What do you say?

It has been a long day. I will most likely publish this post tomorrow, as I will not get it done today. Since today, has been one of the craziest days of my life.

There is a lot I want to say here, but I will likely spread this over a few posts, since I have a lot to think over and say, mostly in response to some of the feedback that we have received over the course of the day.

So, The Toronto Star ran a story about me. The author Barbara Turnbull, someone that I admire, and someone that I think did a great job! What I really liked about it, is the way that it spoke and used my blog. I did not expect the story to have that angle, but I really liked it. My blog is a place that I now use to express so much of what is going on in my life, and though some people may not understand the idea of being so public, for a person with a chronic illness, the comfort of such support is the answer. Illness, especially chronic illness is incredibly lonely.

For those of you who only read the online version, part of the magnitude was lost for you. So here are my terrible blackberry, hospital bed shots of the paper. Just so you get an idea of how big this was. Something we had NO idea about. I thought it was going to be small, certainly not what it became. The idea that anyone would be this interested in me, in my story, is something that still makes me shake my head.

(Above: The front page)

(Above: The front page of inside section)

(Above: Last page, they used my favourite picture!!)

So, for those of you that didn't understand why we were shocked, that's why. Having not expected this, how can this type of coverage not be shocking?! Here is a bit of how the morning unfolded.

I woke up at 6am after having a hard night of no sleep. Yet again. Steroids being the culprit. The plan was to wake up, eat something, do my treatments, and go back to bed hoping to get some sleep in the morning. When I woke up, I already had 10 emails waiting for me on my blackberry. I knew the story was going to run today, but really thought nothing of it. Was not sure if anyone would notice it. I have actually been totally out of the loop as to which pictures were to be submitted, if any, so i really had no idea. I have been too tired to deal with any of it after the interview with both Barb and CBC. I was shocked that some friends of mine had seen the article, I thought this was great. I was told that the pictures of Scarlett were great, I was thrilled with that (any compliments about my baby I love to hear!!) and knew then that they had used some of Jenn's pictures. Which I thought was so cool, since her baby pics are amazing!

I ate breakfast, and got in touch with John and Angie that had already read the article online. They said it was great. I was really happy, but wanted to see it in hard copy first. John then said he would go and get a copy for me and check it out. He was already down town at work. I was excited. But still none of us had any idea how big it was. John then messaged me, and said, "It's on the front page....it's amazing!!" He was really excited. He told me not to get anyone else to get the paper for me, he wanted to be the one to bring it to me. I was really excited now! He kept saying on messenger....as he walked to the hospital....It's crazy! It's amazing sis!! When he reached my room, he unfolded the paper, and held it up for me to see. Then he opened it up, and showed me the two other pages. I was in shock. There was my family, in colour. There were my words, those words that I had written to Scarlett, and to my blogger buddies, right there in print. I was completely overwhelmed, and started to cry. Like really really cry. I knew then what it meant to me, to have people hear my story. Hear what I've been through, what I was going through. I felt like at that moment I did not need to explain to people about CF, about my limitations, about my fears, about my life. It was there. And perhaps, not everyone needs to be heard this way. But I did. I also wanted people to hear about Scarlett, about this baby, my baby that had changed my life. About my husband that was the love of my life. About an illness that is so terrible, and so hard to live with. Somehow this set me free. So I cried.

John cried too. "It's really good sis. It is. It's hard, but it's good." It was our own little miracle that morning. My brother and I. After all, he has been living with this as long as I have, in his own way. As the big brother of someone that he wanted always to protect and save, but just could not. I think he felt set free too. Our tears were not sad tears, or happy tears, they were something totally different. We really were in amazement of the efforts of Barbara, and The Star, to tell my story the best way they could. I think it was really well done.

Soon the day was just about people popping by on the ward. Everyone was so excited! They were so happy. They loved the pictures of Scarlett and me, and Martin. They cried with me. My nurse was so proud, you could tell. Her and I have become close (her being exactly my age) and I can tell she wants me to get these lungs so badly! Like so many people.

