Writing for gratitude

My last post was two months ago. I certainly was not sure if I would ever write again at that time, and I am still not sure what I am going to do next...or if there is still anyone out there reading. But that's okay. I am writing today with gratitude in my heart, and a completely new life that I am living.

Lots has happened since March. There was a turn around. There was a time not too long ago that even though I was feeling better and better physically, I was so changed emotionally that I did not know who I was. Transplant somehow took something away from me. I could not figure out why this was happening. I was breathing, I was alive, I was with my family, but I was lost. I guess I wanted so much more. Dreamt of being normal and capable, and as much as I wanted that, it was not happening. Not right away anyhow, and I wanted it right away.

During the last few months, I feel like I have been reborn. That's the best way to describe it. My past life living with CF lungs is just a faint memory. Did I really live my life coughing, wheezing, gasping, medicating? How did I do it for 30 years? I guess I did. But the fact is, I don't miss a bit of it. Not anything. The life I have now is better than a dream. Better than I could have imagined. The fact is, I have never been healthy, so how could I have ever imagined what it would feel like. Well, now I know.

It feels like each day is a new one. If I have a tiring day, I sleep, I eat, and I have energy for what is to come tomorrow. That's like most people I'm guessing. Well my CF body never seemed rested enough. I never ate enough, I never slept enough, I never coughed enough to clear my lungs. It was never enough. It was always a battle. Always a catch up game. These days my days look something like this:

6:30 - 7am Scarlett wakes up, so I get out of bed. (I take insulin - nothing else! My Cf lung 1 hour routine is now 30 seconds)
7-8am Martin and I eat breakfast with Scarlett (we watch daddy leave for work)
8-10am We dress, shower, have play time, or a walk, or grocery shopping, or if it's a Monday we clean the house (I take my pills at 9am)
10-noon Scarlett naps. I make sure laundry is done, bills paid, lunch made
noon - 1pm We eat lunch.
1-3pm We usually are outside again. Long walks, shopping on yonge, coffee with a friend, a play date,today was an afternoon in her blow up pool in the backyard (great fun!!)(2pm pills)
3-5pm (sometimes 230 -4pm, Scarlett naps again) During this time I make dinner. Since I'm eating nearly no carb right now, I always have to prepare the meat, veggies, whatever is on the menu. We are eating well these days. I am so happy to be able to prepare fresh food for my family. I was so sick for so long that we had to sacrifice very healthy eating. These days Martin, myself, and little Scarlett are eating all veggies and fruits and lean meat. (Scarlett of course is allowed carbs as a baby should!!)
5-6:30pm We eat dinner. Martin is home anywhere during that time. We all eat together, and talk about the day, and watch as Scarlett makes the biggest mess possible as she learns to eat all sorts of things. We love it!!
7pm I go do yoga. Martin bathes and puts Scarlett down. She's usually so tired after our busy day, that sleeping comes quickly and happily.
8:30pm I return home, and Marty and I have some wine, sit on the porch, or watch a movie. (9pm pills)
10pm We are sound asleep. Scarlett is a great sleeper. Sometimes it scares me and I look in on her while she's sleeping. She often wakes up only once, sometimes I only hear from her at 7am, like clock work. There have been harder nights, when she was getting used to some changes. But that came and went. I don't blame her for having a hard time, with all that's happened. Actually for a baby that has been through everything that she has, she is the happiest, most well adjusted baby I know.

For those of you that have followed closely during the past year or two, you'll remember that my mom was living with us for about a year. A huge sacrifice on her part. Well, my mom has moved out. Sooner than I ever thought she would. I just started to do so much and feel so good, that we were all able to move on with our lives. To me, the fact that I take care of a 10 month old all by myself all day, and the house, and the garden, and I make the meals....(well you get the idea) is an absolute miracle. Never in my wildest dreams did I ever think I would be able to. But the truth is I do it with pleasure, with a smile on my face, and more gratitude every day.

The one constant these days, is that I am more thankful than ever. At least once a day I will do something that makes me teary eyed. I will be in the grocery store and people will be smiling at Scarlett and I and telling me that my daughter is beautiful and I think, yup that's my daughter. To them I am just a regular mom. How cool is that? The other week I decided to run up a hill with the pram. I don't really know why, may be because I could. And I did. I felt like I was flying. By the time I made it up the hill I was in tears. A month ago I did my first power yoga class without once stopping or resting. It was amazing. My body and mind felt like one. Last week I decided to take Scarlett on a day trip to my in laws cottage. I packed us up, and spent the day at the beach. Something I never thought I would do by myself. Scarlett and I had the best time. At one point I walked past the cottage where I have spent some time during the past few years. Often not being able to go to the beach since I was so tired and sick. Often watching families walk as I stayed on the porch or inside. On this day, I wish I could go back in time and hug that girl on the porch. Tell her not to worry, good things are coming your way. Just hold on, be strong. That girl that I was, that I no longer am. I wish she could see me now.

I have also had quite powerful moments when I think about the woman that lost her life 6 months ago. A woman that never imagined how her life would end, and I am sure never imagined that she would save a life as she lost hers. Thought I know she was not aware of her fate, and thus not aware of mine, I like to think that her spirit knows. I often look up to the sky and thank her quietly. Her family might think they understand what they did for me, but I don't think it's possible to understand. I wish I was articulate enough to express to them (and I have tried) what my life is now. To thank them in a way that would mean something - to find those words. I am not back to the person that I was. I am a new person. A person that has the luxury of health, and happiness, and the privilege of insight, as I know how it feels not to have any of those things. It makes me so sad to think that we are not all organ donors. That we don't all think about the lives that we could change. The responsibility that comes with living in a world filled with our brothers and sisters. I urge you all to make that choice. Become a organ donor and become a hero. What a legacy to leave. I think about my donor and her family all the time. Mostly in awe of their ability to think of others when their world was crashing down. It seems like an obvious choice, a simple choice, but the donor numbers in Canada will tell you what they did for me was extraordinary.

Saying thank you and goodbye

After lots of thought and conversation about the topic, I have decided that it's time for me to shut down my blog. I will print everything that I have written, and I will bind it, so that I have it for the future, but I will shut it down.

When I started this blog, it was a huge source of comfort and relief for me. I never expected it to become as large as it did. For so many people to connect to it. That was a lovely surprise. I started to write when Martin and I found out that we were expecting. We had just gone through Invetro, and with the help of our amazing friend Beth, we were awaiting our 9 month journey to meet our daughter Scarlett. During that time I never imagined the year that 2009 would be. If someone told me what the year had in store for us, I would not have believed them. It all unfolded so quickly. So suddenly. Looking back, it has all been like a bad dream. A dream that we are all just waking up from now.

During the time that I was waiting for my lungs to come, my blog was my support, my comfort, and my connection to something I was physically unable to connect to any more. I was so isolated socially, so emotionally robbed, and physically broken, that the blog, and the Internet allowed me to make connections with people that I missed so much. That I needed so desperately. During the most desperate times, my blog allowed me to express what it was like to be so sick, so sad, and so scared. I never expected the support and love that I got from perfect strangers, old friends, new friends, family, and other bloggers. I was hooked the moment I wrote my first post and got my first comment about what I had written. The connection was real, and it moved me.

As much as there has been support there have also been critics. People that have wondered why my family and I would be so public with something as personal as my illness and lung transplant. I want to use this forum now to answer those people. There are many reasons why we went public, and why we continued to be public. The first and most immediate reason was my need for lungs. I was very sick. I was on my death bed. I needed an organ that was not coming. I was a rare blood type, and we came to the conclusion that since there was nothing we could do for me at that time, the only thing we could do was to get awareness out about organ donation, tell my story and may be, just may be, reach that one person that would make the choice for a loved one that had passed away. It was a difficult thing to do, knowing the nature of organ donation and the controversy that is always around it, but it was all we could do. To this day, I would do it all the same way. I believe it worked. It helped me get my lungs, and many other people too. I believe that with my whole heart, and it makes what I have gone through, and what my family had to endure, not in vain. But with purpose.

