Happy New Year

Time to say goodbye to 2009! Woo hoo! 2009 has been a rough year all around. I would have NEVER thought that my health would decline the way it did in 2009. From numerous IV treatments, port placement, new PFT lows, full-time oxygen to leaving work to lung transplant referral and assessment, 2009 was rough. It was hard physically, emotionally and pyschologically.

2009 had its good moments too. The support of my family and friends has been heart-warming. They are amazing. My husband has been a huge source of strength and has faced every single challenge with me. For this year's Great Strides Walk in May, my friends, family and co-workers raised well over $14,000 for CF. My husband and I went on a couple of trips, oxygen and all! We travelled to Vancouver Island with family, spent a week in Hawaii with two other couples, and flew to San Diego for a couple of days and then drove to Phoenix for two weeks grand total.

That said, 2010 is both scary and full of possibilty. I have never given much thought to the year changing, but this time it has huge significance. Here's to 2010!

Happy Holidays!

I have been so excited for Christmas this year. Last year I was in the hospital until the week before, so my husband had to take care of everything including the shopping. On Christmas Day, my husband's stocking was filled with IOUs for presents I would have gotten him, if I could. It has been much easier to get into the Christmas spirit this year! I have done all of my own shopping this year, and everything is wrapped sitting under the tree. I have done some visiting with friends who are now off for Christmas, and I even dropped by my office to deliver baking (made by my husband) and to wish everyone a Merry Christmas. I have had appointments (more vaccines, anyone?) and errands to do everyday. The last week-and-a-half has been go, go, GO!

I think I've been too busy. I have enjoyed being productive and have tried to fit everything in, but I think I may have pushed my luck. And pushed my body too far. I have been so out of breath and any exertion is exhausting. I have upped my oxygen a notch to compensate. My back is sore everyday, and the thought of carrying my oxygen tank makes me cringe. I definitely overdid it! I hope that I can bounce back quickly to enjoy the holidays.

Merry Christmas to you and your families! I wish all of the CFers out there a nice holiday season, especially those on the list or in hospital. Happy holidays!

Clinic

It seems like I'm spending a lot of time there! My visit yesterday went well. I'm almost two weeks out of the hospital... but it feels like much longer. That's what freedom does! My pft's are about the same, and my weight has gone up. Again.

I am now officially back to the weight I was when I first came to the Adult CF Clinic at 18. The weight that is listed on my driver's license. The ideal BMI. I chart my FVC, FEV1 and weight at home to keep track. Over the last five years, my lung function has zig-zagged it's way down and my weight has steadily climbed it's way back up. My weight bottomed out in 2007 after our big Europe trip, and have have slowly put that 10 kg back on.

I feel like my weight is the one thing about my CF that I can actually control. I had always struggled with it as a kid, but as an adult something clicked and I could maintain a healthy weight. I still have to work at it, but it's nice to have one less thing to worry about. I can force feed myself, no problem. I am so lucky that my husband is an excellent cook. I admit I don't cook at all. But I will eat and give compliments to the cook!

Another thing that has made a difference is getting my CFRD under control. I have been diabetic for maybe four years, and started using insulin three years ago. I feel like I have that figured out. My A1C is normal and I don't have too many highs or lows. Of course, transplant is going to screw that all up, but that's no surprise.

I'm looking forward to eating my share of holiday baking!

Feelings

Alright, I admit that I'm not that good at writing about my feelings. I prefer to talk about them. I've never kept a journal or diary before. I can see that most of my posts are about factual information, instead of how I feel. I'm working on that.

Yesterday was the first day I truly let myself get a glimpse of how my life will be post-transplant. I have been thinking about the waiting and the recovery, but rarely do I think about how good I will feel eventually. I was so excited about it last night that I couldn't fall asleep. I will be able to run again. I will be able to play my sports that I miss so much. I will be able to travel and work again. I will be able to walk and clean and go up stairs without needing breaks and feeling tired. I won't need to carry around my oxygen. I will feel like my old self again- with enough energy for myself and others.

