wilting_seedpod

I was doing fantastically until Sunday morning, when out of nowhere I had another nausea attack. This has been happening occasionally for years, ever since I got the G-tube installed. This one started with pain in my gut during my morning bowel movement and quickly turned into full body retching into the waste basket. We didn't try to fight it for long, just used a Gravol suppository, and then we rushed to St Michael's emergency entrance. Emergency was actually really quiet and relaxed, there were no screaming drug addicts or old ladies with dementia wandering around! Having spent so much time in emerg in Victoria I had thought it was par for the course! Maybe it is, and I was just in emerg at a good time. In any case, they whisked me out of the waiting room quickly to spare the other people the sight and sound of me puking furiously, so service was exemplary.

I have an antibiotics port in my chest for easy access, but only IV therapy people are allowed to install the line (direct access to heart) there and since that was going to take a while due to sunday afternoon short staffing, we went with a quick IV in my left arm instead. The doctors and nurses were awesome and very kind. They got me started on fluids and anti nausea drugs and pretty much I just laid in emergency until I stopped retching up bile. That evening I was transferred up to the 16th floor so I didn't have to sleep on a stretcher in emergency. I think I threw up one last vicious time that evening and then had a weird night tossing and turning in bed having dreams. On Monday I spent all day in hospital with my mom. For about an hour we listened to an old lady yelling 'Nurse, nurse,' in a neighbouring room until we finally managed to harass the nurses into taking notice of her. I'm used to that kind of thing but listening to her calls was driving my mom crazy. Then that evening I was transferred to a much more cramped room on the 6th floor, in the Lung Ward.

The lung ward seems to be in an older part of St Mike's, definitely not as flash as the 16th floor GI ward. It has that old hospital linoleum, old hospital lights and equipment. It wasn't so bad, though I felt a bit claustrophobic in my small room sealed behind two big solid doors that automatically close like an airlock. At least I was able to have a mostly restful night there since it was quite dark and quiet. Unsettling dreams persist though when you are in a half unconscious state in the hospital hopped up on strange anti nausea drugs.

On Tuesday morning I was feeling much better, aside from intense hunger pangs, and when my mom came in at 11am I started munching on dry Life cereal. We looked out my window and saw a beautiful old cathedral (St Mike's I presume?) with green copper sheathed bell-towers. Pigeons swooped around and the bells tolled some pretty beautiful Christmas music. Back on Saltspring Island in British Columbia, my grandmother passed away. We knew it was coming but it is still a sad time for us. She was my last living grandparent and I loved her very much. My dad says she was lucid for a day or two before she went and asked after me and understood that I was in Toronto with my mom for the transplant. I know that my grandparents would all be proud of me for fighting as hard as I am, and I feel like the most important thing is for me to get my lungs, have some kids, and continue our family line. I can't think of anything that would make their spirits, and my parents, happier.

It's begun to snow/slush in Toronto and there is already a bit of panic about delayed flights. I can only hope and pray that Phoebe will make it here safe and on time on Saturday evening. Until then, I continue to concentrate on eating lots of calories and keeping my lungs clear as can be!

This was a huge week for my assessment process. It's been pretty exhausting for both me and my mom and I wasn't able to eat as well as I should have because of needing to fast before tests. But we've survived! Well, I'm jumping the gun a bit; in a few hours we're walking back to hospital for a CAT scan of my sinuses and chest. But after that, we have sweet freedom from tests for the weekend!

Monday: I had a bone density scan in Toronto Western hospital. It was easy; they pretty much lay you down flat and take x-rays of your hip and spine, and compare them to previous ones to track bone loss. CF patients often get osteoporosis and I'm on the edge of that. Further, the steroids you're on post-transplant tend to weaken the bones drastically as well. In any case, it's one of the things they factor in as part of the assessment process.

Afterwards we caught a free shuttle bus from Toronto Western back to General and I had blood tests (about 20 vials of different colours and sizes), peed in not one but TWO different sample containers, hocked phlegm into a third, and then got whisked into a room to have an ECG. That's the one where they attach lots of little stickers (electrodes) in a crescent around your heart, one on each arm, and one on each leg, then attach wires to the stickers and get all the info on your heart's thumptasticness. Check it out: http://en.wikipedia.org/wiki/Electrocardiography

After that I guess I was feeling off from blood loss and wanted to boogey out of the hospital, and didn't realize that I not only had an ECG that day but also an Echocardiogram, which is *not* the ECG I had just got done. I convinced my mom I had already done it and we went home for the day. So I've had to rebook the Echocardiogram for later.

Tuesday: At 8am I had a test called an RNA (MUGA) Scan. This is one where they inject some tin into your vein and then follow it up with an injection of a radioactive substance which sticks to the tin or something. In any case, this test allows them to take an ultra precise look at how much blood your heart pumps and how it flows into your lungs. On the screen the tech showed me, you could see when he pumped it into my vein, it was swept into my heart, and in about half a second suddenly pumped into my lungs, displaying them as a sort of lung-shaped spatter of sparkles with a thumping core of sparkles in the middle. Later that day we met with the dietitian, which went well considering how important it is that I gain weight, and the fact I've gained a kilo since I've got here!

