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.

Facebook | Your Photos - Us - Oct., Nov. Dec. 2009 and Jan 2010

Facebook Your Photos - Us - Oct., Nov. Dec. 2009 and Jan 2010: http://www.facebook.com/album.php?aid=153546&id=541641274&l=86c9e0e426

Some pics from the past few months.

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 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