Happy New Year

It has been a long year, but it ended incredibly for us and included some very tough times, but also some incredible ones. The births of Scarlett and Sophie, my wedding to Angie and Natalia's lung transplant made 2009 a year I won't forget. At times it really did seem like way too much and literally I lived each day one day at a time. All plans and schedules (except the hospital visitation) went out the window.

To be honest, I really don't know how we all got through it intact. Almost unbelievable. So on the eve of 2009 I am looking forward to a new beginning in 2010. A new year with some nice simple goals like being a good father and getting back to a nice active life (I miss that like crazy). Can't wait to start biking to work and exercising on a daily basis again. I am motivated for it again the way I haven't been in quite some time and I can't wait to take Sophie on her first run this spring. Hope you like the running stroller pumpkin :)

Happy New Year to everyone, and wishing you a great year.

John
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She writes

We all knew that Natalia was going to write sometime and she did not disappoint. Well done sis, especially the pictures, simply incredible. Those are scars to be very very proud of.

Here is Natalia's blog.

John

Xmas

Well, Xmas came and went, we sort of cancelled it this year because it has been a long year. BUT we did have an incredible time meeting up at TGH. We all haven't seen each other together in many many months since we have been doing shifts at the hospital with Natalia, and literally can't afford to have too much time overlap. So since Natalia has been doing amazing and she was up for a get together we decided to have our Xmas at the Patient Atrium at TGH. We all gathered at 2pm, all of us including the girls (Scarlett and Sophie), my parents, martin, martin's parents and Angie.

It was really great to see Natalia, see Scarlett and also meet her niece Sophie for the first time. Sophie was born one day after Natalia was put on the ventilator. Natalia had big plans to come to see Sophie right after the birth, even though she was so sick, she wanted to make it to Mount Sinai to see her shortly after birth. It didn't happen quite that way, but this was just as good. Sophie got to meet her favorite aunt in a much much better state and she can't wait to spend a lot of quality time with her in the future (she tells me this every day :)

So overall I can't remember a Xmas that i think more fondly of, it was nice, simple (or incredibly complicated, depending which way you look at it) and it really was what Xmas should be all about. Here are some pics from the day.

Sophie and Natalia

Scarlett and Natalia

Proud grandparents

Patient Court (4th floor atrium at Toronto General Hospital)

New Toronto Star Article

Quick update on Natalia. The last few days have been a lot better for Natalia, she is much better and really getting stronger and stronger. She is more and more mobile and yesterday literally spent the entire day out of bed. This morning she is sore as if she ran a marathon, her calves are killing her today, but this is good pain. So pretty good xmas day (and for those of you that know me, you know I am not a big xmas fan).



Also today is another article by Barbara Turnbull in the Toronto Star. (link to the article here) Barbara also wrote about her own story (link here) and for those of you that have lived in Toronto you certainly remember the shooting that changed her life in 1983. Barbara's life is a true inspiration to me and she has been such a huge part of our journey through this. Her gift to Natalia, the Jesus statue that was given to her 25 years ago while she was fighting for her life is so incredible that I don't have the words to describe it. I am sure Natalia will keep good care of it and pass it on when the time is right. Thank you Barbara.

Recovery

Quick update on Natalia's recovery. Natalia is making big strides everyday and getting better each day. Some days are still very tough with setbacks, some big some small, but overall her recovery is moving in the right direction for sure. She struggles physically and emotionally with the scope of the recovery, but the most important part is that the lungs are working great. She breathes the way she hasn't been able to in a very very long time. Physically she lost a huge amount of weight through all this and now is starting to gain that wait back and this will help with getting back on her feet. She does a number of physio sessions a day which include exercises in the bed and also walking around the 7th floor transplant unit with the help of a walker. Each day is better especially when you look at the progress a week at a time.

One of my highschool friends who is a transplant surgeon in the UK describes having a lung transplant as "being hit by a bus", if you survive and the lungs work, all the other parts that were hit to need to recover as well. Emotionally this has been incredibly hard on Natalia. She knew her CF incredibly well, understood how to battle against it, even though it was a battle she couldn't win. This is all new, new medications, new problems, new drug side-effects and getting a handle on all of it will take her some time, but I have no doubt that she will get through it.

For me, this is literally the first time in a very long time where I am not worried about her immediate survival, I can see the lungs working, her not struggling for each and every breath and that is simply incredible.