Wednesday: was an information overload day. First was my six minute walk test, which is where they make you walk up and down a hallway as fast as you can for six minutes and then measure your O2 and heart rate. Piece of cake, I've done dozens of them. I walked 525 meters and then 545 meters on a second test. Then the information deluge began with the Infectious Disease consultation, which was very cool! We got some great news out of it, namely that my mycobacteria abcessis seems to be gone for the past year and a half at least; it hasn't reared its head in a single sputum sample since we tried killing it before Phoebe's first visit. So that bodes really well for my chances. They're continuing to watch my sputum though and I will be meeting with the doctor again on the 27th of January.

Then we met the transplant coordinator, who laid down all the facts of how I was being assessed and what the process was going to be like. She was very no-nonsense and went through a checklist full of things she had to talk to my mom and I about. This includes rates of mortality post transplant. It was pretty intense and my mom was a bit rattled but I feel everything went well. I feel I'm a good candidate for transplant and I am optimistic that they will recognize that as well and give me the chance. The big number that I took away was that 50% of Double Lung transplants survive for 10 years. I can think of so many things that I would like to do with 10 more years of good health!

Thursday: This was a very hard day, definitely the hardest of the week. Fatigue was already setting in from the previous few days, and then I had to fast until 3pm for an abdominal ultrasound. So that morning I hardly had anything for breakfast, and my first appointment was a Pulmonary Function test. I've done dozens of these but they are always fatiguing. You pretty much have to squeeze every last bit of air out of your lungs and into a machine over and over again so that they can get a good idea of how compromised you are. The big number they track is FEV1, and mine is sitting at 25% of normal.

The followup to this ordeal was the worst needle ever, the hated Arterial Blood Gas. This is where they stick a needle into your wrist just below the last joint of your thumb to get a sample of delicious dark red arterial blood so that they can accurately see how much CO2 you have sitting around in your blood. Unfortunately this artery is very small and surrounded by nerves because your body is smart and doesn't like being stabbed in the artery so it protests these stabbings by unleashing white-hot waves of aching pain from your fingertips to your elbow to your shoulder. Sadly, my artery kept avoiding being pierced by wiggling out of the way of the needle-tip, so the first person stabbing me gave way to a second person, who stabbed me once more and managed, miraculously, to tap in after only a short period of probing in my already screaming flesh. All I could do during this time is grit my teeth, clutch the chair with my right hand, and focus on my breathing. They got their sample but for the rest of the day my entire arm ached to the shoulder, my wrist was unusable, and I was pretty irritable until we managed to get home at about 4:30 and I was able to get some calories into me and have a nap.

Anyway, I hope you guys had more fun weeks than me! I've been getting increasingly lonely for my roommates and my other friends and my cats and my dad, but I know I'm strong enough to power through this and see the ones I love again. The main thing I am looking forward to is Phoebe's arrival in a week and hanging out with Bram and Kendell. I hope that as my schedule stabilizes around Christmas that I'll be able to maybe make some friends in town as well.

It was pouring rain yesterday morning so rather than walk the 15 minutes to Toronto General we caught a cab. It's only $6.50 or so each way, before tip, so quite feasible for when the weather is miserable. Finding the necessary waiting room on the 11th floor, we hunkered down for a half hour. Everywhere you go in the hospital there are warning signs demanding that people with swine flu symptoms alert various people, put on masks, wash hands, etc, and I counted three visible from my seat! They are all poster size and laminated and there must be hundreds of them in the hospital.

I go out of my way to not touch anything with my hands in the hospital, and use my elbows on stuff like elevator buttons, but I made an exception and leafed through two pamphlets that were sitting on a display across from me, entitled "For smokers who want to quit" and "For smokers who don't want to quit." I kind of did a double take when I saw them and was exceptionally curious whether the content of the latter pamphlet was just "FUCK YOU!" printed in big red letters, but it was what you would typically expect; various well reasoned arguments and scientific evidence of why people should quit.

Which brings me to my next point, there are so many smokers on the streets of Toronto it makes me really sad. The sidewalks and every spare bit of dirt are littered with cigarette butts, and you can see massive piles of butts piled under the subway grates. Clouds of smoke linger outside the entrances of every major building, and smokers smoke while walking in front of me, forcing me to veer aside or inhale their second hand. I have a lot of coughing fits and have had at least one scary asthma moment so I'm not bringing my puffer with me when I head out.

Anyway, the meeting with the social worker was great aside from a few awkward typical social worker moments (mostly regarding depression/suicidal impulses; something I am comfortable talking about but I have a lot of fear of saying the wrong things). In any case, it went wonderfully and then we went and met up with the anesthesiologist a half hour later.

