Day 5 at St.Mike's

I am glad to post that I am feeling better. Far from where I want to be, but better. The IV's seem to be doing their job and along with all the other treatments I am heading towards the right direction for now.

Many people have asked me how I spend my time in the hospital. You must be so bored people say, and to that I say, that time passes faster here than it often does on the outside. Part of it has to do with the fact that whenever I am in here I am quite sick, and working on getting better takes a lot of time and energy. The last thing that you think of is being bored. For those of you who are curious, especially those CFers out there, here is my daily schedule right now. I am always curious about what other people do to stay well (or don't do for that matter) so here it is:

7am wake up.
2 nebulized masks (Ventolin, Tobra, Pulmazyme)
2 puffers (Pulmicort and Oxeze)
8am Physio (30-45 minutes)
Pills (ADEK, Losec, Zithro, Singulair)
9am Lentis Insulin
Pre-Breakfast blood sugar
Eat breakfast (try to get fat....or fatter)
11amPost-Breakfast blood sugar
1pm Pre-Lunch blood sugar
Lunch
2pm 6 minute walk and record distance and SAT's (every other day)
2:30pm Work out on bike or do a cardio tape (30min)
3pm Post-Lunch blood sugar
6pm Pre-Dinner blood sugar
Dinner
8pm Post-Dinner blood sugar
9pm nebulized mask (ventolin, tobra)
2 puffers (Pulmicort and Oxeze)
physio (30-45 minutes)
pill (Losec)
11pm sleep

When I'm at home I have lots and lots of time to do other things. When I am in the hospital, between those times when I am doing something, I get seen by doctors, nurses, respirology technicians, dietitians, physio technicians.....it goes and on and on. Blood work here, blood gas there, and you basically have very little time to yourself. That's why time does fly. It's when you start to get better and people leave you alone a bit, that you start to get bored and that's when it's time to go home! Plus I have my handy laptop to keep me occupied and a TV that sometimes I love and some times I hate....I would get more reading done without it.

So that's that. I am still on oxygen. 0.5L at rest, and 3L with exercise. 1L when just walking around. My SAT's are going up each day, so may be, just may be I will be able to get myself off the oxygen. That would be really nice.

That's all for now. Thank you all for your support through all these ups and downs.

On Grief and Pain

The past few weeks have brought me back to those few times in my life that time has stood still, that reality seems to be quite unreal, and that the truth of my illness seems to pour out of every pore of everything around me and my family. I am glad to say that I have not been in this position for quite a while. May be 6-8 years. I have had small episodes, but these moments are different. Along with the physical, comes the grief and the emotional pain. It's difficult in many ways and this time it's even harder as we are expecting a baby, and the thought of not being there for her is proving to be very stressful for me. I know that I will be okay, I have faith and hope. I have been here before, and I will be here again, that's the nature of this illness, but it seems like every time it's just as hard. You forget that it will get better, and that you will be able to walk and move around normally again.

Recently I have been reading many blogs, ones that I follow, and new ones here and there. Many of them are from other CF patients, some are transplant recipients, some deal with infertility, adoption, surrogacy....a whole range. But throughout all these runs a common theme, pain. Mostly emotional pain. The sorrow and grief of what people go through. In the last few months, I have seen so much pain. I have watched a fellow CF patient become very sick and pass away on our ward. I have read about a girl write on her blog about her CF struggles and read a few days later that she had passed away after her life long battle. During the same months I read countless blogs about couples that had been trying to have a baby and could not. Couples that had undergone their fourth, fifth, sixth IVF cycle and were just so worn out and angry after the process. Women that had miscarried....for the third time. Women and men that had lost babies, preemies that they worked so hard to bring into this world. I had also watched a good friend of mine go through the heart break of a divorce when she tried so hard to make the marriage work. So much pain, and not enough words to describe it all with clarity.

This reminds me that my pain is universal. Mine might be due to CF, and someone else's due to another affliction, but we all feel the same things. It does not change the pain, but it changed my ability to cope with it. It certainly makes me keep my self wallow in check.

