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)

You ask me: Question and Answer

Today, following in the footsteps of my great friend Beth, I would like to do a question and answer post. It may be a total flop, but perhaps there are thing some of the readers want to know and have wanted to ask but have not had the chance. So ask away. About CF, surrogacy, transplant, whatever.....being the mommy to an amazing 6 month old with the challenges that we have...anything.

I hope I get some good ones. I am really looking forward to hearing from YOU and getting to know who's out there reading.

Scarlett welcomes questions too!! haha!

The first month

As I mentioned previously, I do not remember a lot about the first little while after my lung transplant. I do think about it a lot, and certainly I have heard many stories from family and friends and even seen segments from the media that have allowed me to 'remember' more. The truth is I don't remember how sick I got before. When I was still at my CF ward at St.Mike's and was put on the ventilator. As if it never happened. From there I was transferred to the Toronto General Hospital ICU where I waited for my lungs.

(Nearly 10 weeks post lung transplant, January 27th, 2009 - today!)

It was during this time that my family started to notice my rapid decline and the fact that I had little time left to live. I was sedated, and not breathing on my own. My lungs failed, I was hemorrhaging blood when I coughed into the ventilator and when I was suctioned. Martin was unlucky enough to have witnessed one of the the times that I was suctioned in the ICU and he said it was horrific. I was convulsing and bleeding a lot. So, my family decided to push for a living donor scenario. There was just less and less hope in those lungs coming. The first step was for everyone to get tested for their blood type. To every ones surprise both my mom and dad, as well as John were all B+ (same rare type as me) and Martin was O, also able to donate. Everyone was ready to donate a lobe, including my husband. Not a thought went through their minds not to, in fact they were all joking about who would be lucky enough to do it. We also got calls from my aunt in Chicago who is also a B+ and my uncle in Poland that was ready to fly in right away. When I think about all these people willing to go through this surgery to save my life, it makes me feel like the luckiest woman in the world. Their fight was just as strong as mine. I would do the same for each and every one of them in a split second.

November 21, 2009 came around, and my dad said he felt that I only had a few days to live with my lungs. He saw the doctors getting worried, running out of options after the Nova Lung started to cause problems. Martin said that he knew one way or another we were going to operate that weekend, but everyone thought it would be from family live donors. Martin was sitting in his office at work, ironically fixing up our Will, getting ready to be called into the OR when he got the call. It was not him going into the OR, I was, the lungs had arrived. At first he thought it was a joke, after so many ups and downs, it was hard to believe that now, truly in the 11th hour, a donor had been found. It was the best news he had ever heard he said. The news got around quickly. He called my mom right away, who has heading to church with Scarlett at that very moment to continue to pray for our miracle. When my mom called my dad, he cried on the phone, the lungs are here, her lungs are here!

My mom, John, Angie, and baby Sophie (who was only 8 days old at the time) stayed at our house during the operation. I always told my mom, no matter what, not to drag Scarlett to the hospitals. She needed to continue her schedule, and so that's what my mom did. Always respecting all my wishes regarding my baby. I trusted she would be a perfect babcia and caregiver along with Martin. So the 4 of them spent the next night at our house. Comfort in numbers at the most critical time. Martin and my dad were at the hospital.

My dad never left my side. He slept in the chairs, in the waiting rooms, even though others told him to sleep, go home, rest, he rarely did. He just could not leave, even though I was unconscious and in the impressive hands of the ICU at TGH. Those people kept me alive. I have a lot of people to thank before I even went into the OR.

