Goodbye Eva

Sad day today, (Eva, 65 red roses) passed away today while waiting for her lungs. That statement really saddens me. It shouldn't be this way. Last year we came so so so close to losing Natalia mostly because of a lack of organs. I know anyone that reads this blog understands that this is a very solvable problem. Just so sad and unnecessary. I wish her peace and hope that wherever she is, she breathes easy.

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.

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

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.

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.