I also went public with my story, since it brought me comfort. I know for many people it would not, but for me it did. In October when I was at St.Mike's and in so much pain, waiting for my call to come, and the Star ran that beautiful article about Scarlett, Martin, and I, I gained strength from the fact that everyone knew, and that most people wished us well. I say most, since I know it was not all. Some people were outraged that I would have a child knowing how sick I might become. I have never addressed those people. I was always very kind. Today I will say what I have wanted to say for over a year. How dare you judge me? My decisions. My life. I only have the strength to say this now, because I see the child that my daughter is. The perfect person that she is, and the love that she is raised with. She is proof of what family love is. The assumption that a mom and a dad make a perfect family is pure ignorance. We all know many moms and dads that should not be parents. But they had the freedom not to be judged. My illness has always opened the doors for judgement. In fact many people with CF are judged every day for the choices that we make. We are people, we have the freedom to do like all other people, and our children will grow up with a perspective that will make them incredible people. I watch Scarlett grow up. Happy, healthy, and strong. Smart, loving, and caring. She has been raised by my husband while he went through insurmountable stress. She was raised by my mom, who was there when my husband was by my side when I was dying a terrible death. The result is a child that loves unconditionally. Loves her mom, her dad, her babcia, her dziadek, her uncle John, her aunt Angie, her cousin Sophie, her nana, her papa, and on and on. Her connection to her mom, to me, is unwavering. She knows I am her mom, even though I did not carry her, and I was away unable to see her for months. This is love. To those people that doubted that love. That criticized my family and our intentions (and our very difficult and calculated decisions), you people must lack that love, as you would never doubt it if you knew it.

I don't want this last entry to be about negative people. Since out of thousands there were only a few. But I had to write what I felt, I think everyone out there has come to expect that from me. Recently I have had the opportunity to go through some of the comments, and emails, and letters, and I felt like I needed to say what I felt. So there it is.

To everyone else out there, I have felt so much love and support, it's hard to imagine. Toronto was more than supportive. I felt the love through the walls of the hospital, through the darkest days, through the pain, through the set backs, and through all the victories. While I was at TGH I got to know a lovely woman that was a perfect stranger to me (T you know who you are), a woman that waited in the ICU waiting room for days and days while I waited for my lungs, and as I recovered from the operation. She came with cards, with gifts, with love and support. I also knew of a young man that had come to offer a part of his lobe, to act as a living lung donor, to save my life. He wanted to share the life that he was given with me, someone he only knew through the media. To him, even though I do not know who he is, I want to say thank you. The gesture to want to do such a thing is larger than the words I can use to thank you, and certainly larger than my ability to comprehend. But what a testament to how much we as people care for one another. I will never think anything, but that people are, by nature, good people.

Today, March 21, 2010, is the 4th month anniversary of my lug transplant. 4 months ago, a woman named Sandra Foglia was removed from life support by her daughters and was granted her wish to be an organ donor. I don't know a lot about this woman. But I do know that she was also a mother, like me. She gave to her girls, and she gave to me. I'd like to think she knows what she did for me and my family. That somewhere out there her spirit is free and she smiles upon the gift that she gave. Not many people, like Sandra, are organ donors in Canada. This makes Sandra a very special woman in my eyes. A woman that was able to think of a time that she would no longer be of this world, and would so generously pass on what she could in her death. I am trying to be articulate here, but I am failing short, as her gesture is too grand, too real, too close to my heart.

Four months ago I was somewhere else. I don't remember where I was, but I know I was close to my god. I felt his presence. I knew that no matter what, I would be okay. I have not written a lot about the things I remember and the things I don't. The impressions that are ingrained in my mind, the thoughts that run through my head to this day. I have not written much on the subject, since there is too much to write, and truthfully, I tend to weep when I think about it all. So, slowly I am trying to get it all down, so that it is not lost, but it will be quite some time before I am ready to share any of it. That's where my hope of writing a book about it all comes in. The question is, will I ever be brave enough to share the mystery of it all.

Today, my friend and Toronto Star reporter Barbara Turnbull wrote yet another amazing article about my journey, and now the journey of the donor family. I have added the link below as it's a wonderful showcase of what the donor-recipient relationship can be.

http:// http://%20http//www.healthzone.ca/health/newsfeatures/article/782895--finding-hope-in-a-mother-s-death?bn=1

So I thought it fitting that this be my last post, as I feel a sense of closure to it all. We have come full circle that's for sure.

With love and eternal gratitude.

Natalia.

Strength

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

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

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

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

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

Bronch and Biopsy day..and a whole bunch of good news

This week is my 3 month assessment. Monday I had clinic, PFT's, x-ray, CT Scan, and fasting blood work. Tuesday was the MRI of my brain. (Shannon I found out after I saw you Monday that it's not a standard 3 month test, so not to worry. I had it due to the fact that I was on the Novalung pre tx) Today I had my bronch and biopsy of my lungs. As we all remember, last time I had the bronch it did not go well. I had a massive infection and ended up back at TGH for a week on IV's, and then 2 more weeks on IV's at home.

I am proud to say that today it went really well. My lungs were clear, so the procedure was quick and easy. My doctor found no infection, and took a sample to check for rejection. So fingers crossed that goes well too. But so far I am thrilled that I had no reaction - and that the doctors are so happy with everything.

At clinic on Monday I was removed from a medication, which makes me very happy. If the biopsy results go well, I will have a whole bunch of other medications stopped also. I am VERY excited about that. Very exciting stuff.

On another exciting note, it seems like my leg pain is gone. Just like that. I did not take the hydromorphome this morning, and as I suspected, no pain. So I will continue to see if this goes well. I am still on the long acting oxycodone, but am being weaned off slowly. I am hoping to be off all pain killers within the next few weeks. Again, great news. By the end of March I may be off all my inhalations and half the medications, as well as all pain meds. A dream come true if this happens.

This week is also my last week of physio at TGH. This is so great for many reasons. I am ready to start attending the club gym, and I signed up for a few Yoga classes starting mid-March. I am also quite tired of being at TGH 3 or 4 times a week. It's too much. Now I will be attending clinic once every 6 weeks, and that in itself is a miracle. I will be leading a pretty normal life. Whatever will I do with all that free time...LOL!!

On a completely separate note......I have some great Scarlett news....

Today, my little Scarlett had her first poop on her potty!!!! We sat her down, and within minutes she did that magical potty business. I know this is lovely to talk about, but I had to share!!

And of course, a blackberry pic that we had to snap during the big moment!!

Here's to a good day, full of great news.

A weekend away

What a perfect weekend Martin and I just had. After the long and vacation-less 2009, this was our first get a way together. What made it even better was that we were able to enjoy more of our trip since I was able to use my brand new lungs. How great is that?

It was Martin's 36th birthday on Friday, the 26th. So I booked a one night spa get-a-way at the Prince of Whales hotel on Niagara on the Lake, Ontario. Just a little less than 2 hours from Toronto, for those that are not familiar with the area, this little town in just magical. Think Victorian architecture, wineries galore, art galleries, boutique hotels, and of course the Shaw festival. What made it all that much more magical was the snow storm that flew in the night we were there, that made it like a winter wonderland. Just perfect.

We walked through the streets, with the snow falling in our faces, and we truly appreciated the gift that we have been given on November 21, 2009. It was not only the gift of my life. It was the gift of freedom, of love, of hope. It was the gift given to Martin in the hopes of a long life with the spouse he chose to love. It was the gift to Scarlett of unconditional love from her mom, and to witness that love transcend the most trying times imaginable. So much was given to us a little over three months ago, and it seems like we are yet to discover how much was really given, as we discover more and more each day, that hope in itself is a gift.

Things I can't live without as a CF and Tx Patient

There are a few things that as a CF patient, and as a Tx patient I really really believe in. I'm not talking about my medications and treatments, those are a no-brainer. I'm talking about a few things that I have found to be really successful over the years in helping control some of the symptoms and progression of CF, and now of my new lungs. I believe in these things so strongly, that I thought I would share what I have learned in the hopes that other patients can may be find that they work for them too.