1 month

So Sophie just made it through her first month. All is good so far and angie and I have adjusted to life with her in our lives. She is growing and changing so quickly and our doctor is happy with the progress. Not going to start quoting you any weight and height statistics since I don't know what percentile I am in for weight and height. All is well and we are thrilled and so far she has been a really good baby so we feel quite lucky about that. We have also been given the green light to feed on request, so we don't have to try to feed her on the 3hr schedule anymore, so maybe we will be able to sleep through the nite soon (scarlett has been sleeping through the nite from month 2, but I don't think we will be this lucky).

So she is still cute and blond and growing like a weed.

John

Normal... a clarification

I often write the blogs as I sit by Natalia's bed at the hospital. If she takes a nap or is sedated, I have time to think and write. I don't often re-read any of the posts, I probably should, but don't. Last nite, I was reading a number of blogs that I follow, and I happened to re-read my latest Natalia update. I didn't like the way it came across, especially the part about things being "normal". I really didn't mean to imply that our life is not normal right now. Normal might just not be the right word for it. I am fully aware that a lot of the readers of both mine and natalia's blogs are dealing with exactly the same situation as we are, and I am sorry if my words offended. I hope they didn't, but let me clarify anyway.

Normal is different for everyone. Our normal has included CF and now a Double-Lung Transplant. It is what we know. I didn't mean to imply in any way that our life is abnormal, it is what it is, and we just roll with whatever comes next. Normal is the wrong word here since it is hard to define and me implying that normal doesn't include hospitals, surgeries and illness is just the wrong statement. Actually, to be honest I think we have in my opinion the most normal life ever (especially Natalia) and to be honest we don't spend too much time thinking, what if... So this to me is as normal as it gets.

Sorry to all the readers.

John.

Stepdown

It has been a week since i wrote last, sorry about the delay. Just been taking it easy and enjoying the last week of my break from work. Sophie is now 3 weeks old and i have to face the reality of not staying at home for year (which i would love to do). I am excited to get back to work since it means that life is returning to normal a bit. Not fully normal, since that will mean Natalia is not in the hospital. I will consider life to be normal when anyone in the immediate family doesn't visit a hospital on a monthly basis, so 1 full month without a hospital visit. It has been years since that has happened and it might be quite a while until we achieve this, but it is a nice goal to have. A quick estimate for this year is that Natalia has been in the hospital for the better part of 5-6 months this year and my mom, dad, martin, angie and I have been there every single one of those days, so a month without it would be epic, we wouldn't know what to do with all the spare time :)

So as you have been reading on natalia's blog , she is now in the Transplant Stepdown Unit at the Toronto General Hospital. Stepdown is on the same floor as the ICU she was at before and immediately after transplant. The main difference is that there is less staff here because the patients do not need as much support. So now she is off the ventilator full time, has been for quite a while and all her vitals are good, stable. The progress is slow, but since she was in such as critical state before the transplant, it is probably expected. She still has the tube in her throat from the traech, and the tube will be taken out in the near future and this will enable Natalia to talk. I think this will make a huge difference for her. As any of you that know Natalia (or me for that matter), we like to talk :) I think it would be hellish to not be able to say a single word for almost a month now. You can see it in her eyes, she has so much that she wants to tell all of us, but she can't. So we communicate by head nods and she writes on a piece of paper for us. Actually for me, it is really hard to gauge her recovery by anything, except her writing. When she was in ICU prior to the transplant, she tried to write on a piece of paper, but it was so difficult to read the notes, we kept them, and i can't wait to laugh about them with her in the near future. After the transplant, she was having a lot of trouble holding the pen, but the notes were a bit better. Now she can hold that pen and can write a note quite quickly. All the O2, CO2, saturation, heart rate, breathing rates, white cell counts, blood sugars, etc, don't tell me as much as how she holds that pen and writes on that piece of paper. So each day she looks a bit stronger, moves a bit more and writes with a steadier hand. I will take that.

She is also doing a lot of physio with the staff here. We met the physio staff a few months back when I took Natalia to it twice a week for her physio with the other folks on the waiting list and also some of the people post transplant. You could clearly see on which side of the operation each person was, either on oxygen, working so hard to walk on the treadmill or doing the exercises with a smile on their faces. Can't wait to go back to that room and work with Natalia through those exercises. Just can't wait.