The outpouring of support has been steady. Email after email. Letter after letter. How can I not be uplifted. It feels like Toronto is out there cheering me on. How powerful is that you ask? Well, it's a sense that with all this energy, all this strength, we will make something amazing happen. I have no doubt.

Of course when you are this public, there are people that see things very differently. Are even aggressive. Angry. About my being public, about seeking the lime light (which seems silly for me to even write), about having a child 'knowing what I know'. And there have been people that have let me know exactly how they feel. I respect that being public means that people have a right to think and say what they choose to. The anger is sad, that people are that angry in general. But I understand where most people derive their ideas from, and have always been the one that has been judged about the choices that I made. Since being chronically ill always gave people the right to judge me. This has been a common thread in my life. So, what I will do is try to address some of the more common emails in later posts. There have not been many, I would say less than 1%. The others have been loving, and powerful messages of hope and encouragement. But these messages address important questions, that I have answers for, and that may be someone out there would like to hear. I know that I had many people defending me on the Star blog, and I thank everyone for doing that, but this is not about getting angry or defensive. I truly understand where most people are coming from, and think why not address this without anger, without hostility, but conversation.

The fact is, this got people talking. About organ donation, and about CF. This is what we wanted. I am certain that someone signed their organ card today as a result. I am certain of that. I am also certain that many people went home and gave their kids an extra long hug and kiss today. Reminding themselves of how precious life is, and how quickly it can change for any one of us.

Toronto, thank you for all your support today! It has been incredible. Another miracle.

The Toronto Star

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

A link for my out of town followers and family:

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

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

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.

more of the good stuff...

Much has happened during the last few days, and all have been good. Really good. I have been tired as a result, but the kind of tired I can handle. The kind of tired that a nap with the Bi-pap can help and some rest. My lungs have been doing much better, as the combination of IV antibiotics as well as steroids have really been doing their job. Phew. I know, I know, I have to stop doing that. I am always amazed at the ability for my body to bounce back and somehow do 'better'. I certainly feel stronger and am glad for various reasons, one being I know that undergoing such major surgery when I am stronger is better. Simple as that. I also am just so thankful for the break. I just really needed this break. For the battles ahead.

So, the good stuff. The CBC interview went well. I was a little nervous, and stumbled over my words more than I would if the camera was not there, but hey, I'm certainly not made to be on TV! But the staff were awesome, and made me feel really great about the whole process. Nick and Ed, you guys were really amazing! I look forward to the story unfolding and for you to help us document such an incredible time in my life. Generally throughout the interview I kept my cool. I only cried once when talking about being away from Scarlett. That's the only sore spot I have. Everything else such as life expectancy, transplant, the surgery, suffering, illness....that's stuff I can handle. I've lived it so long, I can talk about it. But missing Scarlett, having to leave her behind at home, well anyone can understand that being an emotional thing to talk about. But I was not too bad. It wasn't ugly crying though, nothing like that.

So CBC guys, I can't wait to work with you again as my story unfolds. I feel super lucky to have this opportunity!

I also had the huge, HUGE, super HUGE privilege to meet and get interviewed by Barbara Turnbull of the Toronto Star. She's writing an article about me, that I will be sure to let everyone know about once it's out. We think it's running this weekend, on Saturday. But I will post a link for those who don't get the Star, or read the Star, or of course for those who don't live in the area. Barb is a special lady. She's a gifted reporter, but for those that live in the city, we know the amazing story that is her life. To make a long story short, in 1983 Barb, as an 18 year old teen working her part time job at the local convenience store, was shot in the back during a robbery. Within minutes her life had changed, and she had become a quadriplegic, paralyzed from the neck down. The story changed how the city viewed violence, and the innocence of the city. I was very young when it happened, but when you ask people over the age of 35, they remember the shooting well. It was a huge deal in Toronto. Barb was amazing to talk to. We connected right off the bat. Her working dog Bella was a special treat, sitting with me on the hospital bed as Barb conducted the interview. Her outlook on life, what she's been able to achieve, and the way that she dealt with and continues to deal with her disability is amazing to me. A really strong woman that will tell my story well, I have faith in that. Barb gave me her book to read, that told her story, and I have been so captivated by it. What an amazing life, what an amazing way to look at life. I cannot wait to read the article that she writes. I would encourage anyone to pick up her book "Looking in the Mirror", it is incredibly powerful and encouraging.

