Bronch and Biopsy day..and a whole bunch of good news

This week is my 3 month assessment. Monday I had clinic, PFT's, x-ray, CT Scan, and fasting blood work. Tuesday was the MRI of my brain. (Shannon I found out after I saw you Monday that it's not a standard 3 month test, so not to worry. I had it due to the fact that I was on the Novalung pre tx) Today I had my bronch and biopsy of my lungs. As we all remember, last time I had the bronch it did not go well. I had a massive infection and ended up back at TGH for a week on IV's, and then 2 more weeks on IV's at home.

I am proud to say that today it went really well. My lungs were clear, so the procedure was quick and easy. My doctor found no infection, and took a sample to check for rejection. So fingers crossed that goes well too. But so far I am thrilled that I had no reaction - and that the doctors are so happy with everything.

At clinic on Monday I was removed from a medication, which makes me very happy. If the biopsy results go well, I will have a whole bunch of other medications stopped also. I am VERY excited about that. Very exciting stuff.

On another exciting note, it seems like my leg pain is gone. Just like that. I did not take the hydromorphome this morning, and as I suspected, no pain. So I will continue to see if this goes well. I am still on the long acting oxycodone, but am being weaned off slowly. I am hoping to be off all pain killers within the next few weeks. Again, great news. By the end of March I may be off all my inhalations and half the medications, as well as all pain meds. A dream come true if this happens.

This week is also my last week of physio at TGH. This is so great for many reasons. I am ready to start attending the club gym, and I signed up for a few Yoga classes starting mid-March. I am also quite tired of being at TGH 3 or 4 times a week. It's too much. Now I will be attending clinic once every 6 weeks, and that in itself is a miracle. I will be leading a pretty normal life. Whatever will I do with all that free time...LOL!!

On a completely separate note......I have some great Scarlett news....

Today, my little Scarlett had her first poop on her potty!!!! We sat her down, and within minutes she did that magical potty business. I know this is lovely to talk about, but I had to share!!

And of course, a blackberry pic that we had to snap during the big moment!!

Here's to a good day, full of great news.

What a day, what a life.

(Angie and Sophie, John and Scarlett, and Martin - today)



(Scarlett and I, today at John and Angies)

Today was one of the best days that I can ever remember having. I remember the dreary winters I used to have. Filled with flu, and being cooped up in the house, sick for the past few winters. Oh how things have changed. Even with this pain I am still having in my leg, I have to say this winter is proving to be better than any I can remember.

Martin and I took Scarlett to visit his parents at their new condo. We had not seen it yet (since they just moved in) and wanted to see it, and them. Scarlett loved visiting, and we just enjoyed how much she has grown and how much she loves peoples company. After that, we went to visit Angie, John and Sophie. Which was amazing. The two girls getting to see each other again - it's been a while!! It was such a nice visit.

Today, in many ways was a dream come true for me. I have always wondered what it would feel like to go out on a beautiful day with my husband and baby (like so many people do, without a thought that it just might be an amazing thing!!). Well it was better than I expected it to be. I cannot believe this is my life now. That these dreams are coming true. That I have boundless energy to do the things that I am doing, that I can do my hair, put on some make-up, and look more like myself again, that I can carry my baby, that I can spend time with her and she can get to know me. It's all like a dream. I am very much aware of what tx is and can be. This is why days like today I relish in. Who knows what tomorrow will bring. I never count on it to be anything like today, but if it is, I will just relish again.

Today, more than ever, more than I have to this point, I feel truly lucky, grateful, and happy. All I need is my health, my baby, my husband, and my family and friends. Today I also know that the battle continues for so many tx patients out there. I think of these people often. They inspire me to live better, and I pray and think of my fellow conrads out there. The battle goes on, and I know the suffering and the pain do too. Hang tight. Your lungs, your freedom, is coming. Just hang on.

(John holding his goddaughter - today)

Today I especially think of Eva Markvoort, the 25 year old young lady from http://www.65redroseslivejournal.com/ that is presently battling for her life. On Thursday, Eva posted a very upsetting video of her and her family, sharing with the world that she is passing away. I don't know enough about this story to say any more. I just know how close I was to losing my life, I know what I felt and what I went through along with all those that are in my life. In knowing that, I feel endless sadness that CF takes so many young amazing lives, in the terrible way in which it does. I will pray tonight for Eva and her family. Tomorrow I will live my day to the fullest. We should all live life well, in prayer for her.

Daily Life - update

The past week or so have been very busy. I am able to do more and more, both around the house and around Scarlett. It's been great, but with it has come pain in my shins and feet. Terrible pain. So far it has been decided that this is all de-conditioning of the muscles. Of course that makes sense since I have not been walking for months, and now I am running around all over the place, and working out, and using all those little muscles in my shins and feet that seem to be the last to come back. The rest of me if getting better and better. I am gaining weight. Looks like about 2lbs per week now. I am at clinic each week, as they are following me very closely. I work out twice at TGH with the physio team, and even though it's at the hospital, I really like the staff and the work out I get. I tend to push myself and actually get a work out in. I also have my new spinning bike, which I LOVE! I can get on it any time during the day without leaving the house and get a killer work out in. Martin liked to lounge on the bed and yell at me while I do it - getting me back for all those years he'd do his work out and I would sit on the couch and veg out on terrible CF diet food. He's loving the new me! haha.

