Weight recovery!

I realized two weeks ago, when I was weighed at my lung function test, that my weight has hit my pre-cancer amount. Hurray! I lost so much last Nov-Dec but now it's recovered.

People with CF who have transplants often have to watch what they eat after the transplant as, after years of being told to eat a high fat, high calorie diet, if they stay on the typical CF diet, they end up gaining too much weight. Like the normal population would if they ate a high fat, high calorie diet. Post-transplant, the anti-rejection medication and steroids increase one's appetite so it's important to watch how much I eat. While all the weight gain is good for a population that is generally chronically underweight, it can be an adjustment after surgery.

Last year, I was just getting to a good weight when I got cancer and then immediately lost it all over the two months I was in the hospital. I'm now finally up to a good weight again and I don't know what will happen now. This is basically new territory for me. Will I shoot past my target weight and have to cut back? Should I just keep eating as I always have and maybe I'll maintain the same weight as now I'm exercising a lot more?

I have stopped drinking Boost every night and my palate is very happy about that. But maybe I'll soon have to cut back on the nightly chips as well.

20 Month Transplantversary!

It's my 20 month lung-versary today. Yay!

I've had a great month. Besides spending the week at the cottage kayaking and playing games, I've been to the beach, hiking, and cycling around Springhill.

Yesterday, Isaiah and I hiked a trail in Cape Chignecto. I thought spending the day on the coast would offer some relief from the heat and humidity. I was wrong, it was just as hot there.

What has been fantastic is being able to really push myself and not feel as thought I'm going to throw up or get lightheaded. I had that experience last summer but it, unfortunately, didn't last as I started feeling faint from the cancer when I pushed myself. I really hope it lasts this time.

Yesterday when I was struggling up the "hill of torture" - a one km incline with a 30% grade and loose rock -  I wheezed and sweated but I never once felt as though I was going to throw up or have a coughing fit.

It's been 20 months since the transplant so maybe I should be over it by now, but I still find it surprising that I can breathe so easily. I may only have 63% of expected lung capacity but that 63% is still amazing.

Some pics from the past month:

My bike chain is well oiled.

Kayaking down the River Philip with Mom.

Made it to Heather's Beach!

Hiking at Five Islands.

More Five Islands.

Beautiful sunset walking home from watering the garden.

Beach Day!

Cape Chignecto - on the way back we, for some reason, decided to go up that hill on the right instead of walking along the beach.

Torture hill. It doesn't look that steep in the pic, but it was.

Grumpy/tired face climbing torture hill.

Yay! Made it to the top!

Amazing views.

It's been a good month.

Cooking: FIsh Tacos!

I haven't been cooking anything new lately. As it's been too hot to turn on the over this past week and with Isaiah gone, I've mostly been BBQing chicken or fish to go with a large salad. However, Friday I went grocery shopping and a fish taco kit was on sale and 50% off so I couldn't just leave it there.

I don't normally buy kits because I find I can make spice mixes that are just as good (or better) but this one was quite delicious so I thought I would share even though this feels like cheating.

I used half mayo and half sour cream with the sauce mix and topped it with lettuce from the garden, tomatoes, and mango. And then I had a big salad on the side. Yum!

Does not include the fish.

Battered and BBQed fish through a foggy lens for some reason.

Mostly just a plate of veggies.

Monthly pft update

I finally had my pfts on Friday (they were originally scheduled for Monday but someone had a "death in the family" so it was rescheduled).

And, I got my highest in about a year! I think August 2015 was my highest post-transplant but yesterday was a fev1 of 1.83, or 63%! Yay! My first attempt was 1.81 and then it took 4 more attempts to repeat it but I finally did (I actually got higher!) so it was accepted by the computer and the therapist!

Clearly all the exercise and the aerosol masks are working for me. My cough is pretty much gone which is also excellent.

The only weird part about it is that I'm getting low numbers at home. I had my microspirometer checked at the lab back in Nov and they said it ran a bit low but getting 1.2something at home and 1.8something at the lab seems to be a bit more than 'running low.' I suspect that part of it may be that I try harder in the lab than at home but it shouldn't be that much of a difference.