So that's about it for now, slow and steady, but progressing each day and that's all that matters.

John.

Day of fishing

For anyone that knows me, they know that i love to fish, i have no idea why since a lot of times i catch nothing and have to wake up at 4am and all that, but there is something about it. Earlier this year i made a vow (apart from getting married) that i will go fishing once a month every month. Seems simple enough but with all that has been going on November wasn't looking great, but luckily i was able to get out on Nov 29th. I went down to the Niagara Whirlpool with a good friend of mine and we didn't catch anything, but it was so nice to be out there. Life felt very normal for a few hours and it felt like maybe, just maybe it will be very normal from this day on. So we fished, watched others catch fish, watched fish jump around all over the place, got cold and drove home. Nice way to spend a sunday morning.



As for Natalia, things are moving along great. She is breathing on her own in really long stretches (all saturday and sunday basically) and will be moving to the Step Down unit soon, maybe today or tomorrow. We are so happy with all this. She also is getting access to her computer and bberry so i expect that she will start telling us her side of the story sometime soon.

Sophie Update

Sophie is almost 2 weeks old, big day tomorrow as we go for her 2 week doctor's appointment. Things are good, she is above her birth weight and is eating well and sleeping at night. We got the routine down so really not a whole lot to report on the Sophie front.

Angie and I spent a number of days at Natalia's house during and immediately after the lung transplant. Martin and dad were at the hospital while I was with the girls, so it was Mom, Angie, Scarlett, Sophie and me. It was a really great 3 days during which we got to rest (Angie and I were exhausted) with all the assessment stuff and the ups and downs of trying to be parents during Natalia's hospitalization. It was nice to spend some time with the family. We have been in almost constant contact, all of us with our Blackberries in hand and seeing each other in hospital rooms and hallways. It was a very tough, but also great few days. We took pictures of the girls, and Angie and I got into our "being parents" routine and at this point we feel pretty good about things and are now able to take some naps during the day as Sophie sleeps. Our routine is like a marathon training program, we chart everything down and feed the baby to a schedule (funny, but what would you expect from a Lab Technologist and an Engineer who enjoy training for marathons and triathlons, this is what we know :)

.
As you can see from the pictures there is a bit of a size difference between the two girls, Scarlett is now 4 months old and Sophie is 2 weeks tomorrow. This picture just makes me laugh. I bet they will laugh about it too in a few years. Scarlett kept reaching for Sophie like she was a toy. Haha.

So that's my update for now, things are good and we are enjoying each day as it comes and trying very hard not to worry what's around the next corner.

The call

So on saturday Natalia got the call that the lungs came in. It was incredible and it didn't seem real at all. Martin called me and we cried on the phone because the call came just in time. When I saw Martin's name on my phone, I didn't think it was good news, I actually thought he was calling for us to meet the surgeons about the living donor option. We were ready to do this, and even though there is no choice to make, it is a difficult thing to wrap your head around. But it never got to this because a donor was found. Once we got the call the lungs were assessed to make sdure they are viable for transplant and this was a very nervous time since it was so close, but it could be just a false alarm. It wasn't. The surgery started early evening and took about 10 hours. We were told that it went reasonably well but that she wasn't out of the woods just yet. I will leave the technical details to Natalia's blog at www.natandmarty.blogspot.com which is updated by a great family friend, Myles.

So over the next day we waited patiently at Natalia and Martin's house, letting the new additions to the family (scarlett and sophie) distract us from the severity of natalia's conditon and the craziness of the last number of months. But things are stable and condition has slowly been moving in the right direction and the donor lungs are working great and Natalia is breathing with them. What still blows me away is that she doesn't have CF in those lungs.... 30 years of that horrible disease have been removed.

So that's the update, but I also would like to say thank you to all donor families out there. It is the most incredible gift of all time, but one that requires someone's father, mother, daughter to pass. It makes me cry thinking about the hell another family must have gone through in order for someone on the a waiting list to have another chance at life. There are more than 4000 others like Natalia waiting to continue their lives and their lives could be changed by the extraordinary act of being an organ donor.

