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)