General Update

Just a quick update about a few things health-wise that have changed over the past few weeks:

Wound: My wound continues to heal nicely, it's almost closed so the dressing changes have reduced back to every other day. I finally have some days where I don't have to wait around for homecare all morning.

Neurology: My MRI brain scan results returned normal. Yay! This is further support for the doctors who think that the seizures were medication-related so I hopefully no more seizures for me.

           Of course nothing is guaranteed so to be on the safe side, they recommended that I not drive for three months since the time I stopped the anti-seizure meds - which puts us to sometime in mid-June. This does mean that I should be done with the neurologist. Another doctor down!

Lung Function: My lungs are doing great, my FEV1 at clinic on Monday was 1.67 (53%!!) which the respirologist almost didn't accept as I was struggling to repeat it. I finally did on my 5th attempt. I'm getting higher numbers at home so I'm wondering if my machine needs to be calibrated or if I just get better numbers first thing in the morning when I'm rested.

Weight: My weight continues to shoot up. Yay! My appetite is the highest I think it's ever been which is excellent. Another 10lb and maybe I can stop drinking instant breakfast and two boost every day.

Blood Clot: I saw the doctor on Wednesday who is pleased with my anti-coagulation treatment and informed me that I will be on blood thinners for the rest of my life. I had kind of assumed as much but it was still annoying to hear. He basically doesn't want to mess around and chance another pulmonary embolism which I can appreciate and since I have my blood taken all the time now anyway, another vial to check my levels is not that much of an inconvenience.

Apartment: We gave our official two months notice today. So if all goes well, we'll be leaving here the end of June. Time to start eating everything in the freezer!

Honeycomb Mittens.

I learned how to knit the honeycomb mittens! Or Newfie mittens as the pattern I found called them (I still can't figure out if that's suppose to be an insult or if a lot of people in Newfoundland wear this type of mitten). My late grandmother use to yearly knit us a pair of these kind of mittens to keep our hands warm so I thought it would be fun to try.

As with most things, it wasn't very hard once I figured out what I was doing but it's definitely the most complicated thing I've knitted in my short knitting career. The yarn kept tangling which was frustrating and I'm not sure how Grammy use to make them with three colours without ending up with tangled messes. Maybe she had special yarn powers.

The right mitten is clearly my first attempt at the pattern, it's too small for Isaiah's hand (although it fits mine fine) and since they are suppose to be for David, I'm hoping it will stretch out. The second one (left) turned out much better.

Zoo day!

We had a zoo day today! It was an absolutely gorgeous day for walking around and seeing adorable animals. They were mostly all quite active which was fantastic except the sloth of course. I think it was a one time thing the visit we saw him moving around the enclosure.

Isaiah tracked how much we walked and before his phone died, it recorded about 7km so we figure it was at least 71/2 overall. Yay me! It was worth it even if I may not be able to walk tomorrow. We made it to every exhibit that was open which was a first for me, all my other visits I stuck to the main areas as I didn't have the energy to walk the entire thing. We even went down the excruciating long hill to see grizzly bears and raccoons. Too bad the raccoons were out for the day...good thing I can see them whenever I want in the garbage cans at the park across the street.

Pictures of the adorable animals, pretty flowers, and the annoying geese who wouldn't leave us alone while we ate lunch. Can you spot the white snow leopard? It camouflages so well! 

5 Months!

It's my 5 month post-transplant, yay! Today I managed to get a fev1 of 1.78, my highest yet! I hope I can reproduce it at the lab tomorrow and see what % it works out to be. I'm thinking it's over 50% by their calculations which is amazing. 

I went for a celebratory bike ride this morning since it was so beautiful outside. I still had to bundle up as I get cold pretty quickly but it was worth it. It still feels so good anytime I'm able to go for a long walk or bike ride. I have a hard time coming to terms that it's still possible without a coughing attack or it draining my energy for three days.

