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.

2 days

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

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

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


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


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


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


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


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

A very special post

I have been meaning to write this post for some time. But things always come up, other things that I have to say as they unfold in my life. Life has simply been so hectic and unpredictable during the last few months, especially during the last few weeks, that I have been unable to write it. But I am ready tonight.

This post is for, and about, my mom, Hanna.

Sometimes when people mean the most to you, there are no words to say thank you. No words to express the impact that someone has had on your life, even when the impact has been by far the largest and the most complex. In this case, this person in my mom. This person that I value so much, that I often cannot express the magnitude of my gratitude to her.

Being the mother of a CF child is unlike anything imaginable. Not that I know what it's like. I don't. My baby is healthy. I have not had to go through what my mom and dad did when I was little. It's something that I think of now, as a mom, and marvel at. How did they handle all that was to come, all that information, all that lack of information?! But they did. And my mother has always been my biggest advocate. Relentless, persistent, and dedicated. To me. Making sure that she did all she could to keep me on top physically. To this day, even though I am an adult, with a child and husband of my own, she is there to pick up where she left off when I left home and started an independent life. Her dedication now, is the same, if not more, to the cause of getting me to my lungs, and taking care of everything else along the way. Right now, my mom is taking care of the most precious thing to me, Scarlett.

For many mom's, if not all mom's, leaving your baby at home while you are away for an unpredictable amount of time, is unthinkable. For me, it was unthinkable too. I never thought it would come down to me having to wait this out away from home, and away from my family. The task has been made easier, knowing that Scarlett is with her babcia (grandma in polish) Scarlett is infatuated with my mom. She loves her. You can see it, and it's incredible. Anyone else, and I would be inconsolable, that it is not me the apple of my daughters eye. But since it's my mom, I can handle it. I see how they look at each other, and it makes me feel comfort. Scarlett is just so loved, and so in love, that I can somewhat put aside the pain that I feel being away from her. They are like pals, like buddies together all day. This is a bond that Scarlett and my mom will have for life, and it's very special.

The decision to have my mom help us with Scarlett all unfolded is a fairly natural way, as it became more and more clear that I was very sick during the beginning of this year. Things changed quickly, and Scarlett was on her way, and we were faced with some choices regarding how we would manage a baby, me possibly being in the hospital or waiting for tx (or both) and Martin still having to work. We thought of a nanny, and that was the plan for a long time, until I got more and more sick, and the thought of our child being with a stranger 24/7 was incredibly unsettling. My mom told us from the begging that she would help, and we would have to figure out a way to do that, but I don't think any one of us expected how sick I would be, how quickly, and how little I could do not only for an infant, but soon for myself.

The fact is my mom has given up her career that she loved, and completely dropped her life, and within a split second was living with us taking care of me before Scarlett even arrived. It was a shock to her, I know. My dad also had to make adjustments being alone so much, and selling their house in order to move to the city where we could all be close. In time things settled down, but the adjustment for everyone was huge. It was so hectic, and of course in the middle of it all, I was getting worse, and waiting for these lungs.

So my mom dropped everything, and now runs my house. She takes care of Scarlett all day long until Martin comes home. He does night duty, unless he comes here to the hospital. Everyone is on a rotation with visiting me, so that I don't have to be alone too much, so it's crazy. But we manage, and I think we do a great job. But at the heart of it, is my mom. Making sure my daughter is thriving, and doing her best to keep me involved in every little Scarlett moment. I know how hard life is for my mom. Seeing her daughter this sick. I don't envy her. I keep reminding myself, that I am her Scarlett, and she has to see me suffer, so much. And the way that must ware on a person, over 30 years, it's hard to imagine. I keep having to remind myself that my mom has to fight the sadness in her, and take care of such a bright and happy little creature that is our Scarlett.

In an way I know Scarlett brightens her life right now. She is such a happy baby, and I am so glad she keeps everyone occupied and our minds off the difficulty of what we're dealing with. It's incredible what a baby can do! And she has no idea she's even doing it! But I don't have any doubt that her happiness, and well being are all directly a result of how well my mom takes care of her. Martin tells me all the time, that we have the most loved and cared for child in the world. He too is amazed at how much my mom does, handles, and how well she does it. I am in awe of all that this woman can do, even with all that's going on. It's incredible.

So even though I am terrible at saying it, I have here a way to express it. I write better than I speak. And at a time when I have less energy than ever before, this blog is the outlet I use most to let the world, and those I love, know what is inside my heart. My mom is my most dear friend, the smartest woman I know, and loves me more than I will ever know. I know this for certain, and will never forget all that she did to get my family to the other side of this.