Thanks.
John (Natalia's brother)

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NovaLung & other firsts

So to start with Natalia was placed on a device called NovaLung this evening to reduce the CO2 that her lungs cannot get rid of. It is amazing technology that we are so glad is here and hopefully it will bridge the gap until the donor is found or until we proceed with the living donor option. All of us in the immediately family are B+, which is really good in this type of situation, me, my mom Hanna, my dad Chris, my mom's aunt Maria and baby Sophie (i think baby sophie is a little too young to donate a lobe :) We have started the assessment process at the Toronto General Hospital since it might be a great option if a deceased donor is not found very soon.

So apart from that, Sophie today had a very nice night of sleeping (we were much better as parents) and she was amazing all day today. Feeding is going really well and we had our first paedtric appointment and met our doctor. It went great and Sophie is fine. We also got some great new tips that are slightly different than we learned tought at the hospital, but overall all is well. She is gaining weight and we didn't feel quite as useless today as we did yesterday. Anyway, another busy day of ups and downs, but nothing new to this family and like always we will get through.

Can't wait to get the call.

Natalia on the list for 3 months and 12 days
Sophie is 6 days old.

John

1st nite at home

So after 3 great days at Mount Sinai Hospital they let, Sophie, Angie and I to go home. We were discharged, it took basically all day and at one point, they made us sign a form that said that we know how to take care of an infant and we both just laughed. We got her in her carseat and she just went to sleep and slept the whole way home. That was good, I had a vision of her screaming the whole way home while we sit in the evening traffic. But she was just great. We introduced her to her new home and her room. Angie was totally exhausted so I tried to do everything except the baby feeding. Overall it was our best nite yet and any problems were mostly our faults and not anything Sophie was doing. We were able to get her on a routine and the 3 of us actually all slept at the same time.

Angie is doing ok as well, still pretty beat-up, but we got her pain meds so I am sure she will be better in no time at all. The section is a serious procedure and I don't think women that have one get enough credit for what they go through. So that's about it for now, I will get the pictures organized, and post some more pics of my beautifull daughter. She makes me smile even when I am sitting at the ICU watching the ventilator breathe for Natalia (all stable).

John
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Across the street

So today I went over to see natalia for the first time since she has been moved from St. Mikes. It was tough to see, the ICU is a part of the hospital that you hope to never have to see but you are glad is there. The hospital is directly across the street and I made it there for an hour this afternoon while Angie's mom helped with the baby. I wasn't really prepared for what I saw, but I got a huge sense of relief from how professional the facility and the staff are. It gives me a lot of confidence for the tough days forward. Natalia is sedated, but can respond and I was able to tell her about Sophie and Angie being fine and that lots and lots of people are working hard to get those lungs. It was tough to see her in that state, I left after an hour and got some relief from my baby across the road at Mount Sinai. Sophie doesn't know how much easier she has made things for me and angie in her 2 days on earth (even considering that I haven't slept in almost 3 days).

Also, I was able to figure out which window is natalia's room and the 3 of us here can look at it anytime we need. So that's the update. Thanks for reading folks.
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Sophie Picture

Here she is. cute, blond and healthy. And she cries like crazy when hungry which is all the time.

John

Sophie day 2

So we though day 1 was difficult, but they kept telling us the 2nd nite is rough. Well they didn't lie. Sophie was in one of 2 states, happy eating, or crying at the top of her lungs. So basically angie breast fed non stop from 9pm till early this morning with a few minutes of crying in between. They say this goes away, I hope they are non lying about that part :). But really all is well, the milk will come the important part that baby and angie are fine, even though both might be a bit tired. I don't count, I just fetch stuff and hold baby when she is screaming.

Natalia is doing well, she had a bronchoscopy and they determined that the source of the bleeding is not as serious (or big) as they thought. She also slept well and is stable. I have not been there so I am sure to be symplifying things, but I am thinking all positive thoughts at the moment and know that the people at TGH are the best in the world at lung transplants and are working very hard to find these lungs.

Thank you for reading.

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Introducing Sophie

Hello all, today's blog is going to be all good. Yesterday was simply an incredible day, Fri the 13th at 9:43am Sophie was born. Both Angie and baby have done great. I know the majority of the readers are women so I thought you would appreciate a nice post about the new addition to our family. Sophie was born by c section (I was not prepared for what I saw by the way), but anyway, everything went smoothly and I was handed a beautifull, blond baby. She is stunning, and I know all parents say that but I am pretty sure she is a cute baby, but that's not as important as that it all went ok and everyone was safe. The people at mount sinai hospital (which is right across Toronto General where Natalia is) were great to us. Dedicated and have been with us for 24hrs providing great support to the 3 of us, highly recommend as a place to have a baby.

