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.

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.

Daily Life - update

The past week or so have been very busy. I am able to do more and more, both around the house and around Scarlett. It's been great, but with it has come pain in my shins and feet. Terrible pain. So far it has been decided that this is all de-conditioning of the muscles. Of course that makes sense since I have not been walking for months, and now I am running around all over the place, and working out, and using all those little muscles in my shins and feet that seem to be the last to come back. The rest of me if getting better and better. I am gaining weight. Looks like about 2lbs per week now. I am at clinic each week, as they are following me very closely. I work out twice at TGH with the physio team, and even though it's at the hospital, I really like the staff and the work out I get. I tend to push myself and actually get a work out in. I also have my new spinning bike, which I LOVE! I can get on it any time during the day without leaving the house and get a killer work out in. Martin liked to lounge on the bed and yell at me while I do it - getting me back for all those years he'd do his work out and I would sit on the couch and veg out on terrible CF diet food. He's loving the new me! haha.

The big change is that I got my home spirometer. It's a little machine that measures my lung function at home. I do it each morning at 9am to see how my lung function is that day. The idea is to be as consistent as you can, as to notice change day to day. The instructions are as follows. Do it at the same time, after the same routine, 3 times (no more or less), and record the numbers. If there is a 10% decrease (as in I am always 2.75L and one day I am 2.47 or under) this is something to give the lung team a call about. We have a system at TGH called Easy Call, which is a personal voice message service that each patient has to leave messages on or get them from the lung team. It is brilliant, as communication between the team and myself is very easy. I call my number, leave a message, they call back REALLY quickly. Love it. Anyhow, for interests sake, these are my numbers right now, that luckily enough correlate quite nicely with the FEV1 numbers I get at TGH at the PFT lab.

Feb 6th 9am

Temp: 36.59c

FEV1: 2.37, 2.75, 2.81

Feb 7th 9am

Temp: 36.45c

FEV1: 2.58, 2.58, 2.66

Feb 8th 9am

Temp: 36.46c

FEV1: 3.11, 2.86, 3.01

It is important to do 3 tries, as not every time you blow will be your best. 3 tries seems to work well to get an accurate highest number. The number that they look at when you bring them your recordings is your highest that day. I tend to get better as I go, most people do I gather, but this morning I blew my best number first, go figure. The spinning is really doing it's job to get my lungs working, I like 3.11L!! Woohoo. I know that I usually speak in percentage terms, but since those are not true (depend on the machine etc) using liters is better practice. For those that are not familiar with what that means, when I was pre tx, I was about 0.56L at my lowest when I was able to measure (blow into the machine). I was just over 1.0L for the past 5 years or so, which is about 30% lung function. So you get the idea, that 3.11 is very high. Way into the normal lung range, between 80-100%. I know numbers are not everything, but they certainly paint a lovely picture of what lung tx can do for someone like me. Quite inspiring.

So that's the nitty gritty of my mornings. All this takes very little time. Being someone who always recorded how I was feeling, when, after what treatment, this is not a big deal for me. Measuring temperature each morning along with my lung function gives me a nice idea of how things are going. Gives the lung team a lot of information also when they don't see me. Being the true type A that I am, I love having this sense of control.

Of course this is not all that I do all day. Once I get the pills, and the tests out of the way, I am doing more and more and more around the house and with my life. It feels great, though I tend to over do it, and I pay the price with sore legs and feet. But I have a hard time sitting still.

Last week Martin and I went out with friends for the first time. We met our good friends M and P for a great Indian dinner, and since I have not been out for at least 8 months, and I have not seen M and P since the end of the summer, it was really a great night. In that time they had a baby, so we spoke a lot about Scarlett and their little K. It was something else, being a regular mom, out to dinner with her hubby with some friends, chatting away about our kids. Crazy, if you think where I was 11 weeks ago. The conversation still was mostly about the tx and all that went on, and I hope that I did not bore people to death. I have this need to talk about it with people, and I am starting to think I have to stop. Move on. Talk about something else. I don't want it to be all about me, I hate people that are all about them. But hopefully my friends know that it's something I just have to get out right now. There is so much to tell. I have to stop myself and remind myself that people have things to say about their amazing lives. Since I really do want to know, I am just too excited about my new life. I promise everyone out there, time will help me stop gabbing about it!! It's very selfish!!