When I was in my late teens/early 20s, so at least 8-10 years ago, I met a woman named S. I needed a summer job, and S hired me to help her out with her kids and in her house. Her ad mentioned that she was disabled and needed help. I liked kids, and liked helping others, and needed a summer job that really was making a difference in someones life. I did not want to work at the GAP (not that there's anything wrong with working at the GAP!!). When I met her for the interview at her house, I loved her right away, and she seemed to like me. So I got the job, and I started the next day!

Needless to say that S made quite the impression on me. I soon found out her history. She was living with Muscular Dystrophy. She was in her mid 40s, had 2 kids and a husband. S was unable to move really any part of her body. She had control over her hands, and some of her one arm. But that was pretty much it. Her way of living her life was incredible to me. I was very young then, and my CF had not brought yet it's awful realities. I feel like I have learned more from S now, then I did then. I think about her often now. We lost touch a few years ago, and I think that (after some research) she is no longer living. I think about her and what she would do during these terrible times. I remember her telling me about her life. How she was already on crutches on middle school, and a wheel chair in high school. Imagine that loss, that grief, of losing your ability to move your body piece by piece. She told me to think about what's important in life. Her husband and her kids, her community, her ability to communicate with others, her ability to laugh, and learn, and her insight that this pain has gained her. That is a gift that not many people have. She had it, and I hope that with time it is a gift that I learn how to appreciate.

There is so much hope in S's story. She was told not to try to have kids, that carrying them would kill her, that it would be a horrible mistake. But she had those two boys (that are now teens) and they were the light in her heart. She did all these wonderful things, and was even able to teach me along the way about keeping hope alive in my heart. I have to say that I have made many decisions in my life while thinking about S, how she would handle it, and what she would advise me to do.

This post is for all those out these right now facing grief, sadness, and despair. I know your pain, whatever it may be. I wish I was better right now and had the ability to do normal things. I wish I could go grocery shopping and make dinner for Martin. I wish I could take care of the house on my own, plan for my baby, plan my future in the most simplest ways. I wish I could walk, and run, and be strong for other people, not just have them be strong for me. I wish I could take care of others not just have them take care of me. These things are such losses for me. I am now back in the hospital, and will be here for a while. Today was day 1. I am thinking it will be at least 21 days, may be more, before I am back home.

The beauty of hope however, is that no one can take it away from you. You can always close your eyes and think whatever you'd like. Close your eyes and think about the things that you have, and those that you wish for and hope for. Right now, I close my eyes and I see myself walking down the street without choking or coughing or stopping. I see no oxygen. I see that freedom. I want that freedom, and have hope that it will come. Then, of course, this summer, I see the birth of my little girl, and her seeing me without all those tubes coming out of me. Just her mommy ready for her. I also see the things that I have now that are so amazing. Martin by my side, no matter what. As he is now. Funny and strong, and somehow able to make me smile no matter how hard things get. I love him very much and am very lucky to have him.

I hope that for all you bloggers out there that are facing grief and sadness and loss right now, that you gain back the hope that you need to live the life that you have been given. I certainly hope that for me.

Where do I start?

I know it has been a while since I have posted. It seems like every time I want to write, something happens and I am again too busy or too disoriented to post.

Well I am now ready to write more about what's happening with us.

As all you know I have been back from the hospital since last Thursday night, after a 2 week stay. I left feeling good, with my lung function by no means great, but back to a safe place that they deemed okay to get me off of the antibiotics. I was given oxygen for home use, which is very new for me. It was a hard realization for me that this might be a new reality for me, but the doctors were hopeful that by using oxygen when I needed it, I would regain my strength. I started to feel poorly about a day after I got home. I needed more and more oxygen, and would now say that I feel worse than ever before. I have never had this low of a lung function and been on oxygen before. This is obviously a stressful time.