(Holding my favourite Christmas gift from friends Kelly and JR - my new lungs in plush blue)

It was my dad and Martin that walked with me as they wheeled me into the OR. Martin and my dad remember the dramatic unplugging of all my tubes and devices, and that being a very scary and emotional moment. And the the doors closed, at that was that. It was all in the hands of Shaf Keshavjee and Tom Waddell, my surgeons, and the many other staff involved. I wish I could know them each by name and person. They are all so valuable to me, and all so committed to saving peoples lives. I don't remember really waking up and the days that followed in any logical order. I remember one time waking up, I think I was still in the ICU but I am not sure, and my dad's face and Marty's and them saying to me over and over, you got your lungs, it's all over. Big smiles all around. On my end I felt nothing but discomfort, confusion, and distress. I was unable to move, and had tubes coming into my nose, throat, hands, everywhere. I was confused as to how I got in that room. I could not speak due to the trach, and I found that difficult and I panicked a lot as a result. I remember the horror of the panic of not being able to move. I had pain medication that was used liberally, so I was not in terrible pain. It was more a tension and stillness of my body that I found unbearable. I was soon sedated again since I could not calm down. It took me a long time to discover that I had had my operation, I was alive, and that I had been very very sick. This took the longest for me to realize since I did not remember a thing.

(Seeing Scarlett again on Christmas day)

Over the next month the recovery was the hardest part of my life thus far. Before I turned the corner, both mentally and physically, I went through a dreadful time. My brother said that I looked constantly in shock, ready to die, cry, ask and beg for help, even though there was not much anyone could do. Time had to pass, meds had to work, medicine had to do its thing. But after dealing with CF for 30 years, one comes to think of lung transplant as the easy part. At least that's what I thought. I heard stories of people leaving the ICU in 2 days, then out the door and home in 10 days or 2 weeks. That is what I expected for years and years. I did not expect for me to get so sick, so fast and to have to fight like I did.

By far the hardest part was not being able to move. I began to get sore, and agitated. Lifting my arm over my head was impossible so I started with physio by just lifting my leg a few inches, my arm a few inches, stretching my toes up and down, and trying to sit up in a big chair for an hour or so a day before getting back into bed with the help of a lift. It was devastating for me to have to go through that. I felt very sorry for myself and really believed for the first few weeks that I would never walk or move again. A silly thought when I think where I am now 2 months later. But when you expect something so different and wake up one day, and this is what you have to deal with, your mind plays tricks on you.

Martin had a lot to do with my rehab. He took time off work and worked with me for weeks, until I was walking with him down the hall. Large walker, small walker, holding his arm, then on my own. We did a full weights program, Martin pushing me all the way. Even when I did not want to move from bed. He would make sure I got my pain meds, that I ate, and that I got out of bed. It was the hardest part. Sleeping was easier since it was so much work to move. But things got better and better. Every day a better step, stronger legs, small changes. My body began to respond.

(Arriving in the TGH Atrium December 26th, 2009 - 1 month post transplant)

There were set backs along the way. Since I was so weak, I was in bed longer, and unable to get to the bathroom for nearly 5 weeks. This is so difficult as an adult. I had to wear a catheter that was removed quite early as to prevent infection, at which point I wore adult diapers and used bed pens. No one really talks about such things, but the challenges of that are huge. I was also on Lasics at the time, which is a medication that makes you get rid of the extra fluid that your body is holding, which meant that I was urinating all the time. And when I say all the time, I don't think I can even describe how much that was. At times I would wake up to a bed soaking from top to bottom. Needless to say, the doctors soon evaluated me and noticed that what was happening was unusual. My bladder had stopped contracting and letting me hold urine. So I went back on the catheter to make my life, and those poor nurses that were in and out of my room 24/7 lives easier. That time was so hard for me. I had bladder pain from not being able to empty in time. I had bowel pain. It was insane. There were nights that I prayed for relief in any form. Most of the time I got good drugs to help me sleep and get relief.

So I know that was too much information, but I said I would be open. After that when I got stronger, the doctors told me the catheter had to go. I had all my tubes removed and it was the last to go. I was so horrified that I would have no bladder control again, but this time they took it out and everything worked as it should. The muscles had come back, like everything else in my body. It was just time, strength, and it felt great to feel that much more in control of things. Let's say that I will never ever take for granted such simple things again.

So that was my first month. The second was wildly different. I moved ahead faster and faster. I spent more time alone, without as many frets about being alone. I started to gain confidence in myself and in my new lungs. I reached a new plateau those last few weeks.

The second month...To be continued....

Amazing things.