I am starting to forget what that feels like. I feel like I can't be myself 100% because I don't have the energy. I really struggled with that earlier this year. I don't have the energy to be myself. I felt like a lame version of who I was. I have adapted now. I just have to prioritize and do the most important things. Eventually, I will be able to do it all.

I felt like I rejoined society again yesterday. After nine days in the hospital, and a few days at home before and after... I realized I hadn't been out in a while! I drove for the first time in winter conditions yesterday. I put on jeans and blow-dried my hair. I went to two stores to do a little shopping. It felt so good. I didn't notice how long I had been hidden away until I got out there!

Home Sweet Home

I came home yesterday! This time I spent nine days in the hospital on IVs. I was surprised to go home IV-free, but I am feeling better and I think there's a concern about how much tobra I've been on lately. Realistically, it's only a matter of weeks before I'm back on it anyways.

It feels so good to be back at home. My husband hardly sleeps when I'm gone, so it's good we can get back to our routine. This time my hospital stay was a bit different. I usually have tons of visitors, but this time I didn't tell anyone I was in except family and a couple of friends. My family spent lots of time with me (maybe too much?) and two friends came to visit me. I didn't really hear much from my best friends though. Maybe this hospital stuff is getting old fast.

I know I hesitated coming into hospital, but I'm glad that I went in. It's hard to notice the slow decline when I'm occupied at home doing stuff. It's also hard to admit that it's happened already. In hospital, I could see that I started feeling like myself again around the one week mark. The difference was easy to notice because it happened so quickly. As much as I don't enjoy the hospital, it was the right place to be. I can't afford any more damage to my lungs.

I don't know why I can't have an uneventful hospital stay. I thought for a moment that this might be the first one, but I was wrong. I understand that little glitches are going to happen. I can get over that stuff. Luckily for me, I can speak for myself and ensure nothing crazy happens. But this week, a major mistake happened to me. My nurse gave me someone else's IV meds. I usually check the bag once it's hung, but this time I rushed into the shower and didn't see it until I came out. It was an awful feeling to know that something bad had happened, but I wasn't sure how bad. My stomach was in knots. In the end, after insisting that I page my doctor, I was reassured that I'll be alright. I still felt violated; someone had put something into my body that I didn't want.

Don't get me wrong, my CF team is fabulous and I wouldn't trade them for anything. I feel very lucky to be surrounded by staff that have known me for 11 years (since I transferred from the Children's) and care SO much. But the staff I see in hospital (nurses, etc.) aren't in the same category. Some are really nice and competent, and some don't get CF at all and can't even give me the right IV bag.

Glad I'm back at home, safe and sound.

My Top 10 Things to Bring to Hosptial

These are the things I don't come to the hospital without. They make me more comfortable and the time go by faster.

10. Pillow- those plastic, crinkly, hospital-issue ones suck.

9. Sweatpants & hoodies- comfy clothes are a must!

8. Books & magazines- I usually get a lot of reading done when I'm alone.

7. Post-it notes & pencil- I like to keep track of my own blood sugar numbers, weight etc. while I'm here. Easy reference!

6. Lotion, chapstick & eyedrops- one night in the hospital is enough to suck you dry of all moisture. I am constantly reapplying these things!

5. My insulin & blood sugar kit- My CFRD is fairly well controlled and I only test periodically at home. But in hospital, the expectation is that my blood sugar will be monitored closely. I always bring my own stuff so the nurses don't use theirs... it's more painful and needs a huge amount of blood to test!

4. My port- I don't leave home without it! Since I got it in August, it has made admissions much easier and less stressful. I am SO glad I don't need to get a PICC every single time.

3. Cell phone- an essential to schedule visitors and stay in touch with everyone! I am lucky to have lots of family and friends hang out with me!

2. Laptop- My husband gave me a laptop recently as a present, and I don't know what I did without it! Good for emails, facebook, blogging, itunes and movies!

1. Food & Drinks- I admit that I'm a bit of a hospital food snob. I don't understand how I'm expected to gain weight eating that stuff. Ever heard of a beef salad sandwich? Imagine tiny mushy pieces of roast beef covered in mayonnaise on bread. Did I mention it's a strange grey color?