One of my fears before the transplant about the procedure was that I would have the surgery and then spend all of my time afterward either hospitalized or in appointments at the hospital. For the first three months, it seemed like that fear was coming true. After spending the first two months in the hospital, once I was finally discharged, it seemed like I was still spending all of my time and energy at or waiting for appointments. I was starting to feel as though I did the surgery just to live at the hospital.

This last month though has been much better. There have been less appointments and being discharged from physio two weeks ago also helped. I still have to go to the hospital two or three times a week for blood work but it's no longer a 20 hr/week commitment. I feel as though I'm able to spend my energy on activities I actually want to do which is a brilliant change. Of course it helps that I have more energy and just feel better overall.

My fears of spending all my time at the hospital and never being able to travel again are slowly diminishing. It finally feels as though I may one day have a life that doesn't revolve around homecare nurse visits, clinics, and blood work. Going for bike rides and to baseball games (last Tuesday) really helps me feel more independent. Also, much to Isaiah's delight, I have more energy to cook and help out around the apartment. Although much to his dismay, this means I have also started making a mad list of things we need to do before we leave Toronto.

Taking a short water break along the bike path.

On the way home I went through the Ontario Place path and watched some rowers.

Clouds moving in, time to head home.

So much pottery!

I realized on Wednesday at pottery class that I have a ton of pieces on the go and am going to have to spend the next one or two classes glazing everything. I did have fun on the wheel and managed to center a medium-size chunk of clay! It was an exciting moment and I turned it into a little vase.

Included in this slew of pottery pics is some Dr. Who-inspired mugs that will hopefully be Isaiah's birthday present if they turn out right. Also shown are two of little enclosed bowls that I made on the wheel, two of the three covers fit which is pretty good.

Random positive milestones.

Another 'getting better' milestone that I recently reached that no one had told me about is that (as one of my friends put it), my 'womanhood' has returned. According to the doctors, it is normal for women not to have their period for several months after surgery. For me, my body decided immediately after surgery to make sure that I was not pregnant and then pause for four and half months before deciding it's okay to reproduce again. Silly body.

I guess it is a positive step though as it means that my body is getting healthier and my hormones have somewhat adjusted to all the medication. Yay for another random step forward!

Cheddar/Caramel Popcorn

I've been introduced and subsequently gotten addicted to caramel/cheese popcorn. The unfortunate part is that my new addiction is cutting into my bank account. So I decided to make my own and while it's not quite the same, it's still delicious enough that I've been devouring two bags of popcorn a night. The good part is that it's helping with my weight gain project. I'm up 10lb from all the weight I lost from the surgery/hospital stays. Only 15lb left to go! More popcorn and sugar for me!

Popped the popcorn, coated it with caramel, and baked for an hour.

I cheated and used this stuff instead of making my own caramel sauce.

For the cheddar ones, I sprinkled 'White Cheddar' seasoning on top. This is the short-cut version.

And then I ate it all. It's so addictive.

Dental care post-transplant

I went to the dentist today and was reminded how much I now have to consider my transplant when doing any of the regular life things. I guess it's not so much my transplant as the medication I'm taking because of the transplant. Much like how I now am suppose to wear sunscreen all the time as I'm super susceptible to get skin cancer.

Apparently now I'm suppose to get antibiotics whenever I go to the dentist as the cleaning can cause my gums to bleed which could lead to infections. Thankfully the dentist was able to give me some but she would've preferred to have had a order from the transplant doctors. Considering this was at the dental office in the cancer hospital, I can't imagine many of the dentists in NS being prepared.

The good news is that I got a passing grade from the dentist and hygienist. I was a bit worried I might have a cavity seeing as my oral care was less than stellar while hospitalized.

Ground Squirrels

Since I've been talking about how long it's taking for my muscle to redevelop and how much effort it's been, I was super interested when I heard on CBC's Quirks and Quarks about a study looking at muscle atrophy (degeneration of muscles).