Anyway, the day went great, we got the breast feeding going which as a man is just incredible to see and have been up for 24hrs now. Not because of the baby, but just difficult to sleep when you worry about something, me about angie and sophie, angie about baby..... We will get better and I think sleep is on the horizon. Sophie likes to cry so far, screams actually, but it doesn't last long, almost as if checking if we are still around. As soon as she knows that we are she is fine. So all is well and fatherhood is more incredible than I thought it would be.

As for Natalia, we continue to pray. She is at the best place in the world to wait and get a lung transplant. My mom, dad and martin have been there during the visiting hours and also had a big meeting with the transplant team. I don't know exactly what was discussed since I am across the street, but the team is optimistic that the lungs are coming any time. Natalia is stable so let's keep the spirits high and I can't wait to tell all of you that the call has come. Nothing will make me happier.

John

P.S - I hope the post is coherent since I am writing it on my blackberry without any proof reading.

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Thursday morning, 4am

Not the message i wanted to share with you, but last nite things took a turn for the worse. Natalia struggled in clearing her CO2 levels and a decision was made to put her on a ventilator. She is now resting and is not in pain, so overall this is a good thing since she won't have to suffer the way she has for the last number of months. She is still at St. Michael's hospital but will be transferred to Toronto General Hospital later today where she will wait for the lungs to arrive.

So keep praying and hoping and spreading the word about Organ Donation. I am really sorry to have to tell you this, it really hurts me to write it since i know how much you all care and love Natalia, and how invested you are in her recovery. I have a strong belief that a donor will be found. Really do.

Thank you from our entire family.

CBC Does it again

Hello everyone, CBC aired the second part of the show today. It was very well done and here is the links to both parts of Natalia's Story, Part 1, Part 2. I found this one tough to watch, not easy to see yourself on TV talking about something this personal. But, the point of this is to raise awareness about organ donation and both parts do that quite well. So please forward to your family and friends and please comment and share your stories through the CBC website.

Thanks for reading.
John

Another morning

Quick update on natalia, overall she has had a few decent days. No blood in the nite and she has been able to get some sleep, not in the middle of the nite, but in smaller chunks throughout the day. I will only be here this morning and thursday since on Friday at 9am, baby x arrives. Very excited about it, but will not be able to be here and help out in the mornings (for a few days at least). So things are ok right now and we are starting Natalia's morning ritual right now, pain meds, pills, masks and physio at 8.

3 months and 5 days on the list.

2 days till Baby X arrives.

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CBC Part 2

So yesterday I did some filming with the CBC for Connect with Mark Kelley, part 2 of the story about Natalia and her transplant journey. Let me tell you, that being on camera is not easy. It also doesn't help talking about something as personal as Natalia's illness. The CBC guys were really great and made it as easy as it could be, and I am sure that with some editing, air brushing, they might make me sound coherent (maybe). Anyway, it needed to be done and let's hope that it helps people to sign their donor cards and discuss this topic with their families. So thanks CBC, doing this story for sure will save people's lives.

As for Natalia, she had a better nite and this morning looks promising so I am hoping it is a very boring day.

3 months 4 days on the list.
3 days till Baby X arrives (no name yet, so my mom and Natalia call her Baby X)

Another monday

Yet another early monday morning update. Natalia had a good nite till about 3am until the blood came again, it is happening every second or third nite. It didn't last long, but it takes a lot out of her physically and emotionally. Just not easy to cough up a bunch of blood. Since, she has been resting, not really sleeping, but just dozing off until the physio starts at 8am. Maybe today again starts rough, but is a good day afterwards. Let's hope again.

So another nite without the call, but another day for the call to arrive.

3 months and 3 days on list.

4 days till my baby arrives this friday unless the little bugger decides to turn :)

John

Weekend Update 2

Last nite was very good for Natalia, she slept through the nite, and there was no blood. So it is a good way to start the day. Not much else to report and lets hope the day continues the same way.

In other news Angie and I are 5 days away from being parents. Yesterday we spent the day with Natalia's daughter Scarlett, helping with some playing, feeding and we watched an incredible bath time. She loves her bath time, and Martin is a bath time expert.

3 months, 2 days on the list.

