August 2011 – Cystic Fibrosis Sucks

How’s this for a weird story: we go to Barkerville for the day and have a look around:

Call me overly skeptical, but I call bullshit:

That includes both the “painless” tooth extraction and the low, low dental fees.

I realize that I apparently have a phobia of people in costumes:

I don’t know why, but this did not go over well and I strive to keep my distance. Shudder. When I was thinking Barkerville, I was picturing panning for gold in an unpopulated river in the middle of nowhere, but this was the closest I could find:

Votes on whether or not that’s real gold or pyrite amidst the glue on that keychain? I also found that walking stick to go with my non-existent backpack that Richard was talking about:

I was too cheap to buy it, but it made for an entertaining photo. I also took a pic of another RAD-G safety suggestion, just for shits and giggles:

Me thinks I’ll be leaving the gun behind with the walking stick and backpack and sticking with the Tomtom that Central GM in 100 Mile are providing me with tomorrow. Sorry Richard!

Now for the weird part. On our way out, I flag down this guy, who, although he is in costume is giving off an “I’m approachable” vibe. I don’t know why this is. Besides the costume, his eyes are downcast and he is heading into the village, likely to continue working. Regardless, I flag him down and say “Want a free movie?” As I pull the DVD out of the bag, his face lights up. “I know her!” he exclaims. Turns out that James of yea ol’ Barkerville was friends with Eva and was thrilled to get a copy of the DVD. So we chatted for a couple of minutes, posed for a photo, and he went back to work, happy to have a full length version of 65_RedRoses. Why, when I pick random people off the street, have two out of three of them had a connection to CF? Do I have spidey senses, is it coincidence, or it something else at play here? Whatever it was, I’ve been having some pretty cool conversations with the DVD recipients.

Off do the morning shows in Williams Lake (CFFM the Rush) and 100 Mile House (The Wolf) tomorrow, then over to Central GM in 100 Mile to pick up my wheels for the trip.

Peace.

K-Dub

The puck dropped at 8:00 this morning for the longest game ever played. For those of you who don’t know, 40 women have volunteered to play hockey for 10 days and 65 minutes straight, shattering the Guiness World record by 65 minutes. Proceeds raised will go towards helping to find a cure for Cystic Fibrosis. 10 straight days? Those broads are straight up crazy! But I love them for it.

I spoke briefly at the opening ceremonies today. For those of you who are interested, here is the full version of my talk. It helps to paint the background of the last 6 years and why I’m doing what I’m doing with this Canada trip. Warning: it is depressing. Read at own risk.

When I was 18, I met and fell in love with the love of my life. His name was Joey Whitford. He had a smile that could light up a room and a wit that was unrivaled by anyone I’ve met before or since, which would usually lead to all of the other people in the room smiling with him. He also had Cystic Fibrosis.

This meant that in addition to other teenagerly pursuits like going to parties with our friends, attending school, and dancing til the sun came up, we also spent a significant amount of time at St. Paul’s hospital in Vancouver. Joey’s stays in hospital would include IVs, needles, bloodwork, antibiotics, collapsed lungs, chest tubes, lungs clogged with mucus, procedures to remove gall stones from his liver, and pain. Lots and lots of pain. He rarely complained about it and did his best to hide it from those around him, but when it got to be too much to handle at home, he had to go into hospital and our lives were put on hold.

Outside of hospital, we strived to make our lives as normal as possible. This became increasingly difficult with time as Cystic Fibrosis ravaged Joey’s body. The first time a doctor told him he needed a lung transplant, Joey sloughed him off and continued what he had been doing for another year; working a full time job where he would come home so exhausted that he didn’t even have the energy to eat dinner before he passed out for the night and got up to do it all over again. He was skin and bone, any calories we managed to get into him were burned up by doing something that most people take for granted: breathing. Family and friends who didn’t live locally were neglected; he had no energy left over to talk on the phone, or go out to have fun anymore. Outside of work, our lives were confined to our apartment, where our friends who understood took to coming by so that they could have short visits with him if he woke up.

The following year, while at an appointment with a different doctor, one who had been in charge of Joey’s care since he himself was 18, Joey fessed up to how he had been feeling and what life was like around our house. Poor health, no energy, short of breath performing even the simplest of tasks. Exhaustion. Fear. Doom. His doctor told him that it might be time to consider being assessed for a double lung transplant. We were absolutely terrified, but knew he was right. And so it started.

We knew that if Joey was going to get his transplant, we would have to relocate to Toronto, an area with both more registered organ donors and that is willing to transplant CF patients who have Burkholders Cepacia, a superbug that Joey caught during a stay in Children’s hospital. Cepacia often makes people with CF very sick, adds complications to their treatment, and reduces your chances of having a successful transplant. But, Joey said, trying to have a transplant beat the alternative, so he started the work up. Tests at St.Paul’s, meetings with the BC transplant team, tests done again in Toronto, and meetings with the Toronto transplant team. 13 months elapsed before we were in Toronto and he was on the list.