The scientists studied muscle atrophy in ground squirrels (officially in the thirteen-lined ground squirrel, aka striped gopher, aka squinney) and tried to figure out how they can hibernate all winter in their underground burrows but be healthy in the spring. Pre-surgery, I had never considered how animals hibernate for the winter without losing all their muscle mass. Now it's an amazing capability that I wish I could have acquired for those few months.

How hibernation works for these ground squirrels is that they have a regular summer running around the prairies eating as much as possible and trying not to get flattened by cars. But during the winter, they hibernate in their burrows, living off their body fat, with a low body temperature. Every two weeks, they re-warm to normal temperature for a day before starting another two week cycle. In the spring, they pop out of the burrow, skinny but still healthy and with muscles. 


So the scientists decided to put the squirrels through a MRI to see how their muscles develop over the winter without food. They found that the muscle mass decreases during the first part of winter but that during the last two months, the size of the muscles increase even while the body mass declines.

They haven't looked into which protein is responsible for the activation of the muscle growth but think it may have something to do with the liver as that is the only muscle that does not grow in the late-winter. The squirrel has to be using resources from somewhere to keep the muscles strong so the follow-up studies will try to find the source. 

They hope that if the protein is found, it can be applied to help people who need it. Anyone from those with long hospitalizations to the elderly who are not as mobile to astronauts whose muscles decline from lack of resistance.

Of course, this research is at the most preliminary stage possible so no one is going to be getting any muscle growth proteins just yet but it's a great start. It's one thing to know that muscle loss sucks but to go through it is a very different matter. I thought I was prepared but it was a huge shock when I woke up after 5 days and didn't have the strength to lift my head or raise my arms. Considering I'm still recovering from losing all my muscles and not being able to talk for a month, anything that could've helped would have been a huge relief.

If you want the study better explained, you can listen to it here.

Good-bye oxygen!

One thing I think I forgot to mention is that I no longer have oxygen in the house. Yay! After the last bronchoscopy, the doctor said it was time for me to cancel my home oxygen. They always recommend to keep the service for at least the first three months post-surgery as it's possible that some people will be discharged with oxygen or need it after certain procedures like bronchoscopys. I've been given oxygen during all of my broncs but my oxygen saturation has always recovered after a few hours. I think between the sedative and the inhaled freezing stuff, my lungs go into shock.

But since those are mostly behind me (I hope), I was given a discontinue prescription, called Vital Aire, and they sent someone to pick up the equipment that had been gathering dust the last three months. Another thing gone!

The condo has no storage so it was also nice for it to all be out of here as it opened up a bit more room in the entryway.

Pottery class

I had my second pottery class last night and I'm pleased to report that the vase did not crack at the top. It did slightly at the bottom though so I guess it will be a decorative vase.

I spent all evening on the wheel and learned how to make a closed pot. It involves bringing the clay up as you would for a mug but then coaxing it together at the top so there ends up being a hollow shape. I sliced off part of the top which, in theory, will turn into a perfect fitting cover for the base. It was a lot of fun to try and I managed three successful ones. My back was killing me by the end of the night though, I think next week I'll have to give my back a break and glaze stuff.

I'll also try to remember to take pictures to make this update more interesting.

Cooking: Pizza-inspired spaghetti squash.

When Mom and Dad were up over Easter, they brought with them a giant spaghetti squash for us to enjoy. I must admit, I had never before had spaghetti squash but it was delicious. We tried to make a 'pizza' from it as instructed from some recipe online but it turned out to be more like a quiche as the egg didn't mix together and it never turned crisp. Regardless, it was delicious and I have now bought more spaghetti squash to feast upon.

Monster of a squash!

Baked for an hour.

All the yummy bits were scooped out.

We mixed the squash with a egg, oil, mozza cheese, salt, and pepper and spread it on a tinfoil-lined cookie sheet and baked for 15 minutes. The recipe said to flip it to make an even crispiness, so we flipped it with much difficulty but seeing as it never crisped up, it wasn't worth the struggle.

Topped it with green pepper, feta cheese, tomatoes, and chicken.

Baked again for 15 minutes and yum!