The big change is that I got my home spirometer. It's a little machine that measures my lung function at home. I do it each morning at 9am to see how my lung function is that day. The idea is to be as consistent as you can, as to notice change day to day. The instructions are as follows. Do it at the same time, after the same routine, 3 times (no more or less), and record the numbers. If there is a 10% decrease (as in I am always 2.75L and one day I am 2.47 or under) this is something to give the lung team a call about. We have a system at TGH called Easy Call, which is a personal voice message service that each patient has to leave messages on or get them from the lung team. It is brilliant, as communication between the team and myself is very easy. I call my number, leave a message, they call back REALLY quickly. Love it. Anyhow, for interests sake, these are my numbers right now, that luckily enough correlate quite nicely with the FEV1 numbers I get at TGH at the PFT lab.

Feb 6th 9am

Temp: 36.59c

FEV1: 2.37, 2.75, 2.81

Feb 7th 9am

Temp: 36.45c

FEV1: 2.58, 2.58, 2.66

Feb 8th 9am

Temp: 36.46c

FEV1: 3.11, 2.86, 3.01

It is important to do 3 tries, as not every time you blow will be your best. 3 tries seems to work well to get an accurate highest number. The number that they look at when you bring them your recordings is your highest that day. I tend to get better as I go, most people do I gather, but this morning I blew my best number first, go figure. The spinning is really doing it's job to get my lungs working, I like 3.11L!! Woohoo. I know that I usually speak in percentage terms, but since those are not true (depend on the machine etc) using liters is better practice. For those that are not familiar with what that means, when I was pre tx, I was about 0.56L at my lowest when I was able to measure (blow into the machine). I was just over 1.0L for the past 5 years or so, which is about 30% lung function. So you get the idea, that 3.11 is very high. Way into the normal lung range, between 80-100%. I know numbers are not everything, but they certainly paint a lovely picture of what lung tx can do for someone like me. Quite inspiring.

So that's the nitty gritty of my mornings. All this takes very little time. Being someone who always recorded how I was feeling, when, after what treatment, this is not a big deal for me. Measuring temperature each morning along with my lung function gives me a nice idea of how things are going. Gives the lung team a lot of information also when they don't see me. Being the true type A that I am, I love having this sense of control.

Of course this is not all that I do all day. Once I get the pills, and the tests out of the way, I am doing more and more and more around the house and with my life. It feels great, though I tend to over do it, and I pay the price with sore legs and feet. But I have a hard time sitting still.

Last week Martin and I went out with friends for the first time. We met our good friends M and P for a great Indian dinner, and since I have not been out for at least 8 months, and I have not seen M and P since the end of the summer, it was really a great night. In that time they had a baby, so we spoke a lot about Scarlett and their little K. It was something else, being a regular mom, out to dinner with her hubby with some friends, chatting away about our kids. Crazy, if you think where I was 11 weeks ago. The conversation still was mostly about the tx and all that went on, and I hope that I did not bore people to death. I have this need to talk about it with people, and I am starting to think I have to stop. Move on. Talk about something else. I don't want it to be all about me, I hate people that are all about them. But hopefully my friends know that it's something I just have to get out right now. There is so much to tell. I have to stop myself and remind myself that people have things to say about their amazing lives. Since I really do want to know, I am just too excited about my new life. I promise everyone out there, time will help me stop gabbing about it!! It's very selfish!!

Here is a picture from the night. I like getting a pic of me every week - so that I can record progress. Plus I love the fact that I am not in sweat pants or hospital gowns! Feeling pretty is something that you lose quickly after so many months in the hospital.

Martin took this picture when we got home. I wish I took one at the restaurant, but the four of got were talking and we never managed it. Next time!! So this is week 11. I'm keeping track =)

I know there have been some other questions that I did not get to answer from the Q & A, since they were added in during the last few days. I will take a look and answer them another time. Right now I am working on a few posts that are specifically for CF parents, as well as patients. Both to do with lung transplant, but also my experiences with school, work, etc. I feel like I have somethings to share.

Q & A: The Answers 1 of 2

Thank you all so much for all those great questions. I had no idea there would be so many! But I love it, since I often wonder does everyone reading understands certain medical CF terms, or wants me to clarify something. This is such a great way for me to write a post. I will go by name and questions. And yes I do plan to answer all, unless they are the same question. So here goes.

Q: Carol: "Will you ever know who the donor was?"
Q: Julia: "Also wondering who your donor was"
A: I have not yet spoken about the donor family, and there is a reason for that. I have sent out my thank you letter, which will go out through the Trillium network, and that will confirm the donor family if they choose to respond. That's the politically correct answer. That's me playing by the rules of the hospital and Trillium donor network. But the fact is our story with the donor family is a very special one. The day after my transplant, the donor family contacted John (my brother) via email since our story was so public. Due to timing and many other circumstances, we are pretty sure this is the correct match. Of course this only happened since our story was all over the media and it was fairly easy to put things together. This is not something that the Trillium network is happy about, though I want to be clear that this was not us reaching out to get this information. I am happy that they did contact us. They are the most generous, wonderful family, and I will be thrilled to write a post in the future about them. Right now I want and need to play by the rules and wait for confirmation that this family gets my letter. But I can tell you that they lost a dear loved one, very suddenly, and their choice to donate came at the only time it could to save my life.

