100 days...

Today was a great day. It was so nice to see Beth, Don, and....the belly!!!! Beth looks great. She is beautifully pregnant, and in my opinion has the best perfectly round belly ever!!! It was just the best gift to see her today and to have some time next to my baby.

We tried hard to get me to feel some kicking and moving around, but I was unable to feel it. Not quite time yet. I will get a chance again soon.

I am writing this quite late (okay may be not so late for normal people, but late for hospital time) so I am not going to write much. I will say that I cannot believe how we're moving along with this pregnancy. Time is just flying by, as we're approaching the 3 month mark!! What?! 3 months to go??!!!

Today we're at 100 days, and I can't believe we're here. That little ticker has been a little reminder in my life, and now it's here. I will have to get a second one soon for my other big wait......and one day at a time, we will wait another 100 or 200 or 300 days for another miracle. Each week at a time we will look forward to what is ahead, as a family. Each month at a time we will anticipate something that will arrive without notice, and change our lives in every way possible.

Our little girl will make life worth living, as my news lungs will allow me to live. How fitting that this will all happen within a short period of time.

When did 27% get to be my better?

It is safe to say, that after all this time, I really really miss the outside world. A lot. As weeks pass, I seem to be more and more withdrawn fro the fact there out there, right out my window, is the outside world. A world that I really miss? Have I said that already?

So this Saturday is day 14 of this round of meds. They change them around after 14 days to mix things up. I have been on 2 rounds overall. So they are thinking of sending me home Monday. Well, as eager I am to go home, I am not quite sure that this is what I feel safe with. But the fact is, it's a bit of a double edged sward. I need to go home to see if I can be off the IV's, but I also don't want to go home since I really don't want to feel sick again and get even worse. After feeling stable for a bit, I really don't want to feel that pain again that I just seem to be rid of. The doctors wanted me to do my lung function today to see what it says, and only if it gets back to some sort of acceptable number can we think of going home. Well, I did my lung function this afternoon and it was pretty much the same. Slightly up, but were talking about such small numbers that it's really not much of a change. From 25% to 27%. Nothing to brag about.

So I don't know what will happen. May be another course of IV's. Which I am not happy about, but I am not happy about going home only to get more sick. I don't know.

On a completely different note, I have been at the house several times during this week and weekend. For an hour here and there to check on things. The nursery looks so good, it's awesome. The change is amazing, and it's still not quite done. But the furniture is all there and the registry gifts are arriving, so things are really coming along. I can imagine our little girl in that room, and it makes me smile. She will love it, especially as she gets older. It will suit her for many many years.

This will be a short post, as I am quite tired, and still don't know if I will be going home or not. So I will leave it here, and post today or tomorrow as to what's happening.

Oh! I nearly forgot, Beth is visiting me tomorrow!! Yes, as the hospital. I get to see her and the belly!!!! I get to see the BELLY!!!! I can't wait. I will be sure to take pictures.

Church Bells and Rollercoasters!

I woke up just now to music. I thought I had left the TV on in my hospital room, but no, it was the church right outside my window! It's Easter after all. I lay here for a while listening. Organ blaring, and I'm sure if I was in a different mood this 6am wake up call would have been less welcomed, but this morning I liked it. It was really beautiful and uplifting. Now there are people singing.....hmm I have never really heard of this being outside of the church?!!! But I get such a good view, why not?!

So I am uplifted!

As far as my progression and how I am doing in this place.....day 21, with my previous 14...that would make it 35 days....ouch....well we're not talking about getting me out of here. No time soon anyways. My doctor and I had a chat about it, and she has no plan now, just to keep moving forward. The good news about that is that I would not leave right now if they told me too. The thought has terrified me over the past few weeks. You know you're sick when the hospital becomes like home. When you DON'T want to leave. Well no one here is kicking me out, so we're keeping everything as is. Plugging along to may be get me somewhat better and more comfortable. That's our goal she said. That's all we're going to be able to achieve, being hopeful that this is not my new norm. This goal does not change anything for tx. It just means being more comfortable and safe waiting.

My Easter weekend was full of ups and downs. I went home on Friday to do a few things, ended up taking a bath (which was like heaven!!!) and then passed out on my bed and slept. I have never slept like that in my life. Just passed right out. I cranked my oxygen (to a comfortable and safe level) and just slept. In my own bed. It was so missed, I cannot tell you. The things that we take for granted every day. Our beds. A bath or shower. I miss those things and keep reminding myself not to ever take them for granted again. Never.