Saturday

Saturday was hard. It's early Sunday as I write this, and I am glad that the day is starting fresh and hope it will be better than the previous one.

Physically I had troubles. My main problem right now, is that at rest I am breathing quite well, (this is not the problem) but do very poorly when I stand or walk. Or do anything while standing or walking. Going to the bathroom is fine, but washing up in the bathroom is hard. I tend to get tired after about 5-10 minutes in the bathroom standing. I wash my face, hair, and brush my teeth (which is this crazy thing I do only having a sink to work with) and I pretty much ensure that I can't do anything else in my day. My lungs often burn after so much that I end up taking more pain killers. My legs give out at that time also, my knees twitch and quads shake. I have been back on my leg routine here at St.Mike's, even though I can't get myself to TGH to do physio, but I have lost strength during those 2 really sick weeks. Anyhow, since I like staying clean and find it's something that makes me feel that much happier in here, sometimes I over do it and pay the price later. Yesterday, I thought I felt better than I did. I did the full sponge bath routine in the bathroom, washed hair, creams, lotions, the full bit. I can get it all done on 15L oxygen blasting into my nose in about 15 minutes. I wash thrilled with myself after. I felt good and clean and smelled like all my favourite products (little bit like home). As a result however I ended up sitting down back in bed and having a coughing fit that ended up in an 'episode' - I lost my breath and could not breathe and it was painful and scary. I used my Bi-pap to get myself back, but I hate having those. Oh, they are awful. The rest of the day I coughed up fresh blood.

Emotionally yesterday was also hard for me. I was not in the best place. All day. From the time I woke up to the time I went to bed. I missed Scarlett so much I can honestly say that my heart hurt. I felt a longing for her that I have not yet felt, and found it hard to think of anything else or be positive. I never really went to bed. I slept here and there, waking up after strange and unsettling dreams. I realize that the steroids have a lot of input here, why I can't sleep and am emotional and 'different', but I am shocked how quickly I am feeling these side effects. They are not easy to live with. I am shocked at how not easy to live with they are. Since I will be on these for the rest of my life post-transplant, that got me more unhappy and depressed as the day went on. How do people live like this, I thought?! I realize the doses come down, and I'm sure my body will adjust, but right now things feel like too much. The bleeding did not help in calming me down. I'm on every treatment we can muster, and my lungs are bleeding. I feel like these lungs can't come soon enough.

I hope today is better. That I am able to sleep and rest and have no more bleeding. I was told that I can go home whenever I want to bathe and just be home. I live close, so they let me do this. But I don't think I can manage it. Even if we use a wheel chair to get me out of the hospital, how will I get inside the house, up the stairs. These seems like impossible tasks right now. The doctors are leaving it up to me, knowing you can't be in here without going crazy, so they want me to get a break. At the same extent they don't know how I feel and want me to make the call about being able to go out. After yesterday, I have no need to leave this room, aside from my hallway 'workout' walk. How the days have changed from when I would do anything to get myself free from this place. Now they would have to drag me out.

I am up early, since I never reall slept all lthat much. Hopeing to finish this post, and go back to bed and wake up in a better place. I have been there for the past few days and would like to return.

6 days

Last night I wrote a post, and after reading it this morning I had to erase it. It made no sense at all!! I promise to do more frequent updates as things go along, since longer ones I never have energy for, and that means they never get done.

I have been here for about 6 days. Tomorrow is a week. I know time flies like crazy. Especially for me, since there has never been a dull moment. Mostly however I am on percasette's feeling dopey and sleepy, and on my bi-pap sleeping. It's the only relief I get and that's okay with me. It's better than the alternative....wait, is there an alternative....that's right no there is not.

I have had a few scary episodes where breathing did not come. Instead a heart rate of 165 did, and the panic of chocking. It's the worst thing, and it happened last night leaving me tired and scared and defeated. Today I have seemed to returned to some sort of comfort. My slight panic over coughing and chocking I am working on. Last night did not help. The doctors keep reminding me about the anxiety component of not being able to breathe, but for some reason when they say it, it's like they are not giving me my share of credit for how the situation felt and how awful it was. Meaning that if I didn't panic, I would have been able to calm down sooner and not have the extent of an incident that I did. I guess I don't know how to stay relaxed when I am unable to breathe. I'm just a person here people, just a person that is weak and tired a yes panicked when was unable to inhale. The Bi-pap saved me. I grabbed it and slipped it on my face and it started to work for me. Seriously thank god for that machine.

