New infection.

I got a phone call this morning from the hospital. When I answered the phone and heard "Hello Allison, this is Dr. I-Forget-Her-Name, from the Toronto General Hospital, how are you?," I let out an audible "uh nooo" as a response. No doctor calls on a Saturday to chat about the weather. She laughed at my reaction and then proceeded to tell me that the results of the wound swab have returned and it is indeed infected.

Nooooooooo. 

Thankfully, she felt confident that it could be treated with an oral antibiotic so I didn't have to rush into emerg for an IV. However, Isaiah did have to walk up to the hospital to pick up my new prescription before their pharmacy closed. Just like he did yesterday for another prescription. I tried to be helpful and offered to sit in the car if he wanted to drive but he opted to walk instead. We both can't wait until I get the approval to drive again.

So, two weeks of a new antibiotic and hopefully that will get rid of this nonsense. I do imagine that this means they'll want the dressing changed daily so we're going to have to figure out how to deal with the wound without gagging.

Relaxing Friday

I've had a fairly relaxing two days. It's seems like I finally caught a bit of a break for a long weekend. Physio yesterday went okay, my weights are progressing slowly and while my increasing treadmill speed seems to have hit a plateau, I'm confident I can get it up given enough time. It was a bit of a luxury to be able to go to the hospital and attend physio without any other appointments or meetings.

Today was a board game and knitting day. It was fantastic. Except for the nurse arriving to change my wound dressing, I had zero hospital-related activities. No complaints from me! The nurse said the wound looked about the same from last Monday so at least if it is infected, it's not getting worse. I expect to hear about the results from the swab next Monday or Tuesday.

I'm challenging my knitting skills by working on a toque for Isaiah, I finally finished the brim part and have finally made it to the actual toque section. It may be ready to wear by May. A summer hat perhaps?

2nd Post-Transplant Clinic

I had my second clinic today and just like last week, I arrived home only to collapse on the couch for the evening. There wasn't as much of a information overload this week but it was most definitely a longer day.

To start, I had physio bright and early which I always find a bit of a struggle as I still feel half asleep. I am progressing slowly on the treadmill, increasing my speed in 10 minute increments. I have my 3 month walk test next week which is slightly terrifying. Maybe I'll make it down the hall three times before my legs give out. The physiotherapist also "suggested" that I start exercising at the gym here in the building on a few of my 'off' days. She stared me down until I agreed. Isaiah was listening in so I'm not going to be able to slack off without hearing about it all the time.

Following physio, I had my lung function tests which were up slightly! Up to Fev1 of 1.07 or 33%. Considering this morning the highest I could get with the spirometer was .86. I'm slowly starting to accept that my numbers are low and they might build up over time or they might not. The important thing is that the lungs are working and I'm not short of breath.

The big news from clinic is that I can stop my aerosol mask and one of the medications. Yay!!!! I didn't expect anything to be discontinued until after I met with the infectious disease doctor next week. It was a nice surprise. I can wake up in the morning and simply get out of bed for the first time in forever. It's going to be strange. I'm sure I'll waste the extra time sleeping and continuously hitting the snooze button instead of anything useful like shower. I tried to talk them into discontinuing some of my other medication since they were on a roll but the doctor wasn't a fan of that idea.

The other news is that there were only 2 1/2 viable samples from my broncoscopy (I'm not sure what a 'half' of a tissue sample means). This means that because of the tiny sample size, the doctor could not give a definite result. After the bronc, they told me they were only able to get 5/10 samples so I'm not super surprised. I fear that this means I'm going to be required to do another bronc before my 6 month assessment so they can get a definite result. Nothing was said at this clinic but there was a lot of "oh well, 3 months would be a long time to wait for the next one." The good news is that the 2 1/2 samples that were viable, were all negative for infection, rejection, and everything else tested. It's just not confirmed 100%. 

I also had my wound assessed by the specialized wound care nurse who had a new idea of how it should be dressed. It has been starting to smell a bit in-between dressing changes so it was swabbed for infection and said it did look slightly inflamed. I was given the okay to change the dressing on the 'in-between days' if it gets smelly or has a lot of discharge. That is a great idea, the problem is that it's super gross and it both Isaiah and I are not big fans of looking at it, let alone poking at it with gauze and saline. I am usually fine with these things but I think because it's on my own body and in such a awkward location, it's somehow different.

That is pretty much everything that happened today. I hope these clinic visits get less intense each time. Next time is going to be my official three month check-up appointment. I also have a bunch of other random tests booked for next week and the following week. The tests never end!

Medication

I thought I would mention a bit about all my new medication and morning routine now that I am out of the hospital. Pre-transplant, I would hear people in physio complain about the amount of medication and I would think, "I'm already on a ton of pills due to CF, what are a few more anti-rejection meds, I'll be fine." Well pre-transplant self, maybe you shouldn't have been so cocky as it really is a lot of new medication. I can see how anyone not use to taking pills every meal would be completely overwhelmed. I did have a lot of pills pre-transplant but I'd been on them for so long that it was basically routine.

Currently, I start the day with a puffer and one aerosol mask. Most people with CF no longer require a mask post-transplant but my donor lungs were infected with a bacteria that the doctors (and I) would like destroyed so I am on an inhaled antibiotic for (hopefully) only the first three months post-transplant. And that date is coming up soon!