So here it is, my list.

1. NeilMed Sinus Rinse: This I did not discover on my own, it was recommended to me by my doctor, that swears that this natural salt rinse will significantly cut down the number of infections a CF patient will get per year. Since most people with CF have sinus issues, and grow the same bacteria in their sinuses that they do in their lungs, it is common for that sinus drip to find its way into the lungs. Basically the CF patient will infect themselves. So what starts as the sniffles, ends up being a full blown pneumonia. Over time, using the NeilMed will not only cut down on the number of infections, but also stop a runny nose, which is a nice bonus. There is nothing worse than a constant runny nose. An irritating affliction most people with CF deal with.

The really great part, is that after transplant, the NeilMed is especially crucial. Since my lungs are new, and clean, keeping them that way is the most important thing. Unfortunately the rest of me is still CF, especially my sinuses, and still have all those old bugs. When I came out of the hospital the first time like many of you remember, after a week at home I had to go back in due to an infection. That infection came from my nose. I infected myself. It was then that I was reminded once again how important it is to use my NeilMed everyday, twice a day. Keep those sinuses clear, infection free, and thus my new lungs infection free too.

I would recommend that EVERY CF and tx/cf patient use this. It's cheap, natural, and easy to use. I love it!! I can breathe well after using it, it gets anything out that needs to come out, and of course keeps it out of my lungs. Which is the most important thing. Recently I have heard from another CF patient that says she has not been sick once in 2 years, and thinks it's all due to her using the NeilMed. She even said that if she gets a head cold, she immediately does an extra dose of her NeilMed, and the cold is gone. And her lungs are clear from any infection that could have resulted.

Below is a pic of what the NeilMed looks like in case some of you want to pick it up. I'm a believer and really think using it consistently can save both CF and tx lungs.

2. Okay, the next one is my own personal discovery that I have been preaching about for YEARS. Metamucil: Yes, the fiber orange drink, Metamucil. When I was in my late teens I suffered from chronic obstruction. Yes, I can say constipation, but for those that have CF, this goes WAY beyond constipation. In many cases CF patients have to drink nasty concoctions such as Go-Lightly, Mineral Oil, take laxatives, or even have their bowels operated on. Scary stuff. Besides the fact that this type of obstruction is terribly painful, it is also terrible for the body. After a few years of dealing with this, and seeing specialists that only seemed to make the problem worse, I discovered Fiber. Yes, simple, natural, yummy fibre. I was visiting family in Chicago one summer, and my aunt told me I should give it a try. I was miserable after not going to the bathroom for days, and was losing weight since I was not eating. It was very painful and well, you get the idea. So I tried it. Thinking this will do nothing for my CF obstruction. But it was literally like a miracle. That day all my obstruction issues ended. If I ever slip up and stop using it, all the issues come back - and like most people with CF - I would rather not experience such slip ups. The great part is that it's tasty and easy to drink. You can put it in water, or orange juice. Drink a cup in the morning. That's all. If you are a CF patient, and you have these issues, slight or severe, give this a try. It will do no harm.

3. Finger Pulse Oximeter: Below is the one that I use. It cost be less than $200cdn. It's awesome. I have had it for years. It was more handy when I was just pre-tx and needed to make sure that I was not desaturated while on oxygen. Or that I was not giving myself too much oxygen thus risking the retention of Co2. But I find I check once in a while post-tx also. It's a quick and easy way to make sure that my oxygen is okay. It also has a pulse reading, which I like to use when I work out. To keep me on target. I would recommend that everyone have one, especially if your CF is at the point where you require oxygen.

I know that doctors often say not to focus on the numbers. I never really got that mentality. If you think about it, when the numbers are good not focusing on them is fine. But when the number is off, focusing on it will probably be quite valuable in diagnosing a problem and getting the proper treatment. For some reason it bothers medical staff when patients have these resources. But I believe, as long as you understand what the numbers mean, and how to act upon seeing a discrepancy, they can help a chronically ill person manage their own illness while allowing for independence, a sense of control, and a proactive lifestyle. Plus, I believe having oxygen at home, and not having an oximeter to check what you are SATing is like taking insulin without having a blood glucose monitor to check what your blood sugar is. Especially since at end stage lung disease things often change day to day, and adjustments have to be made. This should all be a part of CF education.

4. MicroPlus Spirometer: I never had one of these before tx. I just got one after, as it is a requirement at TGH for all lung transplant patients. The machine is about $600-800cdn. It's small, portable, and has really been a great part of my tx recovery. I use it every morning, the same way, same time, after the same routine. I record my 3 blows, the highest one counting for calculating if I had lost or gained since last time. The idea of this being to see patterns from day to day. Sometimes its a bit lower or a bit higher, but what the team looks for is a 10% (of total L) or more drop from my 'baseline'. Baseline being established after about 6 months post tx. If there is a 10% drop, I have to call my EZ call answering service and let the team know. If I have no other symptoms (no fever, no shortness of breath) we'll wait a day or two and see if it was just a bad blow, or is infection or rejection present. But if other symptoms are present, a clinic or ER visit might be needed. Either way I always keep the team informed about what's going on, which I really like. The cool part, is that this 10% drop can predict an infection that is days or weeks away. That's why it's so important to be consistent and do spirometry every day. Notice those changes, and notice infection before it gets out of hand. How cool is that?

Again, this allows me to feel more in control of my health care, to be proactive, and most importantly to possibly predict a life threatening infection. Between this number, my temperature, and my oxygen, I can go on with my day and feel good about where I'm at. And the whole thing takes me 5 minutes of my time in the morning.

So there you have it, my top 5. Of course I excluded Scarlett, but she's a must. Puts a smile on my face every day.

You push, push, push, push, and somethings gotta give. And it does.

Pain stinks. But when it's over, and some relief comes somehow, it feels so good. Like the skies open up.
I feel like I have been pushing and pushing through the pain and the misery that comes with it, and finally, finally I have arrived somewhere else. Standing still is not my thing. So this is great.

I had a busy week, mostly at TGH. I am working out there more and more, and even take up days that I am not due there, just to get some extra time exercising my body. I also had clinic this morning very early. I wanted to have them check a few things out - basically me being super careful with everything. The great news is that my lung function was the highest yet, and everything else looks great. Going to tx clinic, as opposed to my CF clinic, is that when I went to my CF clinic it was bad news pretty much always. Always lower numbers, always something. Here I go in and actually enjoy speaking to everyone and seeing my numbers grow, seeing that great clear x-ray, and that higher weight. It feels good.

After clinic today I went to the treadmill room and got a god work out in. I really pushed it on the bike for 40 minutes. It felt amazing. I went up in all my weights also. 7lbs bicep and triceps. 5lbs ankle weights for all my leg exercises. 5lbs for squats. All felt challenging, but good. The changes in my legs and arms are really starting to show.

So, in 2 days I will be 3 months post transplant! Which means that I will have my assessment and which also means I will start to go to my club to work out. I always said that I would wait until my 3 month until I went to work out somewhere else but home and TGH. Mostly as an infection control protocol. I'm pretty excited about it. I want to start with a beginners YOGA class to get my flexibility back - since tx I am so stiff and sore, I know this will really help.

Yesterday was a special day, that I hoped to mark with a post, but it was just too busy. It was Scarlett's 7 month!! My little girl is getting so big. She's doing so many new things, sitting and laughing and rolling EVERYWHERE!! It's quite amazing to watch. I just hope I can run before she can walk =)

Celebrating a good day today, and hopefully many more to come.

Never expected this

This past weekend was a mixed bag of good and not so good. Martin and I enjoyed some time together with Scarlett and family and friends. Then yesterday I had a terrible day. Strange symptoms and pain, everything came crashing down. No idea what was going on. My Sats were 99%, my FEV1 that morning was really high 3.1L. So what was going on? I started to shake, and had cold sweats. No fever. Just agony. It got worse and worse. I ended up in bed, falling in and out of sleep.


