Saturday, 31 October 2015

Friday, 30 October 2015

Back in the hospital.

I survived my bronch. And my CT scan yesterday and clinic visit. Yesterday at clinic, they informed me about new infections that required new medications. The doctor gave me a plan and I was very hopeful about going home today.

But my plans were disturbed by my having a fever all night. Isaiah kept telling me that I was burning up while I kept yelling at him to give me more blankets. In hindsight, I should've realized something was wrong. I checked my temp around 6am and indeed had a fever. Thankfully, by the time I got to the hospital around 7 am and had my stats taken, my temp had dropped a bit.

They still went through with the bronch, while doing all the prep stuff I realized that it was going to be my 7th bronch. 7! I should be a pro by now. I still panicked though. They wheeled me into the room and gave me all the gross gargle stuff and freezing mask and pumped me with sedatives. Except it took me longer than expected to pass out. After 5 minutes of them being like 'just close your eyes,' I continued to stare at them. I was afraid if I closed my eyes that they would think I was knocked out and start the procedure while I was still very conscious.

I eventually was given enough sedative to knock me out but I still woke up at some point while they were still doing the scope. I didn't panic as much as I had last time so clearly I was still pretty out of it. I remember the nurse patting my shoulder and telling me it was almost over. And then I woke up again in the recovery room. They were suppose to give me blood while I was recovering but since I had a fever, they wanted to wait until my temperature was back to normal.

I slept on and off for an hour and woke up briefly to the Dr. rambling off something to me but I was too out of it to understand anything. All I caught was that I was being admitted. Soon after that, the nurses told me that they had a bed for me which made me think I would move quickly to the floor. Turns out, having a bed doesn't mean getting into the room any faster. I hung out in the recovery room all day napping on and off while waiting for the room to be cleaned.

I finally made it up to the room around 4pm where I had to go through the annoying admittance process. For some reason, the floor resident was convinced that I came in through the emergency department despite my insistence that no, I was already scheduled to be at the hospital.

I still wasn't sure exactly sure why I was admitted but around 7pm, the doctor showed up again with infectious control doctors to go over everything. Turns out that since I had the fever and all the new infections, she thought it would be just as easy to admit me while everything got sorted out. They want to give me some IV antibiotics instead of the oral ones and this way I'll be on hand next week if the Toronto team still wants me to have a colonoscopy to figure out my low hemoglobin.

It makes sense but it's still annoying. I'm going to miss Halloween! I even carved the pumpkin and bought the candy! At least, I guess, I get to eat all the candy myself.

Halloween Cards.

Some of the Halloween cards I made. And the envelopes, because finding the right Halloween themed envelope is a lot of fun.

Wednesday, 28 October 2015

Trying not to panic.

Well, there is now a plan. After complaining for so long about there being no plan, now that the doctors have one, I don't like it. I was informed early the evening that tomorrow morning, I was scheduled for a CT scan and to meet with the Doctor. The Toronto doctor was insistent that everything be done in Halifax even though the CF coordinator in Halifax pushed that I could just have it done in Amherst. Apparently not.

Then Friday morning, I'm scheduled for a bronchoscopy. Nooooooooo. Ahhhhhhhhhhhh. This type of information can not be sprung on me. I need time to process the information and slowly let anxiety build over time. Learning about it two days in advance is not enough time to deal with the panic attacks.

None of this is to investigate my low hemoglobin but rather to figure out why my pft numbers are dropping and my CMV (the infection) numbers are climbing. My CMV infection numbers doubled in the past week even though I started the medication for it last week which makes no sense so everyone is concerned. Hopefully they'll find out something with my hemoglobin while they investigate everything else.

To avoid more panic attacks tonight, I carved a pumpkin given to me by a friend in Halifax and roasted the seeds. She said she wasn't going to use it so we strapped it in the car and brought it home. It was a good way to focus my mind on other things than fear of once again waking up in the middle of the bronch and having panic attacks the entire time. Roasted pumpkin seeds for all!!
We literally had to strap it down as it wouldn't stop rolling around the car.
Giant pumpkin, prepare to be gutted.
Happy Halloween!!

Still feel terrible.

I ended up bailing on the fundraiser Saturday night as I was still feeling terrible. Amy and I had made a joint speech and Mom read my part. I hear it went very well and they raised a lot of money. Thank you to everyone who showed up and supported CF research.