I need to meet with the infectious control doctors before anyone will recommend stopping it but that means in two weeks or so, I might be able to wake up and not have to do an aerosol mask immediately for the first time in my life! I can't imagine how good it will feel to be able wake up and just roll out of bed, I will be so confused for the first few weeks. It already feels like I'm forgetting something when I don't do a second mask or my chest physio in the morning.

After my aerosol mask, I have to take my blood pressure (the apartment is filling up with medical supplies), temperature, and blood sugar levels. I also check my weight and Fev1 with the spirometer. All those numbers are recorded in a little book the hospital provided that I am suppose to take to every clinic appointment so the doctor can look for any upward or downward trends. Obviously, if I notice any myself, I'm suppose to contact my coordinator immediately. Seeing as all the numbers are all over the place, I'm waiting until they stabilize a bit instead of frantically calling every morning.

No need to use the machines at the drug store!

Isaiah then stabs me with the insulin and blood thinner needles before I can have breakfast and take my other medications. I am still a giant wimp about stabbing myself. The insulin needle is pretty much as small as the one used to to draw blood to check my sugar levels but since it's exposed, I have a mental block about putting it in my body. The other one is about triple in size so it actually is kind of scary.

Stupid needles.

For the actual medication, we thought it was best to buy a weekly medication sorter so I don't have to spent 20 minutes every day looking for and opening up all the pills bottles. It's amazingly useful considering I have a few pills that are only taken on certain days. The best part is that the day bits pop out which is useful on blood work days as I can't taken the medication until after the blood is drawn and have to take all the medication to the hospital with me.

So organized!

As with the aerosol mask, a few of the medications are only required for about the first three months as those months are considered the most dangerous time for infection or rejection. The anti-rejection levels are at the highest plus the body is sill trying to recover from having its lungs ripped out. The manual recommends living in a bubble for the first three months after transplant, except for all the times you have to visit the germ-y hospital...which is about every day. Every time I ask the doctors if some meds can be reduced, I've received a resounding "bahahaha....no". I may have to wait for awhile for that to happen seeing as my new anti-rejection medication is still slowly being increased.

Sunday morning's medication. Yes, I have to take them after I eat otherwise I'll fill up on juice.

The side-effects from the medication are definitely the worst. I'm starting that horrible loop the anti-big-pharma people always preach about where I'm taking medication to combat the effects of the first medication which then creates more problems and so on. The steroids have put my blood sugars out of whack, hence the insulin which can cause weight gain so that may actually be a positive for me.

My new anti-rejection pill (the one that replaced the seizure-inducing one), is giving me a permanent case of the shakes and is also starting to cause my hair to thin, either that or my bathroom is being taken over by stray hairs looking for a home. At the same time, another one is causing hair to start growing in random places. Hairy knuckles are now a thing, right?

I can't exactly break any of these medication cycles as I'll need all the anti-rejection medication for the rest of my life but hopefully the side-effects will diminish once the dosages are able to be reduced a bit.

A summation of my transplant experience so far

I had another topic planned for today but then I started working on a blurb I was asked to write for the local Petitcodiac paper and the next thing I knew, the afternoon was gone. So instead, I thought I would share the blurb I worked on today. I was given no guidelines on lenght or information requested so what ends up in the paper to be or topic so what ends up in the paper may be completely different after it goes through their editors. No, I have no idea when or even if, it will be printed. I'll keep you posted.

I feel as though I left so many details out but had to stop rambling at some point. It's actually a bit overwhelming to have it all condensed into several paragraphs. A lot happened in the last three months as I'm sure you already all know.

A summation of my transplant experience in under 2000 words:

Cystic Fibrosis (CF) is a multi-system genetic disease, affecting the lungs and digestive system. In the lungs, thick mucus causes increasingly severe respiratory problems. It is difficult to clear bacteria, which leads to cycles of infection and inflammation. Mucus and protein also build up in the digestive system, which causes digestive difficulties and nutrients must be absorbed with the aid of digestive enzymes. A lung transplant can prolong the life of some people with CF when their natural lungs fail.

I, Allison Watson, 28, had a life-saving double lung transplant in Toronto at the end of November 2014. I was diagnosed with CF at birth immediately as my older sister, Amy, also has the disease. We grew up trying our best not to let CF rule our lives or limit us in anyway. Of course, there were the daily aerosol masks, chest percussions, and a slew of medications but since I never had it any other way, it was just part of my routine.

After doing many school presentations about CF, I grew up knowing that my life expectancy was shorter than the average person. Knowing this, I tried my best not to delay any life goals; I travelled at every opportune moment, got two degrees from university, and cycled, with my brother David, across this beautiful country.

I also always knew that one day I may require a lung transplant. A lung transplant was always something casually discussed in my family as though it was something that every person considered in their lives. As I hit mid-twenties, a possible lung transplant became less of an abstract idea and much more of a reality as my lungs dramatically declined.