Q: Winter: "Is it true that you will never experience CF symptoms in your new lungs? And if CF affects other parts of your body, do you still have other concerns with having CF?"
Q: Taryn: "Are there any residual CF issues that you have to deal with post tx? Does it affect other parts of your body?"
A: This is a common and really good question. The CF will never 'come back' in my new lungs. These lungs are genetically different, which means they do not have the gene that is malfunctioning and creating that thick mucus that ruins lungs in CF. So this is the good news. This means that treating these lungs is totally different than those with CF, meaning that the lungs behave differently. I have to get used to what I felt was CF infection, and what could be transplant infection or rejection. There is a lot of education that comes with that, so that you do not confuse old CF body to new tx body. I am learning. As for my other organs. I do still have to deal with other issues but they are minor, and non life-threatening. At least for me and my history. Every CF patient is different. I have no kidney or liver problems. I am pancreatic insufficient but when I take my enzymes as I should (and I never miss them) I gain weight well and digest well. I don't see this as a problem per se. I am also a diabetic, which is of course a huge pain in the butt if nothing else. I have been a diabetic for years and years. Everyone post tx will have high blood sugars due to tx medications, so the fact that I already had a handle on it, was actually a blessing. I have little problems at this point controlling blood glucose levels. I do take it very seriously as I do not want organ damage due to high blood sugars. Again I don't see this as a huge problem, since I can manage it. Of course it would be nice not to take insulin, but I don't think about it any more, as taking my enzymes.

Q: Beth: "When you look at your scars what do you think, if anything?
A: Hmm. Good question. The truth is the scars are not an issue for me at all. I have long past the point of vanity in my life. Yes I love to have nice clothes, and dress up and I used to wear heels everywhere I went. Certainly enjoy girly delights. But I have also gained tons and tons of perspective after a life filled with CF, diabetes, PORTS, needles, bruises, and now the scars that I have. They are large, visible, and all over my body. I have my large cut, plus the drainage tubes. I have the Nova Lung scar near my groin which is massive and very ugly compared to the neat chest one. I have my trech scar on my throat which is healing and I think it will disappear eventually. But I also have little tiny ones from IV's all over me. I still discover them sometimes. When I look in the mirror I like them. I never worry about them that's for sure. I do have some sort of pride. They are battle wounds. They represent what I can't forget and somewhat don't want to.

Q: Barbaram55: "How are you finding the post transplant drug regimen?"
A: I am on a lot of drugs. Mostly new. I have a few cross overs from the CF regimen, but those are things like vitamins, and enzymes that I still take for digestion. Basically I got one of those huge pill boxes, have a chart that they set up for me that tells me when to take what, and I follow that. It's only pills, and it's really no big deal. The only side effect that I have is the shaking, which is getting better every day. The Prednisone (steroid) makes you eat more and makes you slightly puffy, but I don't really see that too much, and the appetite is amazing. I love being able to eat like this, and of course it's helping me gain weight, and fast! I am told that within the next few months, to a year, I will take less and less of the supplements that I am on now. When my nutrition gets better and I am back to a normal weight, like I was pre-tx.

Q: Sarah and Brielle: "...do you think you and I could meet up for a play date..."
A: Sarah and Brielle, I have been waiting to hang out since we met all that time ago!! I can't wait. Let's wait until spring is closer and that flu season is over, and we will have that play date. I can't wait to meet Brielle, and have you meet Scarlett. It will be a hoot!! Thanks for all your support Sarah!!

Q: Marti: "What was it like to be home after being in the hospital for so long, and what are your days like now. And what is your favourite thing to do with Scarlett?"
A: Okay, well where do I start with this. I was technically in and out of the hospital (first St.Mike's and then TGH) for most of 2009. It was a terrible year for that. In October I went in, not to come home until January 2010. That's 4 months, 4 long and difficult months. At first I did not want to come home. Even though I hated being there, I felt safe there, and was so scared and weak. But that feeling went away within a few days, and then I began to re-discover life. Home food, my bed, Martin, my family, and of course my Scarlett. Please don't think I'm nuts for wanting to stay there, but I think after so long and after being so sick, home is scary. I have heard this from many people post surgery. Anyhow, now things are so amazing. Every day I do more around the house and with my baby. My mom and I are enjoying the time I think. I hope she feels the same way. I still take lots of breaks and am told by the TGH staff to rest and not do too much too soon. And I generally follow these instructions, but the better I feel the more I want to do, naturally. These days I make sure to do all my meds and record my temperature and FEV1 level every day. I really take care of all that first, it's a family effort to make sure that comes first above all else. I exercise a lot, both at TGH and at home. I am working very hard to get better and better, and more and more fit. I of course do as much with Scarlett as I can, but right now I still can't lift her. So my mom and Martin do that. I feed her often, watch as Martin bathes her (which is very cute), cuddle with her, and sing to her. My favourite thing by far is when we hang out in bed together, she stares at me and touches my face and I sing to her. We just love each other. She reaches out for me and my heart melts and I love her more and more. Each day I can't believe I can love her more.

Q: Shirley: "Are you doing any advocacy for CF or Organ Donation"
A: Right now I don't have any more energy for advocacy. I liked the press that we got, and the fact that as a result of the media coverage organ donation was talked about. That's such a great thing. In the future I will do more, probably for organ donation more than for CF. I know my family, especially John, will always be involved, as well as Barb that did such an amazing job for the Toronto Star. But right now, I need to work on myself, and to get myself back physically. After 6 months or a year, I am sure I will advocate in some sort of way. I feel like it's such a blessing, organ donation, that can give people their lives back, that I need to always spread the word so that people donate. For me it seems like a simple problem to solve, getting more donors. It's all about education, and I think we're going to make leaps over the next generations.