After resting all weekend, I still feel about the same. My hemoglobin is stably low which is frustrating as it's low enough to make me feel terrible but not low enough to trigger needing a transfusion.

However, because my fev1 declined a bit over the past week, the Toronto and Halifax teams are now investigating. I started the antibiotic for my CMV infection last week and I haven't felt any side effects so far from the medication. Although I already feel pretty horrible so I'm not sure I would notice another change. I had my regular bloodwork on Monday before heading off to Halifax for my bone density scan. The scan had nothing to do with how I'm currently feeling, it was a regularly scheduled event that I'll now have done yearly as the steriods I'm on are bad for the bones.

Yesterday, I got many phone calls from the Halifax and Toronto teams about what they're going to do as follow up. The Toronto team has some idea that I can just 'pop in' to a Halifax clinic and be seen that moment. The Halifax team said "we don't need to see you in order to send you for tests." It's frustrating trying to deal with two different teams that have different ideas of what I need to be doing this second.

When the Toronto Dr called me last night at 730pm, he asked me what the plan was from the Halifax team to which I responded that "I have no idea!" He rambled off a list of things that he wanted me to do (including just showing up at the Halifax clinic to be seen today) and then briefly commented that they may want to bring me to Toronto for the investigation.

Today, my Toronto coordinator called mentioning all the tests they want to run (CT scan, broncoscopy, colonoscopy, etc...) and also mentioned 'bringing me up to Toronto early.' The Halifax team is trying to figure out what they want and how they can fit me in for all the tests I'm suppose to have done.

So basically, I have no idea what is happening right now. I was sent for an x-ray yesterday and for some iron blood testing today. That's about it. I hauled myself to yoga last night and really struggled through it. Anything remotely cardio based makes me feel like I'm going to faint. I keep trying to push through my low hemoglobin and am finding out that it's pretty much impossible. Stupid blood cells. 

Friday, 23 October 2015

Inspirational speech...?

I'm trying to write a upbeat blurb for a CF research fundraiser fashion show that Dad is organizing tomorrow where I'm suppose to talk about living with CF. I've written enough of these that I should be able to pump out a little thing about living life to the fullest despite having a disability and always taking things one day at a time because you never know what will happen tomorrow.

However, all I can get out right now is how much having CF is terrible. It's an awful disease. It destroys your digestion system and lungs. On the digestive side, you take daily medication to simply digest food that has horrible side-effects causing cancer, diabetes, and osteoporosis. And even through a religious taking of the enzymes, sometimes the body rebels and makes you feel like someone is stabbing your gut with knives for a day or two as it refuses to digest food. You're constantly underweight, need supplements to help with weight gain as the body is often too tired to eat all the calories necessary.  Missing a meal can start a slide into malnutrition which can decrease lung function and body health in general.

On the respiratory side, you live in constant fear of infections and pneumonia. You do daily aerosol masks with breathing exercises and chest percussion in hopes to clear the lungs a little bit. You cough all the time. You feel asthmatic when transferring into air-conditioning or heating. You can't walk by stores that sell too many candles. Sometimes you throw up after exercising too much. As the years pass, it gets harder and harder to do aerobic activity. You keep pushing yourself as much as possible but know that no matter what you do, you'll never be as healthy as you were before.

There is no 'winning' with CF. There is no 'beating' CF. There is a long slow decline until you die.

Your parents know that it's expected that you'll die before them. Your siblings without CF know that one day they'll be an only child.

A lung transplant does help extend life and can make things wonderful but it's no guarantee. It's a huge process and if you live, it's not a 'do-over.' There is a 60% chance that you get another 5 years. 50% chance that you get another 10 years. It's something but the concerns are never over. There are new fears of infection and rejection. There are complications that I could've never imagined.

But all of that ranting and frustrating is not what I should say at a charity event. People want inspiration, they want to hear about living life to the fullest despite of the limitations of the disease. They want to be cheerleaders that it's possible to overcome. That their donation will help in a significant way.

Don't get me wrong, funding to the Canadian CF Foundation goes toward CF research for new medications, transplant research, and living adaptions. It has helped enormously increase lifespans, bring in new treatments, and help people with CF who've had transplants with care. It is important for people to donate.

It's just hard to say positive things about CF when having CF is terrible and I'm feeling less than inspirational. It's easy to praise the advances of research. Research has been amazing and has helped developed the new breakthrough of medication that is changing the DNA of certain people with CF who have a certain genetic mutation. I guess I'll have to pull up older blog posts from when I was in a more positive head space to not scare everyone in attendance.