In July 2013, my partner, Isaiah, and I flew to Toronto for an intense week of pre-transplant assessment testing. They ran, what felt like, every possible test to make sure that the rest of my body could handle such an intense operation. In August 2013, at a cottage in PEI, I received the phone call saying that I was deemed eligible for a lung transplant and that I better start packing for the move to Toronto. As Canada only has five locations that does lung transplant surgeries (Montreal, Toronto, Winnipeg, Edmonton, and Vancouver), everyone requiring a transplant from the Maritimes is required to relocate to either Montreal or Toronto. Also, the hospital requires that each person listed live within a two and half hour commute to the hospital for when they receive “the call.” Late September 2013, Isaiah and I gave up our apartment in NS, and drove to our new rental in the heart of Toronto.

I then proceeded to wait for 13 months before receiving my transplant. Thirteen long months with physiotherapy sessions at the hospital three times a week, monthly or weekly doctor appointments between to two different hospitals, and surviving the coldest Toronto winter in a decade. The one positive was that we were able to explore the city, as much as I was physically able, and did way more touristy activities than most people who live long-term in the area.

I was given a pager that I carried with me everywhere as I never knew when “the call” would happen. The process is such that when a donor becomes available, they contact the closest match and let them know it’s their turn. There are occasionally false alarms if it ends up that the donor lungs have an infection or complication or are more appropriate for someone else. Often, someone requiring a double transplant is called and it ends up that only one lung is suitable for transplant. From listening to people at physiotherapy complain about false alarms, it seems that about half of those listed receive one or two false alarms. In the thirteen months I waited, I received zero calls.

About two months before the transplant, my health further deteriorated. My oxygen requirements were raised and my ability at physiotherapy decreased. I was hospitalized on and off as the doctors tried to keep my lungs stable and me alive. It was during a hospitalization that a nurse came into the room to tell me the news that I had been waiting 13 months to hear: I was getting my transplant the next morning. I was cautious about getting too excited as I always figured my first call would be a false alarm, also I didn’t have the energy for a celebration. I’m pretty sure the nurse was disappointed by my non-reaction as she said “Aren’t you happy? Don’t you want to call everyone?” Yes, I did. Eventually.

The next morning I was moved to the other hospital and then proceeded to wait anxiously with my family. I was very fortunate that my parents had decided to visit when my health kept declining as they were able to share my anxiety. The transplant did not happen that morning, in fact I had to wait until the next day before anything happened. To be honest, I was pretty out of it the entire waiting day and only remember bits and pieces. Such as, the doctor putting marks on my chest with a sharpie which I found hilarious for no reason. I recall being quite hungry while waiting and then I have a vague memory of seeing a doctor’s face while on a gurney in an elevator.  

And then nothing.

I woke up 4 days later in a dark, empty, hospital room. There was no one around and I didn’t have a call bell to summon anyone.  I didn’t know if I had transplant or how much time had passed. All I knew was that I had a ton of lines attached to me, I was all alone, my vision was super blurry, and I was unable to physically lift my head as I had lost all muscle.  It was quite terrifying. I was on a ton of pain killers and partly stoned- but not aware of it- which didn’t help my initial feeling of terror. A nurse eventually came back from break and told me a bit of information before I drifted back into a painkiller induced sleep.

I was filled in later with what happened. The operation was successful but not without complications. After the initial surgery, I had to be put on an extra corporeal membrane oxygenation machine (ECMO) which acted as an artificial heart and lung as my new lungs were not working as well as expected.  They then found a bleed in my new right lung so I was sent back to the OR for a second operation to clean everything up. My lungs worked much better after the second operation and I was able to come off the ECMO and bring me out of the comatose state.

The thing with waking up from a comatose state is that no one knows at what point you became lucid. I know when I woke up and was able to remember things again- even if it was still hazy- but my family couldn’t really tell the difference between me the previous day or that day. I was also unable to talk due to the ventilator so communication was initially all done through a letter board. With my blurred vision and foggy mind, simple communication took a long time. Eventually, I moved up to being able to write what I wanted to say which was much easier. It took about two weeks before I was switched from the medical ventilator to a tracheostomy. When the tracheostomy was put in, I was finally able to have some ice chips which, after two weeks without any water or food, were better than anything on earth. It took about another two weeks before I was strong enough for the tracheostomy to be removed.

My discharge from ICU was delayed due to the fact that every time the doctors thought I was stable, another problem seemed to arise. The first complication post-transplant was that they found a blood clot in one of my new lungs. That was managed through medication and having a very thorough ultrasound done of my extremities to make sure there were no more clots elsewhere. After that, I had a GI bleed which required that I receive several pints of blood from the bloodbank and multiple stomach scopes to close the ulcers That was fairly under control so I was moved to the ‘step-down unit’, which was basically the ICU only with fewer nurses. There, they noticed that the incision site around the sternum was infected which required another trip to the OR where they opened the incisions, cleaned the area, and removed ½ cm of my sternum. The area was treated with negative pressure wound therapy, also called a V.A.C. machine. A V.A.C machine attaches to the wound and removes the moisture or drainage from the site allowing for faster healing.

Once I was finally stable, I was moved to a more hands-off floor where I spent several weeks trying to strengthen my body, learning all about my new medications, and figuring out funding so I could have the V.A.C. machine at home for several weeks. I was discharged for one glorious weekend until I had several medication-induced seizures which put me right back in the hospital for another two weeks.  In total, I spent a little over 2 months in the hospital post-surgery. I had a longer stay than most people who have a lung transplant but then, not as long as some of the people I see at physiotherapy.