So I feel like I have been given all these gifts. All these encouraging signs. With my feeling stronger I can handle the wait better. It's not so scary, not so now or never. The doctors and the team are confident it will be any day now. I realize that this confidence comes strictly from good will, no concrete ability to know when it will actually come, but it gives me hope, makes me confident that it really will be any day now. And if it is a bit of a wait still, well, as long as I can maintain feeling this stable, I can take it.

Lastly, what I wanted to post before I rest, today I had a great visit with Scarlett. She was amazing. She came in and my doctor got to meet her, which was great, as well as some of the nurses. They all loved her, but common, she's easily lovable!! So plump and delicious!! She came in wearing some of her winter clothes. Amazingly cute. My mom got this video of her and I 'talking' and I think it's the best video from the facebook series yet. I hope I can figure out how to post it, because I know it will make everyone out there smile!

Lastly, I want to continue to thank everyone for your emails of support. Martin gets many too, and he sends them to me, and each and every one makes me cry. Many of you say that you feel silly reaching out to Martin or me, since you are either strangers or have not been in touch for many many years (sometimes decades) but I want to make sure that no one feels silly. I certainly only feel comforted and loved by the support. I find that when times are hard, knowing that there are people out there thinking of you and your family is sometimes the push that you need to get through it all. So, once again, thank you everyone. My old friends, new friends, Martin's old friends, friends of friends, family friends, strangers, we love you guys. Keep them coming. They are helping I assure you!!

Good things keep happening

Today was another great day. I have been put on steroids to help these tight chest episodes that I had last week, and though I do not love being on steroids, I should get used to the idea going into transplant. So I don't mind. The good news, I am eating. Food has taste again!! It's amazing!! I have not eaten normally for months and months, and today I ate cheese bread for lunch and it tasted so good!! (you can tell it's the steroids when I am excited about cheese bread....) The point is, when you eat, you gain weight, and I would love to gain a bit before I go in to the OR. The faster the recovery will be on the other end.

The other great, in fact AMAZING news is that we got the CBC story. I hope I am allowed to talk about it, oh well, I'm talking about it. I am so excited. It will be 3 segments, 3 nights, about 4 minutes each, which in prime time is a big chunk of TV they say, about my story and that of my family! It's beyond what we could ever ask for !! And the CBC? We love the CBC!! They will interview me here Thursday for 3 hours. And then go to my house and interview my mom and Scarlett (who will have lots to say!! haha) and Martin, John and my dad. The show is about people that overcome great obstacles in life. They will talk about my eagerness to get past this, continue my life as a mom and wife, and my goals of wanting to play tennis and seriously get into running after I get my new lungs. The cool part is that they will also be there for when I go into the OR, and later post transplant as I am 'living my dream'.

As well as the CBC, a Toronto newspaper will be running a story about organ donation and my situation sometime soon. I am being interviewed for that tomorrow. Very excited about that also! I will be sure to post a link to it here for many of your guys out there not from Toronto. It's all so cool, the word is getting out and will do so much, I have no doubt, for organ donation.

The producer and I spoke tonight on the phone, a really nice guy, and he told me how much my blog moved him. I am so amazed when people say that. I love it. It has given me, this blog, something to turn to when I seemed to have nothing else. I never ever thought that I would enjoy writing so much, I never really wrote before I started this blog. But it has this life of it's own now, and I think it's incredible. The support I get. The amazing people that have helped me find my way through all this. It has really been incredible. The praise is something that I don't always understand, but I love. It makes me feel useful, when at times I can't do so much physically. I feel like I touch people.

