No time to write.... Let's start with baptism part 1

But I have lots to write about, just really busy lately, Sophie, family, work, enjoying the summer weather. Where to start, I guess I will start with Scarlett's baptism. That was almost two weeks ago. Ok, so as always, Natalia knows how to throw a good party and the baptism was one of those for sure. Since i am scarlett's godfather, i had a serious role to play that day and was a bit worried about holding scarlettcfor the actual procedure. (Scarlett doesn't care for me holding her right now, so I had a vision of a complete breakdown in church, but Scarlett was perfect). The church part was well attended with lots of family friends and a few special guest including Barbara Turnbull and her great friend Dini Petty (yes, that Dini Petty) and the three daughters of the woman that saved Natalia's life by donating her lungs (more on this in a second). Ever since the newspaper coverage of Natalia's journey, I have got to know Barbara a bit and she has quickly become one of my favorite people. You can just tell that she gets IT, and her continuing coverage of other transplant stories is going to save many many lives in the future and hopefully one day stories like Natalia's are just that, stories, and people just won't believe that in 2010 you could die waiting for a transplant. Anyway, i am so glad that you were able to attend and see how much things have changed in just 7 months. Simply incredible and I still really don't believe it.

Here is a few pictures from the baptism.

The whole team including scarlett, the parents and godparents

one of my favorite Angie pictures ever. love it, she might disagree.

Part 2 is next (the party at the house)

Thanks for reading.

John

Exciting new discoveries

I try to keep up on recent discoveries in the areas of organ transplantation. I think the future of it is fixing organs before they are transplanted and also the creation of artificial organs such as lungs or hearts. I thought this link was pretty cool, the idea that you can grow an organ or implant a bio-mechanical device in someone is amazing to me.

http://www.reuters.com/article/idUSTRE65N5AF20100624

But these ideas are needed since there just doesn't seem to be enough organs to go around.

John

Natalia, 6 months post tx

Wow, time certainly flies for sure. I really can't believe that it has been 6 months since Natalia had her transplant and Sophie was born (within a week). To me it seems like a lifetime ago, and in reality Natalia was in the hospital still in early january so it has only been about 5 months. So I would like to write a quick note about all this and celebrate this milestone.

I am very proud of you sis, you battled all of last year to get to the transplant and you certainly battled after you had it (this part i was not ready for) and to see you these days taking care of Scarlett and leading a normal life is really cool to see. I really don't have that much to say except again that I am very very proud and love you very much. Many years of good health sis.

Here is some pictures that Natalia posted on facebook.

4 weeks post

5 weeks post (at Toronto General Hospital)

7 weeks post

2 months post

9 weeks post

9 weeks post

5 months post

6 months post (and i can't do that)

Natalia on CityLine

Even though she is not blogging anymore, i am writing when she does important things. Today Natalia was on City Line which is a local Toronto talk / info show. She was on at 9am and 2pm. Here is a link to the interview she gave. The full interview is not yet available, i will update when i get that link.

Enjoy.

http://video.citytv.com/video/detail/74467268001.000000/Natalia-s-Story-Mar-30-2010/

PS - looking good sis.

Toronto Star... again

Well done Barbara, bringing the Transplant Story full circle. This will give me plenty of topics to write about, lots and lots to discuss here. I know i have said this many times to her, but thank you Michelle for making the toughest decision anyone should ever have to make.

Finding Hope in a mother's death.

As always I would say say go buy the Toronto Star (sunday) in print, nice pictures.

John

CBC Part 4

Quick update, for any of you that missed it, Mark Kelley's show did the 4th segment on Natalia and her segment. This one says it all.... Coming home.

CBC On a Mission, Part 4

John

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 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.

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.