The anesthesiologist described the mechanics of the lung transplant, which I found very cool. Apparently they will often have you cut open with your lungs ready to be removed even before the donor lungs are in the door, so that as soon as those lungs come in they are ready to do the swap. They swap out one lung at a time (worst lung goes first) by snipping the primary bronchi on one side (tucked behind the heart, which they have to nudge aside), clamping off the veins and arteries, letting the old lung deflate, and pulling it out. Then they pop in the new lung, staple it back on and re attach the pulmonary vein and artery. This whole time, the anesthesiologist is actually the one standing beside you keeping your one lung pumping and watching your blood pressure like a hawk. The surgery is ~8 hours. 1 hour prep, 3 hours each lung, 1 hour cleanup. Once I have the pager it could happen at any moment, and I'm feeling optimistic about reaching that point! One of the big questions the social worker asked was if I felt ready for it, and I absolutely do. I am so eager to have a new lease on life and be able to make up for lost time!

So to wrap things up, yesterday was an exhausting 6 hour day in hospital with just those two meetings, and I have a lot worse coming in the next week, but I know I can handle it. My only worry is getting sick before Phoebe gets here, but all I can do is do my best to stay healthy and keep my chin up.

Here's my test schedule!! Looks exciting. I've already been subjected to all these tests in the past, but the results are old enough I have to go through them again.

Wednesday November 25
1:00pm Social Worker
3:00pm Anesthesiologist

Monday November 30
9:15am Bone Density Scan
10:30am Blood tests, chest X-ray, ECG, urine, sputum, PRA level
1:45 pm Echocardiogram

Tuesday December 1
8:00am RNA (MUGA) scan
10:00am Dietician
3:00pm Physical exam

Wednesday December 2
9:00am 6-minute walk
10:15am Infectious Disease Consult
1:00pm Transplant Coordinator

Thursday December 3
11:45am PFT/ABGs
3:00pm Abdominal Ultrasound

Friday December 4
9:30am VQ Scan Quantitative Perfusion Scan
4:30pm CT thorax and CT sinus

Friday December 11
3:00pm CFGI clinic

SATURDAY DECEMBER 12
PHOEBE'S PLANE GETS HERE~ WOOP WOOP WOOP

In my quest for a lung transplant, I flew to Toronto on the 10th of November. I left the home I love in Victoria BC, with my friends and my pets and my garden, behind. It all happened very suddenly. My health plummeted after a bout with the H1N1 virus and I came very close to death. I had an amazing goodbye party and got to spend time with the people I loved most! And then suddenly, I was in Toronto.

The building we're living in is in the perfect location, it's a 10 minute walk to St Michael's hospital where the CF doctors are and it can almost all be done through malls in the case of poor weather. It's equally close to Toronto General where the Transplant Clinic is. We love our location so much we've leased it for four months.

The oxygen situation was extremely frustrating for the first few days. The portable concentrator sent with us from Victoria was constantly cutting out and breaking down to and from the plane, and then we found it would do it pretty much any time it wasn't plugged into the wall. So when we got here we tried getting a new concentrator, and got the same model but slightly newer. At first it seemed better, but then we realized it has the same exact problem. It's some design flaw where the slightest jiggles cause it to cut out and lose power. Then it refuses to turn off, and if you want to jiggle the battery yourself you have to unscrew the wheels and tip the thing on its side and *then* reset the battery and screw the wheels back on and turn it on. And then it quits again after I cross the street or get on an escalator.

I've since gotten another model which is lighter, has bigger wheels, lasts longer, and doesn't stop working at the tiniest bump! It's reduced our stress dramatically.

My appetite has been great and once we figured out the nearby places we could shop I started having 4000 calorie days! We figured out that a bacon sandwich with 5 slices of bacon and lots of mayo is pretty much 1000 calories. My mom loves how she can walk across the street and step into a mall with a drug store, walk in clinic, grocery store, and pretty much everything else. One street further is the Eaton Center where we can buy kitchen utensils and whatnot from Canadian Tire.

We met the CF team on Tuesday and they are really great! I'm so enthusiastic about working with them to gain the 20 pounds I need and get my body as fit as possible. They were very friendly and straightforward and thorough and don't seem fazed by any of my complications, whether it be the mycobacteria, the VRE, or the nausea issues. I'm feeling really optimistic for the first time in ages. I'm living the diabetic lifestyle now and checking my blood sugars 2 hours after meals with a little Accu-check device they gave me and keeping it all recorded in a book. When I see the clinic in two weeks we'll do a glucose tolerance test. They worry about my blood sugars since the H1N1 and want to assess how close I am to diabetes since it's fairly likely I could get it after transplant.

Two days ago I picked up the schedule of testing I need done for my transplant assessment, taking place over two weeks from Wednesday the 25th to December 10th or so. It will be pretty harrowing and there is a stretch of time where I will be in and out of waiting rooms every day for a week. But there is light at the end of the tunnel: Phoebe will be here from the 12th to the 22nd and we plan on having all sorts of adventures in the city together!

Lorca - Somnambule Ballad
Robert Browning - Childe Roland to the Dark Tower Came
Coleridge - Kubla Khan
Allen Ginsberg - Howl
Jessie Housty - Apparitions