Oh well, as long as it's consistent at home and I can deliver at the lab, I'm not going to worry about it.

Never forget your meds.

Monday morning, I went to get my blood work drawn. I set my alarm early, did my (annoying) mask, and, because I was hungry, ate a quick breakfast before heading out. I was halfway up the hill to the hospital before realizing while eating breakfast, I had taken all of my pills. And doing so meant that there was no point in getting blood work done as, to get an accurate level, it has to be drawn before I take my anti-rejection medication in the morning. If I have it drawn after I take my meds (which has happened in the past on other forgetful days), the number is skyhigh and then the doctors panic about the false-high. 

Taking my morning meds with breakfast is so habitual that I never stopped to think that I needed to hold my anti-rejection pill. It wasn't a big deal as I was able to get bloodwork done Tuesday instead but it was yet another reminder that I constantly have to be 'on'. Not only do I have to remember to get the bloodwork done, I need to think about my medication which is always a constant reminder of the transplant. It's something I can never escape from.

Even when I do remember to hold the medication, I can then forget to take it later if I do something outside of my 'normal' routine. One of my bloodwork days, I managed to remember to hold it, got bloodwork done, and then zoomed off to Amherst to get groceries and go for a early morning hike. Only to realize that, in my rushing out the door, I had forgotten my pills on the table so I had to go back home instead of hiking.

Before the transplant, if I forgot any medication, it was never a huge deal. The digestive enzymes were the most important (and still are important) but even then, if I forgot them, it was more about limiting what I ate as I wouldn't be able to digest food. It wasn't a potentially life or death situation.

I realize that sounds super dramatic about one pill on one day but missing immunosuppressant medication can lead to an strengthening of the immune system which can then lead to rejection which leads to lung failure. It's scary to think that one night or morning of forgetfulness can cause rejection.

My phone has a scheduled alarm every morning and evening at 9 to remind me to take my meds but if I'm in the middle of something, I sometimes hit snooze a few times. As a result, it's become habitual to either shut off my alarm without getting up to take my pills or actually get up and take them but then forget. It's become such a routine that I will sometimes panic before drifting off to sleep thinking that I've forgotten. That's where it helps that I have everything pre-sorted in my weekly medication containers so I know if "tuesday evening" meds are gone or not. It's pretty rare that I'll actually forget but it's always something that my mind likes to worry about.

It's hard to always remember to grab my nightly pills if I think I'm going to be out of the house past 9pm. Like in PEI last month. We went off to the beach for a bonfire and it didn't even cross my mind that we were going to be out of the house past 9pm. I had, unusually, left my phone back at the house so I didn't even get the alarm at 9 to remind me. It wasn't until 1030 that I checked the time and then freaked out and rushed back. I know that a few hours delay once in awhile isn't going to cause instant rejection but it's still something that worries me.

Vacation Pics.

During the past week I basically spent every day out kayaking. On the way to Yarmouth, we stopped to hike Cape Split with my aunt which was fun. I don't remember having ever hiked it before.

Cape Split

So many birds!

How I spent last week.

Pretty sunsets.

Can't forget the s'mores!

There is a loon there somewhere. I chased them around the lake, a lot.

Took a break chasing the loons to watch a struggling bee.

Another night, another pretty sunset.

Back!

I'm back from my little vacation! I spent the week kayaking, swimming, and playing washers. It was great but now I feel like I need a few days rest.

 

I'm back to get bloodwork done tomorrow. My one month without bloodwork lasted two weeks. Not too bad. I didn't really think I would be able to go one month without having my levels checked but it was a nice dream while it lasted. My immunosuppressant levels were a bit low last time so the doctor increased my medication dose. As a result, now I have to get my levels checked again to make sure they aren't now too high. It's always a balancing act.

Along with the medication level increase, I've been started on intense aerosol mask to help my lungs and try to get rid of the infection. I'm not really sure why they're treating it so intensely but I'm hoping it gets rid of the cough I've had for several weeks. 

I've been on the mask for one day and it makes me cough and is quite terrible. But I'm sure I'll get use to the smell and taste like I have for all of my other masks and then it won't feel as effective. But it would be nice to get rid of this cough so I'll be good and do my aerosol masks twice a day for the next month.