So I went to clinic yesterday, and had a long talk with the doctors. We came to the conclusion that I am obviously at a crossroads with my health. The fact that I seem to get worse right after stopping IV's, the fact that I need oxygen with exertion, and that my lung function is as low as it is, points to the fact that things have changed and it may be time to be assessed for transplant. The plan right now is to treat me aggressively and see if we can get me off oxygen, increase my lung function, and keep me off of antibiotics for a significant amount of time. If these things are not able to be changed, we have to start to think about transplant.

This does not come as a surprise to us. Martin and I had a long conversation on Monday and came to the conclusion that it was time (we have talked about it for years) and if nothing changes with in the next little while, that this standard of living that I have now is so compromised, that the thought of new lungs is becoming more and more something to think about. I have to admit, the past year has been very hard. But I was able to pull it together and work through it. Basically i did a huge amount every day to feel okay, and it was worth it. During the last 6 months, I feel like I spend 90% of my day working on my health, and there seem to be no returns. Now with oxygen, and less mobility (since I am having a hard time breathing and am very tired all the time) I seem to be thinking that it's becoming impossible for me to keep going like this. There is a breaking point and I have reached it.

Of course the timing could be better. Of course. But when is a transplant a thing that you can fit into your life on a whim. There will always be something. Now it is the birth of our baby girl (who might be under a year old when I get my lungs) but later it will be everything else in her life that I will not want to miss. There will never be a good time, thus if the time is now, c'est la vie.

Having this happen has made us think about the time when our little girl will arrive. Since things might change during the next half year due to my health, we decided (as a family) that my mom will stay with us and help us with the baby, instead of a nanny. If I am listed, it is the only way that this can work. It will be great. Three women of 3 generations hanging out together. When I am well, or when Martin is home from work, my mom will be back and forth from her home to ours. My parents do not live far. As a family we will get through that time together. I have all the confidence in the world about that.

Needless to say, our house is never boring. What next?!

My focus right now is to see if I can get past this, and see if perhaps it's not time yet. Only time will tell if it is. I am working hard at it. Harder than ever. I am working out on oxygen, doing a 30 minute cardio tape every day using oxygen. Trying to get my legs back, as well as regain my saturation. I would love to still get off oxygen. But I am also aware that transplant time will come. If it is now, there is nothing I can do but make the best of this time. How do I do that? Hmm...well I'm learning that right now, since instinct tells me to cry and scream and yell. To ask god why is life so hard?! But that would not help anyone. Not me, not Marty, not anyone else. So I choose to have hope in what the future holds. Hope and nothing but hope.

During the next few weeks I will update this blog with regards to my progress.

As for our little baby girl, she is doing well and growing inside Beth's belly. Beth says she's mega showing...and I cannot wait to see her. I hope it is soon.

Home sweet Home !!

So after 2 weeks at St.Mike's, I am finally home. Time actually went by quite quickly, since I was so busy working at getting better. There were so many ups and downs during the past 2 weeks that I feel like I have grown so much. Hence, it's time for a Blog design change....

I have a lot to share about what's happened, and how these past weeks have changed my life in so many ways, but tonight I just wanted to say hi, and let everyone know that I am home and well. Our baby girl is also well, though Beth (along with the rest of the world it seems) is suffering from a cold. I wish her a speedy get better.

We are nearly 21 weeks, and I am back to planning the shower, waiting for the nursery furniture to arrive, and all the other odds and ends that are coming our way during this time. July will be here before we know it.

Glad to be home, thankful that I still have the ability to grow and learn and live my life.

Our 19 week ultrasound

So there she is. Out little girl. How much do you love that picture huh? Martin and I think she's just perfect, and we have not met her yet.

The day at Mt.Sinai was all that we could have asked for. Beth was able to make great time getting to Toronto, and I was able to get a day pass to leave the hospital to go to the appointment. Beth arrived at our house first (since it's up town, and much easier to get to from the 401) and then her and Martin drove downtown to get me from St.Mike's. From there the 3 of us went to Mt.Sinai.