Here is a picture from the night. I like getting a pic of me every week - so that I can record progress. Plus I love the fact that I am not in sweat pants or hospital gowns! Feeling pretty is something that you lose quickly after so many months in the hospital.

Martin took this picture when we got home. I wish I took one at the restaurant, but the four of got were talking and we never managed it. Next time!! So this is week 11. I'm keeping track =)

I know there have been some other questions that I did not get to answer from the Q & A, since they were added in during the last few days. I will take a look and answer them another time. Right now I am working on a few posts that are specifically for CF parents, as well as patients. Both to do with lung transplant, but also my experiences with school, work, etc. I feel like I have somethings to share.

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!

Amazing things.

Today I was at my TGH clinic. Another super long day. It started off a little bumpy, literally!! When heading out this morning to the car, with my mom Scarlett in tow (since I can't drive yet, I have to rely on my mom with Scarlett to drive me) I fell on the road. I did not slip, there was no ice or snow. I just stepped off the curb and my knees just gave in. Ouch! I forget still that my knees and legs are so skinny and there is so little muscle! Yikes. It was not the nicest thing to have happen at that early in the morning, especially since I knew I had a long day ahead of tests. As far as I can tell all is okay, one sore and bruised knee.

So I had my PFT's first, followed by treadmill room (basically physio - treadmill, bike, weights, and legs....I have to continue until 3 months post-op) then blood work, xray, and finally clinic. My day started to my pft's, which are the tests that require the patient to breathe in to a machine and find out lung function. I know that not all my blog readers out there know all the CF and transplant lingo and tests, so I am going to explain as I go along. Anyhow, today we saw another incredible number. My new lung function is 76% (or 2.65L for those that follow those more accurate numbers).. I was in shock. About a week ago I was at 63%! My family and I are so happy, we're thrilled. It's all like a dream.



Clinic went really well. The doctors are thrilled with everything, and hope that it all keeps on track like this. My drug doses were changed, so that I am not on such high steroid doses, and that's always great news. My xray is pretty, clear, and when the doctor looked at it today, she was thrilled that after 2 months and all that I endured waiting for my lungs, they were able to achieve such positive results. I can tell from the staff, everyone in surprised. To be honest, I am too. I believe in science and medicine, but really it all just feels miraculous to me. From what was a bad dream, so just plainly a dream come true.



I am very tired, and am off to bed. Scarlett is long asleep, the good baby that she is. Mommy's little helper I think of her. Being to sweet as mommy goes to her clinics and tests - and it seems like she understands it all. That we need to stay strong together, not only her and I, but her daddy, and grandparents. Stay strong and keep going as we have being. Together, no matter what, how hard it got. And it got so hard, and now the clouds are parting, and 2010 has emerged, again like a dream.

Myslef and Martin with our little Scarlett - who loves to hold on to daddy's hair!!

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.

A bump in the road - 8 weeks post

Wednesday I had my first biopsy of my new lungs. When they went in, they found infection. But that's only part of the story. After the bronch I was really ill. Doctors said i just reacted badly to the biopsy, my lungs became inflamed, and the reaction was vomiting, severe chills and total misery. I walked in there for a few hour appointment feeling great, and ended up terribly sick. Anyhow, going back to the mucus they found. The reasoning is I developed a sinus infection that drained into my lungs. I'm not going to go into specifics of Wednesday night, but it was a rough night. I got a bed later on that night on the same floor that I was just discharged from 9 days earlier. I have been put on a 3 week course of iv antibiotics to get rid of everything in there.

There are two pieces of good news here, may be three. One, I have no rejection. Two, I can do home iv's after they see the iv's working. Three, this is very common with CF patients since our sinuses are still CF, but our lungs no longer. So this is not a huge set back, but more just part of the process. I have become really good at accepting that things take time. Lung transplant is such an undertaking that really teaches patience and the ability to look past this moment and know things change every second, minute, every hour.

