Sunday, 23 April 2017

CF clinic

It's prime cold season at the Watson/Jacques household. I'm finally at the tail end of my cold (hopefully) while Isaiah has started sniffling yesterday and is drinking liters of Cold Be Gone tea in an attempt to prevent it from become more. His colds never seem to last as long as mine and involve fewer naps so I'm not as sympathetic as I should be.

It was fairly good time to get an infection for me (as much as that's possible) because I had my CF clinic last Wednesday and they were able to test my lung function (down slightly) and listen to my lungs (clear). The doctor wasn't overly concerned but put me on a 10 day course of antibiotics just to play it safe. Sometimes I think I'm solely responsible for the antibiotic resistance problem.

The dietitian made a plan to try and fix my wonky sugars but wanted more numbers so I've been intensely recording everything I eat with my sugars for the past week. It'll help her try to recognize patterns even if I can't see them. Shockingly, I was quite high after I eating a Cadbury cream egg...perhaps the feedback will be to eat less pure sugar. Now that my weight is the highest it's ever been, I no longer have the "I have to gain weight" reason to eat all the candy. It's quite refreshing not to have to worry about my diet but it does mean fewer cookies.

I had a CT scan last week and the doctor said the early report showed no new nodules and shrinking in the one spot that had been on my lungs. I'll get the full report at my hematology appointment in May but everything looks great right now!

That stupid CT scan was so terrible. It was supposed to be done with the dye contrast which is usually not a problem. It becomes a problem when no one can get a IV into my arm so it can't be injected. Usually before an IV (when I know it's coming) I'll try to hydrate as much as possible to make my veins pop a bit and the process go smoother. However, with this scan I wasn't suppose to eat or drink for 4 hours before and seeing as it was at 830am, that meant no liquids for me that morning.

My veins were not happy. The nurses were not happy. The doctor they called in for backup with his ultrasound machine was not happy. Combined they tried 14 times to get an IV in. 14! Not just 14 regular stabs either. Most of them were the ones where they miss, dig around for a bit, think they get it, try to flush it, and nope. It was terrible. They kept asking me how the nurses got them in back in Dec when I was in emerg for Poopmas. I suggested maybe getting an emerg nurse to help but apparently they were all busy.

The doctor suggested he could put in a central line in my neck but that seemed like massive overkill for a CT scan. After all that, they did the scan without dye which meant not as much will show on the report. I was worried I would have to go back in a few weeks for a repeat but my CF doctor didn't think it would be necessary. I really hope she's right. It was slightly traumatic. I came out of the room all bandaged and bruised and yelled at the waiting Isaiah that they stabbed me 14 times. He just shrugged and said "Seems about right." No. Not the reaction I wanted. He's become immune to my "they stabbed me many times" stories. People with good veins just don't understand.

Now I just need to get over the end of this cold because the Transplant Trot is in less than a week and I really need to jog outside a few more times before it happens. 5 km jog (trot?)! Eeek! 

Tuesday, 18 April 2017

Happy Easter!

Happy Easter! I know it's a little late but I hope everyone had a great long weekend. We drove to Halifax to visit friends and then to my parents to enjoy a giant Easter meal. It was a busy weekend.

Now we're home for a day before I have to drive to Halifax tomorrow for a CF clinic. Just a regular check-up so I don't anticipate any issues. It'll be nice to talk to the dietitian and see if she has any suggestions for dealing with my sugars. I've been making a detailed report of my food intake and sugar levels to try and explain my sugar crashes but since I started recording everything intensely, of course everything has been fine.

I woke up with a bit of a cough today which I'm hoping will either go away on its own or they can fix tomorrow. Perhaps if I drink a ton of tea with honey it'll get better. I tried to be so careful around the children over the weekend but since they're basically little balls of germs, it's hard to know if I was cautious enough.