Oh, and before Friday, on Thursday night, my mom and I took a walk to a local restaurant for dinner. They let me out between IV cycles and we walked the 500 m or so to get some food. Even with oxygen I had the worst walk. Miserable. Could not breathe, and was all foggy and well, just miserable, and it was a short walk! It was not even worth driving to since walking to the car and then from the car to the restaurant might have been at least the same distance! But I was so miserable! It just reminded me of the shape I was in. At the restaurant I had completely lost my appetite and could not eat a thing. I tried but I was sick and tired and just wanted to go back to bed. What a life huh?

Now came yesterday, Saturday. I did not want to go home, since I saw no point of going all that way so that I could sleep. Too much energy wasted. So my mom and I went to an art store (so that I could get a few things, I'll write about that another time) and Starbucks to enjoy some out-time. We got those things done without a hitch, and it was only about halfway through the day that I realized how much better I was feeling. Walking was easy (still on oxygen but nothing like Thursday) and I even sat at Starbucks without my nasal prongs and still felt good. I was amazed. I have not felt like that in ages. I mean a year or year and a half perhaps. What?!?! Granted, I realize this is ON oxygen (I used to be off it) but still it was like night and day to any day I have had for a long long time.

When I got back to the room, I checked my SAT's, and as I was still standing I was at 98%?! HUH?! What? For the past month or so, I have been SATing about 93% on oxygen. This time on the same amount, and after walking these were the numbers? I was baffled. How fast do things turn. It's remarkable. I am excited to see how the next days, and weeks in here go. As we keep being aggressive with the drugs and the therapy. Something has obviously turned.

Now I want everyone to understand that this does not mean anything for transplant. Of course if all of a sudden I were to get off oxygen all together, and my lung function would jump at least 10%, well then we'd have something to think about. Right now all this means is that I might get myself off IV's eventually and actually get to go home. That's all I want right now. Of course waiting for new lungs at home, without IV and horrible bouts of infection will be nice, but it's a lot to ask for I know. Small victories I say. This is a victory.

I think the organ and singing have finally stopped. Back to hearing the roar of downtown traffic. Eww.

So that's that. Ups and downs. Ups and downs. I don't know about you but I am getting nauseous riding this rollercoaster!!

It's started!

Today was the first of the tx assessment tests. I had the TB skin test, bone density scan, ECG and some blood work. I have some more tomorrow, but so far they are the same tests that I've had done several times before as my yearly CF testing.

This has really made me excited! Something different for a change, something to focus on!!

Nothing else to report, but thought I would let the blog world know that it has begun, and I am really excited about it!!!! These days all I think about is our little girl. How she will look like, how her little toes will look....is her hair going to be straight like her daddy's or curly like her mommy's?! I also think about the way it will feel to have new lungs. Oh, that thought.....almost as good as having my little girl in my arms!!

With those beautiful thoughts, when they say the words 'this might hurt a bit' when they do another test, poke or prod, nothing does hurt. Hope is the best anesthetic!!

The best people in the world!

The last couple of months have been hard for everyone, not just me. I see the stress that all this has on the people that I love and those that love me. It's hard. But once again, we are one hell of a family! I don't know what kind of sister or daughter or wife I am, but I can certainly say that they can all write a manual on how be to an incredible husband, mother, father, brother or friend.

For a man that has never dealt with anything like this, Martin is such a pro. It has taken us a little bit to get to this point, but Martin and I are happier than ever. We enjoy spending time with each other, even when I am in the hospital. We have had hard times in the past, but with everything that we've had to deal with, it was only natural that it would take us some time to get to this point. Our dedication to each other is unmatched. Our dedication to our little girl on the way, had made us closer, and more certain that the life that we have is better that we have each other in it. It would have been nice not to have CF as a part of it, yes, but we have dealt with the anger that comes with it. We have dealt with the fact that certain things will not be as we imagined. We have also dealt with the fact that apart from anything else, we have found what matters in life. This is one of the reasons why we are so lucky. Martin is what a real man is and should be. I never expected for our life to be so complete, even with so much obviously lost.

I don't have the words to explain my mom and dad. Their dedication to me and Martin and our little girl is beyond words. With their help we will make all our dreams come true. We will welcome our little bunny into this world in July. We will also not allow the failure of my lungs to get us down, and we will see the day when I will walk out of TGH with a brand new set of lungs. Without my family none of it would be possible.