Today I was at my TGH clinic. Another super long day. It started off a little bumpy, literally!! When heading out this morning to the car, with my mom Scarlett in tow (since I can't drive yet, I have to rely on my mom with Scarlett to drive me) I fell on the road. I did not slip, there was no ice or snow. I just stepped off the curb and my knees just gave in. Ouch! I forget still that my knees and legs are so skinny and there is so little muscle! Yikes. It was not the nicest thing to have happen at that early in the morning, especially since I knew I had a long day ahead of tests. As far as I can tell all is okay, one sore and bruised knee.

So I had my PFT's first, followed by treadmill room (basically physio - treadmill, bike, weights, and legs....I have to continue until 3 months post-op) then blood work, xray, and finally clinic. My day started to my pft's, which are the tests that require the patient to breathe in to a machine and find out lung function. I know that not all my blog readers out there know all the CF and transplant lingo and tests, so I am going to explain as I go along. Anyhow, today we saw another incredible number. My new lung function is 76% (or 2.65L for those that follow those more accurate numbers).. I was in shock. About a week ago I was at 63%! My family and I are so happy, we're thrilled. It's all like a dream.



Clinic went really well. The doctors are thrilled with everything, and hope that it all keeps on track like this. My drug doses were changed, so that I am not on such high steroid doses, and that's always great news. My xray is pretty, clear, and when the doctor looked at it today, she was thrilled that after 2 months and all that I endured waiting for my lungs, they were able to achieve such positive results. I can tell from the staff, everyone in surprised. To be honest, I am too. I believe in science and medicine, but really it all just feels miraculous to me. From what was a bad dream, so just plainly a dream come true.



I am very tired, and am off to bed. Scarlett is long asleep, the good baby that she is. Mommy's little helper I think of her. Being to sweet as mommy goes to her clinics and tests - and it seems like she understands it all. That we need to stay strong together, not only her and I, but her daddy, and grandparents. Stay strong and keep going as we have being. Together, no matter what, how hard it got. And it got so hard, and now the clouds are parting, and 2010 has emerged, again like a dream.

Myslef and Martin with our little Scarlett - who loves to hold on to daddy's hair!!

Home tomorrow, 63%, and a little Jungian perspective

Sorry for all those expecting what I promised, the more itty gritty parts of transplant in this post, but that will have to wait. I am actually working on that one. It's started, but other things came up during this admission.



Needless to say I am tired of being here. Really really tired. I feel really good, and run around this place, or ride my stationary bike to keep those new lungs working. I am loving the fact that I can ride that bike on and on and as my legs get tired, my lungs are no where near ready to quit. That's pretty cool I have to admit. Pretty darn cool. I get my heart rate to 156, and my SAT's (oxygen) stay at about 97% on room air. Whoaaaa. I know. My pulse is raging and my body is working and my heart and lungs can work together to exchange those gases and safely deliver them where they need to go. It's like magic. Well not really, but it is like a healthy body, or one trying to get there.


I am only starting to enjoy this recently, and I am not sure why. Why I have been so hesitant to let go and enjoy the gains of this battle that I am fighting. There are so many gains, yet I have found myself focusing on the negatives over and over. Very unlike me. Is this the new me? I don't think so, but the change that I do feel is profound. May be one day I will get it, may be this is just part of the healing and it will go away, or may be it will just be like it is now. What I am mainly talking about, is fear and anxiety. In that specific order in fact.


Recently I have been speaking to a spiritual counsellor here at TGH. I did not want to speak to a priest (I already know to pray, thanks) or a psychiatrist (I don't need meds nor a quick fix) I just wanted someone to speak to that would listen and, if I am so lucky, give me some insight and may be a book. I was lucky when I met Derek, I got both. We spoke about my being tired of being sick. of a need for a break, for me and my whole family. We also spoke about death, mortality, those thoughts that creep up here and there post transplant. Normal thoughts he said. I'm sure, of course, normal, but this kind of normal is still a difficult one to live with.