It took me a while to figure out that I was having withdrawal from a pain killer that I am on, Oxycodone. What?! Are you serious? This is not happening? This is all I need!! I actually hate the drug. I don't like the way it makes me feel, but when I was in terrible pain, it helped me deal with it. The worst part of all this, is that I was never told that the dose that I am on could be so addictive. I had the understanding that it was such a low dose, that I could stop taking it when I thought it was time, and that would be that. So that's what I did. I stopped taking it, and this is what I got. Now, I have been in a lot of pain during the last 5 months, but I can safely say that this is some of the worst pain - withdrawal. Of course I read all about it, and figured out quite quickly that this could be a serious problem. This is why people can't get off them, the pain of doing so is unbearable to many people. Grrr....I don't need this!!


Anyhow, so as of now, I went back onto the dose that I was prescribed. As to alleviate the withdrawal. I don't want to do anything to harm myself, but I also want to get off these pills ASAP. I certainly feel like my team dropped the ball on this. That hospitals and clinics do not talk to their patients enough about the nature of these drugs. Again, I was always very careful when taking pain killers in the hospital since I did not want to become too sleepy and inactive. But I saw people that were on such high doses, for so long, that I think it hindered their tx recovery. And it seems like the doctors and staff do not pay any attention to the addiction that could result. But addiction never crossed my mind. I had no idea that the physical nature of addiction could be this powerful. I have NO emotional need for this drug. I don't like how it makes me feel, and only have used it when in extreme post operative pain, which I have experienced. Now all of a sudden I try to stop taking it, and my body goes nuts.

Needless to say I am frustrated to have this obstacle. I am also quite scared to start to come off the pain meds, now that I know how sick I can get. My body just seems so sensitive to everything after tx, its amazing. I try to stay focused and positive and recognize that this all takes time and it's all a process, but I also get down when things get set back like this. When I have little control and need to sit back and take it easy and wait until things settle down. I try very hard to think that this will pass, and it will be over, like all the other things that have happened since November 21st. But it's really hard sometimes. These seem to be some of the most extreme symptoms yet.

I have called my tx team and we'll see what the plan will be. I am sure I will have to go on smaller and smaller doses, and still experience withdrawal. I actually just want to make sure I can get off them, and then never take them again. It's not worth it! I feel like such a dummy that I took these pills in the first place. Certainly put myself in harms way, and set myself back.

As for other tx frustrations - since I seem to be on the topic - I am in the process of booking my 3 month assessment. The booking is all over the place, and it's giving me stress. Things like having my lung function done at 7am and seeing the clinic at 2pm. Those long days kill me, and keep me away from home. Obviously I am generally frustrated today and need to re-focus.

What a day, what a life.

(Angie and Sophie, John and Scarlett, and Martin - today)



(Scarlett and I, today at John and Angies)

Today was one of the best days that I can ever remember having. I remember the dreary winters I used to have. Filled with flu, and being cooped up in the house, sick for the past few winters. Oh how things have changed. Even with this pain I am still having in my leg, I have to say this winter is proving to be better than any I can remember.

Martin and I took Scarlett to visit his parents at their new condo. We had not seen it yet (since they just moved in) and wanted to see it, and them. Scarlett loved visiting, and we just enjoyed how much she has grown and how much she loves peoples company. After that, we went to visit Angie, John and Sophie. Which was amazing. The two girls getting to see each other again - it's been a while!! It was such a nice visit.

Today, in many ways was a dream come true for me. I have always wondered what it would feel like to go out on a beautiful day with my husband and baby (like so many people do, without a thought that it just might be an amazing thing!!). Well it was better than I expected it to be. I cannot believe this is my life now. That these dreams are coming true. That I have boundless energy to do the things that I am doing, that I can do my hair, put on some make-up, and look more like myself again, that I can carry my baby, that I can spend time with her and she can get to know me. It's all like a dream. I am very much aware of what tx is and can be. This is why days like today I relish in. Who knows what tomorrow will bring. I never count on it to be anything like today, but if it is, I will just relish again.

Today, more than ever, more than I have to this point, I feel truly lucky, grateful, and happy. All I need is my health, my baby, my husband, and my family and friends. Today I also know that the battle continues for so many tx patients out there. I think of these people often. They inspire me to live better, and I pray and think of my fellow conrads out there. The battle goes on, and I know the suffering and the pain do too. Hang tight. Your lungs, your freedom, is coming. Just hang on.

(John holding his goddaughter - today)

Today I especially think of Eva Markvoort, the 25 year old young lady from http://www.65redroseslivejournal.com/ that is presently battling for her life. On Thursday, Eva posted a very upsetting video of her and her family, sharing with the world that she is passing away. I don't know enough about this story to say any more. I just know how close I was to losing my life, I know what I felt and what I went through along with all those that are in my life. In knowing that, I feel endless sadness that CF takes so many young amazing lives, in the terrible way in which it does. I will pray tonight for Eva and her family. Tomorrow I will live my day to the fullest. We should all live life well, in prayer for her.

Q & A: The Answers 2/2

Okay, these are the last few questions that I did not get a chance to get to last time.

Q: jessicajv: "What were you able to do to connect with Scarlett when you were in the hospital and very sick. Was a difficult transition with her at home?"
Q: also... "How does it feel knowing that there are so many others following your story, and taking such inspiration from you?"
A: When we are talking about me being very sick, I can't say there was anything in particular that I did at all. There was a time period before that I skyped with my mom, and she would bring her over. I would also hear all about her from family. But I got so sick so quickly, that I was unable to do anything, and all my effort was about breathing and pain control. Soon after I was sedated or sleeping with the ventilator 24/7 and during that time I lost all sense of what what happening around me. Once in a while, my mom told me, when I was nearly totally out, my mom would tell me about how wonderful Scarlett was and that I had to fight for her, and my mom said it was the only time I smiled or let out recognition. Which makes me think she was all I thought about when seemingly I had no thoughts.
When I got home, and still now, I just do more and more each day with her. She is very attached to me already, and it seems like she remembers those first 2 months that we were together all the time. But emotionally it just gets better and better. I love her more and more. As a mom we make choices. I chose to let go of the guilt of not being with her, and replace it with the hard work and the fight to get myself through this and be her mom again. It will take a little while still until my mom relinquishes all duty, but I know it will happen. Everything in time as I heal.
As for being someone people follow on this blog, and gain inspiration from, I don't know what to say about that. I certainly never expected this. I started this blog with my 5 followers and wrote it for myself and Scarlett. I find it so flattering that people want to hear what I have to say. I don't always get it, but I find comfort in it too. So it certainly goes both ways. There are so many amazing people out there dealing with infertility, going through surrogacy, battling CF, waiting for lungs, are post transplant, mom's that are battling CF along with their kids. I find people's ability to fight in their lives very inspiring and also reminds me that I am not alone.

Q: Kerry: "What helped the most in getting over the emotional aspect of lung transplant?"
Q: I'm not sure if I am there yet to answer that. I know during the really dark moments, when it seemed like emotionally I was unable to take things any more, being with my family was the most helpful. I hated being alone. I always 'spoke' to my god, and meditated and took deep breaths while trying to fall asleep. But overall being with Martin, my mom, my dad, or John was the only thing that I always needed. I also think time is something that just has to pass. I was told that over and over while I was an inpatient and I am told now. A lot of these emotional issues, the muscle loss, the weight loss, this is stuff that will not happen over night. Time is important, and if you use it as you should things just get better and stronger. Including your mind. Losing time is hard, and I am dealing with it by making new time. Building memories ever day now. I have tried to stop focusing so much on what was.