So needless to say it has been a battle. One after the other.My mom is sending me movies of Scarlett every day. They are so cute. She is incredible. I don't have a lot to say about her. This is very hard for me. I am just fighting my own battles and know that she is being raised beautifully by her family.

2 months, 1 week, 1 day on the waiting list. Every day my doctor hopes it's the day. By placing me on the rapidly deteriorating status, she believes it will be any day. I hope so.

Late night ER

Last night, after days without any sleep, more need for oxygen, and what seems like an infection (even though I am on IV antibiotics) we made our way to the ER. I rarely go to the ER. It never makes sense to since I can often call my doctors and wait for a ward bed at home, avoiding the ER all together. But after speaking to one of my doctors last night, she was concerned enough about the situation to tell me to head over to the ER: She would meet me there.

Martin, my mom, and my dad packed me up and got everything organized for leaving. My mom and Martin would stay with Scarlett, my dad would drive me. Once I got dressed and ready, I really had a very hard time walking down the stairs to the car. Once I reached the front porch I had a coughing fit and coughed up tons of tar-like mucus. Those coughing spells leave me so tired, and part of my wanting to go to the hospital, is that I am starting to feel that being home is unsafe. In case I stop breathing as a result of these spells, I want to be in a safe place that can keep me safe until those lungs come. So off we went.

After that coughing spell, I felt much better. I was able to work less to breathe. For those of you who have never seen someone that is working to breathe from a medical perspective, it's much like seeing someone running to their full capacity on a treadmill. The difference being, with a treadmill there is always a way to step off, and recover. Once the cycle of working hard starts it can last minutes (when I walk too fast to the bathroom, desaturat, but gain my breath back when I sit down or rest), hours (after or before a coughing spell) or when in severe respiratory arrest for days. From being there before, it is by far the worst thing to go through in my opinion. When the heart rate never goes down, the shortness of breath never ceases, the treadmill never stops, it's torture. It can also be incredibly spirit breaking. You just want it to end, that's all you think about. Sometimes I would just sit in bed in the middle of the night and cry, that's all I had as an outlet for the breathlessness.

After about 2 days of this situation, and without the ability to sleep with a heart rate of 135 bmp, enough was enough. I could not do enough physio, or nebulized therapy to calm this down. I knew I had to go to the hospital. I welcomed anything at that point that would make it better.

At the ER, I met my doctor, who was quick to establish a new plan of action. New antibiotics (thank god for my Port - this saved a lot of time so that we could get blood work done, start new meds and not have me in more discomfort than I was already in - I LOVE MY PORT) and the Bi-Pap machine. http://en.wikipedia.org/wiki/Positive_airway_pressure Here is a link to what the Bi-Pap is and what it does. I will not get into it here, but it's a great thing! Has calmed me down and actually gave me the opportunity to sleep last night, if only for a few hours. It's not an easy thing to have on your face, but it's relief. At this point it's about small victories.

Today I feel much better. I have a crazy cough, but I am getting the stuff up. As for staying at the hospital for longer, I think right now I am set on trying to wait out the rest of my transplant wait here. It's a hard thing to think about, being away from home, from Scarlett, from the comforts of that life. But the fact is, home is very hard when you are in my state. I don't want to become more and more of a burden to my family, so I tend not to ask for help with some things, and get more tired. I am terrible for asking for help. Terrible. I hate it. But in the hospital I feel that everyone will get some rest from this. I know that Scarlett is happy and well. I know that people must think how can I possibly be away from her now, but the reality is, it is for her that I am here. To make sure that I can get a bit better (perhaps gain some weight and lung function) before the call comes. Staying at home and risking anything, just for the sake of being physically close to Scarlett is silly. It's childish. I am a mother, and I have to act for her.

One day Scarlett will say, mom it must have been terrible to be away from me when I was just 2 months old, after you waited for me for 9 months. and to her I will say. Yes it was terrible. but the fact is, it was a war I was fighting. A war being fought inside me, inside my body, and in war we do whatever it takes to stay alive. All mom's would do the same thing. It's not about what's comfortable, certainly not about what I want. It's about life and death.

As I sit here in the hospital, I have watched a movement start regarding organ donation on facebook and beyond. We have had friends send letters to the media, and post countless links to recycleme as well as my blog. The letters of support and love have been incredible. This outpouring, often from people I have never met, as well as dear friends has been such a victory for organ donation. With the way that this is spreading on facebook, I would not be surprised that many people waiting for organs in Ontario will get their wish sooner, or just in time, just by reminding everyone to talk to their loved ones about their wishes. The power of this type of media to get people talking is incredible. I am so moved by the movement.