Whoever said aerosol masks were a gone forever post-transplant were quite delusional. It's nice not to be on them all the time but any time I get any sort of infection, the first thing the team wants to do is put me on some sort of aerosol mask. It makes sense as it's the best way to the meds directly into my lungs but I wish I had been warned more about how many times this would happen post-transplant. I don't mind it too much as it's something I did every day pre-transplant so it's more like going back to old habits. But still habits that I would rather not have and that take a lot of time out of my morning when I would rather be sleeping.

Vacation!

We're off to a cabin in Yarmouth for the week! It's kind of like a real vacation. No internet and sporadic cell service, I may have some withdrawal for the first few days but I'm sure the s'mores will help. 

Garden!

Look at the garden grow!

Lettuce!

The peas and beans are coming up nicely.

The beets have exploded!

Spinach at home is also doing well.

Ground cherry!

Bronch results!

I got bronch results back today!

Andddd....

*drumroll please*

...it's negative for rejection! Hurray!!

However, the cultures either from the biopsy or bronch wash (the fluid they push into the lungs and suck back out) showed that I'm growing one of the major superbugs that are quite popular around hospitals. The transplant coordinator called on behalf of the doctor to ask how I was feeling and if I was having any symptoms of an infection. I told her no, that apart from a sore throat from the bronch, a lingering dry cough and a slightly congested nose, I've been feeling great (that probably read like sarcasm but I, honestly, have been feeling quite healthy).

I honestly thought that I had already been growing this bug as the doctors told me I was during all my chemo-fever hospitalizations. So I'm not sure if Toronto just didn't get the memo or if it's now growing in my lungs versus before when it was maybe just in my nose? I called the Halifax CF coordinator to clarify as the Toronto woman wasn't my usual transplant coordinator and didn't really know anything.

The Toronto coordinator went off to talk to the doctors and I never heard from her again today as to whether or not they recommend treatment. Seeing as I don't feel infected and my lung function is doing well, I doubt they'll want to treat it. It's one of those bugs that they can treat a few times but after that, they don't have very many medication options available. It's better to wait unti necessary to use the 'big' antibiotics. I've been on them all before as I've had all this stuff pre-transplant so if I had to guess, I think they'll want to wait and just keep an eye on it for now.

In other health news, I can go back to only getting bloodwork done once a month! Hurray! Last time I said that, it lasted one week so we'll see if I can maybe get two weeks off this time.

Hope everyone had a good Canada Day!

We spent the holiday in Pugwash at the Highland Games watching people in kilts play instruments and then men in kilts lift heavy things. It was fun. But then I crashed out afterward. I think the Toronto trip had caught up with me and then spending all day in the sun was too much.

After spending a day napping and another day reading, I feel like I've almost recovered. My throat just needs to heal and then I'll be back in prime condition. The doctor really destroyed it during the bronch.

Anyway, no more bronch talk except to say that I don't have any results yet. I'm hoping to find out if/what they found sometime this week and if I can stop getting bloodwork done every week. I would like to reduce the weekly stabbing. I called the Halifax CF coordinator today and was told that they don't know anything yet. I'll start the harassment of my transplant coordinator tomorrow.

Once I get the clear on the bronch I can relax more and perhaps start planning a few small trips within Canada. Nothing out of the country for a bit (because no one is going to give me travel insurance right now) but it would be nice to leave the Maritimes for a few days for some non-medical travel. Maybe see some other parts of this wonderful country.

Springhill fireworks!

Boom!

Very Nova Scotian.

Men throwing things.

Recap of the bronch

[Happy Canada Day!!]

So the bronch....I feel like I'm getting ptsd just thinking about it. The bronch wasn't until 11:45 on Tuesday which meant that I was very hungry (and, as Isaiah said, hanxious) when we got to the hospital at 10:30 for all the pre-op stuff. My hunger was made worse by the fact that I had to walk past everyone eating at the breakfast table to get to the bathroom in the morning.