When we arrived we got Beth checked in and filled out the paper work that was required. During that time we had a visit from Martin's dad who is an OB on that floor. It was a nice visit, and it was great for him to meet Beth. He was very impressed by her, and later told us that she seemed like a great lady!! And he's SO right!!

We then went to have the ultrasound. Our technician was the nicest lady you could ever, EVER ask for. She seemed excited and was more than willing to write down the gender for us on a card, and not reveal it to us at the appointment. We then started to peek into the world of our little baby. We saw her little feet, and hands, and nose. It was so amazing I cannot describe it in words. Everything that was negative in me (from the past hard week that I have had at St.Mike's) left my body, to be replaced by such an outpouring of love that words cannot describe. Martin and I watched in awe. She seemed so perfect, and she looked so healthy and strong.

Our little girl of course did not want to reveal her gender to us!! Our technician checked and checked. An hour passed by, and she called another technician to help her look at the pictures. They were only about 70% sure, and wanted to be 100% before we left. At that time, we kept telling her it's no problem, we'll get the 3D ultrasound soon so we'll make sure we know the gender for sure. We felt so bad for keeping her. But she insisted. So Beth went to the washroom, and we tried again. This time our technician was sure, she said. She printed out three pictures that we liked, wrote the gender on our card without us seeing, and we were on our way to the OB appointment.

The doctor that we saw was the same one that I saw about 2 years ago for a pre-pregnancy consultation. Dr.Sermer is a great guy, aside from being a great doctor. He made us laugh, and was very supportive of our decision to use Beth to have our baby. I know that him and I had a long appointment those years ago, and he was very clear about the risks that I would be taking on carrying my own baby. But he was willing to help me either way. I value him for that.

Dr.Sermer went through all the regular information with us. Everything looked good, and we spoke about how we would be having this baby. We decided to induce at 39 weeks, to ensure (the best we could) that we would have our little girl in Toronto. (to the best of our ability) We are all so happy with that plan. Hopefully that little girl of ours will co-operate!! But we shall see.

We left Mt.Sinai in good spirits. Martin and I went back to the house and made sure that Beth was okay to go back home. We parted by me promising Beth that I would call her later and tell her what we were having. I know she was so curious, and I love her for letting us have our own moment before she knew. It really shows her spirit to us.

Martin and I were very curious to open our little envelope. It was this great surprise hiding in my pocket book. I could not wait!! We ended up going to our favourite sushi place close to our house. I had a few hours left before I was due back at St.Mike's so it was a great opportunity for me to eat real food!! So we ordered our Sushi and sat there ready to find out what we were having. We had the card ready to be opened, so that we could both see it. We were SO excited, but didn't want to open it in a hurry, since it was such a fun experience. On the count of 3 we opened the card. I yelled out in joy, "It's a girl!!!!???" and I think Martin said the same thing. I started to cry right off the bat. I felt so lucky, so privileged. I don't know why, but I did. I was beside myself with joy. I kept saying...a girl....we're having a girl....It was a shock. The greatest shock of my life!!

Over the next hour we chatted about it all. Who she would be, what she would look like...it was amazing. To talk about our daughter. It was great.

I went back to the hospital the next hour, so happy. I was ready to take on the world. I was ready to fight CF with more vigour. I have always heard parents say that children give them energy and strength. Well it looks like our little girl has done that already. Before she has come into this world, she has given her mom more than anyone else has ever given her, the strength to persevere.

Martin and I have decided on a name, but are not telling anyone. We want to introduce her using her name once she is here, not sooner. I cannot wait for that day in July when she is home with us.

We're having a.......

* GIRL *

Today was by far one of the best days of my life!! After this past week going as it has, and the sorrow I felt last night, today was just incredible!! I will write more about the day tomorrow, but wanted everyone out there to know the good news!!

Today inspired me so much. To continue my fight against CF with the spirit and the honour my daughter would want of me.

We love her so much!! And Martin....well he's so SO in love already!!
(pics and whole story to follow)

Hospital time once again.