Sunday, 9 April 2017

Quiet week

Well, I've officially run out of things to blog about. My life has become normal and boring which is wonderful but not very interesting to blog about. I've put my cross country skis away and had my last skate at the arena last Tuesday before they take out the ice and put up the basketball nets. It's always an awkward time between seasons but it doesn't look like I'll have to wait too long to go biking or be able to jog outside.

My energy level has been really good all winter and so far I've managed to avoid getting a cold or infection. My working one day a week has not seemed to impact that too much. I do still find I need 8 to 10 hours of sleep a night though in order to function during the day. I say this having not slept well last night and have been zombie-like all day. I can't explain why I need so much sleep, if it's my medication or something with the transplant but I need my sleep. I always have but before I figured it was because I struggled so much to breathe and when I did sleep, it was restlessly which it meant I needed more time overall.

It's a weird thing in our culture where we like to brag about how little sleep we got as though it's an accomplishment to sleep only 4 hours a night. I will never win the "I barely slept last night" contest and will never mutter "I'll sleep when I'm dead". No thanks, I'll sleep now. I clearly need a lot of it as I can sleep soundly from 11pm to 9am most nights. I'm not concerned about it, I just need to keep it in mind when I think about possibly working more than one day a week.

I'm not planning on finding another job or expanding hours just yet. I want to make sure my one year post-chemo check-up is clear. Also, Isaiah finishes his course in May and then he's hoping to get a full time job somewhere so we may end up moving in June. He's applying everywhere and although I would like to stay in NS, since he put everything on hold and followed me around for a few years, I can't really complain if he gets a job out of province. I'll just need to look at the health care coverage before moving anywhere. I don't think any other province will be as good as NS but I do need them to at least cover my anti-rejection and digestive medication.

Sunday, 2 April 2017

Living with CF related diabetes

This past week has been a tough one for managing my diabetes. And I have no idea why, which is the most frustrating part. It's strange how after everything I've been though with the transplant and cancer, the thing that affects me the most on a day-to-day basis is my diabetes. A disease I didn't fully understand the level of frustrating it causes until I had to start taking insulin.

Just a quick refresher, CF related diabetes (CFRD) is a mix between type 1 and type 2. It's becoming more common as people with CF are living longer and the years of mucous build-up causes scarring on the pancreas, causing it to produce less or no insulin (like type 1). Also, the amount of steroids people with CF take may cause them to become resistant to insulin (like type 2). 

Some people can control their CFRD through diet and exercise but most people (like me) are required to take insulin. It's hard to cut out all sugar and carbs from a CF diet due to the struggle to maintain a healthy weight. While that's easier for me since the transplant as prednisone has increased my appetite 100%, I still can't cut out all the easy calories like white bread and pasta just yet.

Even if I did change my diet, I would still have high sugars as a lot of it is caused by the prednisone I take to prevent rejection. While I was diagnosed with CFRD before the transplant, it didn't kick into high gear until afterward with the new medication. I'm not sure if I would be considered to have medication-induced diabetes since the steroid is mostly the reason for my sugars. I was told it would improve with my dose being lowered but that hasn't made a significant difference. I haven't asked anyone for the official label because it really doesn't matter. Either way, I have to stab myself multiple times a day.

I take a long acting insulin that is designed to peak at the same time as the increased effect from the prednisone, around 7-8 hours after I take it. I also take a short acting insulin before every meal that peaks 2 hours after injection to align with digestion. All together, 4 injections a day plus multiple pokes to check my sugar levels. The injections still hurt sometimes. My dietitian claimed they were "no worse than a mosquito bite" but she lied. My stomach and thighs are covered with tiny bruises and bumps from the injections even though I rotate the injection site.

The reason this past week has been so hard is that I keep getting sugar crashes (hypoglycemic, to be technical). I find it strange how I can go for weeks without a single crash and then have three in one week. There doesn't seem to be any pattern which is the most frustrating part. The only time the crashes make sense is if I take too much short-term insulin before a meal and then don't eat enough carbs to balance it out. I try to adjust my insulin as much as possible based on the meal but I sometimes get it wrong.