During the entire process, my family and friends visited as much as they were able, Isaiah visited every day, and I had an entire community of support back home that I heard from online and through mail. The support was priceless. Not just having Isaiah bring me delicious food when I was able to eat again, but hearing encouragement from a wave of people helped boost my spirit when I was feeling overwhelmed. The hours my family and friends spent playing cards, making cards, and reading trashy magazines together kept my mind off all the machines and onto something a bit more positive. It kept me sane and from getting depressed in a situation that could very quickly become depressing. They kept me going during each new setback and for that I have unlimited amounts of thanks and gratitude to give.

I am currently home from the hospital and my lungs seem to be doing well, although my medication levels have yet to stabilize. I once again have physiotherapy three times a week which is even more important now than ever as my body is deconditioned after so much time in the hospital. A new part of my routine is having blood work taken twice a week, x-ray, lung function tests, and clinic appointments once a week. I do not have any time to sit around and be bored.

The hope is that once everything has been stable for several months, I’ll be able to say good-bye to Toronto and return to my ordinary life. Only this time, without the oxygen tank, thanks to my brand new lungs, and perhaps, with a bit more energy. I will never know the donor of my lungs or anything about their family but I owe them my life. The donor family had to make a decision that no one ever wants to make. In their time of loss and grief, they decided to give strangers the chance for a better life. For the rest of my days, I will be indebted to them and will never forget the opportunity that has been given to me.

Made up the stairs to see Hood!

I made it up the stairs! Apparently all I need is the right motivation to climb a ton of stairs. Maybe my new physio plan should be "go to inaccessible plays all the time." My legs would get stronger as my bank account would get much weaker.

We arrived super early so I could take my time and not feel pressured to go at a regular speed. It was a good plan as I kept pausing for breaks. We reached the first landing thinking it was the top due to the amount of stairs we had just climbed but found out we had to go up once again. Thankfully, I was able to sit for a bit to rest and catch my breath before going for the second trek.

We had tickets in the front of the balcony thinking that the entrance would be at the bottom, if not the middle. Nope, it was at the top. So down more steps we went, very steep, steep steps. I found as hard as going up as I still find my balance is not at 100%. It's improving but I still find going down a gradient or climbing over a snowbank (getting out of the car, not just for kicks), a bit tricky. Yes, my legs/body is very tired today.

The play itself was tons of fun, great blue-grass music, beautiful set, amazing aerobics. It was a bit more violent than I would have expected but seeing as my experience of Robin Hood comes from Disney and Men in Tights, this version was probably more true to the origin story.

Robin Hood and Little John walking through the forest...lalala...

A slightly blurry pic of the set.

Bronocscopy #3

I think I still have some sedative in my system so this post may not make as much sense as it should. The third bronc was definitely not the charm that made me more comfortable with future procedures. It was by far my worst experience. Mainly because they didn't give me enough sedative so I was awake during the entire process. The previous two times I was knocked out for hours so I guess they were concerned about overdoing it this time.

They told me that they try not to knock people out completely but use just enough sedative to put them in a happy state so no one cares about the tube being shoved down their throat or pieces being clipped from their lungs. I still cared although I was out enough that I couldn't do anything about it except panic internally. Thankfully it was a fairly short procedure. Of course after it was done, I finally fell asleep for a little bit.

When I was woken up for the "make sure we didn't collapse your lungs" x-ray, the respirologist came out and told me that the bronc went well from their perspective. They were able to get 5 samples from my lungs even though they were aiming for 10. Apparently my lungs started bleeding a bit so they had to stop. She said "your lungs were bleeding" so casually that it was almost eerie. Does she not realize that those are really terrifying words to hear?

The recovery nurses decided I was good to go after about a 45 min nap. I felt okay until I went to change and immediately got a super hot flash and started feeling dizzy and faint. I pushed on and I made it out to the waiting room before admitting defeat as Isaiah commented "you look super pale." He fetched a nurse who took my blood pressure which was super low. She gave me some juice and escorted me back to the recovery room. I rested for another 30 min or so before the nurse declared I was ready to go once again. This time she booked a porter to wheel me to the front door so I wouldn't collaspe in her waiting room (clearly she did not say this was the reason).

Thankfully Isaiah was able to pull the car up close to the hospital entrance and then I basically napped all afternoon once we got home. I was suppose to go to a diabetic teaching session at the CF clinic in the afternoon but I totally bailed. It seemed pointless as I would have either fallen asleep or  wouldn't have been able to focus on anything, considering it took me one minute to fall asleep once I fell into bed.

I'm feeling a bit better this evening now that I've been able to eat something again and have begun the process of re-hydrating myself. I still think I will sleep well tonight despite having slept all afternoon.

1st Post-Transplant Clinic

Whew, what a day. It wasn't even necessarily super long, it was just information overload and a lot of standing in lines which is both good/exhausting for my legs.

I'll review my day (kind of) in the order that everything happened:

-Xray: My xray looked great. Yay for non-scarred lungs! The nurse practitioner said they looked "amazing" which was good to hear as I've had a bit of a dry cough the last few days but everything was clear on the x-ray. While I was waiting for the x-ray, I caught up with another post-transplant person who was on the 7th floor the same time as me. We shared horror stories and complaints. It was nice to bitch to someone who knew 100% how I was feeling. Not that other people aren't sympathetic but it's not the same as comparing medication side effects or incision nerve damage and numbness.