The book I got to read is Swamplands of the Soul - New Life in Dismal Places by James Hollis. The chapters are divided by emotions, which I really like. I opened up to fear and anxiety right away, and just found it so right on, that I was more and more pleased with myself that I found my way onto Derek's office door step. One of the fundamental questions in that chapter: ...why, then, in the midst of something wondrous and transcendent, would one feel this undercurrent, this pull down into a dismal swampland? Good question. Why is it, that I am doing so much better than I have in years, had the gift of life given to me at the last possible moment, when my life was seemingly expired, why after all these gifts am I riddled with anxiety and panic.



As the process unfolds, my transplant journey I guess it can be called, this anxiety and panic is getting better. As I improve and find more and more of my old self within this new one, I feel it's easier to cope, and not only that I find myself having to cope less. What does James Hollis say? It seems like the only antidote, the only way out he says is to face these fears and anxieties head on. He quotes a poem by M.Truman Cooper that I love so much, it's so simple yet it explains it all to me:



Suppose that what you fear
could be trapped,
and held in Paris.
Then you would have
the courage to go
everywhere in the world.
All the directions of the compass
open to you,
except the degrees east or west
of true north
that lead to Paris.
Still, you wouldn't dare
put your toes
smack dab on the city limit line.
You're not really willing
to stand on a mountainside
miles away,
and watch the Paris lights
come up at night.
Just to be on the safe side,
you decide to stay completely
out of France.
But then danger seems too close
even to those boundaries,
and you feel
the timid part of you
covering the whole globe again.
You need the kind of friend
who learns your secret and says,
"See Paris first."



I'm not sure what answers I got from this poem, and from these chapters and from this book. But I certainly understand that after the experience I have had, so different and unique to my life thus far, fear and anxiety is the norm. I have the choice each day, at this point in my recovery to face depression or face anxiety. Nice choice huh? But that is exactly how I feel. When I sit back and feel helpless I get depressed. When I move forward and onwards, I get anxious as I have to face the unknown. But there seems to be progress. One last quote to bore you guys, that I really liked, and made me think: "Anxiety is the price of a ticket on the journey of life; no ticket - no journey; no journey - no life" Somehow this explains it all to me. Suddenly. What it says to me, it's all worth it.

Enough of the psycho babble, I think I've bored you all by now. Today has been a great day. Everything looks good for going home tomorrow (Thursday 21st). This I am thrilled about. The other amazing news, that has me and my family thrilled, is that my lung function this morning was 63%, 2.3 L. Only a week or so ago it was 48%. This change is incredible for me to see. It is encouraging, and has me really motivated to see how much more it will rise and how quickly. It is certainly the kind of news that you want to hear.

My mom and dad, proud grandparents, with Scarlett (now 6 months) and Sophie (now 2 months) on Christmas day in the Atrium of TGH.

A bump in the road - 8 weeks post

Wednesday I had my first biopsy of my new lungs. When they went in, they found infection. But that's only part of the story. After the bronch I was really ill. Doctors said i just reacted badly to the biopsy, my lungs became inflamed, and the reaction was vomiting, severe chills and total misery. I walked in there for a few hour appointment feeling great, and ended up terribly sick. Anyhow, going back to the mucus they found. The reasoning is I developed a sinus infection that drained into my lungs. I'm not going to go into specifics of Wednesday night, but it was a rough night. I got a bed later on that night on the same floor that I was just discharged from 9 days earlier. I have been put on a 3 week course of iv antibiotics to get rid of everything in there.

There are two pieces of good news here, may be three. One, I have no rejection. Two, I can do home iv's after they see the iv's working. Three, this is very common with CF patients since our sinuses are still CF, but our lungs no longer. So this is not a huge set back, but more just part of the process. I have become really good at accepting that things take time. Lung transplant is such an undertaking that really teaches patience and the ability to look past this moment and know things change every second, minute, every hour.

I am feeling stronger and stronger and gaining weight! I am, as I write, looking at my bike and weights, that I use in the hospital. I am starting to move faster, with better balance and range of movement.