I would really like to reach out now and say thank you to everyone out there who has reached out to me during the last few weeks and months. The friends that I have are such an important part of my staying positive and focused. My brothers girlfriend (that I call my sister in law, since she is family) has become a good friend of mine and has been so dedicated to me that I cannot describe how thankful I am. Everyone has work and kids, and busy busy lives, but for those that make time and give some of their strength to me, I have such admiration for. I have always tried to make time for others, no matter how busy I was, and now I realize more than ever how important that is. Today a good friend visited me, she's got 4 kids, and made sure that I knew that no matter what, she would be there for me. That gesture is what life is about I think. People remembering that life is about the people that make up your life....about love and friendship. I get text messages from many people every day. I get cards, and notes. I get messages on facebook. There is one friend that texts me every day. She lets me know that she's thinking of me. It makes me stronger, and makes me fight when I don't want to any more. I also have a very special CF friend, that I have never met, and never will (her and I both share a belief that is very important to the both of us, about infection control amongst people with CF) that reminds me everyday that she understands what the war against CF is all about. She keeps me strong and cheers me up. Love you R!!!

Thanks everyone! I love you guys!!

Transplant meeting, allergic reaction, and an afternoon at home.

On April 3rd I had the transplant meeting with Dr.C, who is a respirologist both at the CF clinic here, but also at the Toronto General Hospital lung transplant unit. She goes back and forth as to keep tabs on the patients here, since so many will be transplanated eventually.

The meeting went very well. Dr.C was very informative and positive and really quite nice. We started with my medical history (which was all in my chart, but this is how any consultation with any doctor begins) as well as her handing me over the tx (transplant) manual. I was very excited to get it. It felt like a big step for me, that manual. That much closer to a very big moment in my life. Something I always knew would happen, but never knew when. Well it could very well be now.

From there Dr.C went into the finer details of tx. There is so much to know. From the medical perspective, to the social side such as coverage for all the drugs that you will be on for the rest of your life. From the pets that you could own, to the ones that you should not. The activities you can do after (which is basically everything) and the ones that they advise you not do (scuba diving for example). All the tiny bits and pieces. A general introduction, but I learned a lot.

I was asked about how I felt with proceeding to assessment. Did I think it was the right time? How was my standard of living, my ability to participate in every day activities? I was honest. The fact was that 2.5 years ago when I got married, I was already not doing a lot of things. Spending hours a day on my medical care. But then it was all worth it. I was able to participate in my wedding day to the fullest extent, which was a very long long day, and never once thought about my breathing, being out of breath, or feeling weak. I was also 128lbs on my wedding day after losing quite a bit of weight from the stress of getting married. These days, only a couple years later, my lung function went from 48% then , to 25% now. I was never on oxygen until this point, now it looks like I will not get off it until tx. I am having trouble maintaining my weight of 118lbs when on treatment, and slip into the 110lbs range when off IV's. Putting on weight when you feel weak, tired, and sick from the meds, in nearly impossible these days. It's a battle. But most of all I think about the things I don't do anymore. Right now I do nothing but medical maintenance. But even half a year ago, going grocery shopping was really hard. Walking in a mall was something I gave up on many years ago. I stayed mostly on the deck at the cottage last summer and only made it to the beach a few times. Parties, social settings, and anything outdoors wear me out so much, I generally avoid those settings. And if I did manage to go out, I felt it for days and days in my lungs and the rest of my body. I can go on and on, but the truth is, I can't live like this anymore. Now that I need oxygen, and I desaturate when I stand up without it, my mobility is so compromised, that life is not worth continuing this way, if there is an alternative. And there is!

Dr.C agreed that she thought getting assessed was a good idea. The way I feel about my life right now, along with my terrible numbers (lung function, SAT's and inability to get off IV's) she thinks that it's time.

I have tried to change my mind set, and realize that my health might not get better at this point. Anything can happen, I know that, but with my lung function it can only get better for a little bit, I don't want to destroy my body from the effort of breathing for another year or two. I am tired of being this sick. It is very hard, quite painful, and has been a part of my life for too long. Saying all this, I have a strong feeling that it is time for tx. I want to enjoy what life has to offer, especially as my daughter starts to walk and run in a bit over a years time. I feel that I am doing this for her as much as I am for myself and Martin. We all deserve to have mommy better, and be a part of life as it should be. I see this as the end of my CF journey, and the start of the tx one. That allows me to concentrate on the positive and not start thinking about what is actually going to happen.

It's going to be a long process. Enough time to see if I get a bit better, or not. So there is no danger of me getting the tx tomorrow and thinking may be I would have recovered somewhat?! There is tons of time for the process to get underway, and for me to get used to it. Overall I am excited and in shock at the same time. I know it will all be okay, and that the toughest part of it all will be this time waiting and not feeling that I am getting better, but worse. I am so unwell and cannot imagine being like this for the next year, but I have no say in that. That's a time that hope will guide us. I have no doubt. As well as the love that we will experience with our little girl at home with us.