- Pfts: Oh how I hate their pfts. I'm fine with the regular ones where I inhale and exhale as quickly as possibly and then I'm done. Apparently for 'clinic days at TGH', I also have the pleasure of doing the ones in the plastic box. It's a clear plastic box that I'm closed into and required to pant "controlled and easily" while the respirologist turns the airflow on and off. I always feels as though I'm going to pass out during the panting without oxygen part and I start panicking a little. Rationally, of course I could get air if I just pulled away from the machine but I know if I do that then I'll have to start the entire process over. It's better just to panic internally and afterward. For some reason I thought it might be easier with better lungs, nope.

Also, my fev1s are officially crap. It's not my little machines fault at all. They were .87 which is about 28%. I would have been excited about that pre-transplant but I was hoping for way higher with the better lungs. Everyone in clinic who I freaked out to about the low numbers told me it's okay as they should slowly improve as my strength returns. They didn't seem concerned so I guess I shouldn't be either. The positive part is that my oxygen saturation levels are excellent, my heart rate is fine, and I don't feel short of breath so clearly something is working.

- Clinic: There was a ton of information thrown at me in clinic between my coordinator (who is honestly way better than my pre-transplant one) and the nurse practitioner (I didn't actually see a doctor).
1) I am scheduled for a broncoscopy tomorrow. This was new terrifying information. They just fit me in this morning so it's not as though someone forgot to tell me. I guess the last minute planning doesn't give me much time to start getting concerned about it. They'll wash down my lungs and take samples of everything. It's the best way to know if there is any rejection or new infections.
2) They (thankfully) decreased my blood lab requirements so I only now have to get poked for blood samples twice a week. My veins are happy about this news.
3) I should expect to stay in Toronto until at least the end of April if not May. My coordinator guessed that they'll want me here until my 6 month check-up seeing as they'll want my wound to heal and my medication to be stable before I go anywhere. But that may change after my bronc and all my 3-month post-appointments.
4) I'm being referred to the infection control doctors, the blood clot doctors (thrombosis), and neurology. Basically to get their individual opinions on the drugs I'm taking in their specialty to see if any dosages can be decreased or stopped. I would especially like to stop the daily blood thinner needles as I'm a total wimp about them and Isaiah is already tired of stabbing me.
5) Two of my anti-rejection medications were increased again. So many pills. Sigh. Honestly, I thought I took a lot of pills before, I now have to take them after breakfast otherwise I fill up on water. The new one gives me the shakes which I complained about and was told it was normal with the medication and that I basically just had to live with it. Awesome.

- Day outpatient unit: I had my wound dressing changed at the outpatient unit. I'm now going to have it changed there weekly, hopefully on clinic days, as those days are hard to schedule in the homecare nurse. I'll still have homecare the other two times a week. The nurse stocked me up on supplies which was super helpful as the homecare people don't provide any (it makes no sense, I know....). She also removed the last of my sutures from my surgery in Dec. The area that they re-cut has once again healed up nicely so it was time for them to come out before skin grew over them.

After the day unit, we picked up a medication refill, changed around some physio times due to the unexpected bronc tomorrow, and fled as quickly as possible. My plan of 'I'll tidy up the apartment after clinic' quickly became 'I'm going to lay in the bed silently for the next hour' as soon as we arrived home.

Now I have to eat as much as possible before I have to start fasting for tomorrow.

Vac is gone, hurray

The vac dressing is gone. Yay!!!!!!!

*happy dance*

*collapse on couch before legs give out*

Of course my wound is still quite serious and large. It has just now healed enough so that the black foam no longer fits into the wound and would start irritating the healthy skin if left in much longer. I have just moved to a 'traditional dressing' which means a layer of some antimicrobial gauze with a giant fancy bandaid slapped on top.
 
It is already much more comfortable. It's nice to be able to walk around without worrying if I'm going to trip over tubing. I was much more paranoid with this one than the oxygen tubing. The oxygen would just fall off my face if/when I tripped on the cord, this one had the possibility of pulling off the dressing. No more weird hissing noising coming from my chest due to a small leak in the dressing. No more noisy machine while I'm trying to sleep. No more feeling as though my chest is being vacuum sealed. And I promise, I will stop trying to make boxy black shoulder bags that are physically attached to you, the new 'it' thing.

Micro Spirometer

My post-transplant coordinator taught me how to use my fancy new expensive toy on Friday. Otherwise known as a Micro Spirometer. And honestly, for a machine that cost so much money, it doesn't do very much.

Thanks to everyone who helped me pay for it! Your money bought this tiny piece of plastic that I will begrudgingly treasure for the rest of my life.

As part of my new morning routine, along with all the pills and needles, I now have to measure my fev1 every day with the Micro Spirometer. As I'm sure you remember, the fev1 is a measurement of how much a person can exhale in one second. Or if you want the Internet definition: "This is the percentage of the vital capacity which is expired in the first second of maximal expiration."

I do it three times each morning and record the best result. Right now my numbers are kind of all over the place but the idea is that once I stabilize and am at my 'max health', I'll be able to know my 'normal' number and will be able to easily detect any change. If it starts to decline, I'm suppose to panic and call the doctors.   

