio and have a great 30th birthday celebration.

That's us waiting to go out to dinner tonight. Awwwww cute!!!

One long fever

Today was a bad day, filled with a fever that lasted about 6 hours. Yesterday I had a mild one on and off, and then today I woke up with a 37.1 which is not officially a fever, but I felt miserable. By noon it was 37.8 and was up and down like that all day. At the worst of it, it was 38.06 (after Tylenol) and I have not felt this miserable in a long time. Emotional and hot, with everything spinning around me. Just terrible.

My mom went to the clinic to get my meds, and I asked her to see if she could find my doctor and ask her what we should do. I knew it was time to switch these IV's, and I would have to do it in the hospital to make sure I was okay. Dr.T found me a bad for tomorrow, which is great. No ER. So there we have it, I was hoping to do all the waiting for my new lungs at home, and I'm not even on the list yet and I'm going back to St.Mike's. Not the best of days.

For the last week or so, may be two, I have been very down. I have been having a hard time with all the set backs with tx, and with all the infection and how quickly my CF has become too hard to manage. I have not shared a lot of this on my Blog, but I am now. I feel that it's my outlet, and I have to.

I like that everyone feels that I am very positive, and that I am getting through this so well, but I don't feel that. I am so defeated right now, by all of it, it's hard to stay positive. Especially when I have a high fever and think the world is going to end. Sometimes I feel myself getting used to things that I do not want to get used to. Getting used to so much loss, that it all seems like a blurr: The things that I have lost versus those that I have gained. Those moments scare me, when you start to think that may be all the fighting that I have done for all those years to have a normal life mean nothing, when in the end I am still the girl in bed all day with the oxygen tube, the IV coming from the Port in her chest, the nebulizer by her bed. I know it's all worth it, I know that. But sometimes, in those moments when I am so sick, in pain, and fever, and emotional defeat, I just don't want to fight for any of it. Those moments are rare. But lately they have been more and more often. I guess the more sick I get, the more it's about the pain, and about being terribly sick than anything else. I hate those moments.

Many people that have had a lung transplant have told me that this road would be a difficult one. I didn't know however how difficult it would be. If someone told me in December what would be happening now, I would not have believed them. The fact that I am still told things will get worse before they get better, well, I don't want to believe that, but I do. Experience tells me now, that this is unlike the battles that I have had to fight before. The ones that I walked away from strong and victorious. I think I have finally come to grips that my lungs are no longer on my side. They can no longer sustain life in my body, and the only way that I will return to life is new lungs. I guess I have been hoping for the past little while that things would still somehow improve and I would gain a few more years without tx. It's happened before, and people keep telling me that. But I know it's not the case. I can feel the heaviness in my chest. I feel that pressure under my ribs, I feel their weight and how hard they are trying to work. For someone like me, that always fixes everything, I cannot fix this. I can do all my treatments perfectly, and keep my blood sugars perfect, like I always have, and this battle is lost. I put terrible amounts of pressure on myself to fix this and I can't. I look at it as defeat, when it's just a fact. CF kills people. Yes there are things we could do better. Do our treatments, work out, eat well, keep our blood sugars down, and weight up.....but for some of us we do all those things, and it still takes our lungs away from us. Just a fact.

As much as I want to forget how terribly hard this time was, I never ever want to really forget. Since I know that there will be a day, may be 8 months from now, may be a year from now, when I will worry about every day things. And it's then that I want to remember, and think, wow, I went through that. Shit.

June 8, 2009

It's been a while since I posted. I guess nothing has been going on really. I have been feeling pretty well, with the odd fever here and there. Not a high fever, just slightly elevated, but enough to feel tired and sleepy and hot. So, not terrible news, and not really good news.

We're waiting for me to get that second vaccine. June 30th I'm going to get that. Then waiting 4 more weeks. I have stopped thinking about it, since I can't do much about it. When our little girl comes, I will be listed, that's how I think of it now. All in all it's not too long now, not at all.

Tomorrow I have clinic, which is quite tedious since I know I am no better, may be worse, and I will remain on the IV's. So I'm only going so they can refill the script, and we can do it all over again....again and again.....well better not to think about it.