I am feeling stronger and stronger and gaining weight! I am, as I write, looking at my bike and weights, that I use in the hospital. I am starting to move faster, with better balance and range of movement.

But enough about today. I am wondering at which point in time is best to tell about my experience. I really don't know. I remember so little, in fact I don't remember anything from TGH until I was in step down. That's a long time. I feel like that loss of time has completely made my head different, the way that I perceive things. I feel that time lost, and I don't feel good about it. My last images from St.Mike's are of me doing pretty well, waiting for my lungs. After that - blanc - and I was told the story of how I started to be in more and more pain, more sedation, then I was vented. I don't remember even the slightest snippet of that. Then I was transferred to TGH, and a week after being in critical condition waiting and being on every machine known to man to keep my body going. They did amazing work in the ICU. Again I don't remember this but most of the gest you can get from the CBC interviews. I watched it and I could not believe that was my life. That was me!!

For me the real fight started when I was fully aware of what was happening to me. I woke up, I don't remember who was with me, and it hit me that something has happened. I could not stop looking at my arms, they were like a skeleton. Then I lifted the sheet and saw my legs, my scars, it was horrifying. Of course I was on many sedation drugs and pain killers, so everything was extra dramatic, but I can say for sure when I woke up I was in shock. My brother John told me recently that I was like a wounded soldier coming back from war. I would flinch when someone touched me. I remember my skin really hurt, and my tail bone since it stuck out so much. This 'shock' lasted for quite some time. Only now do I feel okay being alone. All those anxieties passed once I got walking around and eating well.

The hardest part for me was being unable to move. I tried lifting my arm, it did not work. I tried lifting my leg in bed, it would not budge. I was in that state for about 3 weeks. It wore on my quite a bit. My mom spent a lot of time with me in the evenings and we would set up a whole spa. We did the whole routine together every night, and I loved those nights. They were my favourite. The hospital was dark and quiet, my room always had low music on courtesy of my husband that set up our iPod. Think Enya or Sarah McLaughlin. My mom would help me brush my teeth without me having to get more pain killers. I was in a lot of pain still from the operation. She would brush my hair, and do a full sponge bath with my favourite lotions. It was so nice. But I remember that time well, and I was in such a dark place. Emotionally I fell apart. I don't know what happened, but it was all too much for me then. I had panic attacks that were beyond my control, something I started having while waiting at St.Mike's, when I could not breathe. Overcoming the emotional part is just as difficult as the medical part. If I were to walk into that operating room months earlier, it would have been different. I had to take the hard route. haha

I guess all change is hard. Most of us are not good at being thrown out of our happy little lives and be forced to be a patient and nothing else for a period of time. There is something very fragile and at the same time very powerful about such a dramatic change. Things right now are moving forward and that's all I can ask for. I hope to be running by the end of February at the gym. I also want to keep gaining as I have been and have each day get better.

Next post: the gory part of transplant. Ok may be not gory, but for sure humiliating hospital experiences.

............. and this is our Scarlett at nearly 6 months!!

....ok and for those of you that have not had enough, a video.....

(I promise that's it)

2009 all in a year for the Ritchies

What can I say about 2009. Never in my wildest dreams did I ever think things would go as they did, but at the same time, now things are perfect, as they should be. I have my husband, my daughter, and my new lungs. Somehow, 2009 accomplished what we wanted, but it was a battle in every way.

On July 17th, we finally met our little girl Scarlett after a lot of hard work getting her here. But it was more than worth it as we met the most amazing family on the way. Scarlett came into our lives and changed everything for the better. She is now 5 months and amazes all of us, and is a true blessing in all of the pain that we have all had to endure otherwise. We just love our Scarlett Anna more than anything. I cannot wait to back home with her very soon taking care of her, being her mom.