I've been getting fev1s ranging from .50 to .90, or when I mess around with it and don't use the mouth piece, 1.15. Even though the coordinator reassured me that I'm doing it right, I can not get any consistent numbers. I still feel as though I'm missing something though. I was .70 pre-transplant so you think I would be way higher than that now seeing as I can actually walk around without oxygen. The fact that I get lower numbers concerned me at first but I've managed to convince myself that this machine just runs super low. I'll find out on Wed when I'm scheduled for my first post-transplant lung function tests. Eek! 

Happy Valentines Day!

Happy Valentines Day everyone! Thanks for all the love I've received over the past year and especially during the transplant process. It's been quite the journey and there is no way I could have gotten through the hospital days half as well without all the community support. Don't forget to tell your loved ones that you love them.

I have to climb stairs in 8 days. Gah!

I was feeling as though I needed to go out and do something in the social world that did not involve needles or doctors. So I did something slightly foolish. I bought into the marketing from Mirvish with their discount flyers and got Isaiah and I tickets for the Robin Hood play next week. That in itself isn't foolish. The fact that the seats are on the second balcony and there is no elevator is the somewhat crazy part.

In my defense, I could climb the stairs pre-transplant so I figured that I should be able to do it now. And then at physio yesterday, I barely made it through the 10 reps on the stairs at physio and realized I may have made a huge mistake. I have 8 days to get my legs prepared to walk up to the second balcony. Gah! What have I signed up for/voluntarily paid for?!

Maybe this will give me extra motivation at physio for the next week.  Or perhaps we will have to go super early so I can take a million breaks on the way up. Or maybe Isaiah can just piggy back me up (I have not told him this plan yet, I'm sure his back will be pleased). I will also be super paranoid about catching something from everyone which is going to add an extra layer of fun to the night.

Even though it may have been a bad idea, I'm actually super excited that we are doing something none hospital related. I'll let you know if I make it up the stairs.

Mittens

I finished the thumbs on my mittens. They look a little funny and triangular but they are crazy warm and functional so I'm happy. I realized when I started putting them together when I decreased the number of stitches from the pattern, I forgot to decrease the number of stitches for the thumb itself. As a result, the thumbs would have been giant if I made them the proper size. The problem with that is that I didn't have enough yarn left for giant thumbs hence the triangular shape as I had to shrink them down pretty quickly. I think the second attempt (one on right) turned out slightly better.

First pair of successfully knitted mittens!

The long wrists will be fantastic for the cold.

Rest well Grammy.

My grandmother died today.

I feel as though I should be more upset than I am. Perhaps it is because I'm so far away so it won't hit me until I go home and can't go visit. But also, the fact that we've been told it could happen every time she got sick or had a fall over the past years has prepared me for this day. I barely believed the email from Mom this morning that said Grammy was rapidly declining and to prepared for her to die. I've heard it multiple times before and she had always bounced back in the past. Obviously, this infection it was different.

Grammy has had very severe dementia for a long time and as a result, this is almost the second mourning period for the person the family once knew. The first loss happened would have been around when Grammy became unable to recognize family members and lost a lot of her physical capabilities. It was hard and painful to watch the person we love forget who we were, her own memories, and how to function. She was still there but dementia took away a lot of the person she had been. Today, we lose her for a second time.

However, this time it feels more as though we should be celebrating her life and being thankful instead of focusing on the fact that she is physically gone. To start, I am thankful that it was not a long, drawn out death. I am thankful that she died with family around her in her warm comfortable bed. I am thankful that she died with seemingly no pain or discomfort. I am thankful that her last food was ice cream because dessert was always her favorite part of the meal.

Most of my memories of Grammy are from when she was unable to recognize me as her grandchild. When the person with dementia starts forgetting family members, the grandchildren are often the first to be lost. As a result, for about a third of my life, my interactions with her were always from a place of one-sided remembrance.

When she moved into the care home, she was always happy to have people visit her and look through a book or hymnal together, she was just never clear with who exactly she was talking. If caught on a non-sleepy day, she enjoyed going outside to look at the flowers, making faces at the staff, or throwing things across the room. A lot of wrapping paper got thrown around the care home over various Christmas' and we always encouraged it as much as possible. Thankfully, she never developed the agitation, aggression, or delusions that sometimes comes with dementia which was a blessing to her and to everyone else who had to watch her mental health decline.

Now that I think of it, there was one moment of delusion where she thought a stuffed cat we gave her was real and had died so she put it outside her apartment. But that is probably because the thing did actually look much like a creepy dead cat. I thought it was terrifying from the beginning. Poor Grammy. The idea was that it might work as a cat replacement for the cat she had to give up when she moved into the apartment. It ended up at our house shortly after that incident much like the actual cat. The real cat got relocated out to the barn soon after it peed all over our house while I believe the dead cat currently lives at my aunts as it has occasionally haunted the family at various camping events.

The memories I have of Grammy as a child was someone who loved playing games with us; Scrabble, Crokinole, and Parcheesi were always the favorites and of which she would always crush us. We would spend afternoons running around her backyard, playing with the cat, climbing the apple tree, and eating all the gooseberries while she cooked us hashbrowns and delicious desserts. She loved birds and if there was a interesting bird at the feeder, we would all look it up in her bird book and try to figure out the exact species.