But enough about today. I am wondering at which point in time is best to tell about my experience. I really don't know. I remember so little, in fact I don't remember anything from TGH until I was in step down. That's a long time. I feel like that loss of time has completely made my head different, the way that I perceive things. I feel that time lost, and I don't feel good about it. My last images from St.Mike's are of me doing pretty well, waiting for my lungs. After that - blanc - and I was told the story of how I started to be in more and more pain, more sedation, then I was vented. I don't remember even the slightest snippet of that. Then I was transferred to TGH, and a week after being in critical condition waiting and being on every machine known to man to keep my body going. They did amazing work in the ICU. Again I don't remember this but most of the gest you can get from the CBC interviews. I watched it and I could not believe that was my life. That was me!!

For me the real fight started when I was fully aware of what was happening to me. I woke up, I don't remember who was with me, and it hit me that something has happened. I could not stop looking at my arms, they were like a skeleton. Then I lifted the sheet and saw my legs, my scars, it was horrifying. Of course I was on many sedation drugs and pain killers, so everything was extra dramatic, but I can say for sure when I woke up I was in shock. My brother John told me recently that I was like a wounded soldier coming back from war. I would flinch when someone touched me. I remember my skin really hurt, and my tail bone since it stuck out so much. This 'shock' lasted for quite some time. Only now do I feel okay being alone. All those anxieties passed once I got walking around and eating well.

The hardest part for me was being unable to move. I tried lifting my arm, it did not work. I tried lifting my leg in bed, it would not budge. I was in that state for about 3 weeks. It wore on my quite a bit. My mom spent a lot of time with me in the evenings and we would set up a whole spa. We did the whole routine together every night, and I loved those nights. They were my favourite. The hospital was dark and quiet, my room always had low music on courtesy of my husband that set up our iPod. Think Enya or Sarah McLaughlin. My mom would help me brush my teeth without me having to get more pain killers. I was in a lot of pain still from the operation. She would brush my hair, and do a full sponge bath with my favourite lotions. It was so nice. But I remember that time well, and I was in such a dark place. Emotionally I fell apart. I don't know what happened, but it was all too much for me then. I had panic attacks that were beyond my control, something I started having while waiting at St.Mike's, when I could not breathe. Overcoming the emotional part is just as difficult as the medical part. If I were to walk into that operating room months earlier, it would have been different. I had to take the hard route. haha

I guess all change is hard. Most of us are not good at being thrown out of our happy little lives and be forced to be a patient and nothing else for a period of time. There is something very fragile and at the same time very powerful about such a dramatic change. Things right now are moving forward and that's all I can ask for. I hope to be running by the end of February at the gym. I also want to keep gaining as I have been and have each day get better.

Next post: the gory part of transplant. Ok may be not gory, but for sure humiliating hospital experiences.

............. and this is our Scarlett at nearly 6 months!!

....ok and for those of you that have not had enough, a video.....

(I promise that's it)

Home

January 6th, 2009 I finally got discharged from TGH. Home after all this time.

For the past 4 days I have used this time to settle in at home, and spend time with Martin, Scarlett, and the rest of the family. The first day was very hard, as I just learned to walk the stairs and was not sure if I would be able to do so at home. But things got better each day, and these past few days have been strong, and quite amazing.

Today my Scarlett reached out for me, for the first time, and though I still can't lift her due to rib and chest pain from the surgery, it was such an incredible thing to experience. My daughter and I seem to fit like mother and daughter, and no amount of time, and illness, and hospital time will change that.

I feel like now I am ready to start to tell my side of the story. It seems like when I was far gone, the paper and the news told their version and my family's. But where was I during all that time? I have lots to say both pre and post operation, and I am going to start to write. I want to be truthful, and tell it how it is, and though the outcome is such a miracle, the ups and downs of transplant (how it was for me) is something I want and need to share. It make take me 5 posts, it might take me 20. but there is lots to write, and I can't wait to share.

I want to thank everyone, again and again for the support on the blog, the house, the hospital. For the cards, well wishes, presents for the whole family, the food made, the emails, the texts, the calls....and on and on. I cannot thank everyone in person, even personally, but here I thank everyone. I feel like it was not just me in that operating room, it was the hearts, and prayers of so many people, and my great city Toronto. I am immensly flattered, as my lung transplant is one of 100 last year. Including many people that I know, that are just amazing.