The nursery is almost almost done....soon I will post pictures. Just the chandelier has to go up, and we're done!! Just like that. Everything is also ready. The car seat, the pram, the bottles, the diapers, the crib, the sheets, the bassinet.....so much stuff! But I think I didn't get a thing that I will not need. If something is missing, we can always run out and get it. So we are ready, but know that our little girl has to take her time and come when she's ready. It's not time yet, but soon!

A friend got the call!!

When I was at clinic last night I saw a friend of mine that I met during my last hospital stay. We only talked over the phone and messenger (due to infection control issues) but got to know a little bit about each other. When I met her she was already assessed for tx, but was not sure if this was the right time for her. During the last few months however, she become more ill and it became clear that tx was the only thing to do.

She was listed recently, may be 3 weeks ago, and last night at 9pm she got the call! I saw her yesterday as her mom pushed her wheel chair, when I was at clinic. That was at 7pm. Who knew a few hours later the call would come, and Ashley would have her new lungs. It's really amazing.

Her mom emailed me this morning and told me the good news! I am very excited and cannot wait to hear from Ashley herself when she has made some progress. Right now, everyone out there, think positive thoughts for Ashley. Think speedy recovery, speedy rehab, and strength for Ashley as she fights to get herself back physically!

I cannot believe it!

Clinic

Today was a long day of waiting. I had my CF clinic. Was put on more IV antibiotics at home. I am starting to think I won't be going off them during my wait for new lungs. Though I have to admit I like being on them since I feel half human on them, and am able to live more of my life.

So I have nothing new to report, so this will be a short post. I am waiting for the call from TGH to let me know if I will be listed, and if so, when I meet the surgeon and when I get my pager. Again, there is nothing I can see to think that I won't be listed, I just want to get that call, get the pager, and begin my wait. I know that due to my rare blood type that wait will be longer than the average, and so the faster it begins, the faster I will get my new lungs.

For those that don't know, Saturday is my baby shower. I cannot believe we are here already. I am really looking forward to it. Those that are coming are really some great friends of mine. Some people can't make it, it's not always possible to find a date that is good for everyone, but it will be an amazing day. I cannot wait for it, to celebrate with those I love, and to talk BABY!! I will be sure to take many pictures (or my good friend Kath who has been chosen to be the photographer) and post them post shower!!

The weekend and 62 days

We had a pretty glorious weekend weather wise in Toronto. Not overly hot, but sunny and dry. We spent most of the weekend outside in some form. On our back patio, on our front patio, or the Starbucks patio. I got some nice sun, and sun always makes me feel better!

Martin and I feel like we're more in love these days than we have been in a long time. We have been married for 2 years and 9 months, and have gone through all sorts of stages in our marriage already. There were always stressful times, like starting a business, flipping a home, going through infertility. There were great moments like our wedding day, our honeymoon, buying our dream home, finding out we were expecting a baby! Then there were all the moments in between as life just happens. I think marriage is hard, but I think it's incredibly rewarding. I think that if you don't find the right person, at the right time, a marriage has no chance of success. I feel like right now, after 2 years and 9 months, Martin and I have been through so much, that we can handle anything. Our commitment to each other has been tested and tried. This weekend we had a fight about something stupid, after which we decided to never fight again, we love each other too much. So we had a great weekend. I think both of us think periodically about what we're about to endure. What's about to happen in our lives. New baby, new lungs, just a continuation of the wonderful life that we already have, just with a major upgrade.

62 days. What's 62 days? Pretty incredible isn't it: That our little girl will come into this world in less than 62 days!! Where does time go? This Saturday is my baby shower, and I am so excited. It's going to be so nice to see all my friends and family!! I cannot believe how close we are!!

What happiness feels like

I forgot what happiness feels like. Today I remembered. Not because of the assessment, or anything else in particular. I think happiness happens in moments. One day you just pause, and you think, hey, right now I'm happy. This happened today. This is how the day went:

Today was day 3 of the tx assessment. Day 2 was good, but very tiring, and I just didn't have the time or the energy to blog. Tons of tests, tons of pokes and strange machines. If I was not on IV's, I would not have been able to get through it. The antibiotics allow me to stop coughing long enough to do other things but....well, cough. My lung function only increases a few percent, but I am able to leave the house, and walk around, and just generally live some sort of a life. My mom and I were very very tired after day 2. Today, Day 3 was only interviews, and it was a good day. Martin came with my mom and I, as my second support person. I have my mom, and Martin as support people. Meaning people that will be with me during the time of being listed, and after tx when I am being closely watched for the first 3 months.