I did end up having an allergic reaction to the antibiotic that I was desensitized from on Thursday. It just didn't work. It was not as aggressive as the reaction I had to it before the desensitization, but it was enough to decide to discontinue it. So I am now on the other one that I was desensitized from, and the origional one I was on when I came to the hospital. It is what it is. We gave it a go, but an allergy is an allergy.

Today I get to go home for a few hours....ahh....home. Of course Martin left for Russia last night =( I had him home for 3 weeks, so I should not complain. Though I was in here pretty much the whole time, he was here constantly and we did have some nice time together taking about our baby and finally deciding on her name for sure. It was fun. Today I will see what the nursery looks like, since it has been coming together as I have been in here. May be I will take a picture for you guys, though it is not done yet. =)

Today might just be a good day.

Blah blah blah....

That is how I feel....blah...for so many reasons. The antibiotics that I have been on seem to not be working as they should so they are switching them up. Since I have had allergies to one of these medications before, they are desensitizing me to them. This means that over an eight hour period they administer small doses of the drugs, and make sure that there is no reaction. This gets your body used to the drug, and they are then able to administer the full dose from then on at the ward (6 Bond).

Desensitization is done on a separate floor, at the step-up ICU unit, in case you have a reaction. It is an open unit, so I am in a large room with 3 other patients. Since it is step-up, these are critical patients, so mostly very elderly patients, screaming in pain all day. Poor people. I tend to think that if these people saw themselves in this position (if they were actually aware and alert) they would not want to be in this state at this age, who would? It's hard to listen to them all day. It's also hard to listen to how doctors and nurses treat them also. Karma, that's all I have to say!

For some extra fun, today, they were doing an xray on one of these elderly patients, in the room. While the xray was being performed, the staff left the room as to not be exposed to the radiation. The patients (including me) were all left in the room. I asked them why they were leaving the room and I was not, and they said that they did not want to be exposed to the radiation. Since the patients could not walk, we were to be exposed to the radiation (I stress again that these other patients are completely sedated or close to it). I told them I could walk (I can walk just fine thank you) and since they didn't want to take the time to unhook the few monitoring tools from me, they told me to stay in the room, that there was little risk. I told them that if the staff was leaving the room, I would be too, little risk huh? then why leave? I unhooked myself (it took me less than 30 seconds to do so) and left the room. I found the situation ridiculous! It then took me another 15 seconds to hook myself back up. It's hard to have respect for these people, really. As a patient you get treated like a second class citizen. I always fight for my rights and seem to really not handle well when there is no consideration at all for the sick. It boils my blood.

As CF patients (and any other patient with a chronic condition) we know so much about our illness that we should really be listened to when it comes to our care. It's such a fundamental part of medicine I think. Call it bedside manner, call it just being smart, but why does it seem that the last person that a doctor wants to work with is the patient? I have dealt with this for so long, that I am at a loss for words as to how terrible things can be in here. Recently a friend of mine told me that it seems that we have to be the most focused and sharp about our care when we are the most sick. And that's so true. When I need help, and need for someone else to take over for a little bit with my CF care, I always have to make sure that my meds are correct, and that things are not missed. The funny part of that, is that at home I miss less treatments and get more sleep (in face I never miss anything), than I do when I am at the hospital. A part of me cannot wait until I am at Toronto General Hospital, the worlds leading transplant center (where the first double lung transplant was done, and where they continue to excel on the world stage) The world's first successful lung transplant was performed in Canada in 1983, followed by the first bilateral (or double-lung) transplant in 1986. Canada's lung transplant experience is highly regarded internationally, and the country's lung transplantation rate is 5.3 per million population (PMP), compared to 4.7 PMP in the United States and 2.9 PMP in France. Hey, that's something to be proud of!!

As for an update, instead of just a rant on how much I hate this place....I am stable, but just when I was starting to feel better, I got worse. Up and down. Hence the new meds. So I am having the transplant meeting tomorrow. It looks like it's heading that way. I am getting more accustomed to the reality of that, and the more tired I get of being here and of not feeling better, the better a transplant seems. So tomorrow morning I will get the package to read and get introduced to it all. Then we will book an assessment date. Bring it on I say.
Meanwhile Martin and I decided on a name for our little baby girl. It's 100% certain now, and we call her by her beautiful name when we speak about her. It's a great name. Different, but not strange. Pretty but not too girly or childish. It will suit her as a girl, and will be perfect as she grows up. I can't wait to meet our little bunny.

Thanks everyone for your thoughts and prayers. I can feel them!! I really can!!