Q: Lisa: "Why don't you have a feeding tube like most cf'ers do?"
A: My experience is that most adults with CF don't have a feeding tube. I don't know what the stats are on this, but I don't know many that do as adults. As for me, I was always a good BMI. I always ate well, and had a BMI of 21 or above. A feeding tube was never mentioned to me as an option or necessity. The last year I lost weight, and we knew we were going into transplant. I kept a great BMI until about September/October. At which point I got lipids (feeding through IV) and I gained tons of weight quickly, and then it was lights out for me. Next thing I knew I was post tx at TGH. I did lose SO much weight after, as you know. It's hard to be this thin, but I am gaining so quickly and eating so well, a feeding tube is the last thing they would recommend. Feeding tubes after transplant are just not commonly used. Many people have the opposite problem due to the prednisone, and of course your organs working so well. I am gaining about 2 lbs per week now, and that's a good pace. Hopefully within the next few months I will be back to my 120-130 lbs.

Q: Mark: "What are you feeding Scarlett?"
A: Haha! I love this question!! Well she was and is a formula baby! She started on solids at about 4 and a half months. She loves her baby rice, all sorts of flavours. My mom makes her everything fresh. Carrot soup, rice, apple sauce with pear or other fruit. She loves yogurt, and banana, and of course still has her formula bottles. I love that she eats only fresh home made food. She has not been sick yet, and we think at 6 months that's pretty darn good. She had the sniffles once (I think from me after I came back from TGH) and she fought it off quickly. We hope to start her on organic chicken between 6 to 7 months. That's the next step. She seems to be the same weight now but growing longer and longer (taller and taller I should say). So there you go Mark, I'm not sure you were interested in all these Scarlett facts, but I love writing about her!!

Q: Toni: waiting for tx and scared that the call will not come
A: Toni, I wish I could tell you not to worry, but I know it's so hard. But you have to stay positive and take it one day at a time. No matter what happens, or how lousy you feel, find something to laugh at each day. Find a happy moment, no matter what. Focus on your family, friends, things you love to do. For me it was my baby. It was my husband and the love on my mom, dad, and John. It was the unconditional support of friends, and strangers. It was my blog that I wrote in and let myself get distracted from the scary situation that I was in. Toni, I know it's scary. Waiting is so hard, but it's worth it. Try to deep breathe, close your eyes and visualize how amazing it will be, and how your pain and suffering (all that work) will pay off. It will. Be strong and brave, and marvel in how brave you are. Be selfish, this is hard. Harder than anyone who has not been through it can imagine, that makes you special and brave. Write me anytime, and I will try to say something to comfort you. I wish you nothing but luck, and I cannot wait for you to experience the other side of this.

Q: Angie "How do you get over or come to grips with the fear of rejection?"
A: The truth is I just don't think about it. I work hard every day to do all that I can to stay well. I eat very well - healthy whole food, no junk, I drink lots of water to keep hydrated. I work out, and do my meds religiously. That puts my mind at ease. I feel in full control. I do all that I can, and that is all I need. Rejection is a negative thought that can overwhelm you, same goes for infection. My advice is instead of wasting time worrying and thinking about it, do something! Get on your bike, go for a walk, eat a good meal, kiss your baby (if you don't have a baby, kiss your spouse, mom, dad, sibling, or your best friend.....) Good luck with being listed. I hope you have a very uncomplicated wait, surgery, and recovery. You can do it!! It is so worth it. Stay enthusiastic and positive Angie!! I wish you nothing but the best, and please email me if you need anything. I can try to answer your questions, and hopefully give you some sort of comfort!

Q: Shannysnewlungs: "Visitors? How are you handling friends wanting to visit?"
A: I know we spoke today at clinic, but I will give my answer here again. I am really really careful with having friends even family over right now. Flu season is scary for us right now, so generally I have had only a few people over. I have not seen most friends in months and months. Even some family for the past few weeks due to illness. It's terrible. I miss everyone SO SO SO much, but there are phones, and email and text. And that's the way it's going to be until spring comes and/or my meds go down a bit. And since I was always this cautious when I had my CF lungs, this is nothing new to people that know me well. They all understand and I love them for that. People that don't understand need to be explained that what can be a common cold for them, could be hospitalization, or worse for a transplant patient, especially so fresh out of surgery. But again, most people are more than understanding and often cancel dates since they feel slightly unwell and want to make sure they don't get me sick. I always appreciate those people.

Q: Lauren Grace: "They say that sometimes you take on traits of the person whose organ you have received. Do you have any new traits or likes?"
A: As far as know, not really. Nothing new. I used to love sugar, now I don't. But as far as I know my donor loved sweets. So as much as I would love to have some cool similarities and differences, I don't. May be I will notice things in time, but not now =) I too have heard people having radically different tastes.

Q: Angie: "What is a Nova Lung?"
A: The novalung helped me exchange gases during the time when I was on the ventilator and had severe problems with CO2 retention. When you retain CO2, just like when you don't have enough O2, damages to the brain and other organs can occur. I was put on it to help my body when I was on the ventilator. The novalung basically re-oxygenated my blood when my lungs were not able to do it any more. It's a small box that sits outside of your body, that your blood passes through. It is connected to a major artery. Mine was located at my groin (where the right leg ends). I have quite the scar to show for it, but it did keep me alive for those few extra days that I needed. It's a great machine, but a person cannot be on it for ever, so time is of the essence. It is certainly a last result life support measure.

Kathy - can you send me your email. I would love to write you personally, or may be call you? I know how you feel in so many ways. Hang on, fight hard. This is such a hard time, 2 weeks after, but you have to be strong and fight and be brave. I hope you trust me enough to give me your contact info, and we can chat. When I read your email I really felt for you. I know the pain and the fear, and the last thing you need is to feel alone. You are not. I am thinking of you, and wishing you a better day each day. My email is nataliaritchie@rogers.com You are NOT crazy! I look forward to hearing from you!! We can email, or Skype, or text, or msn....we'll figure out a way.