Q: Poppy: "What is the hardest/easiest part of coming home?" and "Are you finally getting some meat on your bones?"
A: I already answered most of these somewhere in part one, but I guess this is slightly different. The best part was just being home and knowing that I was onto the next stage of my healing. Of course being with my family, my baby, and my house was nice. The hospital was hard. But I did feel like I missed the security of the hospital. If I woke up and something was not right, I was in the best place to be. I liked that. So home was hard for that reason, but it passed within a few days after I started going to TGH as often as I do now. They really take care of me well, and if anything is ever up, I know I can go asap. One of the easiest parts is having my privacy back. At the hospital you have none, especially when you are unable to move. It's something that I will never forget and never miss. Quiet, private time at home is a priceless thing.
As for the meat on my bones? I am gaining like crazy. All I do is eat, everything is sight. All yummy healthy foods, high in the good calories, and full of minerals and vitamins. Before I know I will be 120, 130 lbs and back to normal. I am quite tall, so that still leaves me fitting into all my clothes. Plus with all the working out, I am starting to see muscle again! I can't wait to be super fit this summer. I have goals!!

Q: Angie: "How is the clubbing in your fingers? Did it go away?"
A: Great question!! I never knew the answer and never thought about it before tx. First of all I had really mild clubbing, so I was never self conscious about it. But my mom noticed a change right away when she would give me mini manicures still in the ICU. Now I see a huge difference. It is a quite nice surprise. The same thing goes for my inflated chest. My lungs were very hyper inflated. Which means there was tons of air trapped in the airways, which created fat stretched out lungs. As they stretched over 30 years, the outside of my body did too. My posture got worse, and I had a slight roundness in the front. I was more and more self conscious of it throughout the years. After the operation it totally went away. All that inflation and stretching stopped. I am so happy about this I cannot tell you. My doctors showed me my pre and post xray and the difference is like night and day. One looks like a balloon, and the other is beautifully straight and perfect. This was a nice surprise for me. Martin noticed it the first time I sat up in my bed at step down ICU, he touched my naked back and said it was like someone else's back. He knew I hated it before, and he was so happy. It's a beautiful thing! Plus I can clip my bra on new latches, since I used to always have to use the last one or get an extender.

Q: Rhiannon: "What did you do before you got really sick?"
A: I went to University for Architecture. I never expected to work in the field, I knew it would be too challenging physically for me. It's a very demanding field, especially for the first few years when you work non stop. Not something that I was physically able to do since my 20s. After University I got very sick and had to go on disability. I was living in a condo that my mom and dad owned, so I had independence, but I struggled with the fact that I was unable to work. So I started to volunteer at an art gallery (since I had a minor in art history and went to Unionvillle Arts York program for visual arts in high school). That job really paid off. I got confidence again, met amazing people, and got my life back after being so sick. It just proved to me that there is always a solution to happiness and keeping busy and focused. I met one of my closest friends there, who was an artist and a client of the gallery. Now Martin works with her husband. That was a huge lesson for me in life. When you sit home and sulk (because I wanted to work in my field and that was that, even though it was unrealistic) nothing can happen in your life. But when you get out there, volunteer, or take on something new - even the smallest few hours a week - life opens up to you. You meet people, re-energize, and find out that people are good and if you show will, rewards will follow. Anyhow, it was during that time that I met Martin, and we were moved in and married very quickly. I was running one of his businesses within a few months of us meeting and moving in together. The rest is history. We got our first condo, then a house that we flipped when the market was just so hot. Then 3 years ago we got this house that we hope to be in for a long long time. We sold the business I was running right in time, before I got very sick. These days I plan to be a mom. No thought of working in the future. I feel lucky and honoured to be able to stay home with Scarlett. Never thought that would be me, I always saw myself as a partner somewhere (I'm very type A) living for my work. But now after all I have been through, I just want a simple life with my husband and baby. I cannot imagine a better job.

Q: Bundle of joy: "How did you end up on the cover of the Star and on CBC?"
A: In October my health was pretty poor and the lungs were not coming fast enough. It was my brothers idea to get the media involved somehow, as to perhaps have more people aware, and perhaps getting me lungs faster. That's all we really thought. We were nervous. Myles (Martin's best friend) took on the cause with John, and called, emailed, and did whatever possible to get people's attention.(we called it Operation Get Nat Lugs) John's good friend Paula was a friend of Barb's (reporter from the Toronto Star) and sent her an email that she had to read my blog. Barb read the blog, and wanted to do the story. When the story came out in October, it was more than we could have ever imagined. We expected a little side note, may be a little pic of Scarlett or me. That first layout blew us away. It was mostly out of my blog, and was on the front page. It was several pages long, and had tons of pictures of all of us, especially Scarlett. It was crazy! From there my blog really became public. I know that everyone reads the star on the morning commute in Toronto, so we knew the coverage was huge. For organ donation this was amazing. Our friend Paula contacted her friend Brenda at CBC and they both posted posters all over the CBC to get the attention of someone who wanted to do the story. The producer for the Mark Kelley show called On A Mission responded to the poster, which would require several interviews pre, during, and post. We had no idea, no one did then, how sick I would get. We got very close with both Barb, and the CBC staff. They were amazing. The staff was there when I went into the surgery, and my mom, dad, Martin, Myles, and John really befriended them. Myles became like our PR guy, always keeping Martin in the loop of what the media what up to when things got really hectic. The way I hear it alltold, it sounds like a crazy crazy time!!
It was a shock for me at what happened during my 'sleep', when I woke up. All those segments, all the articles. I had no idea. I was asleep the whole time. To this day I believe that I got my lungs when I did, much to do with the publicity that we got. Getting that awareness out like it was presented, makes people think. 2009 was a record year in Ontario for organ donation, and I think much of that has to do with the way that CBC and the Star took it on. It did not matter if it was my story, or one of the other hundreds of people that were also waiting at the time. It was being talked about, and I am proud we had something to do with that. Even though I had no idea it was happening at the time.

Okay everyone, I think that's it for the questions. I love them, thank you!!!! I hope I was accurate.

Q & A: The Answers 1 of 2

Thank you all so much for all those great questions. I had no idea there would be so many! But I love it, since I often wonder does everyone reading understands certain medical CF terms, or wants me to clarify something. This is such a great way for me to write a post. I will go by name and questions. And yes I do plan to answer all, unless they are the same question. So here goes.

Q: Carol: "Will you ever know who the donor was?"
Q: Julia: "Also wondering who your donor was"
A: I have not yet spoken about the donor family, and there is a reason for that. I have sent out my thank you letter, which will go out through the Trillium network, and that will confirm the donor family if they choose to respond. That's the politically correct answer. That's me playing by the rules of the hospital and Trillium donor network. But the fact is our story with the donor family is a very special one. The day after my transplant, the donor family contacted John (my brother) via email since our story was so public. Due to timing and many other circumstances, we are pretty sure this is the correct match. Of course this only happened since our story was all over the media and it was fairly easy to put things together. This is not something that the Trillium network is happy about, though I want to be clear that this was not us reaching out to get this information. I am happy that they did contact us. They are the most generous, wonderful family, and I will be thrilled to write a post in the future about them. Right now I want and need to play by the rules and wait for confirmation that this family gets my letter. But I can tell you that they lost a dear loved one, very suddenly, and their choice to donate came at the only time it could to save my life.

Q: Winter: "Is it true that you will never experience CF symptoms in your new lungs? And if CF affects other parts of your body, do you still have other concerns with having CF?"
Q: Taryn: "Are there any residual CF issues that you have to deal with post tx? Does it affect other parts of your body?"
A: This is a common and really good question. The CF will never 'come back' in my new lungs. These lungs are genetically different, which means they do not have the gene that is malfunctioning and creating that thick mucus that ruins lungs in CF. So this is the good news. This means that treating these lungs is totally different than those with CF, meaning that the lungs behave differently. I have to get used to what I felt was CF infection, and what could be transplant infection or rejection. There is a lot of education that comes with that, so that you do not confuse old CF body to new tx body. I am learning. As for my other organs. I do still have to deal with other issues but they are minor, and non life-threatening. At least for me and my history. Every CF patient is different. I have no kidney or liver problems. I am pancreatic insufficient but when I take my enzymes as I should (and I never miss them) I gain weight well and digest well. I don't see this as a problem per se. I am also a diabetic, which is of course a huge pain in the butt if nothing else. I have been a diabetic for years and years. Everyone post tx will have high blood sugars due to tx medications, so the fact that I already had a handle on it, was actually a blessing. I have little problems at this point controlling blood glucose levels. I do take it very seriously as I do not want organ damage due to high blood sugars. Again I don't see this as a huge problem, since I can manage it. Of course it would be nice not to take insulin, but I don't think about it any more, as taking my enzymes.