Weekend Update... part 1

So yesterday was a good day after the huge ups and downs of wed and thursday. The medication schedule is sorted out, pain is being managed way better which means less episodes. Last nite was looking good, but as it seems to be happening every few days, the blood came back again. We really don't know why it is happening, something is going on in there, maybe a combination of the meds, we are just not sure. So Natalia didn't sleep since 2am. I came in early am and things were stable, Erika, who does amazing physio / massage with Natalia came in on the weekend (on her free time by the way) to help. I can't tell you how much things like that mean to us at this point. Simply incredible to see people go out of their way to help Natalia. We won't soon forget things like that. So now Natalia is sleeping on the bipap and isn't in pain which is pretty much all we can ask for.

3 months 1 day on the waiting... (at the top of the list if i can add).

CBC

Hello all, just something a bit different to report. Yesterday, the CBC (canadian broadcasting corp) did a 3 part piece on Natalia. The first part of the story aired yesterday at 7pm on a show called Connect with Mark Kelley, here is the link:

http://www.cbc.ca/video/#/News/TV_Shows/Connect_with_Mark_Kelley/ID=1320739141

I thought it was really well done, Martin, Mom, Scarlett and Natalia really were naturals. The second part is coming up either monday or tuesday at 7pm on CBC NN.

Anyway, that's the update from this morning, I am with Natalia and she has been sleeping well. Today is officially 3 months on the list. Long time to be waiting for a phone call.

Sleep and a lot of it

Another update on Natalia today, yesterday was a very tough day, especially in the morning, but the day got better. Her pain is being managed better, and with some drugs to lower the anxiety, Natalia was able to sleep, she slept the majority of the afternoon and into the evening. In the evening, she was feeling good, but coughed up blood, and as a result was checked out by the ICU doctors. The tests all came back good, and she was able to stay in 6 Bond (CF wing of the hospital). I was not there last night, but martin was there all day and my parents through the night. Natalia continued sleeping through the night and most of today, something in the range of 16 hours.

So overall things look good right now, she asked me to write to keep you all up to date and thank all of you for your prayers and support.

Rough way to start the day

This morning was rough, I got here at 5:30am and natalia was awake after not getting a lot og sleep during the nite. Not long after, she got another big panic attack. It was really quite serious and scary. I could see the panic attack coming and we tried to focus thoughts, but in the end it hit her full on. Together with some great staff here, some pain meds, and a number of long hours, natalia worked through it. These attacks just show up and go away out of nowhere and we really need to get a handle on them.

Right now things are calm, she is sleeping on the bipap. So let's hope it stays like this today. If anyone that is reading has any tried and tested methods for diverting or working through panic attacks, let us know since we need to have them under control.

Thanks for reading and I will keep updating you all.

Another day

Another quick update since Natalia is not writing very frequently, yesterday was another day with some good and some bad. The morning was ok, we worked through it without any major obstacles and towards the end of the morning Natalia had her weight checked and she gained weight which is pretty awesome. So all together all the major numbers are good right now, but later in the day found out that the bottom airways are collapsed. Not sure really what this means, because we don't think she has used those parts of the lungs in some time, but it is a change in the xrays so not good. As a result of this TGH was updated with this latest development and Natalia's pain meds have been upgraded to make sure they are more steady than before. Hopefully this will make it more manageable and also it explains the reasons for the pain.

So overall things are not a whole lot different, but never a dull day here, and we would love to have a nice dull day. So lets hope today is better and more stable and we just keep going one day at a time and fighting whatever comes next.

Monday morning

So we had a tough weekend, but yesterday natalia had a great day, things for sure were better and most importantly the panic attacks were under control for the moment. She battled very hard all weekend and it really paid off yesterday. Physically, her breathing is quite good and her numbers are ok so that is good for now, but it was incredible to see what physical harm can be caused by these panic attacks, she describes it well in her blog so i don't need to go into details.

Today, she woke up in pain after sleeping in, we missed the timing of the pain medication (which we won't let happen again), but Natalia battled through it, focused on the right things and reminded herself that it is just pain and that her breathing is good and right now that is pretty much what counts.

So that is a quick update, keep praying and hoping and encourage all to sign those donor cards, speak about it and soon I will be writing from Toronto General after the transplant.

A Few Rough Days

Hello everyone, just a quick update. Natalia has had a few tough days at St. Mike's, not that the previous days were easy. Not sure what it really was about, but things seem to be getting better, so lets keep hoping that is the case. I will keep you all updated, but I have a feeling Natalia will write soon, if she is up for it. Lets hope, i like reading her blogs a lot.