Q: Brian Michaels: "One or two things you want to do once you've recovered."
A: I tend to take things days by day now. I feel like I do things that I have wanted to do every day now. Small things, first, like taking care of my Scarlett and being with my husband in my house. This is so great for me! I took Scarlett for a walk in her pram the other day. It was something like a dream, since I never knew I would be able to so soon after the surgery. For the future I want to play tennis with my husband, with my friends, take some lessons. I want to run in the future too. So badly. It is the ultimate freedom for me. With that comes running after my baby once she starts to walk and run, I want to ski, to swim in the waves of the ocean....Oh sorry you asked for 1 or 2. My life has a lot ahead, I can't wait!!

Jessicajv: I will answer your question, and all the rest in the next post. I hope I did justice to the questions everyone! xoxo

Almost done, soon to post answers!

So I am nearly done the answers to your questions. They were great and a lot of fun to think about and write in response to. Here are today's pictures of Scarlett. We had some fun with the camera while watching the Australian Open (we're a tennis family) with Martin. Martin believes Scarlett is going to be a tennis player. Uhuh. We'll see about that =)

I'll post the answers Monday or Tuesday. I want to make sure the answers are both accurate and informative.

(Watching the game with daddy)

CBC Coverage

CBC will be airing a third installment on Natalia and her family tomorrow night (Friday) on their primetime show "Connect with Mark Kelley" during their 7:00-8:00pm and 8:00-9:00pm (Eastern Standard Time) cycles, covering aspects of the current stage of Natalia's journey.

The goal of the coverage was and still is to tell Natalia's compelling story to bring a human face to the national issue of Canada's terribly low organ donor rates with the hope that it would motivate viewers and readers to discuss their wishes with their loved ones, sign their donor cards, register their wishes with their provincial organ donation agency and/or even better, make their wishes known in a living will (links to further info will be provided in an upcoming post to help you do exactly that).

Best case scenerio, this coverage will help bring a direct donor for Natalia, help in it's own way to alleviate our national organ donor shortage, and hopefully help save and enhance the lives of other Canadians.

Worse case scenerio, the latter two still apply.

So tune in if you can.

If unable to see it tomorrow, we'll be posting a link to it once it's up online.

For those that may not have seen the first two installments:

CBC PART 1:
http://www.cbc.ca/connect/2009/11/on-a-mission-new-lungs.html
CBC PART 2:
http://www.cbc.ca/connect/2009/11/on-a-mission-new-lungs-pt-two.html

Special thanks to Producer/Reporter Nick Purdon - he and the Canadian Broadcasting Corporation are growing members of Team Get Nat Lungs.

Myles

Next Step

Hi Everyone,

Last night at 5pm the decision was made by Dr.Keshavjee, his team, Martin and family to proceed with putting Natalia on the Novalung (option 4 in previous post) due to dangerously high carbon dioxide levels in her blood that were not coming down despite doctors' best efforts and if left unchecked would have poisoned her. Once decided, doctors moved swiftly and by 6:30pm they were performing the 1 hour surgery in her room to connect the device to major arteries near her hip. The procedure went smoothly, her C02 levels immediately started to come down and she slept through the night under heavy sedation.

This stage is a double edged sword. We had hoped that the Novalung would not have to be used....that lungs would have come by now......but are fortunate that this option even exists as it is the only thing that's keeping her alive right now. In a best case scenerio, doctors will be able to reduce Natalia's sedation and if her lungs will allow it, with a bit of time, they may be able to remove her ventilator. There have been cases on the Novalung where patients have been able to walk and talk and eat quite comfortably. Whether the ventilator will be able to removed in Natalia's case is yet to be determined.

Bottomline, the Novalung buys Natalia time until lungs do indeed become available. The only immediate risk to the decision that had to be made was alluded to in previous post: blood thinners are required in order to prevent blood clots on the Novalung and because she had been showing evidence of bleeding a few days ago, this is of some concern. If she starts to bleed, because of the blood thinners, the bleeding won't clot and therefore won't stop. If it's substantial bleeding, there is nothing the medical team can do. If it's moderate bleeding, my understanding is there are steps they can take to help manage things (ie/ blood transfusions) while the waiting game continues but, again from my understanding of the conversation with Dr. Keshavjee last night, it will likely eliminate live donor option due to the risks that are placed on the 2 live donors for an operation that has less of a chance of success. It may also rule out the possibility of a transplant from cadaver lungs. There would be no more options available.

A harsh reality indeed, but at this point in time, merely speculation and only if she bleeds. If she doesn't bleed, there is still every reason for lungs to come in time. The Novalung provides the opportunity for that to happen.

Lungs could still become available in the next few days.

Indeed, if well maintained on the Novalung, she has upwards of a month and because she's high urgency status for both B+ and O type lung types, there's every reason and very high chance that lungs will come with time to spare.

Incredibly, as early as 2 weeks after her transplant Natalia would be released from the hospital.

And within a matter of just a bit of time, she could be and still every reason why she will be pushing Scarlett's stroller with Martin in the park.

Myles

Cautious Optimism

Hi Everyone,

Natalia remains well stabilized and has pretty much been completely out since last update. She appears to be more comfortable with the ventilator and tubes than she was when first transitioning into the ICU. For the first few days it seemed her body’s natural inclination was to continue trying to breathe for itself but is now in synch with the rhythm of the pump and at better ease in general which is reassuring to all.