She would always spend a few days around Christmas at our house joining in the chaos that is a Watson family Christmas. She always joined in the stocking filling fun and was never hesitant to learn the games we would play Christmas afternoon like Scattergories or Four-on-the-couch. While they were clearly not the best game options for someone with early dementia, she always gave it a valiant effort. Eventually she became unable to first spend the night and eventually attend dinner altogether. The first Christmas she was unable to leave the care home was hard on everyone, except her as she always seemed very happy at the home.

Grammy lived much longer than anyone could have ever predicted when she developed dementia. She beat every statistic on life expectancy and expectations that come with such a diagnosis. While the dementia took away a lot of her abilities, she was still smiling, laughing, and eating sweets until the end. I don't think anyone could hope for more than the end of life than that.

I'll end with possibly one of my favourite quotes about death, although I have quite a few of them: "The people you love become ghosts inside of you and like this you keep them alive." 

Rest peacefully Grammy. We love you.

Back to physio, very slowly.

It was my first day of what I think will become my new routine of: getting up early, driving to the hospital (Isaiah drives, I'm not allowed yet), paying a ridiculous amount for parking, being stabbed for my precious blood, scarfing down some food, taking my medication, suffering through physio, driving home, and collapsing on the couch for the rest of the afternoon.

I was fairly tired by the time we got home but happy that I survived physio. I had gone on Friday and it was like a shock to my system. The tiny amount of stamina and muscle that I had built up post-surgery seemed to all disappear after the seizures and the last two weeks in the hospital. How does the body lose muscle mass so quickly but yet take forever to build?

I felt slightly better today but was still really tired at the end. And I didn't even do the full 15 minutes on the bike and walked super slow on the treadmill. I don't know if it's my body still getting use to the new medication or if I just need to build more muscle but I just feel a general exhaustion a lot of the time which is worse when I'm trying to push myself. My 10 "sit to stands" made me feel as though I was going to fall over and that is literally just standing up from a chair 10 times. It shouldn't be that hard. I seem to have left my leg muscles in the hospital bed during the last two months.

I guess I had this super romantic idea that when I was post-transplant the physiotherapists would have to be trying to get me to not push myself as hard for fear of overdoing it. If only. Ah, the delusions I had on how post-transplant recovery was going to go. While I tried really hard not to imagine the post-transplant world in fear of building it up too much in my head only to be later disappointed, I did see other people post-transplant at physio and was encouraged by how much progress they always seemed to make. But, of course, even for the little that I did expect, nothing has gone as I would have ever imagined.

It is hard when I see people who have had their transplant a month ago and are already killing it back at physio. I have to keep reminding myself that they don't have CF and they probably weren't as sick as me going into surgery or hadn't been as sick as long and most likely didn't have all the complications I had. I have come up with a million reasons why other people are doing so well at physio when I seem unable to progress past a three pound weight.

I know, I know, it will come with time, and it's still early, and I need to do everything at my own pace, and I need to be more patient, and I need to stop comparing myself to the other people who don't have giant wounds in their incisions or who didn't spend two months in the hospital. I've heard it all and I do keep reminding myself of all of those things. I know rationally that this is only the first step of a long recovery process and that at some point I'll be able to look back on this and say "wow, that sucked, I'm glad I've progressed from there." But just like a whinny child, I want to be at that point nowwwwww.

Okay, I'll stop complaining about my lack of energy. I'm not sure why it feels so different than when I was pre-transplant. It's not as though I had a super amount of energy and could do much then. But it does feel different somehow. Maybe it's because previously I was use to it being my lungs that were my limiting factor in how much I could do and it just feels different now that it's my legs? Maybe it's because I feel like I should be doing more whereas before I was okay with not being as capable as I knew there wasn't any room for physical improvement? Or maybe it is just because I've lost a bunch of weight and muscle and am actually less physically capable than I was pre-transplant despite the fact that I can breath comfortable while in this current state.

Whatever the reason, I'm very happy to be returning to physio on a regular basis even though I'm sure I will constantly complain about it. It really is the only chance I have to coax my muscles out from hiding. It's also nice to be back into a semi-familiar routine even though I'm still waiting for my movie montage part to happen that always skips over any the long tedious painful process.

Happy belated anniversary, Isaiah!

I made it 24 hours without going to the hospital. Yay! I literally spent all of yesterday watching TV and started knitting the thumbs on the pair of mittens I made in Nov. It was a perfect relaxing day. Not that I've done much more today, it was a day of chatting with family, a long soak in the tub, and generally being thankful that there is no continual beeping in the apartment. I have never appreciated silence as much as I do right now.

I realized today that Isaiah and I missed our anniversary on the 1st. We 100% forgot all about it. We've never been big on celebrating anyway but usually I at least make a card or wish him a happy anniversary. I guess with everything happening, it slipped my mind. I felt like the worst partner ever once I remembered. Oops.

Isaiah has been amazing throughout this entire transplant process. He is so chill when anything happens and never seems to get flustered when I rant or burst into tears. He has shown up at the hospital every day with clothes, food, and games; picked up and sorted through all my meds; ran all the household errands; and basically kept everything running while I was in the hospital. I honestly don't know how I would have gotten through this without him. Sure, I came home to a somewhat messy apartment and the Christmas decorations are still up, but it's not as though I expected him to return from being at the hospital all day to clean the apartment. My expectations are not that high.