Getting the word out

To see the people in your life pull together and try to help in any way they can, is something many people don't get the privilege in life to see. Most of us are never this sick, never in a situation when their life is on the line (thankfully) and need to rely this much on other people for help.

Last week when I was at my CF clinic, I got the news that I am now retaining CO2. Not a shocker, but by no means good news. The only symptom I have of this, is that for about a week I woke up with a headache that left me unable to raise my head. Beyond anything I could imagine. Being someone that does more research about CF than anything else, I woke up knowing exactly what this was. Another hurtle, another need for this transplant to come soon. Carbon Dioxide retention is the hallmark of type II or final respiratory failure.

With this news came even more urgency to get these lungs. The fact of the matter is my hands are tied, as are the hands of everyone else. These lungs will come when the time is right, and there is little we can do to aid the process. Well, the little that we can do, we are. My family, and now friends, are using various mediums to get the word out about organ donation around the country and the northern united states (where I can also get a B+ set of lungs from). I am being interviewed by various news papers, and hopefully there will be articles out soon about my fight. We will get people talking. After all, that's what organ donation is all about, getting people talking. Having loved ones hear your wishes. The great thing about this effort, it may help one of the 1700 Canadians that are waiting for organs right now. I am in a physio room with various people a few times a week. People that, like me, are struggling to breathe every day, and are just waiting for that one call. The call that will allow them to continue their life.

Aside from the papers, I have had people post my story and my blog on their facebook pages. I have one good friend I knew from University, who is a radio personality with over 1600 friends on facebook, that posted my link. I got emotional when I read his blurb about how he knew me. Took me back to Economics 100 at UofT where we met and became buddies for the rest of that freshmen year. He just wants to do something, anything, he said to help out. He knows that the organs are out there, it's just giving someone the courage now to talk about it. A topic, that, let's face it, is hard to discuss or think about. Anyhow, thanks Z for your shout out!! A good friend of my brothers, and a lady that I have known for years, P, is also working hard for me. Trying to get the word out around Toronto. P, is one of these ladies that knows everyone! I mean everyone! P, and so many others are really reaching out, it's an incredible thing!

From those of you who have seen the stunning pictures that we have of our little Scarlett, know that we must have a good friend that's a photographer. That friend, is actually a friend of my brothers from high school, that after reading my blog, decided to help us out with pictures of our little one. She will continue to take pictures of Scarlett, since we often don't have the energy or time to do so. Once I met Jenn, I knew she would be someone that could really help tell my story. As I stated in previous posts, Jenn is helping me document the transplant process. I think she is the perfect person for the job! Her pictures are incredible. Below is something that she's working on for herself. She posts these projects on facebook, and her latest picture (a self portrait series called 365, where she takes self portraits in various creative and meaningful ways) was this below. I loved it. It moved me to tears.

She wrote below the picture:

This image is for Natalia. May she come up for air REALLY soon.... xoxo For those of you that don't know Natalia, you can learn more about her and follow her on her journey http://natandmarty.blogspot.com/I did this all by myself in my bathtub with my tripod... if you watched me do it you would have peed yourself laughing :)

As I move along in this vacuum of the surreal, what is certain, and what is that which I forget, is that there are many people moving along side me. Cheering, holding on, taking deep breaths for me. I am so engulfed by the chaos that I can't stop and thank them all, I don't know how to do it until I can finally stop and rest. But I will. The time will come. But right now the vacuum is carrying me through, and I am concentrating on two things: breathing, and the miracle that is my daughter.

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.

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.

When the swine flu is a good thing.

Okay, so obviously the swine flu is not a good thing, but in any way today it kinda was. In a really strange way.

First off, I am home. After 1 night and half day at the hospital, I am home.
Second, I feel fine. Fever gone, no cough, fine. May be I went to the hospital and my infection got scared and just disappeared like magic. Poof! Well, no, but it feel like that doesn't it?