She’s also more comfortable with the suctioning process. Despite being on a ventilator, her lungs continue to fill with fluid of course which needs to be manually suctioned out on a regular basis. To do this a hose device is pushed down the main tube down into her lungs, you push down on a button to create a vacuum seal and then pull the hose out which brings the fluid out like a siphon into a suction tube much like the one used at your dentist’s office. It was a painful process to witness at first (Martin, her dad Chris and I have actually performed it on several occasions as well) but her body doesn’t react to it in as tense a way as she first did (much like witnessing someone vomiting, but without any sound. [If too much information, my apologies, but as you know, Natalia doesn’t like things sugar coated]).

There have been a couple of things on the medical team’s radar. There has been some bleeding from the lungs that was coming up into the tubes so some bronchoscopies (bronchoscope is a flexible tubular instrument with camera and additional ability to suction lungs) were performed which weren’t able to identify a source, leading them to suspect that it isn’t chronic bleeding (which is a good thing) and likely a result of the intrusive nature of the ventilator.

She had a mild fever yesterday which indicated her body may be fighting an infection. It has since come down a bit which is encouraging.

Also of some concern is that her CO2 levels are higher than doctors would like. For those that may not know, sustained high levels of carbon dioxide essentially poisons the human body and can lead to cell damage, including cells in the brain (that’s worse case scenario, which this isn’t). This is not something that doctors have said explicitly to us, more a process of deduction, but if C02 levels don’t improve it appears to be raising the likelihood of moving to Novalung option which, as mentioned in previous post, is a transplant bridge until other option(s) become available.

There is tremendous upside with the Novalung. It’s actually a technological marvel that keeps people alive until organs become available and Dr. Keshavjee is a pioneer with it. In many ways it would be far better than where Natalia’s at with the ventilator because it’s far less intrusive, would enable the tubes to be removed from her lungs and mouth – it could even provide opportunity to eat and speak and move if she doesn’t have to be as sedated.

The downside is that blood thinners are required to reduce likelihood of blood clots on the Novalung which can be problematic A) if the bleeding in her lungs is more significant than suspected and B) for time when organs come and transplant comes and they need to operate. Also, the body’s natural reaction to the Novalung which is essentially an external organ is to create antibodies against it which has potential to increase chances of organ rejection when lungs or lobes are received. I don’t know what the odds are, my understanding is they are remote, but all factors under consideration and part of decision making process.

On the living donor front, Natalia's brother, mom, dad and aunt have all been confirmed as B+ bloodtypes which is very good, and Martin is O+ which as mentioned before is a bloodtype that can work with others. Efforts are being made for the screening process to move forward in an expeditious manner, but understandably takes time. On a related note, we were actually contacted by a good samaritan who was so moved by Natalia's story that he wanted to be considered as a potential living donor and actually donate one of his own lobes. It's against hospital policy for members of the public to come forward for something like this, which makes sense, but it's testament to how much Natalia's story has affected people. The messages of support keep flowing in. As always, and again on behalf on Natalia and family, thank you.

So the wait continues. With optimism...cautious as it may be. We’ll of course continue to keep you posted as her journey unfolds and decisions are made. All of the above said, and all of the above aside, the best headline in the near future will of course be “LUNGS ARE ON THE WAY!” and the last 6.5 days will likely be something Natalia won’t even remember.

Myles Slocombe

Good things keep happening

Today was another great day. I have been put on steroids to help these tight chest episodes that I had last week, and though I do not love being on steroids, I should get used to the idea going into transplant. So I don't mind. The good news, I am eating. Food has taste again!! It's amazing!! I have not eaten normally for months and months, and today I ate cheese bread for lunch and it tasted so good!! (you can tell it's the steroids when I am excited about cheese bread....) The point is, when you eat, you gain weight, and I would love to gain a bit before I go in to the OR. The faster the recovery will be on the other end.

The other great, in fact AMAZING news is that we got the CBC story. I hope I am allowed to talk about it, oh well, I'm talking about it. I am so excited. It will be 3 segments, 3 nights, about 4 minutes each, which in prime time is a big chunk of TV they say, about my story and that of my family! It's beyond what we could ever ask for !! And the CBC? We love the CBC!! They will interview me here Thursday for 3 hours. And then go to my house and interview my mom and Scarlett (who will have lots to say!! haha) and Martin, John and my dad. The show is about people that overcome great obstacles in life. They will talk about my eagerness to get past this, continue my life as a mom and wife, and my goals of wanting to play tennis and seriously get into running after I get my new lungs. The cool part is that they will also be there for when I go into the OR, and later post transplant as I am 'living my dream'.

As well as the CBC, a Toronto newspaper will be running a story about organ donation and my situation sometime soon. I am being interviewed for that tomorrow. Very excited about that also! I will be sure to post a link to it here for many of your guys out there not from Toronto. It's all so cool, the word is getting out and will do so much, I have no doubt, for organ donation.

The producer and I spoke tonight on the phone, a really nice guy, and he told me how much my blog moved him. I am so amazed when people say that. I love it. It has given me, this blog, something to turn to when I seemed to have nothing else. I never ever thought that I would enjoy writing so much, I never really wrote before I started this blog. But it has this life of it's own now, and I think it's incredible. The support I get. The amazing people that have helped me find my way through all this. It has really been incredible. The praise is something that I don't always understand, but I love. It makes me feel useful, when at times I can't do so much physically. I feel like I touch people.

