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.