So, to explain why I felt so terrible, and 24 hours later I feel totally okay (or back to the stable I was) is kinda personal, but I feel like my blog followers can handle it. The day that I had those crazy fevers, and I felt like my world was going to come to an end, that night, I got my period. Seems innocent enough, but I have noticed that during the last year or so, my periods have literally made all my CF symptoms a million times worse. In fact, so much so, that the past few hospital stays have been a few days before my period, or the day of. I am starting to see a pattern. It was yesterday when I was talking to my doctor did I mention to her that I thought there was a connection. She said, that not only does a menstrual cycle sometimes cause non-CF women to get fevers, but CF women often have terrible CF setbacks when they get it. Naturally when I get a fever I think infection, and it freaks me out, and I tend not to connect it to anything else. Since I don't have a increased cough, higher blood sugars, and all the other factors that are telling of an infection, it's most likely that a few days during and the day that I get my period my body feels like it's in total free fall. And it seems to be getting worse, perhaps since I am so weak generally. Anyhow, since I was okay the next day, and today was even better, this is really really possible.

Since I was already at the hospital, we decided to switch my Iv's to a combo that I really like but that I need to start in the hospital due to a possible allergic reaction. I thought since I was already there, it was a good time to get that done, stay for 3 days, make sure it was okay, and go home and continue on. Fine.

Today, however, everything changed. I was waiting for a bed in ICU for the desensitization, when my nurse came in wearing this whole gettup...yellow gown, mask, goggles, and gloves. She changed my medication quickly and then told me that my doctor was going to come in and talk to me about why she had to be dressed like this. I was instantly freaked out. When she left I had a total freak out. My brother, Angie and Martin were in the room with me and we all had a really hard time waiting for that doctor to come back. Since there was a cepacia (a deadly bacteria for CF patients) outbreak last year at our clinic, it's still fresh to us all that it could happen to any one of us. And it's really scary. Plus the reality that for most people that have cepacia, lung transplant does not work. The terror of this infection is profound in our community. So, we waited for a while until they came and told us what was happening. By that time I was totally a wreck as I came to the conclusion that it must be me, the worst case scenario.

Alas, we found out that this had nothing to do with me. There had been a patient on our ward 6 days ago that had H1N1 (aka Swine Flu) and now that patient was back in the ER. Since she was on our floor, there was a bit of a panic. There was a lock down, and we all got TamiFlu for 10 days. The funny part (only funny to the 4 of us in the room) was that when the doctor told us about the H1N1 flu, we were all thrilled! We were so terrified about cepacia. He apologised that the nurse gave me the impression that this was particular to me, knowing that as CF patients (and due to the outbreak that we had) we are very sensitive to such news....it was certainly not the way to deliver that news.

Since I was at the hospital for a specific reason, and I was feeling well, the docs and I decided that I should just pack up and go home. Everyone wanted me out of there too. So, home I went. I was there for less than 24 hours...but I am SO happy to be home. I will continue to do the IV's that I am on now, and when things calm down at the ward, I will go in and get desensitized, since these IV's will have to be switched in time.

Ahhhhh home. Fantastic. Enough drama for ya?

Next post, nursery pictures!!

Yesterday mental break down today hospital room

So I had a total freak out yesterday. Total. Freak. Out. I woke up this morning with no fever, but kinda warm. So I know something is up, I need an IV switch up, but yesterday I thought it was the end. Today, I think I need different meds. Hmm...though I am at the hospital (and I really really hate this place!!) I am having a much better day.

I don't know what the plan is yet. Which drugs to get me on. We are having some discussion right now. No one is listening to me, as per usual. I know the combo that I want to be on, the one that works well, but that's how it works. I just want to get my drugs and go home. That's all.

I am sorry I scared people yesterday. I just let things out, and I knew it would freak everyone out. I have those moments. They are real, but they are not at the same time. I have more faith than I do fear. And by faith I don't mean only in a higher power, I mean in medicine, in science, in timing, in my body, in myself. But sometimes I am too sick and tired, and those negative emotions that are always looming get out and it is such a mess when that happens. I doubt everything in those moments. I think about them later and wonder, where did that come from, it was not me, like the devil sneaking in and making me weak and negative. I know those moments are natural, normal, all that, but I hate them. They do not help the situation at all, in fact they make it all worse. Those thoughts I hate having so much.

So far that's it. I hope this is a short stay. I just want to get those meds quickly and head home on home IV's as I was. I just want the right drugs for me. That will take some work I think.

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!

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.

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....

**********************

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.....

Moving forward

Today was my first clinic visit since I have been back from the hospital. 10 days later, my lung function today was 26%, 0.94L. So the good news is that things are basically the same, and it looks like I am able to be home without getting worse. This is good news.