Again, today I am reminded, how quickly things change. I spoke about this in my Happiness 101 post, this just proves my point. From a week ago, from a few nights ago, things change. Today was another good day. What made it so good, is that I did not waste a second worrying about if tomorrow will be as good, since I know better, it might not. I just enjoyed it. I ate, and it was SO good. I enjoyed my daughter, and that was way better than eating! She was incredible to hold and kiss. I saw my mom, my brother, and my husband all in one day. And I spoke to my dad on the phone, and texted Angie, so I got everyone. I thought about the fact that in less than a month we will have another baby in the family. I cannot wait to meet her, my niece! I had a great nap, I kissed my husband, I got my favourite nurse tonight, her and I had GOOD laughs together, I used my day well. Not a minute today, however, did I worry.

Power of Prayer

I have witnessed something incredible. The reason I share this on this blog, by this method, is for one reason alone, so that I can document it and read it again and again for my own doubt. It is in no way to challenge the belief and faith of anyone else, to educate anyone else, or disprove the experience of anyone else. That is very important for me, that people out there, reading this, understand that. I am someone that believes in a personal god. Not a one good god, one bad god, but your god. This is the reason why I rarely mention religion or god in this blog, I don't want anyone to feel isolated or drawn due to religion. I have said this before, I love people that have faith, no matter what that faith is. I find Muslims that practice their religion with love as inspirational as Hindus that do. Saying that, there is nothing that I hate more than people that truly think that their god is the right god.

(now back to my incredible story)

Since that night that I went to the ER things have been very hard for me. I think I have expressed that in my posts. I have been struggling so much. That was almost 2 weeks ago now. During this time my pain has been more than any pain I have ever felt before, and my inability to breathe has been like nothing I have ever experienced. These 2 weeks have worn me down quite thin. Literally and figuratively. At nearly 5'7, I am now weighing in at 49.1 kg (108 lbs) and that's about 20 lbs lower than I am usually, and I am usually very thin. Emotionally I have been to the darkest place inside my soul, and though I have never and will never give up, the relentlessness of this illness is more than I ever thought I would have to deal with. I just never thought it would be this bad.

Last night, I had reached some sort of breaking point. In an hour of weakness, I started to cry and could not stop. It just all poured out of me. I cried and cried. In the middle of this release I started to pray. A deep prayer. A conversation between me and my god. A nameless, faceless god and I. At one point, on my knees, I asked for relief. I said I could not take it any more. I could not ask for these lungs to come, that was not something I am ever going to ask for, I just prayed for strength, for less pain, for the ability to handle more (if more was to come) for relief both physical and emotional, and for strength for those around me that had to endure watching me be so sick. But as this lasted a while, I think I just prayed for relief. Over and over again. I could not take it any more. It was too much. Eventually I got too tired, and fell asleep. It was like it all left me. But I had asked over and over again for help.

I woke up today (7am), and the day started off the same. Woke up, realized that I was at St.Mike's, that the Bi-pap was on my face. I seem to not get used to this each morning. I took it off and gasped for breath. It's the worst thing to have to take off your face, since when you take it off, you feel really how poorly your lungs actually work. It's suffocating. I did treatments, the nurses and other medical staff came in and out. More treatments, pills, puffers, IV's, tried to eat something, and a few more mundane things like that. After about 2-3 hours I was tired again and put my Bi-pap back on and fell asleep.

When I woke up again, my brother was already there. He works in my room all day, as his job is able to accommodate that. We basically hang out all day. Mostly I sleep and he's on his laptop. When I woke up, my lungs were clear and I was breathing well. Not well, like WOO HOO no more transplant kinda way, no, but I was not gasping like I have been for weeks now. Not in distress, that terror that has not been getting better over the last little while. I did some physio, I felt so much better. Light, I felt light. My brother noticed it. Everyone noticed it. Then we got a call from the cbc about a possible story that they might be doing on me and organ transplantation. Something a friend of ours has been trying to set up, with no avail until now. Things were just so good. The day was so good. I looked in the mirror, and I had some colour. My eyes were brighter. The best part of today was that I went for a walk with the RT up and down the hall. I used a face mask, not nose prongs, so obviously I needed a lot more oxygen, but that was something I was not able to think of doing a few days ago. A few days ago I almost passed out going to the bathroom 3 feet away from my bed. But I walked all the way to clinic and back from the ward with Brent's help. And I was ok. My legs were like jello, and I walked slowly, but what a difference.

So I enjoyed today. Every minute of it. Never take a good day for granted I said to myself, so here's my test. And I did not take it for granted. Every time I needed an extra smile I looked at the pictures of Scarlett that Jenn took a few days ago for Scarlett's 3 month, and I just gush with love. I love that baby so much, and cannot wait for my lungs to come, and for me to hold her once again.

Words have not put into any sort of perspective, this experience that I have had. It seems random and silly written down even. But I know it is not. I know, that when it all just got too hard, when I had nothing left in me to fight, (I had gone as far as I could but i knew that was it) my god gave me something to hold onto. Some relief, and a glimpse at how amazing life really is. Because it is. I look at the pictures of Scarlett and I just look at what miracle that kid is, and I can't think any other way. I don't think anyone can. The power of prayer is amazing. I felt it last night, and I believe in it. As is the god that has blessed me with the family and friends that I have, who have led me this far, and will continue to do so until that call comes. I believe it will come when it is due.

For a Scarlett smile, here is the facebook album of our little 3 month old! Enjoy. I look at them all the time for a pick me up.
http://www.facebook.com/album.php?aid=129818&id=541641274&l=b55a284651

6 days

Last night I wrote a post, and after reading it this morning I had to erase it. It made no sense at all!! I promise to do more frequent updates as things go along, since longer ones I never have energy for, and that means they never get done.

