The Big Issues

Well, I'm happy to report that procrastinating one day worked out well for me for getting the H1N1 vaccine. There was absolutely no line-up, so I was in and out in no time! I am also happy that 65_RedRoses was on tv last night. This version was well-edited, and had great impact while being very inspiring. I am so glad that my friends, family and co-workers watched it. I have appreciated every email, facebook post and phone call in response to the film. I think it really gave people an idea of what I'm going through.

Watching the film again made me examine where I am emotionally in the whole tx process. I think I have come a long way in the last few weeks since my last hospitalization. Going in last time was hands-down the worst I've ever felt. Being so short of breath scared me. My tx assessment appointment also helped me along. I think getting to see the hospital, meet the staff, and take the next step in the process was very beneficial. However, when I watch the film and see how excited Eva is to get the call and be wheeled into surgery, I realize I still have a little ways to go. I like to make lists, so here's a list of my hang-ups, in no particular order:

1. The pain. I have talked to others transplantees and most of them report that the pain was pretty well managed. It still freaks me out to think about the pain I might experience post-surgery. You'd think with all of the PICCs and IVs I've had that I'd get desensitized to the pain factor, but that's not the case. I think it's mostly psychological... but it's still there.

2. The anxiety of waiting and getting the call. I can't even imagine the tension of waiting and waiting and then getting the call. It's overwhelming to me. I try to imagine myself getting the call and being prepped for surgery, and the anxiety and significance of that time is almost too much.

3. How my family is and will be involved. I am lucky to have the most supportive husband ever. But some other family members worry me. I know everyone has to deal with this at their own pace, but I wonder about how much progress is happening. I have been very open and honest and have kept everyone up-to-date. But like I said, I don't know how far we're getting. For example, after convincing my dad to watch the film last night, he calls to ask if I have a pager and says he doesn't even know if I'm on the list or not. I also worry about how everyone will get along when we're living in Edmonton post-surgery and I don't have the capacity/energy to mediate between my support people. I still have some work to do here.

Alright, I think that's it, there's no #4. I am down to three issues. The first two are mine to get over as much as possible, but that third one will take some strategy. I am going have to think about it and make some decisions. I hate the stress of dealing with my family... it's hard to think how four people can be so... different? difficult? complicated? I don't even know how to describe it, but every family has their own issues and we're no exception.

What's One More Day?

I feel like I'm the only one who hasn't gotten their H1N1 shot yet! Alberta has made a mess of getting the shot to those who need it most. When the vaccine first became available, the government allowed anyone and everyone to get it. This resulted in six-hour waits outside in freezing cold weather and crowds of hundreds of people. Plus, in my city, there were only four makeshift clinics where the vaccine would be distributed. I refused to join the line at that point and expose myself to who knows what. Not surprisingly, Alberta was identified as having the poorest response in all of Canada.

After the vaccine ran out, the provincial government had some time to restructure the process. When new stock came in, they decided to slowly add high risk groups to avoid major line-ups. Finally the last high risk group, 18-44 year-olds with chronic conditions, is allowed to get their shot today. Yay, that's me!

So, after all of this criticism, I think I'll wait another day to get the shot! Today is my birthday, and I'd like to stay clear of needles! I think that's a nice birthday present to myself. Hopefully the clinics will be less busy tomorrow so I won't have to stand for too long!

Canadian Girls

The lack of awareness about CF always amazes me. It seems that unless a person actually knows me or another CFer, they don't know what CF is. Health care professionals included. It's always fun when a nurse asks me when/how I got CF! Seriously. I could go on and on about CF awareness, but maybe I'll save that for another post. At any rate, I try to do my part.

I'd like to recognize the effort others have gone to for CF awareness. There are so many fabulous CFers who are doing wonderful things. This includes the CF bloggers who all do an amazing job for CF awareness. Their followers include not only CFers, their parents, friends and family, but people who had never heard of CF before. I think that's really special.

There are two other bloggers, interestingly the only two Canadian blogs I've found, who have done an unbelievable job about CF awareness lately. Both are on the transplant list and everyday is a struggle. Eva (65_RedRoses) has starred as herself in a documentary about lung transplant. It has opened across Canada in various film festivals, and has been winning awards left and right. It will be on prime time tv on Monday. See my previous post for all of the details. Natalia (Journey of a Lifetime) has recently been on the front page of a Toronto newspaper with her story of CF, surrogacy, and blogging. She has also been on tv, sharing her life and story with viewers everywhere.

Both of these Canadian girls are inspirations. It makes me wonder how I can do the same.

Clinic Visit

I had my regular clinic visit today. Everything went well- both my PFTs and weight were stable. I have been feeling great overall since I got off of IVs mid-October, but this weekend I noticed a slight increase in SOB, cough and production. I'm keeping an eye on it. Everyone says how exhausting assessment week is... it often leads to a round of IVs. I'd rather be the exception and stay away from those!