Needless to say, I am looking forward to going home! One week down already!

Blue Light Thoughts

I don't know why the blue glow of my IV pump at the hospital late at night gets me thinking. It's hard enough to sleep at the hospital, but when I turn out the lights my mind fills up with thoughts about my CF life. Too much time for reflection I guess.

These couple of days in hospital have been tough. I am more tired than ever before, and coughing more than ever before. I don't even feel like myself until about 4pm when I get a bit of energy. I know things will improve soon when the antibiotics kick in. I have been lucky to be visited and entertained by friends and family, who come regularly with meals and stories to tell me.

There is no doubt that my visits here are getting closer together. In the last year: December, March (home IVs), May, August (home IVs), October, November. I have accepted that I will be here a lot as I wait for transplant. I am still thinking positively, but it's a reality that I understand. It's the nature of CF.

Good and Bad News

Good news first... I was accepted into the lung transplant program! I am going on the list with a 'Status 0' or 'not active.' I will hopefully be starting the six-week rehabilitation program in January. That will be confirmed at a later time, as the most sick people will be accommodated first. I am relieved to hear that I'm in and there's nothing wrong with me or my situation that prevents me from this opportunity.

Bad news now... I am back in the hospital. Six weeks after I finished my last course of IVs, I'm back. For the sixth time in the last year. I came in on Wednesday with shortness of breath (even at rest) and increased cough. It was a bit of a blow because I had been feeling well overall and I had been trying extra hard to exercise, etc. The last two days in hospital have been tough. I have been coughing up tons and exhausted from being SOB. This course of IVs only reinforces the decision to be in the transplant process. My lungs, as much as I like them, are doing their own thing and are beyond my control.

To end on a high note, more good news (ah, the sandwich technique)... I am so happy that Natalia in Toronto received a lung transplant. It sounds like she is well on the road to recovery already!

PFT Fun

This morning I had an appointment for full PFTs. I don't think I've ever had such a hard time doing them. I have been coughing non-stop since 2:30am and I'm tired! The only reason I know that is because my husband told me... I didn't wake up until 6:30! I always wake him up when I cough at night but I usually sleep through it. Sorry about that. Anyways, despite the crazy coughing, my FEV1 was 27% pre-ventolin and 29% post.

The reason I needed to do PFTs outside of clinic was for my transplant centre. They called last week and said the PFTs they had weren't complete. I also needed to do them for my oxygen funding. In Alberta, the government pays 75% of my oxygen & supplies costs and I have only been approved until mid-December. I was surprised that PFTs were acceptable, because in the past they've done an arterial blood gas or a walk test.

I am getting anxious to hear back from my transplant centre. If everything goes according to plan, they will be reviewing my assessment results this week. I should hear back soon whether I'm a candidate or not for lung transplant. I am expecting good news, but I am still anxious!

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.

Moving Right Along

Okay, I got a phone call this afternoon that there's a cancellation and I can be assessed next week for transplant. I spent the next hour wandering around the house, pumped full of adrenaline, trying to get used to the idea. See, I was originally told that the next available slot was mid-January. I told the pre-transplant coordinator that I was always available and this is my priority... and voila, here's a short-notice opportunity! It's great to be able to do the assessment while I am feeling good and recently off IVs, but I didn't imagine it would be so soon! I feel like I've been caught off guard, but this is good news and I'm happy about it!

Now to back up a little bit...

My transplant journey started on June 25th when my CF doctor sent a referral letter to the Transplant Centre closest to where I live. Three months later on September 24th was the next step… meeting one of the doctors for my initial appointment. This was an opportunity for my support person (my husband) and I to “discuss the possibility of lung transplantation.”

Before the meeting even started I had low blood sugar, so my husband went to find me a chocolate bar. Of course, that’s when we were called in. Wonderful first impression- me light-headed and my husband gone to find a vending machine.