Q: Beth: "When you look at your scars what do you think, if anything?
A: Hmm. Good question. The truth is the scars are not an issue for me at all. I have long past the point of vanity in my life. Yes I love to have nice clothes, and dress up and I used to wear heels everywhere I went. Certainly enjoy girly delights. But I have also gained tons and tons of perspective after a life filled with CF, diabetes, PORTS, needles, bruises, and now the scars that I have. They are large, visible, and all over my body. I have my large cut, plus the drainage tubes. I have the Nova Lung scar near my groin which is massive and very ugly compared to the neat chest one. I have my trech scar on my throat which is healing and I think it will disappear eventually. But I also have little tiny ones from IV's all over me. I still discover them sometimes. When I look in the mirror I like them. I never worry about them that's for sure. I do have some sort of pride. They are battle wounds. They represent what I can't forget and somewhat don't want to.

Q: Barbaram55: "How are you finding the post transplant drug regimen?"
A: I am on a lot of drugs. Mostly new. I have a few cross overs from the CF regimen, but those are things like vitamins, and enzymes that I still take for digestion. Basically I got one of those huge pill boxes, have a chart that they set up for me that tells me when to take what, and I follow that. It's only pills, and it's really no big deal. The only side effect that I have is the shaking, which is getting better every day. The Prednisone (steroid) makes you eat more and makes you slightly puffy, but I don't really see that too much, and the appetite is amazing. I love being able to eat like this, and of course it's helping me gain weight, and fast! I am told that within the next few months, to a year, I will take less and less of the supplements that I am on now. When my nutrition gets better and I am back to a normal weight, like I was pre-tx.

Q: Sarah and Brielle: "...do you think you and I could meet up for a play date..."
A: Sarah and Brielle, I have been waiting to hang out since we met all that time ago!! I can't wait. Let's wait until spring is closer and that flu season is over, and we will have that play date. I can't wait to meet Brielle, and have you meet Scarlett. It will be a hoot!! Thanks for all your support Sarah!!

Q: Marti: "What was it like to be home after being in the hospital for so long, and what are your days like now. And what is your favourite thing to do with Scarlett?"
A: Okay, well where do I start with this. I was technically in and out of the hospital (first St.Mike's and then TGH) for most of 2009. It was a terrible year for that. In October I went in, not to come home until January 2010. That's 4 months, 4 long and difficult months. At first I did not want to come home. Even though I hated being there, I felt safe there, and was so scared and weak. But that feeling went away within a few days, and then I began to re-discover life. Home food, my bed, Martin, my family, and of course my Scarlett. Please don't think I'm nuts for wanting to stay there, but I think after so long and after being so sick, home is scary. I have heard this from many people post surgery. Anyhow, now things are so amazing. Every day I do more around the house and with my baby. My mom and I are enjoying the time I think. I hope she feels the same way. I still take lots of breaks and am told by the TGH staff to rest and not do too much too soon. And I generally follow these instructions, but the better I feel the more I want to do, naturally. These days I make sure to do all my meds and record my temperature and FEV1 level every day. I really take care of all that first, it's a family effort to make sure that comes first above all else. I exercise a lot, both at TGH and at home. I am working very hard to get better and better, and more and more fit. I of course do as much with Scarlett as I can, but right now I still can't lift her. So my mom and Martin do that. I feed her often, watch as Martin bathes her (which is very cute), cuddle with her, and sing to her. My favourite thing by far is when we hang out in bed together, she stares at me and touches my face and I sing to her. We just love each other. She reaches out for me and my heart melts and I love her more and more. Each day I can't believe I can love her more.

Q: Shirley: "Are you doing any advocacy for CF or Organ Donation"
A: Right now I don't have any more energy for advocacy. I liked the press that we got, and the fact that as a result of the media coverage organ donation was talked about. That's such a great thing. In the future I will do more, probably for organ donation more than for CF. I know my family, especially John, will always be involved, as well as Barb that did such an amazing job for the Toronto Star. But right now, I need to work on myself, and to get myself back physically. After 6 months or a year, I am sure I will advocate in some sort of way. I feel like it's such a blessing, organ donation, that can give people their lives back, that I need to always spread the word so that people donate. For me it seems like a simple problem to solve, getting more donors. It's all about education, and I think we're going to make leaps over the next generations.

Q: Lisa: "Why don't you have a feeding tube like most cf'ers do?"
A: My experience is that most adults with CF don't have a feeding tube. I don't know what the stats are on this, but I don't know many that do as adults. As for me, I was always a good BMI. I always ate well, and had a BMI of 21 or above. A feeding tube was never mentioned to me as an option or necessity. The last year I lost weight, and we knew we were going into transplant. I kept a great BMI until about September/October. At which point I got lipids (feeding through IV) and I gained tons of weight quickly, and then it was lights out for me. Next thing I knew I was post tx at TGH. I did lose SO much weight after, as you know. It's hard to be this thin, but I am gaining so quickly and eating so well, a feeding tube is the last thing they would recommend. Feeding tubes after transplant are just not commonly used. Many people have the opposite problem due to the prednisone, and of course your organs working so well. I am gaining about 2 lbs per week now, and that's a good pace. Hopefully within the next few months I will be back to my 120-130 lbs.

Q: Mark: "What are you feeding Scarlett?"
A: Haha! I love this question!! Well she was and is a formula baby! She started on solids at about 4 and a half months. She loves her baby rice, all sorts of flavours. My mom makes her everything fresh. Carrot soup, rice, apple sauce with pear or other fruit. She loves yogurt, and banana, and of course still has her formula bottles. I love that she eats only fresh home made food. She has not been sick yet, and we think at 6 months that's pretty darn good. She had the sniffles once (I think from me after I came back from TGH) and she fought it off quickly. We hope to start her on organic chicken between 6 to 7 months. That's the next step. She seems to be the same weight now but growing longer and longer (taller and taller I should say). So there you go Mark, I'm not sure you were interested in all these Scarlett facts, but I love writing about her!!

Q: Toni: waiting for tx and scared that the call will not come
A: Toni, I wish I could tell you not to worry, but I know it's so hard. But you have to stay positive and take it one day at a time. No matter what happens, or how lousy you feel, find something to laugh at each day. Find a happy moment, no matter what. Focus on your family, friends, things you love to do. For me it was my baby. It was my husband and the love on my mom, dad, and John. It was the unconditional support of friends, and strangers. It was my blog that I wrote in and let myself get distracted from the scary situation that I was in. Toni, I know it's scary. Waiting is so hard, but it's worth it. Try to deep breathe, close your eyes and visualize how amazing it will be, and how your pain and suffering (all that work) will pay off. It will. Be strong and brave, and marvel in how brave you are. Be selfish, this is hard. Harder than anyone who has not been through it can imagine, that makes you special and brave. Write me anytime, and I will try to say something to comfort you. I wish you nothing but luck, and I cannot wait for you to experience the other side of this.

Q: Angie "How do you get over or come to grips with the fear of rejection?"
A: The truth is I just don't think about it. I work hard every day to do all that I can to stay well. I eat very well - healthy whole food, no junk, I drink lots of water to keep hydrated. I work out, and do my meds religiously. That puts my mind at ease. I feel in full control. I do all that I can, and that is all I need. Rejection is a negative thought that can overwhelm you, same goes for infection. My advice is instead of wasting time worrying and thinking about it, do something! Get on your bike, go for a walk, eat a good meal, kiss your baby (if you don't have a baby, kiss your spouse, mom, dad, sibling, or your best friend.....) Good luck with being listed. I hope you have a very uncomplicated wait, surgery, and recovery. You can do it!! It is so worth it. Stay enthusiastic and positive Angie!! I wish you nothing but the best, and please email me if you need anything. I can try to answer your questions, and hopefully give you some sort of comfort!