So today were the interviews. We saw the tx coordinator first, a nice lady that walked us through the process in detail. From being listed, to the waiting process, and then post tx time. There was a lot of information. The program is intense to say the least. Once I get listed, I am going to be at TGH 3 times per week for a work out program. No matter what, no matter how low my lung function gets, it's required. They customise a program for each person, so you only do what you can, but the point clearly is to keep you well enough to do as well as you can during and after the operation. Other than that, they told me that I am a rare blood type, B+, which can be a longer wait, or it can be a much shorter wait since I don't have a lot of people competing for the same pair as me. Depends how you want to look at it. Nothing I can change either way. Post tx is intense again, with the first 3 months being the most rigorous. Once a week PFT's, XRay's, and blood work to keep a close eye on what's happening with my new lungs. So basically lots and lots of work, but lots and lots of reward. That's how we think of it anyhow.

The program itself is incredibly impressive. We have dealt with less than impressive programs before, so going to a place where the people are this organised, this focused, and this knowledgeable is quite refreshing. After the Transplant Coordinator we met the dietitian as well as the social worker and we really were impressed by the people that we spoke to. There was definitely a sense of confidence that helped me as a future tx patient feel more confident about what I am about to embark on.

The coordinator told us that she will call us next week with the listing results. Meaning if I am a candidate for transplant, and did the team decide to list me. Though there seems to be no reason that I can see why I would not be listed, (or my CF doctor can see) this is a big step, and really the last hurtle before being listed and receiving my pager.

After our day at TGH, Martin returned to work and my mom and I got some sun in my garden. We talked about all that we learned today, there was SO much information, SO much to process and understand. When Martin came home a few hours later, we ate dinner and sat in the sun some more. Martin and I spoke about all sorts of things, and I thought about how much I have been through during the last few months. How much adjusting we all had to make. How many tears there have been, how much pain and frustration and illness. How many bad days, so few good health days. But today was the first day in a long time that I felt a little bit of the old me. I felt that by getting through the last few days I accomplished so much. They were hard, not horrific or terrible, but hard. Emotionally hard, physically hard, but I got through them and learned a lot about myself, and about Martin and my family. It's amazing how there are always things to learn, that always amazes me.

In the early evening Martin cut the grass, and did some work out front. I did a bit of sweeping (with my oxygen, as if it's not even there....how I am used to it now amazes me!!) and then my mom took over when I got tired. So I sat on the front porch and watched people walk by, watched my husband cut the grass, and watched my mom help out, and I thought, wow, today I am really really happy. Go figure. With all this, I am really really happy. Go figure.

Transplant Assessment

Since I got my tx assessment package in the mail, I thought I would share it with everyone. So that when the 19th comes, everyone out there is sending me positive vibes and prayers so that I can get through it without losing too much health, or losing my mind!!

Day 1: May 19th
8am: Blood tests, Chest Xray, ECG, Urine (total about 1.5 hours)
10am: 6 minutes walk test
- This is a self-paced test where you walk as far as you can walk in 6 minutes on a flat surface. You are tested using your own specified level of oxygen. Other exercise testing will also take place to measure endurance. Total time about 60 minutes.
12:30pm: CT Sinus
- People with CF have this test done to look for infection in the sinuses. This CT scan is going to be of my face. It will take about 15 minutes.
3pm: PFT/ABG's
- PFT's (which I always do in clinic) let them know how my lungs work; results are compared to someone my age and height with a normal lung function. An Arterial Blood Gas will be taken from my wrist (this hurts!!!!) to test the level of oxygen in my blood. These will take 45-60 minutes.

Day 2: May 20th
8am: Echocardiogram
- This is an ultrasound of the heart. To tell how well my heart pumps blood, as well as the valves in the heart that separate the chambers to see how they open and close. This will take about 45 minutes.
9:30am: RNA (MUGA) scan
-This scan tests how well the heart pumps the blood and the percentage of blood being pumped out of the body. It can measure how well the chambers move at rest and exercise. It will take about 1 hour at rest, and 1.5 hours for exercise. Two injections are requires.
1pm: Anesthesiologist
Anytime: PRA Level
- It takes about 15 minute to do this blood work. This blood work will screen for antibodies (immunity) to other people, and will be stored in the freezer for future tests. If I have immunity, further testing may be required to determine the strength of this immunity so that they can be prepared to care of me post transplant.