The meeting started with a brief review of my history, then the doctor talked about the program, and then we had a chance to ask our questions. My CF history is rather boring until this year. Since Christmas I have been treated with IVs five times, went on oxygen, got a port, and saw my PFTs (FEV1) dip under 30%.

My husband and I left the meeting feeling pretty good about things. The doctor spoke highly of the program and their stats are well above the international average. They do 38-47 lung transplants per year, which is quite respectable. The most important tidbit we left with was that this IS the right time for me. I am in the window. My lungs are crappy enough but my body is still healthy enough. If your lungs aren’t bad enough, the surgery is hardly worth the risk. If your lungs are bad and your body is too weak, recovery can be compromised. It was reassuring that other doctors can review my medical records and confirm that this is it. There isn’t time to procrastinate and let more exacerbations take their toll.

Good thing I am moving right along!

Starting a New Routine

I am making a commitment to get back to my strength training routine. In terms of exercise, I always do two 20-minute walks with my dog each day. However, I haven't been doing my weights for a few months now... because I was working and didn't have the time/energy or I didn't feel well enough or various other excuses. I am officially getting back into it!

I believe that physical activity is a HUGE factor in keeping me well. I have played sports all of my life and I have been 'healthy' for the majority. Really, it's only been the past year where things got tough. I kept playing sports right until last Christmas. After that, it was too hard. I couldn't catch my breath after running, and I was so tired after that I immediately crashed once I got home. I even went as far as trying to umpire with an oxygen tank strapped to my back, but that led to other difficulties!

I have really noticed how weak my legs get when I'm sick, particularly in hospital. If I squat, my legs shake when I try to stand back up. I don't like that feeling. I know after transplant I'll be even less active for the first couple of months. I want to get my strength back now.

The RT from my oxygen company is coming over today to exchange my concentrator. The one I have now only goes up to 5 LPM. After my last hospital stay, I'm already sitting at 4. I will need more O2 if I'm going to get through my routine. Plus, I will also start using our treadmill again when the snow sticks around and I can't do a good 20-minute walk outside. If I am going to walk on the treadmill, I might as well try running. It'll take me a while to get there, but I am going to do it. It's funny- lately I don't even use expressions like 'running errands' or 'run over to the store' because it's obviously not true. I better do something about that!

65_RedRoses

Have you heard about the documentary 65_RedRoses? It's a film is based on the lung transplant journey of Eva, a 23 year-old with CF from Vancouver. It starts with Eva on the transplant list, declining and spending lots of time in the hospital as the months drag on. The film also focuses on two relationships that Eva has made with other CFers online, and how these girls deal with their current CF lives plus support each other.

I was thrilled to finally see the film. I had to get a day pass to leave the hospital, but I wasn't about to miss it. I highly recommend watching it. It's a real look into life with CF and the wait for new lungs. The film does an amazing job of capturing that. I have been reading Eva’s blog for some time, and her zest for life and fun-loving personality jump out at you immediately. Two years after transplant, Eva’s story continues off-camera. My thoughts are with Eva as she continues her fight. She is amazing.

To check out the trailer and for more info, see 65redroses.com or http://www.youtube.com/watch?v=fMGUXOtFxjc. A shorter version of the film will air on CBC Newsworld’s Passionate Eye on November 16, 2009 at 10pm EST. I am looking forward to it- I want all of my friends and family to watch, plus it's great awareness for CF and organ donation!

Clinic Visit

I spent the morning at clinic getting set up with Azli and an e-flow. I've heard about these things through other people's blogs, but it's still very new in Canada. I think it's still in a study phase. Anyways, I'm willing to try a new antibiotic and hope that I notice a difference. It would be awesome to maintain the way I feel now for as long as possible! I also got my flu shot, #1 of 2. Once the H1N1 shot is available I'll be getting that as well.

Tonight I'm looking forward to getting together with some other CFers from my clinic. I don't know many CFers, so its great to get to know a few. It sucks that we are discouraged from hanging out together. Silly germs. That's the reason CF Camp got cancelled back in the early 90's. They figured out how cepacia was spread and they pulled the plug. It's too bad- I have so many fond memories of CF Camp.