All of the staff were excited to hear about my assessment. I had a few issues to take care of at clinic, including getting some referrals to see specialists before transplant. I also had to discuss what to take during my month off of Azli, the new antibiotic I'm on. It was decided that I'll take an oral antibiotic for the off month and see how that goes. I also had to get my monthly port flush today. It didn't flush well last time when I ended my IVs, but today it flushed easily. That was a relief! I even remembered to bring some emla to numb the skin over my port, and it worked like a charm. I didn't feel a thing!

Next visit is in one month!

Assessment Day 3

My third and final assessment day is done! Woo hoo! It was another early start. This time I spent the entire day in the Diagnostic Imaging department. First up was a chest x-ray. Simple stuff. Next I had an abdominal ultrasound. After that was a CT of my chest and abdomen (plus a cheesy informational video from the 80s). I have had a chest CT before, but this was different because they used contrast. It was such a weird sensation when they put the dye through the IV. Warm and fuzzy. My last test was a VQ (ventilation perfusion) scan. I've never had one of these before either. It involved two different steps. First, I inhaled the radioactive substance and then pictures of my lungs were taken, indicating where there was air flow. The second step took pictures of my lungs where the blood flow was, so the radioactive stuff was injected into my IV. This was an eye-opener... compared to normal healthy lungs, mine look awful. It was a cool visual! It's crazy that on the outside, there's hardly any evidence of anything wrong with me (especially if I'm not wearing O2), but a look inside shows a totally different story!

My husband took care of packing and loading up the car, and then we made the three-hour trip home. We picked up our dog from my Mom's house on the way. As soon as I got home, I had to nap for a couple of hours. I was exhausted.

I am so glad that my assessment is behind me. I was really concerned that it wouldn't happen until the new year. There are no guarantees how well I'd be or how many more times I'd be hospitalized by then. I am very thankful that there was a cancellation that was offered to me. I am thankful that everything fell into place and we could make it on such short notice. It was meant to be!

Assessment Day 2

Day 2 is also in the books. The day began early with another trip to lab and then we walked over to the gym. I had a six-minute walk test and I managed 382m. I don't know if that's good or not. As I am marching up the hallways, coughing here and there, some guy makes a comment about my bad cold. This happens a lot, but I expect to see it less in a hospital while I am obviously doing a test. Hey buddy, last time you got a cold, did your doctor give you oxygen?

After the walk test we were off to the PFT lab for an arterial blood gas. The RT did an excellent job and it wasn't even uncomfortable. I was really impressed. I will admit that I'm scared of ABGs because my first one was rather unpleasant. Anyways, our next appointment was with the dietitian. After that I saw a cardiologist who had no concerns with my heart. Which means that I get out of the heart catherization! I also got out of a bronchoscopy. I have never had one before, but it sounds like it wouldn't be worth the potential risk at this time.

My husband and I were both exhausted at the end of the day. It was another super early day and we were happy to have the afternoon off. Actually, we have today and tomorrow off as well. Since I have done a lot of these tests recently during my last two hospitalizations, I don't need to repeat them again. On Friday I am scheduled for my final ultrasound and x-ray. Unfortunately these tests couldn't be bumped up, so we have to stick it out until Friday.

Assessment Day 1

Assessment Day 1? Check!

Let me start by saying that today was a long day. My husband and I needed to be at the hospital for our first appointment at 7:30am. Before that I had to do my treatments and get ready, so it was a really early day! We were able to stay at a hotel across the street from the hospital, so that was a plus.

First on the schedule was bloodwork... 15 vials worth! There's nothing like fasting for 12 hours and then losing a bunch of blood. An ECG was next. Then I met with one of the transplant doctors (a different one from last time). Next we were off to meet the social worker and chat about everything from my support people to finances. We were allowed a lunch break -phew- and then met with the pre-transplant coordinator (nurse). We discussed more about the actual procedure and logistics. Last on the list was meeting the anesthesiologist.

By the end of the day I was pretty tired and hungry and perhaps a little grumpy. We walked back to the room where I relaxed for a little bit, ate a lot of snacks and then had a nice nap.

Everyone we met today was friendly and very knowledgeable. Today was good to start to figure out the hospital and all of its buildings and hallways... it's strange hanging out in a hospital where we don't know any staff or any shortcuts through the basement. One of the new hospital buildings is new and is super nice and bright- what a treat! I was also very proud of myself for walking all day. It was a lot of back and forth, but I did it. Luckily my husband carried the backpack full of O2 tanks for the day- I could hardly even lift it!

Another neat thing happened today- we bumped into someone from my clinic who had got new lungs two months ago. We had actually been in hospital together back in May. This person didn't even finish the six-week physical therapy program before they got the call. It's crazy to think that your new lungs could come that quickly!

Day 1 is a wrap! Time to get some sleep.