Day 3: May 21st
9am: Transplant Coordinator
- meeting to talk about the transplant process. Lots of questions about support people, life style etc. It will take about 1 hour.
10am: Dietitian
- 1 hour appointment to talk about nutrition, pre and post transplant.
12:30pm: Social Worker
- Talk about family support, living situation, financial issues if there are any, how to deal with insurance etc. 1.5 hours for this meeting.

Day 4: May 22nd
11:45am: V/Q Scan (Quantitive pulfusion scan only)
- This test will take 60 minutes. I will be injected with a nuclear dye into my vein. This will flow to my lungs and show up on the scanner.

I will be one happy woman on the 22nd, let me tell you. Once it's all done. Just writing all this down makes me ill. I've already done some tests at SMH and cannot believe how much more there is...!!!

A month from my past test is when the decision to put me on the list will be made. Right around June 21st, and my 30th birthday.

Patience

The nursery is really coming along now. It looks so good I can't believe it's not even done yet. Today I picked up a few odds and ends that really made the space pop. It finally looks like a little girl is going to live there, finally!


Tonight I will start the mural on the window wall. I hope that it will not be a big job, since it's just a few wallpaper-like elements that I will paint on. Wait and see I think it will be amazing! I think once that's done I will take some pictures, since I really want to show it to everyone. The chandelier is not here yet, even though it was ordered many moons ago....many many! And that's the final big item to come. But may be I will take come pics in pieces to give everyone an idea. We've been working so hard on that room, that it needs to be seen by someone other than us!! I was hoping to have it done much sooner, but with everything taking months and months to order, and my being sick, things have been really slow. This little girl better not think of coming to us earlier than expected.


Today I took a walk down Queen Street West and stopped at a really beautiful store named Chatelet Home. Imagine an antique store for your little princess. The most beautiful things you can imagine for a nursery, for a little girl of course....

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Okay, so the above was written a few days ago. I never finished it, as the last couple of days have been terrible. Generally I have not been feeling well, and last night I was terribly dizzy and nauseous. Strange symptoms that freak me out, and make me worry. This morning things seemed to have calmed down, so hopefully the day or two in bed has helped me out. Today, I hope I can get more done and more life lived.

I got my assessment package in the mail, and the dates for all my tests and appointments. Looks like by May 22 it will all be done with. From May 19th - 22nd the days will be long and the tests quite draining. I am not looking forward to that week, but just want to get through them, and get myself on that waiting list. That's my goal. Only then will I relax and focus on my babies birth. It looks like I will have a month or so before our little girl is born to get used to being on the waiting list for tx, and just focus on her arrival.

I think about what's ahead all the time. ALL the time. So many things are happening, I cannot imagine all this madness will be over within a years time. There is a level of calm that you have to gain during this time, otherwise you'll lose your mind with worry and thought and calculation. I just go day by day, night by night, and try to stay calm and focused. For those who know me, know that I am quite the Type A personality. I am demanding on myself, those around me, the world in general. I love to control things. I love to learn and grow and move ahead, never dwell or go backwards. To be in this situation right now, in many ways, is the Type A personalities worst nightmare. Total loss of control. Loss of the ability to demand yourself to do anything, your body won't allow it! AHHHH!!!! That's how I feel on most days. This, more than anything, is a lesson in patience.

Patience, patience, patience.....

Getting home with the help of Justin Timberlake

I know a totally corny title....you'll see why soon. I'm not even really that big of a fan....haha....

Yesterday I finally made it home. After 29 days, plus those 14 days that I did the first time around. Somehow it feels like forever ago, yet it went by quickly. Sleeping in my bed last night was hard for me believe it or not. It felt alien, but I did fall asleep quite fast and slept until 9am, which I have not done in ages. I certainly feel more relaxed this morning, as yesterday I was very anxious and had a hard time relaxing.

I am not on IV's at the moment, which is also quite a nice thing, but I think is the reason behind the anxiety. It seems like when I am on IV's I am more stable and have no surprises. I don't wake up with a heavy chest, coughing fits, and fevers. Generally on IV's I feel good, though my lung function does not change much, but as least I feel ok. I do not look forward to no IV's since I tend to anticipate when I will get worse. Hopefully this time I will have a few weeks or even months without having to go on IV antibiotics. Fingers crossed.