The camp's location in the Rockies was beautiful and the counsellors were amazing. I still see a few of them around (small world!) Our CF Nurse always came along too. I remember how great it was to connect with friends from all over the province every summer. And the crazy pranks we used to pull! I remember how neat it was to see the older CFers and hang out with them. I remember how everyone crowded into "the pit" of one of the cabins to do nebs and physio as a group. I remember how there was a weigh-in at the beginning and end of camp... leading to Pig of the Day and Pig of the Week awards. I remember how it was free so everyone could afford to go. I remember how it was a special time with special people. I'm glad that I got to experience it.

Alternative Medicine Blogger Challenge

A blogger challenge... I'm in! Check out Piper's original post for more on Alternative Medicine.

1) What are your thoughts on "alternative" forms of medicine?

I admit that I would like to learn more about alternative medicine. Some of it is a little too far out for me, but some of it makes more sense. Does anyone else remember when tumeric was supposed to help CFers?

2) Have you personally ever tried any of techniques to manage your CF (or your child's) other than the typically prescribed routine? If so, what did you think of them? Are you still doing them?

Not yet, but I'm open to new things, especially as my CF becomes more severe. I would never replace any of my current CF routine with alternative medicine, but it could complement it. My biggest concern is how something may interact with all of the meds I'm already taking.

I am considering seeing a naturopathic doctor. I think it's covered by my health care plan. I know other people who have and liked the results, mostly focused around their diet. However, if I went and they said not to eat dairy, meat, sugar, etc. I couldn't do it. No way. I eat what I want. That's what enzymes and insulin are for!

3) What does "healing" mean to you in the context of cystic fibrosis.

Being realistic, healing means "stable" more than anything to me. Feeling well and staying well, both physically and emotionally.

Hello Frustration

Fresh out of the hospital, I am feeling better than I have in months. Even better than after home IVs in August. I have been trying to take advantage and get some things done around the house. I feel like I've accomplished so much already, and it IS a lot compared to my productivity over the last couple months. But realistically, it's hardly anything. Hello frustration.

Today I had a meltdown when my husband started doing the housework that I had been planning to do. Of course, I appreciate him helping me and letting me save my energy for other (more fun) things. But the frustration still hit me. These are things I want to do, but have a hard time doing. Yes, I know that getting out of doing chores should be celebrated... but I feel like I still need to have that sense of accomplishment when you finish a task. Those moments are happening less and less.

I think it's a control thing. I want to do what I want when I want. With a baseline lung function around 30% on a good day, that isn't always possible. I have to remind myself to take the help offered. I need to prioritize and make sure my effort and energy is well spent. I need to let go a little. Easier said than done.

I am so lucky to have people who care about me and are willing to help me. My husband is especially thoughtful and selfless. He is amazing. I couldn't imagine living without him, trying to manage everything from treatments to cooking alone. To be quite honest, if I lived on my own I'd probably starve! I just have to get used to the idea that until I am a few months out after transplant, this is the new reality.

Yeah, I think it's a control thing.

Grand Opening of Sandy's CF Life

Alright. Here we go! Post number one.

My name is Sandy and I'm a 28 year old CFer. It has taken me a while to decide to create a blog, but I did it. Actually, this is try #2 because I'm locked out of my original account. Anyways, I wanted to document and share my experience as I start the lung transplant evaluation process. Officially, my transplant journey started on June 25th with a referral letter from my CF doctor to the closest Transplant Centre to where I live.

I have been thinking about transplant every single day this year. One of the things that helped me the most has been reading other people's stories. And even better than that, reading other CFer's blogs has really shown me that I'm not alone and taught me so much. So I am joining the club and starting a blog!

Today is a good place to start because I feel good. I just got back from the hospital after getting my IVs disconnected. I had been in the hospital for 9 days and then finished my IVs at home for the remaining 5 days. That's my October. I can't believe how lousy I felt two weeks ago... I was short of breath 24/7 and overworking my o2 concentrator! I am SO much better now.

I think that's a good start. Welcome to my CF life!