Health. 2009 was the year of bad and good health. In January 2009 I was already very unwell and on IV antibiotics. In fact I was on IV's most of 2009, until this miracle came and I got the lungs I needed. It began to be incredibly difficult in the summer, when I had to use oxygen 24 hours a day and life just had no quality left to it. It was then that all we could do was wait. No one expected me to get that sick. It happened so fast. From lungs that still somewhat worked for me, to ones that were no longer working in a matter of a week. Then came the ventilator, sedation, ICU, TGH, Novalung, and finally before there were no more options, a donor. Lungs. That miracle. How it all unfolded, is a story I am yet to tell. It is uncanny. Due to the media coverage, the story was much more than a regular transplant. But I will leave that for another time. There is too much to say, too much to write about. Much of it is just pure miracle.

On the family side of things, we once again proved that together we are stronger than when we are apart. There was a wedding, John and Angie's. And their little girl born November 13th, Sophie. All such amazing news.

So, we welcome 2010. It will be amazing. A new chapter, and a new beginning of sorts, but really a continuation of my life. Good or bad. With all it's up and downs. My life.

Finally.

So here I am. So here we are. December 29th, 39 days post transplant. I am here, alive, breathing, writing, once again in my blog. How cool is that?

I know it has been a while, and I am sorry I could not write sooner. So many times I wanted to. I missed the outlet so much, but it was not time yet. Not until today, 39 days later.

Today I am perhaps a week or so from going home. I am so lost right now as to where to start this post. I was told just to make it short, but how can I? I have so much to say, and over the next few weeks may be months I will try to say it all, as well as write about home, what it feels like to finally, finally be home. As I said I am perhaps a week away, from home.

Let me start off by saying thank you. Thank you, thank you, thank you. To everyone out there, and I now know there are many of you, that have supported me through what has been the most difficult thing I could have ever imagined going through. There are so many of you out there that I am often stunned by the response. It has been captivating for me to watch. But I have to say that I feel honoured to have your attention in the way that I do. The people I have met, the love that I have been shown is unbelievable. From neighbours dropping off food, friends helping out where they could, to the most heroic gesture I could imagine: A man calling TGH and offering to be a living donor of a lobe of his lung to save my life, when there were no lungs in sight and my family was strongly considering the living donor route. I will never forget the city that Toronto is. Though of course we have received notes from all over the world. People are just good.

It has been terribly difficult for me to get emotionally well again, but I am getting there. This is partly due to the fact that I don't remember months before I got my lungs and much after the operation. It is a strange and unsettling feeling when one moment you are at a certain point in time, and one day you wake up somewhere new, with seemingly everything lost. That's how it felt anyhow. I don't remember waking up from my operation, it happened several times in the ICU and each time my family had to relay the fact that yes I did get my lungs, it did happen, it's over, it went well. i was in and out, and every time the same conversation occurred. The problem was when I finally did come to I could not move a single body part. I could wiggle my fingers, and toes, perhaps my feet. My neck could barely shift from one side to the other. It was singlehandidly the most horrifying moment of my life. The weeks to follow I will slowly write about in the posts to follow. There is so much to say. But I have to say the first 3 weeks were nothing I could have pictured, imagined, or even believed if I was told that could happen to me. I was in bed so long, got so sick before the transplant, that I had lost every other capacity. Those first 3 weeks. I close my eyes now I cannot believe I am here. Like this, now. I made it. With incredibly hard work, pain, will, and determination, and let's not forget the most unbelievable family anyone could ask for.

My lungs came. Can you believe, my lungs came. i call them mine, but there belonged to a lovely woman that lost her life. Her family made the decision to donate her organs, and in turn saved my life that Saturday afternoon. Truly at the 11th hour. When I breathe now, I breathe a little bit of her. I don't know who she was as a person, but I know her in some way. She is certainly watching her perfect lungs working away, and she is so deeply proud of her family for making the choice that they made and followed her wishes. I have so much gratitude in my heart. I wanted to live, and only due to her and her family was I able to survive. I know the family is reading this, I know it, so thank you. You saved my life, and gave my daughter her mom back, my husband his wife, my mom and dad their daughter, and my brother his sister. I can continue to be a friend and live the life that I have always wanted to live, breathing deeply.