Exercise also lowers blood sugar and on the days that I know I'll be more active, I cut back on my long acting insulin to avoid a 4pm crash. However, this doesn't always work as I can still sometimes crash out a few hours after exercise. Or during exercise. Or at 3 a.m. I can not figure it out.

I'm lucky that I get physical symptoms from low sugars which doesn't happen to everyone. A lot of people with type 1 diabetes have had so many crashes that they become "hypoglycemic unaware" which means that their bodies have stopped giving signals when the blood sugar drops. Thankfully my body still gives me a warning instead of just passing out or slipping into a coma. If I'm sleeping I'll wake up with sweats and feel faint but some people just lose consciousness with no warning. That's when having one of the dogs trained to smell low blood sugar would be helpful.

When I'm crashing out, I go to the kitchen where I devour everything in sight. The diabetes manual I was given told me to drink a small cup of juice and then check my levels after 15 minutes. That sounds great but at that moment, I need to have more than a small cup of juice. I want to eat everything and find it very hard to stop. I know rationally that as soon as the sugar from the juice or cookie brings my level back up, I'll feel fine and I don't need to eat the entire bag of trail mix or half of the cake but its hard to translate that to my body. It's like my body is in panic mode and thinks every single possible calorie is required to get through the next 5 minutes. After about 10 minutes, I stop sweating and start feeling normal again. I'll check my sugars again to make sure everything is back to normal and then carry on with my day (or sleeping).

I'm very thankful at how good the technology for managing diabetes is now. If I wanted, I could get a blood sugar meter that texted me (and my family) the results (although those ones aren't covered by my drug plan). The insulin pens are ridiculously easy to use compared to syringes (although more expensive if not covered) and pumps are becoming smaller and easier for those with Type 1 diabetes.

I've obliviously only had experience with the current technology but when talking to older nurses or doctors, they go on about how much easier everything is now for patients which makes compliance that much better. Compliance and management is so important with diabetes because uncontrolled sugars can cause heart problems, blindness, nerve damage, and slow to heal infections. All of those things can happen with controlled sugars too but is less likely.

It's hard to have a disease where I try to manage it perfectly and do everything by doctor's orders and there are still moments when I have a blood sugar of 15 (high) or 3.5 (low). It's like lung failure with CF where you do everything right but still decline. Only diabetes provides more immediate feedback every time I get the insulin dose wrong for some random unknown reason. It's terrible.

The end.

Sunday, 26 March 2017

Transplant Trot in one month!

I realized this morning while jogging on the treadmill that the Transplant Trot is in a month! Eeek! My knee is feeling significantly better than last month so I've been able to crosscountry ski and jog on the treadmill once again. I haven't been out downhill skiing but mostly because I'm not a fan of downhill skiing on soft spring snow. It's a lot more work and much harder on the knees.

On the treadmill I'm managing to do 5km in 45 minutes (with many walking breaks). I know that once I have to jog outside, my time will be much worse since the treadmill is much much easier than actual jogging.

I wasn't going to set a time goal for myself and just "have fun" but let's be honest, of course I'll have a goal. I need something to compete for. I'm thinking that 40-45 minutes is a reasonable goal for my 5km. I know that's slower than average time (according to google) but I do not move very fast.
I'm thinking 40 minutes because I have this idea that I'll be much more pumped up and motivated on the day of which should automatically knock a few minutes off my time (because that's how it works, right?).

Anyway, if you want to join me or just cheer me on to see if I can do it (and Isaiah doing the 10km), the run is at the Moncton Press Club on April 29th at 9:30 (run starts at 10). More info here.

Also, if you're doing your taxes and realizing you should've donated more to charity and don't want to make the same mistake next year, everyone in my family is doing the Great Strides Walk to Make CF History in May! We would all love someone to sponsor us! You can do that here if you feel so inclined.