Baptism Part 2

So after the church part of the baptism was over, we all worked our way back to Natalia's house. Some walked, most drove. Since it was just around the corner angle, Sophie, Angie and I walked back from the church, baby needed to sleep anyway and she loves to sleep on the walks. I also had some additional responsibilities that day apart from being the godfather. Barbara needed help getting into the house because of her disability so I was going to help setup the ramp for her to get into the house with. (by the way if you don't know about her story you can read about it here ). I had doubts whether Barbara was going to be able to get into the house and unfortunately the entrance was just not accessible for Barbara to join us. I felt bad about it, but I know Barbara wouldn't want to hear it.

So inside the house the party was in full swing, hard to tell how many people came out, but quite a number, like 50 or so, I would say at the peak. Natalia knows how to throw a good party so there was plenty of food and the wine was flowing too. It was a great atmosphere. There were people that know Natalia, Martin, some of my friends, my parents friends, literally from all sides. Here is one of my favorite moments of the whole party. As I mentioned in the previous post, we had some special guests including the 3 daughters of the woman that donated her lungs and as a result of which Natalia got a second chance..... So during the party my father who is charming, loves to talk to everyone and who didn't know about our special guests asks one of the daughters how she knows Natalia. Just making conversation. Natalia quickly explained and there was a bit of crying all around. Simply incredible in my opinion.

Ladies, if you are reading, I just can't express how sorry I am for your mother's passing, but I am so happy that you were able to come and see what your mother's gift did. I have been thinking about it a lot lately and if others could see what has happened here, the whole Organ Donation thing would look a whole lot different. Thank you from the entire family. Thank you for coming to Scarlett's baptism and we hope to see you at future events.

John

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

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.

Back at TGH.

So today I was back at TGH for the first time in a while to help Natalia with the removal of a filter they put in to prevent clots. I never actually heard her say that she had one of these, but I always think it is good news when doctors want to remove installed medical equipment. I met natalia at the hospital and we had a really nice time while we waited. We talked about the girls and also talked about how crazy last year was. One day sis, we won't have this conversation, but it is probably still too soon. We shed some tears, but in general we were just happy to be in the spot we were.

The actual procedure went well, they were able to remove the filter and after another hour or two I drove Natalia home. To be honest, as far as the last year goes, pretty uneventful day at TGH and that is pretty much all any of us ever wants. Also Natalia shared the news with me today that she won't be writing the blog anymore. I was kind of surprised, but also not really. Completely understand what it was for and it has ran its course. I have no doubt though that all of us will hear from Natalia again and I consider myself not just her brother but also an avid follower of her blog.

It also saddens me, that Natalia had to deal with some of the things she did, the comments, the judgements. Since I was heavily involved in going public with the story (out of desperation for getting the word out about organ donation) I also feel like I should respond to it. Natalia said it well enough, if you don't understand why we went public and you in some way think that we did it for publicity, well, you are just missing the point completlely. We simply did it to get the word out, get the conversation started and move the cause along. I think that part for sure was accomplished. Natalia's transplant story was one of the most read stories done by the Toronto Star, and that is for a reason. People connect with it because they feel like it could be them or their child, that is in this situation. And that is the way we should think of it, it wasn't about Natalia, but about a few thousand Canadians who are waiting for organs and hopying and praying that they come. Some like Natalia get lucky and the organ arrives, but many (a quarter) are not so lucky. All of us, Natalia, Martin. Me and the rest of our family wish that everyone should get a chance at a new life. That simple, give people a chance to live, and organ donation can provide that chance to thousands in Canada.

Ok. Onward.

John

PS - I will make periodic updates about Natalia on the blog.
Sent on the TELUS Mobility network with BlackBerry

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

Update

A little while since I wrote, but things have been quite busy, but really settling down. As you all know natalia was discharged from TGH and is now home. CBC who has been an incredible voice for the organ donation cause did a spectacular job in their latest segment. Easily me favorite part is the interview with natalia's surgeon dr. K. He really summed up what all the media coverage was all about, a spotlight and a human face to the unbelievable things organ donation can do. He also spoke of the problem it is in Canada and our lagging behind most developed nations. Like he said, we are so extremely good at transplantation (in his case arguably the best in the world), but not as good at making the organs available and that is a true shame. I bet his team would love to have the "problem" of having too many lungs and not enough recipients, but that simply is not the reality right now. Our family fully plans to continue this fight for others that are waiting and we will need your help and there will be plenty of ways to get involved.

So that's it for now, Natalia is home, adjusting to what must feel like a new life without waking up in a hospital bed. Go sis Go !!!!!

John
Sent on the TELUS Mobility network with BlackBerry

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.

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.

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

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

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