Thursday, 22 October 2015


Well, I'm not feeling any better and my hemoglobin level were about the same on Wed. I remain in the weird limbo place where the levels are low enough to make me feel horrible but not bad enough that they're ready to intervene.

Instead of more complaining  about how terrible I feel, here is my latest bowl from the Tidnish Bridge Art studio. Sadly, the studio is now closed for winter and the pottery people are heading back to the US to stay warm (and because they're only allowed here for less than 6 months). I'm hoping to find somewhere else to play with clay. The woman at the studio gave me the contact of someone else who I may be able to connect with. I remain hopeful.

Pre-kiln! I layered various glazes with whatever they had left. 
Out of the kiln! The colours turned out really well.

Tuesday, 20 October 2015

Trying to fight effects of hemoglobin.

I've discovered over the past few days that its somewhat impossible to just 'push through' having low hemoglobin. In the past when I haven't been feeling well, I still try to do as much as I can as I knew that if I didn't, I would never do anything. However, I tried that tactic over the weekend and it didn't work as well as planned. 

I went on a little hike on Sunday in Wentworth area which started off well until the trail took a turn upwards. I'm not sure why I was so surprised as it was a hike to a look-off. I had to take a lot of breaks and then reached the point where I didn't think I could walk another step up the hill. My body was in full rebel mode. It was like my lungs weren't getting enough oxygen to the rest of my body and it refused to walk up any further. It wasn't the same dizziness as I had before but a general exhaustion and as though I may fall over. I felt really bad having to turn around before we actually reached the look-off but at least we got a bit of a view on the other side of the valley while walking up the hill.

Monday confirmed my suspicion that my hemoglobin had dropped lower since Thursday as I've been feeling worse. Same amount of tiredness but now with an exhaustion when I do anything cardio-related. Plus with little appetite and some dizziness. I wasn't dizzy today so I though that maybe I could force myself into feeling better with some skating.

It took about five minutes for me to get the same sensation I had while hiking. Except I felt it was more dangerous as I was on the ice. I tried slowing down but it didn't seem to help. It wasn't so much a dizziness as a 'body about to fall over' feeling. It's really hard to describe.

I called everyone this afternoon for them to fix me but the plan right now is to retest my bloodwork tomorrow and if the number is low enough, talk about another blood transfusion with an investigation as to why my hemoglobin keeps dropping. I need to drop below the critical number. I guess now I want to because then maybe they'll give me blood and I can go back to feeling better. Being in this limbo is terrible.

In other news, the haunted house/forest we went to on Sat was indeed scary and the hike was beautiful, even if it wasn't as long as hoped.

Friday, 16 October 2015

More blood work problems

I hope everyone had a great thanksgiving with family and good food!

I know I've been slacking in the blogging, I keep starting posts and then not knowing where to go with them. I haven't had much focus this week. The past week has been okay, my energy is back up a bit, enough that I've gone skating and to yoga, but I've also been napping a lot which isn't a good sign.

My hemoglobin levels are back down a bit from after the transfusion, thankfully I haven't been dizzy, but I'm wondering if that's why I've been a bit tired and just unmotivated overall. I wouldn't be surprised if I need another transfusion in the next week.

My lack of energy may also just be a mind game as I found out that my cytomegalovirus (CMV) levels are up which means that I get to start a new medication to treat me. CMV is quite common in the general population and my levels have been creeping up slowly. It finally reached the critical number where it they're ready to start actually treating it. The pharmacy didn't have any of the medication in stock as it's expensive so I won't actually be starting anything until Tuesday.

I'm really tired of all the complications lately. For some reason I though that by this point, I would be finished with all the complications and would be in peak physical condition. I figured I would get an infection once in awhile but didn't expect this continuous onslaught of problems. It's a bummer.

I'm trying really hard not to complain about the problems because I know it's just an infection which is better than rejection and the guilty part of me screams that I need to be thankful to just be alive.  And I am, it's just weary to have my lung function still down, the daily chats with my dietitian about my blood sugars, bi-weekly calls from Halifax about my blood work, and constant emails from Toronto about adjusting medication. I hope going to a haunted house this weekend will make me forget all my problems. It'll be scared out of me!

Friday, 9 October 2015

Happy Thanksgiving Weekend!