I have been here for about 6 days. Tomorrow is a week. I know time flies like crazy. Especially for me, since there has never been a dull moment. Mostly however I am on percasette's feeling dopey and sleepy, and on my bi-pap sleeping. It's the only relief I get and that's okay with me. It's better than the alternative....wait, is there an alternative....that's right no there is not.

I have had a few scary episodes where breathing did not come. Instead a heart rate of 165 did, and the panic of chocking. It's the worst thing, and it happened last night leaving me tired and scared and defeated. Today I have seemed to returned to some sort of comfort. My slight panic over coughing and chocking I am working on. Last night did not help. The doctors keep reminding me about the anxiety component of not being able to breathe, but for some reason when they say it, it's like they are not giving me my share of credit for how the situation felt and how awful it was. Meaning that if I didn't panic, I would have been able to calm down sooner and not have the extent of an incident that I did. I guess I don't know how to stay relaxed when I am unable to breathe. I'm just a person here people, just a person that is weak and tired a yes panicked when was unable to inhale. The Bi-pap saved me. I grabbed it and slipped it on my face and it started to work for me. Seriously thank god for that machine.

So needless to say it has been a battle. One after the other.My mom is sending me movies of Scarlett every day. They are so cute. She is incredible. I don't have a lot to say about her. This is very hard for me. I am just fighting my own battles and know that she is being raised beautifully by her family.

2 months, 1 week, 1 day on the waiting list. Every day my doctor hopes it's the day. By placing me on the rapidly deteriorating status, she believes it will be any day. I hope so.

Late night ER

Last night, after days without any sleep, more need for oxygen, and what seems like an infection (even though I am on IV antibiotics) we made our way to the ER. I rarely go to the ER. It never makes sense to since I can often call my doctors and wait for a ward bed at home, avoiding the ER all together. But after speaking to one of my doctors last night, she was concerned enough about the situation to tell me to head over to the ER: She would meet me there.

Martin, my mom, and my dad packed me up and got everything organized for leaving. My mom and Martin would stay with Scarlett, my dad would drive me. Once I got dressed and ready, I really had a very hard time walking down the stairs to the car. Once I reached the front porch I had a coughing fit and coughed up tons of tar-like mucus. Those coughing spells leave me so tired, and part of my wanting to go to the hospital, is that I am starting to feel that being home is unsafe. In case I stop breathing as a result of these spells, I want to be in a safe place that can keep me safe until those lungs come. So off we went.

After that coughing spell, I felt much better. I was able to work less to breathe. For those of you who have never seen someone that is working to breathe from a medical perspective, it's much like seeing someone running to their full capacity on a treadmill. The difference being, with a treadmill there is always a way to step off, and recover. Once the cycle of working hard starts it can last minutes (when I walk too fast to the bathroom, desaturat, but gain my breath back when I sit down or rest), hours (after or before a coughing spell) or when in severe respiratory arrest for days. From being there before, it is by far the worst thing to go through in my opinion. When the heart rate never goes down, the shortness of breath never ceases, the treadmill never stops, it's torture. It can also be incredibly spirit breaking. You just want it to end, that's all you think about. Sometimes I would just sit in bed in the middle of the night and cry, that's all I had as an outlet for the breathlessness.

After about 2 days of this situation, and without the ability to sleep with a heart rate of 135 bmp, enough was enough. I could not do enough physio, or nebulized therapy to calm this down. I knew I had to go to the hospital. I welcomed anything at that point that would make it better.

At the ER, I met my doctor, who was quick to establish a new plan of action. New antibiotics (thank god for my Port - this saved a lot of time so that we could get blood work done, start new meds and not have me in more discomfort than I was already in - I LOVE MY PORT) and the Bi-Pap machine. http://en.wikipedia.org/wiki/Positive_airway_pressure Here is a link to what the Bi-Pap is and what it does. I will not get into it here, but it's a great thing! Has calmed me down and actually gave me the opportunity to sleep last night, if only for a few hours. It's not an easy thing to have on your face, but it's relief. At this point it's about small victories.

Today I feel much better. I have a crazy cough, but I am getting the stuff up. As for staying at the hospital for longer, I think right now I am set on trying to wait out the rest of my transplant wait here. It's a hard thing to think about, being away from home, from Scarlett, from the comforts of that life. But the fact is, home is very hard when you are in my state. I don't want to become more and more of a burden to my family, so I tend not to ask for help with some things, and get more tired. I am terrible for asking for help. Terrible. I hate it. But in the hospital I feel that everyone will get some rest from this. I know that Scarlett is happy and well. I know that people must think how can I possibly be away from her now, but the reality is, it is for her that I am here. To make sure that I can get a bit better (perhaps gain some weight and lung function) before the call comes. Staying at home and risking anything, just for the sake of being physically close to Scarlett is silly. It's childish. I am a mother, and I have to act for her.

One day Scarlett will say, mom it must have been terrible to be away from me when I was just 2 months old, after you waited for me for 9 months. and to her I will say. Yes it was terrible. but the fact is, it was a war I was fighting. A war being fought inside me, inside my body, and in war we do whatever it takes to stay alive. All mom's would do the same thing. It's not about what's comfortable, certainly not about what I want. It's about life and death.

As I sit here in the hospital, I have watched a movement start regarding organ donation on facebook and beyond. We have had friends send letters to the media, and post countless links to recycleme as well as my blog. The letters of support and love have been incredible. This outpouring, often from people I have never met, as well as dear friends has been such a victory for organ donation. With the way that this is spreading on facebook, I would not be surprised that many people waiting for organs in Ontario will get their wish sooner, or just in time, just by reminding everyone to talk to their loved ones about their wishes. The power of this type of media to get people talking is incredible. I am so moved by the movement.