While I was waiting for the appointment, I got the call that I have been waiting for from TGH regarding my assessment date. I was so happy to hear from them. My appointment for assessment is going to be during the week of May 19th, which is really soon! I am so happy that I am not going to wait for months for that appointment. This means that during that week of the 19th I am going to finish up those tests that we started at SMH. Once those are done, I wait for a month to get listed. Which means....most likely I will be listed on, or within a few days of my 30th birthday!! Oh what a gift that will be.....well may be not what I expected, but I will be very glad to be on that list waiting. Very glad.

Home had been okay. Emotionally up and down. But physically I feel okay. I am getting more and more used to living with oxygen and more and more used to going out with it. I guess with time everything gets better. Easier and better. Overall I think that if my health does not get worse before tx, I will be very lucky. If I stay like this I will be very lucky. But time will tell how long I will be on the list, and how tolerant I will be of that wait. I think to myself every day that this is not forever, this is a finite time, and it will come, and things will finally change for the better. I embrace that thought every day, and try to ignore all the other thoughts looming in my head.

Our little baby is growing inside Beth every day. and on Thursday we have our 3D ultrasound that I am very excited about!! I can't wait to see more of her. I think Thursday will be a great day. I will post pictures and show her off when we get them!!

I don't have much more to add. I am quite tired from today's clinic, that always ends up being quite a long day. My next post will be much more interesting on the baby front. Can't wait for the world to see her as we get to on Thursday.

Wedding Speeches flashback to September 30th 2006.

Since being back from the hospital, I have been through some things in the house, call in Spring cleaning. One afternoon, I came across a copy of our wedding speeches. My mom made sure that the people that spoke in our wedding wrote down their speech afterwards in our wedding book. It's a really nice idea, since I like to read them.

So I have decided to share them with the blog world, and revisit that time in our life. Some were totally off the cuff and the speakers never did write them down for us, but I'm hoping to get those off the video. But I have a few of them here now.

The people that spoke at our wedding are: My dad, Martin's dad, Martin himself, Myles - his best man, and Katharine my maid of honour. All the speeches were awesome. We also had a toast from Bozena a Boguslawski family friend, and Martin's cousin Scott from Ireland. Yes blog world, for those that did not know, I used to be Natalia Boguslawska. Glad you never had to spell that huh?!

Here is the first one in the book:

Katharine Lane, Maid of Honour:

"Good evening. My name is Katharine Lane and I am honoured to stand along side my best friend Natalia, and Martin, the man of her dreams, on their wedding day.

As I prepared for this moment, this opportunity to speak in front of all of you and toast Natalia and Martin, I was immediately filled with anxiety. I fumbled around trying to come up with the most profound and impactful words, but I came up short because all of these things I was trying to articulate weren't even coming close to expressing the girl I know and the friendship we share.

I have never known anyone like Natalia - her strength, her courage, her heart. My wish for Natalia has always been that she find happiness.

When Natalia first met Martin, I knew he was different. Each time I saw her she was positively glowing. I've never seen her happier, and Martin, I have you to thank for that.

Natalia - you are a testimony to the creative intent of God. You are a work of art. When I look at you and Martin together, I see God's masterpiece

Today we celebrate with you your love and commitment to each other. May your lives together be filled with joy, love, and peace. I love you both - here's to the beautiful couple"

-END

(katharine making her speech)

At the end of that speech the whole room was crying. It was so good. Kath did such a good job with it. The reference to art has to do with the fact that Kath and I met in an arts high school. We are both visual artists, and took many classes together. It is certainly something that we continue to share. Anyhow, I love her speech.

Okay, I'll do one more in this post. My dad's (this is a longer one)

"Good afternoon ladies and gentleman. For those who are not sure, I am Chris, Natalia's father. Hanna and I would like to welcome the groom's parent's Doris and Knox and thank them for their generous contribution to this event. We also welcome all the relatives and friends of both families including significant contingents from Ireland, Poland and the United States. We are honoured and happy to have you all here.

Those who flew over the Atlantic ocean, and those who drove from Richmond Hill are here to celebrate the love and marriage of Natalia and Martin.

There are many people though who were not able to attend this happy occasion, but who are with us with their thoughts and best wishes.

I consider myself blessed in many ways. I have a wonderful wife, by the way, we are going to celebrate our 35th wedding anniversary in two days, a beautiful, talented and loving daughter, thoughtful and supportive son, and now there is Martin.

It seems like yesterday when Natalia was born. I vividly remember a baby with lots of curly hair, slightly darker that today. Years went by and here I am giving the father of the bride speech. At this point I should include some embarrassing tales from Natalia's past, but I won't.

It has been 27 years of joy and love, which I hope will continue with all the necessary adjustments. i do need to tell you Natalia, even though you are married now, we will always be there for you. Both of you.