I'm sure you're all curious how it feels. Now that I can walk again, and though weak and thin, and still with much more strides to gain, how does it feel to breathe? The answer is, it's like magic. i don't cough. Ever. At all. In fact I am learning how to cough, as it does not come that easily now, especially after being on the ventilator as long as I was. i have a saturation of 99%, sometimes 100% at rest and when walking or exercising. I can hold my breath for ever. I can talk and talk without choking or having a coughing fit. It's magic. There is nothing else I can say about it. It has been worth every struggle, pain, fear, and tear. It's been worth everything.

I don't want to stop writing, I have so much to say, but I am tired. My eyes are not used to the screen and typing quite yet. Before I go, I want to say a few things about my family. i can't leave that for another time. When I was unable to fight any longer, when I was that sick, and when many people gave up on a transplant ever happening, my family fought. They worked so hard, got me the best care, and each and everyone were ready to give up part of their lungs to save my life as a living donor. My mom and aunt were deemed too small, so my dad, brother, and Martin were all assessed and ready to go. All are a compatible blood type and all did not hesitate for a single second. When I think about that, well, you can only imagine. During the last month my mom has been faithfully raising Scarlett, who is growing healthy and strong. She has done such an incredible job, and its amazing to see how much they both love each other. Martin is the man that has done the impossible (the doctors and rehab people are completely shocked at the progress i have made during the past 2 weeks) and got me walking again. Moving, lifting weights, the whole deal. He is the reason why I am going to walk out of here soon. Once again proving to me that we're such an awesome team, and so utterly, without a question, almost to a fault, in love.

Ah, it is time to stop writing.

i have contemplated if I should post these pics, and I have decided to. If they are too hard for people to see perhaps because I am so thin, or due to the scar, or my breasts (what's left of them anyhow) just be warned. I think they are incredible. They will help me remember. These were done by Myles who's an amazing photographer, and someone who I am filled with gratitude for having in my life.

(Above: right side drainage tubes)

(Above: today at 95 lbs., ouch...gotta eat)

(Above: The Novalung scar)

(Below: The whole incision, two drainage tubes on the right, three on the left)

Mother and Daughter Reunite (+ Toronto Star)

Hi Everyone,
A lot has happened since the last blog update - and you'll be happy to hear that all of it is good news : )

Natalia is right back to full-steam-ahead recovery and progress, back to the second stage Step Down Unit after last week's setback, starting to eat food in mass quantities (she's currently only 88lbs from trials, tribulations & transplant with an ideal weight of 125-135lbs [I know, I'm sorry Nat, I just told them your weight:], gaining more strength every day, walking further and further, in better and better spirits, and continued monitoring of her new lungs have doctors concluding that they are a particularly strong set...and Natalia is adjusting to them superbly.

Natalia and baby Scarlett were reunited yesterday via a covert, undercover visit (children under the age of 11 aren't allowed in this part of Toronto General Hospital so Scarlett was snuck in - for any/all medical staff currently reading this thanks in advance for turning a blind eye). It was quite a sight to behold (see video link below).

The key components to Natalia's next steps are continued patience combined with food. Lots and lots of both (Natalia is busting to get home), but food in particular for critical weight and additional strength.

So, Natalia won't be home for Christmas, but she will be home soon. Exact date is yet to be determined because every day is a little bit different...sometimes 5 steps forward, other days a few steps back, but overall progress to the goal line which is the most important part.

Her hands are still shaking (cause cannot be determined....likely due to how under weight she currently is and not related to immunosuppressive drugs as mentioned in a previous post) which has been preventing her from getting online to start writing in her blog again, but her emotional and psychological healing from her too-close-to-death ordeal has been particularly tremendous in the last few days which has encouraged her to fight through the shaking and personally type a Holiday/Christmas message to all of you very soon so keep your eyes peeled....

All the Best and Happy Holidays To All,
And continued thanks on behalf of Natalia, Martin, Scarlett and family for your incredible interest, support, thoughts, prayers, love, offers, wishes.

Myles Slocombe
PS: FRONT PAGE COVERAGE WITH UPDATE ON NATALIA&FAMILY's JOURNEY in the TORONTO STAR:
http://www.thestar.com/living/christmas/article/742570--a-breath-of-life-for-christmas?bn=1
Special and ongoing thanks to Reporter and friend Barbara Turnbull