On other fronts, the article about Natalia in the Toronto Star was incredible, i didn't expect that kind of coverage and response from the readers. Barbara Turnbull really did a stunning job with this, and I am sure in the process encouraged some people to think about organ donation. Not much else to report, except that i am now doing morning shifts at the hosptial, 6:30am till 10am or so. Mornings are tough for Natalia so having someone here is important and since Angie is a very very early riser (which makes me a very very early riser), 6:30am is fine with me. I come in and watch Natalia sleep for a few hours which is always nice.

Oh yeah, our baby is coming in less than 2 weeks. Incredible, can't wait.

John

Organ Donation, some facts

Organ donation is quite close to my heart since as I write this my sister is waiting for a double lung transplant. But if I think back, I have had a number of run-ins with the need for organs in my immediate circle of friends and acquaintances. A coworker a number of years ago needed a bone marrow donor and never received it and passed away from the cancer. A friend of mine generously donated a part of her liver to give a anonymous child a chance to live (one of the most incredible acts ever to be honest). And now I have someone that needs a transplant to simply continue her life. It is that simple for the 4000+ Canadians that are waiting for organs and Natalia and I have met a number of them while attending her physio sessions at TGH. These are just people that want to continue with their lives. Some are like Natalia, who has known that one day she will need a transplant while most developed their disease later in life. This happens and it happens in a lot of families, yet organ donation is almost never discussed in a family setting.

I think that needs to change. In my very unscientific study, I really believe that most people are in favour of organ donation, and want to donate their organs at the end of their lives, but few sign their cards or even better, discuss their wishes with their loved ones. This will make all the difference in my opinion, and one day that decision will give someone a chance to live. Very few acts, especially ones that are this simple, can have such drastic outcomes, sign a piece of paper - one day a bunch of people live. Wow.

I also think that our governments need to treat this topic more seriously, as we all live longer and longer, I think the need for organs will increase will dramatically increase. Some countries have gone with the automatic opt-in system, meaning that unless you explicitly specify, your organs will be donated. Most countries are have not done this and like Canada depend on the very very few that donate. Here are some stats about organ transplants in Canada (2008)

• There were 4330 people on the waiting list for an organ transplant.
• 215 people died while waiting for an organ transplant.
• 2083 trasplants took place. 1541 of those transplants were made possible because of deceased donors.
• 80 people can benefit from a single donor.
• Canada consistently has one of the worst organ donor rates of industrialized countries: about 13 donors per million people, compared with 20 per million in the U.S., and more than 31 per million in Spain (and Canadians think we are better than everybody.... i am not a doctor or a statistician, but this number of 13 is too low by many factors)
  

Those seem like quite low numbers to be honest, in a country with over 35 Million people (and i remind you that everyone dies at some point), I think there should be plenty of organs available for the 4000+ that are waiting. This Wikipedia article addresses a lot of the statistics worldwide.

So... go speak with your family and make sure they know and respect your wishes. It could save someones life.

3 Weeks today... Sweet God.

So it looks like 3 weeks from today i will be a father. I have known that this day is coming for quite sometime... 8 months roughly, but really until you get close, it doesn't quite sink in. The only feeling like this that i have ever experienced (fear, mixed-in with excitement) was when i was doing the Ironman (by the way i am not comparing a pregnancy to a stupid triathlon). I trained like crazy for a very long time, was anxious about the race, but I just kept doing the training not thinking about what the race really is. Not even before the race did it really dawn on me what i am about to do, swim 4k, bike 180k and run a marathon, 42k. The specific moment that reminds me of what i am feeling right now, is about 175k into the bike, when i thought, NOW i have to run a marathon.... I knew what i had to do and was ready, but the reality didn't really set in. This feels very similar, i really knew that i was having a baby, girl, but now, 3 weeks today it suddenly feels incredibly real. I am so excited, going through the last 8 months, watching Angie change a little bit each day has been amazing. During this time, natalia welcomed Scarlett into our family and this has given me some exposure to babies, and let me tell you that i am by no means a natural. I really don't know how i will manage this first little part, but I am very happy that Angie has the confidence and experience. I have got to spend a fair bit of time with Scarlett over her first 3 months and even fed her once or twice and these experiences have been traumatic for me, I am sure this will get better, but I have a feeling it will be a funny start during which i sit and watch the baby sleep to make sure everything is ok. At this I have considerable experience as I have spent a nite or two at St. Mikes watching Natalia sleep. For many hospital visits I have been the Night Man.