The tx assessment is moving forward. I am waiting for TGH to contact me with the actual appointment date, and I have been calling them to get that date sooner. Hopefully we will know very soon. It will make me feel good to have that date set. So we wait.

Part of the pleasure of being home is being closer to the nursery and being able to go up there and sit and look. Our little girl is collecting some outfits already from friends and family that are sending things. It's so great. There are some pretty cute outfits that she's going to have to grow into. A few are the teeny tiny ones that I know will last for only a short time, but they are my favourites. We will have to choose which one she comes home in. The nursery itself looks awesome. Like a different room. All the big things are there and waiting to be fluffed up and prettied up with the accessories. The blinds and bedding are being made as we speak, and will soon arrive. I can't wait to add those little elements that will soften the space up. I can't wait to show you guys, but I think I'll wait until it's all put together, for the full effect!

I am coping with all this change not as well as I am used to. Meaning that I have been able to, all my life cope quite well with changes in my health and my limitations. May be because this is the final limitation, the final step before I am free of this disease in my lungs. May be that's the reason why I am having these moments of stress and anxiety. Having the oxygen at home, has also added to that feeling. It's not ideal for our home. We live in a very large house, and the tubing and compressors are just not enough, so we have to see what we can do for that. It's a pain, and dealing with these companies is not easy. In this condition living in a small condo would be ideal. Everything close by, and easy for me to get to. But, I know that it is temporary. Not forever, though it will be a year or year and a half, and that causes me to really get frustrated. Somehow, I still wake up every morning and think this was all a bad dream, and I am able to get out of bed without getting caught on my oxygen tubing. I feel like I have lost something, and in some way I feel like I am sad for what I had lost. I try to think of all that's coming, the gifts that I will get. The baby that will be with us soon. She is the greatest gift. Then the gift of life that I will receive due to someone else's great loss and their insight and generosity as well as the grace of their loved ones. So I understand that I should look forward, that I should not concentrate on this time now not being so comfortable. It is par for the course.....this is the world of a patient pre transplant. I know this. Somehow this does not make the sense of loss go away.

There is a song that I really like, by Justin Timberlake, that I never listened to closely enough to get the lyrics. I just thought it was a great song. Recently I actually heard the lyrics, and it caught me off guard that this is how I feel right now:

"I've been travelling on this road too long
Just trying to find my way back home
But the old me is dead and gone
Dead and gone"

A long road that I have been down, the road of CF. As it reaches the end, I do feel that it has taken with it the old me. And that part of me is dead and it is gone, and now with tx coming, I am trying to find my way back to whom I was and who I am meant to be. Like the old me, but better. The rest of the lyrics, I looked up and they are totally weird and have nothing to do with anything I can relate to.....such as....well you can look them up on your own, I won't write them here thank you! Somehow though, those lyrics above, the chorus, made sense to me, even though I don't look at Justin Timberlake as my spiritual guide....haha.

So, now we wait and see how the days go. We are waiting for TGH to call and set that assessment date. We are waiting for baby girl to come home to us. And we are waiting for my lungs to come. Well, let me correct myself, those lungs that someone will let me use. That person that we will owe my life to. I think about that person all the time, without me knowing whom I am thinking of, and without that person ever knowing what impact they will have on me. It is bittersweet isn't it?

100 days...

Today was a great day. It was so nice to see Beth, Don, and....the belly!!!! Beth looks great. She is beautifully pregnant, and in my opinion has the best perfectly round belly ever!!! It was just the best gift to see her today and to have some time next to my baby.

We tried hard to get me to feel some kicking and moving around, but I was unable to feel it. Not quite time yet. I will get a chance again soon.

I am writing this quite late (okay may be not so late for normal people, but late for hospital time) so I am not going to write much. I will say that I cannot believe how we're moving along with this pregnancy. Time is just flying by, as we're approaching the 3 month mark!! What?! 3 months to go??!!!

Today we're at 100 days, and I can't believe we're here. That little ticker has been a little reminder in my life, and now it's here. I will have to get a second one soon for my other big wait......and one day at a time, we will wait another 100 or 200 or 300 days for another miracle. Each week at a time we will look forward to what is ahead, as a family. Each month at a time we will anticipate something that will arrive without notice, and change our lives in every way possible.

Our little girl will make life worth living, as my news lungs will allow me to live. How fitting that this will all happen within a short period of time.