The pre-op nurses were very nice and listened to me about where to put in the IV for which I was quite grateful. The nurse got it in the first attempt, although with quite a bit of painful digging. The other nurse was asking me about the medication at that time and asked me how I felt after the last bronch. My last bronch was in Halifax and went fantastic as the doctor super drugged me up. The last bronch in Toronto was not as pleasent. I told her that I needed more meds than the last time and she reminded me that I was suppose to be 'consciously sedated' and not 100% knocked out. I told her that I tend to panic if I'm not knocked out so just note that I need extra drugs. She didn't note it.

I felt okay because I had talked about it so much with the doctor in clinic that I still felt as though I would get enough meds. Then an inpatient person was rolled into the pre-op area with a different doctor (who I knew from all my time in the hospital). The nurses told me the new patient was being added to the schedule and going in for a bronch the same time as me. The doctor gave a play by play of what happens during a bronch to the in-patient woman and her family, which really freaked me out.

After a bit, I was taken to a freezing room where I was given the freezing stuff to gargle and the terrible mask.

The freezing mask

After being sufficiently frozen, I was wheeled off to the procedure room. That's when I realized I was getting the floor doctor for my procedure, not the clinic doctor. The doctor I had during clinic was with the in-patient woman. This new doctor was nice but not prepped for me. I also had a resident who I had never met before and while she was nice, I hate when residents do procedures on me because I tend to panic and they don't have enough experience to know what to do when I panic.

I told the doctor that I needed extra meds and that I had woken up last procedure. He reassured me that I was going to be given the same amount as last time which was enough to "knock him out for three days." I said that I needed more and that if I was awake during the procedure, I would unconsciously be fighting against them.

The resident gave me more freezing spray, explained all the things that could go wrong, and had me sign the consent. Then I moved over to the procedure table, the nurse gave me the sedation, and I must've been knocked out for a bit but it felt like I was instantly opening my eyes only be able to see the towel they place over the face and was choking.

I felt like I couldn't breathe and started to panic. I started shaking and kept trying to cough and all I could hear was the doctor and nurse telling me in a panicked voice to stop trying to talk. I'm not sure why they thought I was trying to talk? Do people do that? I definitely wasn't, I was trying to get the 'I'm choking and dying' feeling to stop. The panic in their voices while they kept telling me that it was almost over, that I needed to stop trying to talk and to just relax, did not help me.

Besides, has telling someone that they need to calm down ever actually worked?

I did not calm down.

I continued to hyperventilate, shaking, and half-coughing until they were done. It was terrible. Once the scope was finally removed and I was able to breathe again, I couldn't stop crying for quite some time. It was traumatic. The doctor kept asking if I was okay and I had no answer because my throat hurt too much to talk and I was just focusing on breathing. I kept shaking my head.

They wheeled me into the recovery room where I laid until the x-ray man showed up with the x-ray-machine-on-wheels to make sure I had no air trapped in my lungs. After the x-ray was done and cleared by a doctor, I was free to go. I got dressed and a porter wheeled me to the front door and then Isaiah and I walked back to the B&B. It was a clear sign that I wasn't given enough sedation when I felt okay to walk around.

Back at the B&B, I did manage to nap for the afternoon before we went out for supper and gelato. My throat was super sore yesterday and still a bit sore today but I haven't had any of the other possible side-effects (temp, coughing up blood, collasped lung, etc...). I imagine my throat is raw from me trying to fight off the scope.

Mmmm gelato to try and erase the trauma.

I'm still traumatized from Tuesday and I don't know how many more times I can tell these doctors that I need lots of sedation. I'm not sure how I don't convey my seriousness enough to these people. Is it because I'm not freaking out externally so they don't believe me? Is it because in my panic pre-procedure, I mostly just shut down externally instead of outwardly freaking out? Do I need to be actually crying for them to give me extra meds?

The doctors always say they understand but then never give me enough meds. I understand why they couldn't when I was first post-transplant as my lungs weren't strong enough to handle that many drugs. But I can handle them now! I was given loads last Nov in Halifax and was out the entire time and it was wonderful. I really hope this doctor charted how terrible it went so the next one, in 6 months, will understand that I'm not joking when I say "I need to be out so give me all the drugs," otherwise I really will be crying.