While I don't know how I would be surviving the post-transplant world without Isaiah, it is still weird to have a partner also as a caregiver. It creates a weird relationship dynamic when one person has to rely so much on the other. It is hard for both people as what was once a egalitarian relationship becomes a caregiver-dependent relationship.

I'm trying to do more stuff for myself but when I struggle to find the energy to put on pants in the morning, I'm unlikely to be helping cook supper anytime soon. I do want to help and feel as though I should be doing more but don't seem to have the motivation.

I think part of the problem is the fact that I've become so use to Isaiah doing everything for me that I've become reliant on him instead of trying the task myself. And I should be doing myself so that I will get stronger and therefore able to do more things. It is just easier, of course, if he does it all for me. And it's not as though Isaiah is harassing me to help clean the apartment, he just seems to think that I should be able to get my own water from the kitchen at this point. I totally am, I'm just lazy when I have the option.

There is such a fine line between Isaiah being supportive and being an enabler of my attempt to do as little as possible. Generally, he does a really good job figuring out where to push me and where to back off which the logical part of me appreciates even though the tired part of me sometimes, okay often, whines about it.

I'm sure most couples have this experience at one point when someone gets the flu or food poisoning. One person ends up doing more of the household tasks while the other sits on the couch and feels bad for not being able to help out. It's like that, only for months on end with no real end in sight. It's hard. So with all our weird relationship stuff, we should probably do some normal relationship things like celebrate our anniversary now that we've actually remembered that it happened.

Home!

They let me go! Yay!!! After reviewing my blood work and making me promise to return on Monday morning, the doctors decided there wasn't much else they could do for me in hospital. I was given all my new medications with information about all the possible scary side effects, had my IV pulled, and was finally set free.

The problem that the doctors didn't like was that my new anti-rejection levels remain low despite a increase of the dosage. At the same, they are concerned that if they pump me full of the medication too fast then I'll have more seizures. It's a balancing act between getting the levels up to the appropriate amounts and making sure my body doesn't go into shock. They finally decided though that they can monitor everything as an outpatient so now I'll be going in for blood work three times a week to have my levels checked.

The other news upon discharge is that the wound care person thinks that I'll only need the vac machine and dressing for another week. Hurray! While the home machine is way more portable than the one I had in hospital, it would still be amazing to not be connected to anything anymore. It's really annoying to carry it around with me whenever I move around the apartment.

This doesn't mean that my wound has finished healing though. It's still fairly large, it is just becoming too shallow for the foam to fit in appropriately. This means there would be a risk that the foam could start irritating the healthy skin around the wound which would set back the healing process. So in a week I should be switched to a conventional dressing which will be way more convenient. I appreciate that the vac machine has super healing speed but it's super uncomfortable.

Isaiah and I have been celebrating my return by watching TV and generally doing as little as possible. I hope this time I can last longer than three days before being readmitted.

The home vac machine that literally never leaves my side.

Still in hospital

I hope everyone is staying warm and dry in the Maritimes! There has been no movement on my front. I'm still hanging out at the hospital. They are talking like I should be able to go home sometime this week but every time they say I should be good to go tomorrow, something seems to come up that keeps me here. Currently, it is my low anti-rejection levels that are keeping me here. They want to make sure everything is at the right level before sending me home.

I have yet to return to physio so that will be my next step this week. I feel ready to walk slowly on a treadmill even though my legs are tired walking around the hallway. These two weeks have really set me back physically, I feel as though any muscle I had built up has regressed. It's super frustrating but I'm not really sure what I can do about it other than continue to go for little walks around the unit.

I really thought I would be further along in my recovery process by this point post-transplant. I know I have to stop comparing myself to other people but it's so depressing to still be at the 'barely showering' stage at this point. I get tired doing the simplest things and it is discouraging to no end but there is nothing else I can really do except keep trying to get stronger despite all the setbacks.

Happy Feb!

Happy February!

My roommate is indeed quieter than my last one. No screaming at 3am which is wonderful and means that I've been able to sleep pretty well. The only noise comes from the nurses station and that can't really be helped. Nurses are going to be noisy on shift change no matter how much I telepathically tell them to quiet down. 

I must say I'm getting really sick of the hospital food. I know I said previously that it wasn't too bad, and it's not, but there is definitely a bi-weekly rotation that the cafeteria is on. I'm not sure how many more meals of mashed potatoes and stringy roast beef or overcooked pasta I can manage. The options at the food court get better and better every day.

I think I'm just ready to go home. My blood pressure has come down thanks to a certain medication so I feel prepared to be set free in the real world. I just need to get the doctors to agree with me. I would like them to stop poking me for blood and IVs as my arms are both one giant bruise at this point. The fact that I'm on blood thinners too doesn't help with the bruising. They've taken blood from all the regular sports that they are now getting creative and using random locations on my arms for IVs which for some reason hurt worse than the regular sports.

I need a few solid weeks without being stabbed by any needles to recover. I realize that isn't going to happen for awhile seeing as they need to constantly check my anti-rejection levels but a girl can dream.