Again, today I am reminded, how quickly things change. I spoke about this in my Happiness 101 post, this just proves my point. From a week ago, from a few nights ago, things change. Today was another good day. What made it so good, is that I did not waste a second worrying about if tomorrow will be as good, since I know better, it might not. I just enjoyed it. I ate, and it was SO good. I enjoyed my daughter, and that was way better than eating! She was incredible to hold and kiss. I saw my mom, my brother, and my husband all in one day. And I spoke to my dad on the phone, and texted Angie, so I got everyone. I thought about the fact that in less than a month we will have another baby in the family. I cannot wait to meet her, my niece! I had a great nap, I kissed my husband, I got my favourite nurse tonight, her and I had GOOD laughs together, I used my day well. Not a minute today, however, did I worry.

Power of Prayer

I have witnessed something incredible. The reason I share this on this blog, by this method, is for one reason alone, so that I can document it and read it again and again for my own doubt. It is in no way to challenge the belief and faith of anyone else, to educate anyone else, or disprove the experience of anyone else. That is very important for me, that people out there, reading this, understand that. I am someone that believes in a personal god. Not a one good god, one bad god, but your god. This is the reason why I rarely mention religion or god in this blog, I don't want anyone to feel isolated or drawn due to religion. I have said this before, I love people that have faith, no matter what that faith is. I find Muslims that practice their religion with love as inspirational as Hindus that do. Saying that, there is nothing that I hate more than people that truly think that their god is the right god.

(now back to my incredible story)

Since that night that I went to the ER things have been very hard for me. I think I have expressed that in my posts. I have been struggling so much. That was almost 2 weeks ago now. During this time my pain has been more than any pain I have ever felt before, and my inability to breathe has been like nothing I have ever experienced. These 2 weeks have worn me down quite thin. Literally and figuratively. At nearly 5'7, I am now weighing in at 49.1 kg (108 lbs) and that's about 20 lbs lower than I am usually, and I am usually very thin. Emotionally I have been to the darkest place inside my soul, and though I have never and will never give up, the relentlessness of this illness is more than I ever thought I would have to deal with. I just never thought it would be this bad.

Last night, I had reached some sort of breaking point. In an hour of weakness, I started to cry and could not stop. It just all poured out of me. I cried and cried. In the middle of this release I started to pray. A deep prayer. A conversation between me and my god. A nameless, faceless god and I. At one point, on my knees, I asked for relief. I said I could not take it any more. I could not ask for these lungs to come, that was not something I am ever going to ask for, I just prayed for strength, for less pain, for the ability to handle more (if more was to come) for relief both physical and emotional, and for strength for those around me that had to endure watching me be so sick. But as this lasted a while, I think I just prayed for relief. Over and over again. I could not take it any more. It was too much. Eventually I got too tired, and fell asleep. It was like it all left me. But I had asked over and over again for help.

I woke up today (7am), and the day started off the same. Woke up, realized that I was at St.Mike's, that the Bi-pap was on my face. I seem to not get used to this each morning. I took it off and gasped for breath. It's the worst thing to have to take off your face, since when you take it off, you feel really how poorly your lungs actually work. It's suffocating. I did treatments, the nurses and other medical staff came in and out. More treatments, pills, puffers, IV's, tried to eat something, and a few more mundane things like that. After about 2-3 hours I was tired again and put my Bi-pap back on and fell asleep.