I am very eager to start and learn and be totally involved in her life. I have always wanted to be a father would have had children 10 years ago, but was never in a situation that felt right. I am now, and couldn't be happier about what is about to happen 3 weeks for now. I am already in awe of the fact that we have managed to create life and simply can't wait to meet my daughter (there is only so long you can talk to a belly, but i have put in some good hours of "conversation"). So that's the update for now. I just can't wait, so please wish us luck.

John

Happiness

Happiness in my opinion is a very funny thing. When you have nothing in life to be unhappy about, well, during that time a lot of us are quite unhappy. Only when life hits you and shows you what real unhappiness could be, only at that point, you realize that you might have wasted a bunch of years. Perspective is key to seeing all this, and taking joys in life when they are there is very important. Over the last number of months, happiness should be difficult to find, with Natalia at war with her CF, the seemingly endless wait for those lungs, you would think that these would be miserable months... and don't get me wrong, things are really tough, and so tough for Natalia who is in the middle of all of it. BUT, also these last few months have had so much joy, with Scarlett joining our family, Angie joining the family officially yesterday (yes we got married) and our daughter on the way in 5 weeks. These months have made us all closer, all focused as a family. I have seen my niece way more than i would under other circumstances, and have spent some great times with Natalia going to her pre-transplant physio at TGH. I really looked forward to each of those sessions, and i really hope that Natalia regains her strength and we can go and continue the workouts.

A good friend of mine, that i won't name here, went through a very traumatic near death experience in his immediate family (out of nowhere). He said something a few weeks ago that really touched me: "life happens when you are making plans".... Crazy, we are always planning for the future, chasing stuff and we ignore a lot of things that are happening today. I wish we didn't need near death reminders to think about life and what is important.

Get some rest sis and lets keep praying for those lungs.

Luck

This is my first blog, i have been reading my sister's blog for quite some time, but really have no idea what i should write about. She has an incredible blog at www.natandmarty.blogspot.com. As you can see i am really quite creative taking www.jbandangie.blogspot.com. Wow, this blog might be awesome :( I will be shocked if i ever have more than 3 people reading this.

So a little bit about me, i am in my mid 30s and have thought about doing some blogging for some time, mostly because of my sister. Reading her blog has brought me a lot of great moments, as well as many very sad ones reading about her struggles with Cystic Fibrosis (CF). CF is a tough little disease, you can find out more about it on Wikipedia, but i would just describe it as relentless and unforgiving, it just keeps going at your lungs and other organs and it doesn't give up. As a brother of someone who fights this disease every day, i have a lot of weird feelings about it, to start, i am the one who got lucky in the Genetics Lottery that is life. My parents both being carriers had me first who was perfectly healthy (3 of 4 chance), and my sister who wasn't (1 in 4 chance). Well, that is just not fair and my parents didn't have any way of knowing that especially if your first child is healthy. I don't feel guilty about it, but that thought, of the sheer luck in that, has been a huge part of the way i live and the way i think about everything. It is just luck, not up to you at all.... sometimes you win, sometimes you lose.

I think you should be happy when luck is on your side (but don't take too much pride in it) and when it isn't (which happens to all of us at some point in life), fight and hope that you have some good luck next, that's about all you can do.

My sister's life has truly been incredible through all the complications, hospital visits, treatments, physio, IVs, Emergency Rooms, month long hospital stays, etc, etc, that come with having a Terminal Disease like CF. Despite that, she has managed to build an incredible life that includes a great husband and a stunning daughter (you can read all about it on her blog, i wouldn't do it justice). All that is something to be very very proud of.

So at this point as her battle against the late stages of CF continues, we hope for some good luck, in the form of a lung donor. She is listed and waiting for a double lung transplant and has been on the list for over 2 months and now waiting it out in the hospital. These are tough times, but i really do think she will get lucky on this one.

In future blogs, as i get better at this, i will discuss what it's like being a sibling of someone with a terminal disease and since I am getting closer and closer to becoming a parent myself, i am sure i will talk about being a parent. Thanks for reading my first blog, i hope this gets easier.