Happy Thanksgiving Weekend! Isaiah and I are driving around the Maritimes trying to fit in both families. I'll be spending the weekend with friends and family while driving all over this gorgeous part of the world eating delicious food.

I have so much to be thankful for this year. I could list off every single reason I'm thankful but I think just being alive is reason enough. I'm thankful to be alive in this safe country where I get to vote freely, have a comfortable place to live, clean drinking water, love who I want, and have access to health care. Not everyone is so lucky and I am so thankful that I was lucky enough to be born into this time and place. 

I hope everyone has a fantastic long weekend with people that they love and yummy food. 

PS - Go vote this weekend. The next two weeks of political messages will not change your mind. Go in case something comes up on the 19th. Go while waiting for the food to finish cooking.  Go as a way to get a break from family. Just vote. Friday-Monday, noon to 8 pm. Don't forget ID! The voter card doesn't count anymore. *The political section of this blog has now concluded*

Happy Thanksgiving to all!!

Wednesday, 7 October 2015

Thanksgiving Cards

I made some thanksgiving cards last week during one of my dizzy days that I thought were pretty fun. The problem with making a variety of cards instead of the same design for all means that I can never decide who should get what card. Not the worst problem ever, I suppose. And...I realize now that I only took a picture of my turkey one. I did a bunch of other ones with strips of paper woven together to make bright fall trees. It was all a fun experiment.

Gobble Gobble.

Tuesday, 6 October 2015


I got back on the ice today! And I went back to yoga so a productive day exercise-wise. I lasted 20 minutes skating, I didn't want to push it too much as my legs were getting tired and I was afraid of falling again. I didn't get dizzy so that was a good sign.

I also survived yoga even though I still can't really weight-bear on my wrist, especially not my body weight. I tried one downward dog and then decided that the child's pose was the one for me. I found I was a bit more lightheaded at yoga but I think that was because I was coming out of poses too quickly when standing up.

With all the dizziness and nausea the past few weeks, I've been totally slacking on exercising but hopefully things are now looking up and I'll be able to get back into some sort of routine. I'll find out with my blood work tomorrow.

Stopping for a stretch break.

Monday, 5 October 2015

Blood Transfusion.

I hope everyone had a great weekend! I had an interesting one. Thursday, my friend came back to NS from far away (St. John's) for our friends' wedding (and to see me, of course). We spent a few days hanging around rainy Springhill which was slightly less exciting. I was super excited for her visit and then ended up feeling crappy the entire time.

I felt dizzy and sick on Friday. The bloodwork results showed that my hemoglobin was still low so I was told to go to the hospital to get a blood transfusion. I didn't want it to happen but I wasn't too surprised by the call. We were heading up the hill when I got a call from the hospital to not come in until Saturday as they didn't have the blood on hand.

I was a bit stressed with the timing issue as the wedding was in the afternoon in Halifax area so I woke up bright and early on Sat morning and headed up to the hospital. I got in right away and they managed to get an IV in on the second try which is pretty good. I signed all the forms, told them that I had received blood in the past, and was able to get hooked up immediately which was excellent. It took three hours to go through which was quite boring, I don't remember it taking so long last time but I guess that time, they probably could push it through a PICC line a lot faster than a little IV. Good thing I had lots of podcasts to listen to while I dozed on and off.

After that was done, we took off to Halifax to get ready to the wedding. It was beautiful and we had a great time but I got tired super early. I'm not sure if it was the blood or not sleeping well the night before but I was exhausted by 9. I felt a bit better dizzy-wise on Sunday and felt even better this morning, I still have some nausea and incredible back pain but at least my dizziness is somewhat better!

I went for blood work this morning and it turns out that my hemoglobin levels are up a bit but not as much as hoped. It explains why I'm still quite tired when I do anything. I hope I don't need more blood but it seems like it's going to be the only way to get my levels back up. Red meat isn't doing the trick.
Sweet new blood.
Thank you to everyone who donates blood!

Thursday, 1 October 2015

Happy October!

Happy October!

I can't believe how fast September has gone by. My blood levels are still high and still being 'monitored.' I'm feeling a bit better today but it's been a long week of headaches and dizziness. Hopefully tomorrow my blood levels will be back tomorrow or at least they'll want to do something about it. At least I'm no longer nauseous now that I've stopped taking double the magnesium. Unfortunately, that's not a very good long term solution and I'm going to start taking the normal levels again next week.

At least it's been a drizzly week so I don't feel as bad having a few lazy days.