With Natalia you always get what you see. And I am proud to see you so beautiful and happy. I always admired your strong mind, your many talents and wit. Sometimes I thought that I may be a little biased, but I am happy to see I am not the only one who feels this way about you. I would like to congratulate Martin on this perception of Natalia being his perfect bride and for being the luckiest bloke in the whole of Ireland and Canada today.

Martin, we like you very much from the very day when Natalia brought you to our home to a party a year ago. I remember a good-looking guy with a bottle of wine. I remember my thoughts that I like him, and I was never wrong....so far.

Now after over one year from the day we met, I see a guy who loves my daughter, who will do his best to make her happy and whom I am very proud to call my son in law.

Welcome to the family Martin.

I wish you both a long and wonderful marriage and a good life you both deserve. To the health and happiness of our bride and groom. Natalia and Martin.

Love and happiness forever. God Bless and Szczesc boze."

- End

(my dad making his speech)

I thought my dad's speech was great. It made me cry too. I cried through all of those speeches, and was quite thankful that I spoke the night before at the rehearsal dinner. Mine was unplanned, and 30 seconds long, and I cried through that as well. I was a complete basket case, can you imagine how I will be when our little girl is born?

Hope you enjoyed a little of the Ritchie past, soon to be 3 years of marriage. I will do Martin's in another post. Enough gushy stuff for now.

(Martin and I enjoying the speeches)

Church Bells and Rollercoasters!

I woke up just now to music. I thought I had left the TV on in my hospital room, but no, it was the church right outside my window! It's Easter after all. I lay here for a while listening. Organ blaring, and I'm sure if I was in a different mood this 6am wake up call would have been less welcomed, but this morning I liked it. It was really beautiful and uplifting. Now there are people singing.....hmm I have never really heard of this being outside of the church?!!! But I get such a good view, why not?!

So I am uplifted!

As far as my progression and how I am doing in this place.....day 21, with my previous 14...that would make it 35 days....ouch....well we're not talking about getting me out of here. No time soon anyways. My doctor and I had a chat about it, and she has no plan now, just to keep moving forward. The good news about that is that I would not leave right now if they told me too. The thought has terrified me over the past few weeks. You know you're sick when the hospital becomes like home. When you DON'T want to leave. Well no one here is kicking me out, so we're keeping everything as is. Plugging along to may be get me somewhat better and more comfortable. That's our goal she said. That's all we're going to be able to achieve, being hopeful that this is not my new norm. This goal does not change anything for tx. It just means being more comfortable and safe waiting.

My Easter weekend was full of ups and downs. I went home on Friday to do a few things, ended up taking a bath (which was like heaven!!!) and then passed out on my bed and slept. I have never slept like that in my life. Just passed right out. I cranked my oxygen (to a comfortable and safe level) and just slept. In my own bed. It was so missed, I cannot tell you. The things that we take for granted every day. Our beds. A bath or shower. I miss those things and keep reminding myself not to ever take them for granted again. Never.

Oh, and before Friday, on Thursday night, my mom and I took a walk to a local restaurant for dinner. They let me out between IV cycles and we walked the 500 m or so to get some food. Even with oxygen I had the worst walk. Miserable. Could not breathe, and was all foggy and well, just miserable, and it was a short walk! It was not even worth driving to since walking to the car and then from the car to the restaurant might have been at least the same distance! But I was so miserable! It just reminded me of the shape I was in. At the restaurant I had completely lost my appetite and could not eat a thing. I tried but I was sick and tired and just wanted to go back to bed. What a life huh?

Now came yesterday, Saturday. I did not want to go home, since I saw no point of going all that way so that I could sleep. Too much energy wasted. So my mom and I went to an art store (so that I could get a few things, I'll write about that another time) and Starbucks to enjoy some out-time. We got those things done without a hitch, and it was only about halfway through the day that I realized how much better I was feeling. Walking was easy (still on oxygen but nothing like Thursday) and I even sat at Starbucks without my nasal prongs and still felt good. I was amazed. I have not felt like that in ages. I mean a year or year and a half perhaps. What?!?! Granted, I realize this is ON oxygen (I used to be off it) but still it was like night and day to any day I have had for a long long time.

When I got back to the room, I checked my SAT's, and as I was still standing I was at 98%?! HUH?! What? For the past month or so, I have been SATing about 93% on oxygen. This time on the same amount, and after walking these were the numbers? I was baffled. How fast do things turn. It's remarkable. I am excited to see how the next days, and weeks in here go. As we keep being aggressive with the drugs and the therapy. Something has obviously turned.

