The weekend and 62 days

We had a pretty glorious weekend weather wise in Toronto. Not overly hot, but sunny and dry. We spent most of the weekend outside in some form. On our back patio, on our front patio, or the Starbucks patio. I got some nice sun, and sun always makes me feel better!

Martin and I feel like we're more in love these days than we have been in a long time. We have been married for 2 years and 9 months, and have gone through all sorts of stages in our marriage already. There were always stressful times, like starting a business, flipping a home, going through infertility. There were great moments like our wedding day, our honeymoon, buying our dream home, finding out we were expecting a baby! Then there were all the moments in between as life just happens. I think marriage is hard, but I think it's incredibly rewarding. I think that if you don't find the right person, at the right time, a marriage has no chance of success. I feel like right now, after 2 years and 9 months, Martin and I have been through so much, that we can handle anything. Our commitment to each other has been tested and tried. This weekend we had a fight about something stupid, after which we decided to never fight again, we love each other too much. So we had a great weekend. I think both of us think periodically about what we're about to endure. What's about to happen in our lives. New baby, new lungs, just a continuation of the wonderful life that we already have, just with a major upgrade.

62 days. What's 62 days? Pretty incredible isn't it: That our little girl will come into this world in less than 62 days!! Where does time go? This Saturday is my baby shower, and I am so excited. It's going to be so nice to see all my friends and family!! I cannot believe how close we are!!

What happiness feels like

I forgot what happiness feels like. Today I remembered. Not because of the assessment, or anything else in particular. I think happiness happens in moments. One day you just pause, and you think, hey, right now I'm happy. This happened today. This is how the day went:

Today was day 3 of the tx assessment. Day 2 was good, but very tiring, and I just didn't have the time or the energy to blog. Tons of tests, tons of pokes and strange machines. If I was not on IV's, I would not have been able to get through it. The antibiotics allow me to stop coughing long enough to do other things but....well, cough. My lung function only increases a few percent, but I am able to leave the house, and walk around, and just generally live some sort of a life. My mom and I were very very tired after day 2. Today, Day 3 was only interviews, and it was a good day. Martin came with my mom and I, as my second support person. I have my mom, and Martin as support people. Meaning people that will be with me during the time of being listed, and after tx when I am being closely watched for the first 3 months.

So today were the interviews. We saw the tx coordinator first, a nice lady that walked us through the process in detail. From being listed, to the waiting process, and then post tx time. There was a lot of information. The program is intense to say the least. Once I get listed, I am going to be at TGH 3 times per week for a work out program. No matter what, no matter how low my lung function gets, it's required. They customise a program for each person, so you only do what you can, but the point clearly is to keep you well enough to do as well as you can during and after the operation. Other than that, they told me that I am a rare blood type, B+, which can be a longer wait, or it can be a much shorter wait since I don't have a lot of people competing for the same pair as me. Depends how you want to look at it. Nothing I can change either way. Post tx is intense again, with the first 3 months being the most rigorous. Once a week PFT's, XRay's, and blood work to keep a close eye on what's happening with my new lungs. So basically lots and lots of work, but lots and lots of reward. That's how we think of it anyhow.

The program itself is incredibly impressive. We have dealt with less than impressive programs before, so going to a place where the people are this organised, this focused, and this knowledgeable is quite refreshing. After the Transplant Coordinator we met the dietitian as well as the social worker and we really were impressed by the people that we spoke to. There was definitely a sense of confidence that helped me as a future tx patient feel more confident about what I am about to embark on.

The coordinator told us that she will call us next week with the listing results. Meaning if I am a candidate for transplant, and did the team decide to list me. Though there seems to be no reason that I can see why I would not be listed, (or my CF doctor can see) this is a big step, and really the last hurtle before being listed and receiving my pager.

After our day at TGH, Martin returned to work and my mom and I got some sun in my garden. We talked about all that we learned today, there was SO much information, SO much to process and understand. When Martin came home a few hours later, we ate dinner and sat in the sun some more. Martin and I spoke about all sorts of things, and I thought about how much I have been through during the last few months. How much adjusting we all had to make. How many tears there have been, how much pain and frustration and illness. How many bad days, so few good health days. But today was the first day in a long time that I felt a little bit of the old me. I felt that by getting through the last few days I accomplished so much. They were hard, not horrific or terrible, but hard. Emotionally hard, physically hard, but I got through them and learned a lot about myself, and about Martin and my family. It's amazing how there are always things to learn, that always amazes me.

In the early evening Martin cut the grass, and did some work out front. I did a bit of sweeping (with my oxygen, as if it's not even there....how I am used to it now amazes me!!) and then my mom took over when I got tired. So I sat on the front porch and watched people walk by, watched my husband cut the grass, and watched my mom help out, and I thought, wow, today I am really really happy. Go figure. With all this, I am really really happy. Go figure.

Transplant Assessment

Since I got my tx assessment package in the mail, I thought I would share it with everyone. So that when the 19th comes, everyone out there is sending me positive vibes and prayers so that I can get through it without losing too much health, or losing my mind!!

Day 1: May 19th
8am: Blood tests, Chest Xray, ECG, Urine (total about 1.5 hours)
10am: 6 minutes walk test
- This is a self-paced test where you walk as far as you can walk in 6 minutes on a flat surface. You are tested using your own specified level of oxygen. Other exercise testing will also take place to measure endurance. Total time about 60 minutes.
12:30pm: CT Sinus
- People with CF have this test done to look for infection in the sinuses. This CT scan is going to be of my face. It will take about 15 minutes.
3pm: PFT/ABG's
- PFT's (which I always do in clinic) let them know how my lungs work; results are compared to someone my age and height with a normal lung function. An Arterial Blood Gas will be taken from my wrist (this hurts!!!!) to test the level of oxygen in my blood. These will take 45-60 minutes.