Q: Shannysnewlungs: "Visitors? How are you handling friends wanting to visit?"
A: I know we spoke today at clinic, but I will give my answer here again. I am really really careful with having friends even family over right now. Flu season is scary for us right now, so generally I have had only a few people over. I have not seen most friends in months and months. Even some family for the past few weeks due to illness. It's terrible. I miss everyone SO SO SO much, but there are phones, and email and text. And that's the way it's going to be until spring comes and/or my meds go down a bit. And since I was always this cautious when I had my CF lungs, this is nothing new to people that know me well. They all understand and I love them for that. People that don't understand need to be explained that what can be a common cold for them, could be hospitalization, or worse for a transplant patient, especially so fresh out of surgery. But again, most people are more than understanding and often cancel dates since they feel slightly unwell and want to make sure they don't get me sick. I always appreciate those people.

Q: Lauren Grace: "They say that sometimes you take on traits of the person whose organ you have received. Do you have any new traits or likes?"
A: As far as know, not really. Nothing new. I used to love sugar, now I don't. But as far as I know my donor loved sweets. So as much as I would love to have some cool similarities and differences, I don't. May be I will notice things in time, but not now =) I too have heard people having radically different tastes.

Q: Angie: "What is a Nova Lung?"
A: The novalung helped me exchange gases during the time when I was on the ventilator and had severe problems with CO2 retention. When you retain CO2, just like when you don't have enough O2, damages to the brain and other organs can occur. I was put on it to help my body when I was on the ventilator. The novalung basically re-oxygenated my blood when my lungs were not able to do it any more. It's a small box that sits outside of your body, that your blood passes through. It is connected to a major artery. Mine was located at my groin (where the right leg ends). I have quite the scar to show for it, but it did keep me alive for those few extra days that I needed. It's a great machine, but a person cannot be on it for ever, so time is of the essence. It is certainly a last result life support measure.

Kathy - can you send me your email. I would love to write you personally, or may be call you? I know how you feel in so many ways. Hang on, fight hard. This is such a hard time, 2 weeks after, but you have to be strong and fight and be brave. I hope you trust me enough to give me your contact info, and we can chat. When I read your email I really felt for you. I know the pain and the fear, and the last thing you need is to feel alone. You are not. I am thinking of you, and wishing you a better day each day. My email is nataliaritchie@rogers.com You are NOT crazy! I look forward to hearing from you!! We can email, or Skype, or text, or msn....we'll figure out a way.

Q: Brian Michaels: "One or two things you want to do once you've recovered."
A: I tend to take things days by day now. I feel like I do things that I have wanted to do every day now. Small things, first, like taking care of my Scarlett and being with my husband in my house. This is so great for me! I took Scarlett for a walk in her pram the other day. It was something like a dream, since I never knew I would be able to so soon after the surgery. For the future I want to play tennis with my husband, with my friends, take some lessons. I want to run in the future too. So badly. It is the ultimate freedom for me. With that comes running after my baby once she starts to walk and run, I want to ski, to swim in the waves of the ocean....Oh sorry you asked for 1 or 2. My life has a lot ahead, I can't wait!!

Jessicajv: I will answer your question, and all the rest in the next post. I hope I did justice to the questions everyone! xoxo

Almost done, soon to post answers!

So I am nearly done the answers to your questions. They were great and a lot of fun to think about and write in response to. Here are today's pictures of Scarlett. We had some fun with the camera while watching the Australian Open (we're a tennis family) with Martin. Martin believes Scarlett is going to be a tennis player. Uhuh. We'll see about that =)

I'll post the answers Monday or Tuesday. I want to make sure the answers are both accurate and informative.

(Watching the game with daddy)

You ask me: Question and Answer

Today, following in the footsteps of my great friend Beth, I would like to do a question and answer post. It may be a total flop, but perhaps there are thing some of the readers want to know and have wanted to ask but have not had the chance. So ask away. About CF, surrogacy, transplant, whatever.....being the mommy to an amazing 6 month old with the challenges that we have...anything.

I hope I get some good ones. I am really looking forward to hearing from YOU and getting to know who's out there reading.

Scarlett welcomes questions too!! haha!

The first month

As I mentioned previously, I do not remember a lot about the first little while after my lung transplant. I do think about it a lot, and certainly I have heard many stories from family and friends and even seen segments from the media that have allowed me to 'remember' more. The truth is I don't remember how sick I got before. When I was still at my CF ward at St.Mike's and was put on the ventilator. As if it never happened. From there I was transferred to the Toronto General Hospital ICU where I waited for my lungs.

(Nearly 10 weeks post lung transplant, January 27th, 2009 - today!)

It was during this time that my family started to notice my rapid decline and the fact that I had little time left to live. I was sedated, and not breathing on my own. My lungs failed, I was hemorrhaging blood when I coughed into the ventilator and when I was suctioned. Martin was unlucky enough to have witnessed one of the the times that I was suctioned in the ICU and he said it was horrific. I was convulsing and bleeding a lot. So, my family decided to push for a living donor scenario. There was just less and less hope in those lungs coming. The first step was for everyone to get tested for their blood type. To every ones surprise both my mom and dad, as well as John were all B+ (same rare type as me) and Martin was O, also able to donate. Everyone was ready to donate a lobe, including my husband. Not a thought went through their minds not to, in fact they were all joking about who would be lucky enough to do it. We also got calls from my aunt in Chicago who is also a B+ and my uncle in Poland that was ready to fly in right away. When I think about all these people willing to go through this surgery to save my life, it makes me feel like the luckiest woman in the world. Their fight was just as strong as mine. I would do the same for each and every one of them in a split second.

November 21, 2009 came around, and my dad said he felt that I only had a few days to live with my lungs. He saw the doctors getting worried, running out of options after the Nova Lung started to cause problems. Martin said that he knew one way or another we were going to operate that weekend, but everyone thought it would be from family live donors. Martin was sitting in his office at work, ironically fixing up our Will, getting ready to be called into the OR when he got the call. It was not him going into the OR, I was, the lungs had arrived. At first he thought it was a joke, after so many ups and downs, it was hard to believe that now, truly in the 11th hour, a donor had been found. It was the best news he had ever heard he said. The news got around quickly. He called my mom right away, who has heading to church with Scarlett at that very moment to continue to pray for our miracle. When my mom called my dad, he cried on the phone, the lungs are here, her lungs are here!

My mom, John, Angie, and baby Sophie (who was only 8 days old at the time) stayed at our house during the operation. I always told my mom, no matter what, not to drag Scarlett to the hospitals. She needed to continue her schedule, and so that's what my mom did. Always respecting all my wishes regarding my baby. I trusted she would be a perfect babcia and caregiver along with Martin. So the 4 of them spent the next night at our house. Comfort in numbers at the most critical time. Martin and my dad were at the hospital.

My dad never left my side. He slept in the chairs, in the waiting rooms, even though others told him to sleep, go home, rest, he rarely did. He just could not leave, even though I was unconscious and in the impressive hands of the ICU at TGH. Those people kept me alive. I have a lot of people to thank before I even went into the OR.

(Holding my favourite Christmas gift from friends Kelly and JR - my new lungs in plush blue)

It was my dad and Martin that walked with me as they wheeled me into the OR. Martin and my dad remember the dramatic unplugging of all my tubes and devices, and that being a very scary and emotional moment. And the the doors closed, at that was that. It was all in the hands of Shaf Keshavjee and Tom Waddell, my surgeons, and the many other staff involved. I wish I could know them each by name and person. They are all so valuable to me, and all so committed to saving peoples lives. I don't remember really waking up and the days that followed in any logical order. I remember one time waking up, I think I was still in the ICU but I am not sure, and my dad's face and Marty's and them saying to me over and over, you got your lungs, it's all over. Big smiles all around. On my end I felt nothing but discomfort, confusion, and distress. I was unable to move, and had tubes coming into my nose, throat, hands, everywhere. I was confused as to how I got in that room. I could not speak due to the trach, and I found that difficult and I panicked a lot as a result. I remember the horror of the panic of not being able to move. I had pain medication that was used liberally, so I was not in terrible pain. It was more a tension and stillness of my body that I found unbearable. I was soon sedated again since I could not calm down. It took me a long time to discover that I had had my operation, I was alive, and that I had been very very sick. This took the longest for me to realize since I did not remember a thing.