I know that I have been very absent from writing, and I hope that I did not worry anyone. I know I got a few emails from people that were asking me if everything was okay. Things are not awful, but they are not ideal at this time. Last week I started to have some scary numbers from breathing tests, and then some symptoms of infection, so I was admitted into the hospital on Thursday.


What got me here, again, is what I will write about first. About a week ago, I seemed to have started to feel unwell. A cold I guess. Slight pain in my lungs, feeling tired, then a bit of a cough. It always starts this way. One night I had a mild fever. This resulted in a visit to the clinic, and some tests. Then came a very low lung function. I will not write down how low, as to not scare any other people with CF that are reading this, or for those that know these numbers. And, well, I simply cannot bring myself to write down the number. Trust me, when I say it was low. Alarmingly low. I felt defeated when I did my breathing test, since I have had such a great few months. I could not believe these were the numbers that I was getting.


This resulted in the present hospital stay. Upon being admitted, I had several tests done right off the bat. The fact that I was having this chest pain, but no other common patterns of infection, lead the doctors to believe that it could be something else. We wanted to rule everything out before we went down the trusted IV antibiotic path. The symptoms that I was lacking was a fever (I had only had a very mild one a few nights earlier, but nothing since), an increased cough, high blood sugars, or shortness of breath. Other than being tired and having that lung pain, I was not feeling what I usually do when I have an infection. It was strange. So we did all the tests. CT scan, x-ray, blood work...it went on and on. Then, when everything came back okay, even the blood work showed normal white count in my blood (showing lack of infection), we did another lung function. That was done the next day, and by then I had started to cough up more and more, a sure sign that an infection was starting. The lung function came back much better, more close to what I usually am, and my SAT's were at about 94%. I felt good about these results, as they calmed me down. But as I was feeling warn out, and tired, and my cough (especially in the morning) was quite aggressive and productive the conclusion was that I did have an infection that we simply caught early. I was then started on a nice cocktail of IV antibiotics, and that is where I am now.

Today, a walking test showed that I was unable to keep my SAT's up while walking. They were down quite a lot, unlike what they were at rest, so as it stands now it looks like I will need oxygen when not at rest. I did not expect this to be the case. I have only been on oxygen once in my life, and it was nearly 8 years ago now. It was when I had influenza and as I got well, I did not need oxygen. This time I can only hope it is the same situation. I hope that once I get better, I will not need oxygen. I can only hope.

It has been a difficult time for me. Today made me feel helpless and sad. This illness is a constant of milestones. But unlike most milestones in life, these are the ones that you do not want to reach. More meds, more IV's, more hospital stays, oxygen. Every step is hard. It's that feeling that no matter how hard you work at it, how hard you persevere and no matter how strong you stay, there is always that reminder that this will get me. It will ruin my lungs, and take away more and more from me each day. Just when I think I have somehow overcome and won the fight, I fall and get reminded of what I am living.

Today, I thought to myself, "Where is the strength for all this supposed to come from?"

Tomorrow is our special day. I will be allowed to go, and I am happy for that. I was worried that I would not be able to, but I am well enough to get a day pass from my hospital for the ultrasound appointment. Our plan is a different one, for how we will find out the sex of our baby. We have decided to have the ultrasound technician write down what we're having on a piece of paper and put it in an envelope. This will only work of course if we have a cooperative technician that wants to do this for us. I want Martin and I to get the news in private later on, and then to tell everyone. I want us to be alone during that moment. Then of course, I will tell EVERYONE!!! Beth being one of the firsts of course along with our family, friends, and the whole world via my blog. I promise to write my blog tomorrow night, since I know I have been polling and asking you guys about what you thought for weeks, so you guys all deserve to know!!

I will try to make tomorrow great, without thinking about going back to the hospital afterwards, without thinking about all that has happened during the last week. I just want to enjoy the day and think of our baby and nothing else.

Next time I write I will know if I will have a son or a daughter. What a thought?!