Day 2: May 20th
8am: Echocardiogram
- This is an ultrasound of the heart. To tell how well my heart pumps blood, as well as the valves in the heart that separate the chambers to see how they open and close. This will take about 45 minutes.
9:30am: RNA (MUGA) scan
-This scan tests how well the heart pumps the blood and the percentage of blood being pumped out of the body. It can measure how well the chambers move at rest and exercise. It will take about 1 hour at rest, and 1.5 hours for exercise. Two injections are requires.
1pm: Anesthesiologist
Anytime: PRA Level
- It takes about 15 minute to do this blood work. This blood work will screen for antibodies (immunity) to other people, and will be stored in the freezer for future tests. If I have immunity, further testing may be required to determine the strength of this immunity so that they can be prepared to care of me post transplant.

Day 3: May 21st
9am: Transplant Coordinator
- meeting to talk about the transplant process. Lots of questions about support people, life style etc. It will take about 1 hour.
10am: Dietitian
- 1 hour appointment to talk about nutrition, pre and post transplant.
12:30pm: Social Worker
- Talk about family support, living situation, financial issues if there are any, how to deal with insurance etc. 1.5 hours for this meeting.

Day 4: May 22nd
11:45am: V/Q Scan (Quantitive pulfusion scan only)
- This test will take 60 minutes. I will be injected with a nuclear dye into my vein. This will flow to my lungs and show up on the scanner.

I will be one happy woman on the 22nd, let me tell you. Once it's all done. Just writing all this down makes me ill. I've already done some tests at SMH and cannot believe how much more there is...!!!

A month from my past test is when the decision to put me on the list will be made. Right around June 21st, and my 30th birthday.

Patience

The nursery is really coming along now. It looks so good I can't believe it's not even done yet. Today I picked up a few odds and ends that really made the space pop. It finally looks like a little girl is going to live there, finally!


Tonight I will start the mural on the window wall. I hope that it will not be a big job, since it's just a few wallpaper-like elements that I will paint on. Wait and see I think it will be amazing! I think once that's done I will take some pictures, since I really want to show it to everyone. The chandelier is not here yet, even though it was ordered many moons ago....many many! And that's the final big item to come. But may be I will take come pics in pieces to give everyone an idea. We've been working so hard on that room, that it needs to be seen by someone other than us!! I was hoping to have it done much sooner, but with everything taking months and months to order, and my being sick, things have been really slow. This little girl better not think of coming to us earlier than expected.


Today I took a walk down Queen Street West and stopped at a really beautiful store named Chatelet Home. Imagine an antique store for your little princess. The most beautiful things you can imagine for a nursery, for a little girl of course....

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Okay, so the above was written a few days ago. I never finished it, as the last couple of days have been terrible. Generally I have not been feeling well, and last night I was terribly dizzy and nauseous. Strange symptoms that freak me out, and make me worry. This morning things seemed to have calmed down, so hopefully the day or two in bed has helped me out. Today, I hope I can get more done and more life lived.

I got my assessment package in the mail, and the dates for all my tests and appointments. Looks like by May 22 it will all be done with. From May 19th - 22nd the days will be long and the tests quite draining. I am not looking forward to that week, but just want to get through them, and get myself on that waiting list. That's my goal. Only then will I relax and focus on my babies birth. It looks like I will have a month or so before our little girl is born to get used to being on the waiting list for tx, and just focus on her arrival.

I think about what's ahead all the time. ALL the time. So many things are happening, I cannot imagine all this madness will be over within a years time. There is a level of calm that you have to gain during this time, otherwise you'll lose your mind with worry and thought and calculation. I just go day by day, night by night, and try to stay calm and focused. For those who know me, know that I am quite the Type A personality. I am demanding on myself, those around me, the world in general. I love to control things. I love to learn and grow and move ahead, never dwell or go backwards. To be in this situation right now, in many ways, is the Type A personalities worst nightmare. Total loss of control. Loss of the ability to demand yourself to do anything, your body won't allow it! AHHHH!!!! That's how I feel on most days. This, more than anything, is a lesson in patience.

Patience, patience, patience.....

Moving forward

Today was my first clinic visit since I have been back from the hospital. 10 days later, my lung function today was 26%, 0.94L. So the good news is that things are basically the same, and it looks like I am able to be home without getting worse. This is good news.

While I was waiting for the appointment, I got the call that I have been waiting for from TGH regarding my assessment date. I was so happy to hear from them. My appointment for assessment is going to be during the week of May 19th, which is really soon! I am so happy that I am not going to wait for months for that appointment. This means that during that week of the 19th I am going to finish up those tests that we started at SMH. Once those are done, I wait for a month to get listed. Which means....most likely I will be listed on, or within a few days of my 30th birthday!! Oh what a gift that will be.....well may be not what I expected, but I will be very glad to be on that list waiting. Very glad.

Home had been okay. Emotionally up and down. But physically I feel okay. I am getting more and more used to living with oxygen and more and more used to going out with it. I guess with time everything gets better. Easier and better. Overall I think that if my health does not get worse before tx, I will be very lucky. If I stay like this I will be very lucky. But time will tell how long I will be on the list, and how tolerant I will be of that wait. I think to myself every day that this is not forever, this is a finite time, and it will come, and things will finally change for the better. I embrace that thought every day, and try to ignore all the other thoughts looming in my head.

Our little baby is growing inside Beth every day. and on Thursday we have our 3D ultrasound that I am very excited about!! I can't wait to see more of her. I think Thursday will be a great day. I will post pictures and show her off when we get them!!

I don't have much more to add. I am quite tired from today's clinic, that always ends up being quite a long day. My next post will be much more interesting on the baby front. Can't wait for the world to see her as we get to on Thursday.

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!!