When I woke up again, my brother was already there. He works in my room all day, as his job is able to accommodate that. We basically hang out all day. Mostly I sleep and he's on his laptop. When I woke up, my lungs were clear and I was breathing well. Not well, like WOO HOO no more transplant kinda way, no, but I was not gasping like I have been for weeks now. Not in distress, that terror that has not been getting better over the last little while. I did some physio, I felt so much better. Light, I felt light. My brother noticed it. Everyone noticed it. Then we got a call from the cbc about a possible story that they might be doing on me and organ transplantation. Something a friend of ours has been trying to set up, with no avail until now. Things were just so good. The day was so good. I looked in the mirror, and I had some colour. My eyes were brighter. The best part of today was that I went for a walk with the RT up and down the hall. I used a face mask, not nose prongs, so obviously I needed a lot more oxygen, but that was something I was not able to think of doing a few days ago. A few days ago I almost passed out going to the bathroom 3 feet away from my bed. But I walked all the way to clinic and back from the ward with Brent's help. And I was ok. My legs were like jello, and I walked slowly, but what a difference.

So I enjoyed today. Every minute of it. Never take a good day for granted I said to myself, so here's my test. And I did not take it for granted. Every time I needed an extra smile I looked at the pictures of Scarlett that Jenn took a few days ago for Scarlett's 3 month, and I just gush with love. I love that baby so much, and cannot wait for my lungs to come, and for me to hold her once again.

Words have not put into any sort of perspective, this experience that I have had. It seems random and silly written down even. But I know it is not. I know, that when it all just got too hard, when I had nothing left in me to fight, (I had gone as far as I could but i knew that was it) my god gave me something to hold onto. Some relief, and a glimpse at how amazing life really is. Because it is. I look at the pictures of Scarlett and I just look at what miracle that kid is, and I can't think any other way. I don't think anyone can. The power of prayer is amazing. I felt it last night, and I believe in it. As is the god that has blessed me with the family and friends that I have, who have led me this far, and will continue to do so until that call comes. I believe it will come when it is due.

For a Scarlett smile, here is the facebook album of our little 3 month old! Enjoy. I look at them all the time for a pick me up.
http://www.facebook.com/album.php?aid=129818&id=541641274&l=b55a284651

Love you Angie and John

October 17th 2009 was a big day. Scarlett turned 3 months old. Happy little bundle of giggles and coos. She's just what babies should be. She's happiness all rolled into joy, with a little bit of perfection.

On the same day, my brother got married. He married the best lady I know. Someone that I considered my sister-in-law long before there was a ring or marriage. The ceremony was private, but I have the bouquet in my hospital room. John and Angie stopped by after to say hi, all dressed up, to say hi. I was very emotional. They're the coolest people I know. Do things their own way. Plus, with all that's going on with me, Angie is too much of a lady to make anything about her these days. Well, when I'm well, one day, I will make sure to get her back....I am throwing that girl a party for something, SOMETHING one day....mark my words!

Anyhow, congratulations John. You are the best brother and friend any girl could ask for. But I don't have to tell you that. We know what we mean to each other. Angie, I could not imagine a better woman to make a man of my brother...haha! What I meant is I could not imagine a better woman, period! I can't wait for us to get to know each other when I am well. I have always been sick during the that you have been around, and your support (without even knowing me) had been incredible. Soon, your little one will arrive, and my niece will have a great mom and dad. This will be such a special moment. I cannot wait. I also cannot wait for the girls to grow up together, as they will. How lucky are we to have that?!

The toast that I would make at your wedding if there was a wedding-wedding, and if I was not on large amounts of Percasettes and Avitans:

John and Angie, I love you both. Today as you became man and wife

you reminded me about how wonderful marriage can be (I glance over

at Martin who has already had too many...love you Marty) and how

excited I am about the years that we will have ahead watching our

girls grow up. Angie, welcome to the family. I love you both so much.

(I would have a hard time getting through this without balling)

For those of you interested in the brother of a CFer angle, John has just started his own blog. I love it. I am sure it will be about lots of things, and knowing John it will offend many many people. I'm kidding. But John does tend to have some controversial points of view. I am sure he will entertain.

http://www.jbandangie.blogspot.com/

Panic Attacks.

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

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

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

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


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


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

For your viewing pleasure, my baby at 3 months.

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

Bi-Pap and God

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

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

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

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.