(Seeing Scarlett again on Christmas day)

Over the next month the recovery was the hardest part of my life thus far. Before I turned the corner, both mentally and physically, I went through a dreadful time. My brother said that I looked constantly in shock, ready to die, cry, ask and beg for help, even though there was not much anyone could do. Time had to pass, meds had to work, medicine had to do its thing. But after dealing with CF for 30 years, one comes to think of lung transplant as the easy part. At least that's what I thought. I heard stories of people leaving the ICU in 2 days, then out the door and home in 10 days or 2 weeks. That is what I expected for years and years. I did not expect for me to get so sick, so fast and to have to fight like I did.

By far the hardest part was not being able to move. I began to get sore, and agitated. Lifting my arm over my head was impossible so I started with physio by just lifting my leg a few inches, my arm a few inches, stretching my toes up and down, and trying to sit up in a big chair for an hour or so a day before getting back into bed with the help of a lift. It was devastating for me to have to go through that. I felt very sorry for myself and really believed for the first few weeks that I would never walk or move again. A silly thought when I think where I am now 2 months later. But when you expect something so different and wake up one day, and this is what you have to deal with, your mind plays tricks on you.

Martin had a lot to do with my rehab. He took time off work and worked with me for weeks, until I was walking with him down the hall. Large walker, small walker, holding his arm, then on my own. We did a full weights program, Martin pushing me all the way. Even when I did not want to move from bed. He would make sure I got my pain meds, that I ate, and that I got out of bed. It was the hardest part. Sleeping was easier since it was so much work to move. But things got better and better. Every day a better step, stronger legs, small changes. My body began to respond.

(Arriving in the TGH Atrium December 26th, 2009 - 1 month post transplant)

There were set backs along the way. Since I was so weak, I was in bed longer, and unable to get to the bathroom for nearly 5 weeks. This is so difficult as an adult. I had to wear a catheter that was removed quite early as to prevent infection, at which point I wore adult diapers and used bed pens. No one really talks about such things, but the challenges of that are huge. I was also on Lasics at the time, which is a medication that makes you get rid of the extra fluid that your body is holding, which meant that I was urinating all the time. And when I say all the time, I don't think I can even describe how much that was. At times I would wake up to a bed soaking from top to bottom. Needless to say, the doctors soon evaluated me and noticed that what was happening was unusual. My bladder had stopped contracting and letting me hold urine. So I went back on the catheter to make my life, and those poor nurses that were in and out of my room 24/7 lives easier. That time was so hard for me. I had bladder pain from not being able to empty in time. I had bowel pain. It was insane. There were nights that I prayed for relief in any form. Most of the time I got good drugs to help me sleep and get relief.

So I know that was too much information, but I said I would be open. After that when I got stronger, the doctors told me the catheter had to go. I had all my tubes removed and it was the last to go. I was so horrified that I would have no bladder control again, but this time they took it out and everything worked as it should. The muscles had come back, like everything else in my body. It was just time, strength, and it felt great to feel that much more in control of things. Let's say that I will never ever take for granted such simple things again.

So that was my first month. The second was wildly different. I moved ahead faster and faster. I spent more time alone, without as many frets about being alone. I started to gain confidence in myself and in my new lungs. I reached a new plateau those last few weeks.

The second month...To be continued....

Home tomorrow, 63%, and a little Jungian perspective

Sorry for all those expecting what I promised, the more itty gritty parts of transplant in this post, but that will have to wait. I am actually working on that one. It's started, but other things came up during this admission.



Needless to say I am tired of being here. Really really tired. I feel really good, and run around this place, or ride my stationary bike to keep those new lungs working. I am loving the fact that I can ride that bike on and on and as my legs get tired, my lungs are no where near ready to quit. That's pretty cool I have to admit. Pretty darn cool. I get my heart rate to 156, and my SAT's (oxygen) stay at about 97% on room air. Whoaaaa. I know. My pulse is raging and my body is working and my heart and lungs can work together to exchange those gases and safely deliver them where they need to go. It's like magic. Well not really, but it is like a healthy body, or one trying to get there.


I am only starting to enjoy this recently, and I am not sure why. Why I have been so hesitant to let go and enjoy the gains of this battle that I am fighting. There are so many gains, yet I have found myself focusing on the negatives over and over. Very unlike me. Is this the new me? I don't think so, but the change that I do feel is profound. May be one day I will get it, may be this is just part of the healing and it will go away, or may be it will just be like it is now. What I am mainly talking about, is fear and anxiety. In that specific order in fact.


Recently I have been speaking to a spiritual counsellor here at TGH. I did not want to speak to a priest (I already know to pray, thanks) or a psychiatrist (I don't need meds nor a quick fix) I just wanted someone to speak to that would listen and, if I am so lucky, give me some insight and may be a book. I was lucky when I met Derek, I got both. We spoke about my being tired of being sick. of a need for a break, for me and my whole family. We also spoke about death, mortality, those thoughts that creep up here and there post transplant. Normal thoughts he said. I'm sure, of course, normal, but this kind of normal is still a difficult one to live with.


The book I got to read is Swamplands of the Soul - New Life in Dismal Places by James Hollis. The chapters are divided by emotions, which I really like. I opened up to fear and anxiety right away, and just found it so right on, that I was more and more pleased with myself that I found my way onto Derek's office door step. One of the fundamental questions in that chapter: ...why, then, in the midst of something wondrous and transcendent, would one feel this undercurrent, this pull down into a dismal swampland? Good question. Why is it, that I am doing so much better than I have in years, had the gift of life given to me at the last possible moment, when my life was seemingly expired, why after all these gifts am I riddled with anxiety and panic.



As the process unfolds, my transplant journey I guess it can be called, this anxiety and panic is getting better. As I improve and find more and more of my old self within this new one, I feel it's easier to cope, and not only that I find myself having to cope less. What does James Hollis say? It seems like the only antidote, the only way out he says is to face these fears and anxieties head on. He quotes a poem by M.Truman Cooper that I love so much, it's so simple yet it explains it all to me:



Suppose that what you fear
could be trapped,
and held in Paris.
Then you would have
the courage to go
everywhere in the world.
All the directions of the compass
open to you,
except the degrees east or west
of true north
that lead to Paris.
Still, you wouldn't dare
put your toes
smack dab on the city limit line.
You're not really willing
to stand on a mountainside
miles away,
and watch the Paris lights
come up at night.
Just to be on the safe side,
you decide to stay completely
out of France.
But then danger seems too close
even to those boundaries,
and you feel
the timid part of you
covering the whole globe again.
You need the kind of friend
who learns your secret and says,
"See Paris first."



I'm not sure what answers I got from this poem, and from these chapters and from this book. But I certainly understand that after the experience I have had, so different and unique to my life thus far, fear and anxiety is the norm. I have the choice each day, at this point in my recovery to face depression or face anxiety. Nice choice huh? But that is exactly how I feel. When I sit back and feel helpless I get depressed. When I move forward and onwards, I get anxious as I have to face the unknown. But there seems to be progress. One last quote to bore you guys, that I really liked, and made me think: "Anxiety is the price of a ticket on the journey of life; no ticket - no journey; no journey - no life" Somehow this explains it all to me. Suddenly. What it says to me, it's all worth it.

Enough of the psycho babble, I think I've bored you all by now. Today has been a great day. Everything looks good for going home tomorrow (Thursday 21st). This I am thrilled about. The other amazing news, that has me and my family thrilled, is that my lung function this morning was 63%, 2.3 L. Only a week or so ago it was 48%. This change is incredible for me to see. It is encouraging, and has me really motivated to see how much more it will rise and how quickly. It is certainly the kind of news that you want to hear.

My mom and dad, proud grandparents, with Scarlett (now 6 months) and Sophie (now 2 months) on Christmas day in the Atrium of TGH.