Now I want everyone to understand that this does not mean anything for transplant. Of course if all of a sudden I were to get off oxygen all together, and my lung function would jump at least 10%, well then we'd have something to think about. Right now all this means is that I might get myself off IV's eventually and actually get to go home. That's all I want right now. Of course waiting for new lungs at home, without IV and horrible bouts of infection will be nice, but it's a lot to ask for I know. Small victories I say. This is a victory.

I think the organ and singing have finally stopped. Back to hearing the roar of downtown traffic. Eww.

So that's that. Ups and downs. Ups and downs. I don't know about you but I am getting nauseous riding this rollercoaster!!

Blah blah blah....

That is how I feel....blah...for so many reasons. The antibiotics that I have been on seem to not be working as they should so they are switching them up. Since I have had allergies to one of these medications before, they are desensitizing me to them. This means that over an eight hour period they administer small doses of the drugs, and make sure that there is no reaction. This gets your body used to the drug, and they are then able to administer the full dose from then on at the ward (6 Bond).

Desensitization is done on a separate floor, at the step-up ICU unit, in case you have a reaction. It is an open unit, so I am in a large room with 3 other patients. Since it is step-up, these are critical patients, so mostly very elderly patients, screaming in pain all day. Poor people. I tend to think that if these people saw themselves in this position (if they were actually aware and alert) they would not want to be in this state at this age, who would? It's hard to listen to them all day. It's also hard to listen to how doctors and nurses treat them also. Karma, that's all I have to say!

For some extra fun, today, they were doing an xray on one of these elderly patients, in the room. While the xray was being performed, the staff left the room as to not be exposed to the radiation. The patients (including me) were all left in the room. I asked them why they were leaving the room and I was not, and they said that they did not want to be exposed to the radiation. Since the patients could not walk, we were to be exposed to the radiation (I stress again that these other patients are completely sedated or close to it). I told them I could walk (I can walk just fine thank you) and since they didn't want to take the time to unhook the few monitoring tools from me, they told me to stay in the room, that there was little risk. I told them that if the staff was leaving the room, I would be too, little risk huh? then why leave? I unhooked myself (it took me less than 30 seconds to do so) and left the room. I found the situation ridiculous! It then took me another 15 seconds to hook myself back up. It's hard to have respect for these people, really. As a patient you get treated like a second class citizen. I always fight for my rights and seem to really not handle well when there is no consideration at all for the sick. It boils my blood.

As CF patients (and any other patient with a chronic condition) we know so much about our illness that we should really be listened to when it comes to our care. It's such a fundamental part of medicine I think. Call it bedside manner, call it just being smart, but why does it seem that the last person that a doctor wants to work with is the patient? I have dealt with this for so long, that I am at a loss for words as to how terrible things can be in here. Recently a friend of mine told me that it seems that we have to be the most focused and sharp about our care when we are the most sick. And that's so true. When I need help, and need for someone else to take over for a little bit with my CF care, I always have to make sure that my meds are correct, and that things are not missed. The funny part of that, is that at home I miss less treatments and get more sleep (in face I never miss anything), than I do when I am at the hospital. A part of me cannot wait until I am at Toronto General Hospital, the worlds leading transplant center (where the first double lung transplant was done, and where they continue to excel on the world stage) The world's first successful lung transplant was performed in Canada in 1983, followed by the first bilateral (or double-lung) transplant in 1986. Canada's lung transplant experience is highly regarded internationally, and the country's lung transplantation rate is 5.3 per million population (PMP), compared to 4.7 PMP in the United States and 2.9 PMP in France. Hey, that's something to be proud of!!

As for an update, instead of just a rant on how much I hate this place....I am stable, but just when I was starting to feel better, I got worse. Up and down. Hence the new meds. So I am having the transplant meeting tomorrow. It looks like it's heading that way. I am getting more accustomed to the reality of that, and the more tired I get of being here and of not feeling better, the better a transplant seems. So tomorrow morning I will get the package to read and get introduced to it all. Then we will book an assessment date. Bring it on I say.
Meanwhile Martin and I decided on a name for our little baby girl. It's 100% certain now, and we call her by her beautiful name when we speak about her. It's a great name. Different, but not strange. Pretty but not too girly or childish. It will suit her as a girl, and will be perfect as she grows up. I can't wait to meet our little bunny.

Thanks everyone for your thoughts and prayers. I can feel them!! I really can!!