8 months to the day he was listed, Joey received his new lungs. The operation started at dinner time on August 19^th, 2007 and finished early in the morning on August 20^th. Recovery was a struggle; he was in hospital for 2 ½ months following his surgery. We watched several other lung transplant patients have their surgeries and recover. While we were happy for them, we were also sad for ourselves; it was disheartening to see things with Joey either remain at a standstill, or get worse. Shortly after his transplant, he had to have a second surgery, his chest opened again up like a car hood, while the doctors removed fluid which had accumulated on the outside of one of his lungs. The trauma of the surgeries sent his kidneys into shock and he had to go on dialysis for 3 ½ months. We were terrified that he would then need a kidney transplant, but they recovered eventually, which we were incredibly grateful for.

After being in hospital for about a month and a half, Joey started to get discouraged. Everyone seemed to be getting better except him. While other people were working with physio to do their laps around the ward, Joey was unable to scratch his own leg. Because his kidneys had shut down, he had an extra 100 lbs. of fluid on him and his muscles were extremely weak from laying in bed while he tried to recover. I was frantic. Joey was an exceptionally positive person and seeing the light gone from his eyes was frightening for me. His family and I could not cheer him up no matter how hard we tried. He wasn’t trying to be difficult, he was just discouraged, sad, and afraid. We knew going in that transplant was a treatment, not a cure, for Cystic Fibrosis, but when it is your only hope, it’s nearly impossible not to latch onto it and see it as the solution to all of your problems. Now, instead of feeling better, Joey felt even worse than he had before and I was powerless to help. I issued a cry for help on our blog, cfsucks.com Shortly afterwards, the mail started arriving.

We received a wide variety of cards, letters, and packages, which I would truck up to the hospital every day and read with him. Each one was savored. There were sweet cards and thoughtful cards, and even one card from a friend in BC that told Joey if he didn’t get out of bed soon, he would fly to Toronto himself and stick his foot so far up his butt that his breath would smell like shoe shine! Did I mention that there were also funny cards?

After each one was opened and read, it became a feature on the cheer wall and pretty soon the room was plastered with love, good wishes, and hope. Things started to turn around. The weight came off, Joey worked vigorously with physio, and eventually he was able to come home from hospital. Months later we were able to come home for real, back to BC, to our family and friends; our lives. We were able to go back to work, go on our honeymoon (which had to be put on hold because Joey was too sick to travel before he got his lung transplant), consider buying a house, starting a family, and make plans for our future. We were able to be normal, or as close to normal as we could get.

This lasted for about a year. Then we were robbed again. This time it was his liver that was failing. About 25% of people with Cystic Fibrosis over the age of four have serious issues with liver function. 6-8% of people with CF have potentially fatal liver disease requiring liver transplantation. Joey was one of the unlucky ones.

This meant more hospital stays, more testing, more impending doom and disappointment. Our lives were on hold again. Once again, I had to leave my job to look after my husband and watch him struggle in pain while I was powerless to help, and wait. Wait and hope.

It was at this point that we reconnected with Eva Markvoort. Eva had found us via our blog when we were living in Toronto. We admired her tenacity and both her, and her family’s bravery in opening up their lives to the world while they were going through what had to have been one of the most difficult times in their lives. When we first heard about the film, 65_RedRoses, Joey and I agreed that there would be no way that we would be capable of having the added pressure of cameras and a film crew documenting the worst moments of our lives. But we were glad somebody was up to the challenge. The Brine-Markvoort family gave the world a taste of what it is like to live with CF and the highs and lows of transplant. Joey and I were incredibly grateful for that. When members of the general public are able to form a personal connection with an individual who is affected by adversity, it propels people to take action to do something about it. Eva propelled people into action and continues to do so.

Joey and Eva endured their struggles with transplant along a similar timeline. They waited for their lung transplants at the same time; Eva’s came 65 days after Joey’s. They also received devastating news around the same time; Eva was diagnosed with chronic rejection and had to be re-listed with the hopes of having a second double lung transplant. Joey was told that his liver was failing and he would soon need to be listed for liver transplant. We were devastated.

Eva’s illness progressed more quickly on the second go-around. Joey and I ached for Eva and her family. We also knew, based on our experience, that a little gesture, like a card, went a long way, so we took to mailing her one every week. Typically they were of a humorous nature, but there was a lot of realism woven in. Eva and her family understood the reality of CF, transplantation, and the mental beating that being re-listed for transplant took on an individual and their family. This is an understanding that few people have and it helped Joey and I to form a strong connection to the Brine-Markvoort family.

“You’re young, you’ll be fine”, was a phrase that Joey and I heard all too many times from other non-CF lung transplant patients we met during our stay in Toronto. They didn’t understand Cystic Fibrosis. They didn’t understand that in addition to stealing your breath, CF also affects with your digestion and hampers your body’s ability to absorb nutrients from food, which leads to a whole host of other problems. They didn’t understand that it damages your pancreas, rots your gallbladder, gives you osteoporosis, causes extremely painful bowel blockages and, in Joey’s case, destroys your liver so that your body can’t remove the toxins that build up in your system and you are slowly poisoned. Your mind becomes addled and confused, your skin becomes yellow, your bones become prominently visible through your skin, and you can’t keep food down, to name a few. Eva, her family, and other families affected by Cystic Fibrosis understand that CF doesn’t care about age. It is a merciless, cruel, and unfair disease.

Our family and friends rallied around us during our struggle with Joey’s liver. Several of them even offered to donate a portion of their own liver to Joey. Two of these friends seemed to have potential, but Joey became too sick before the donor testing was completed. He ended up receiving a liver transplant from a generous individual who had signed their donor card and whose family saw that as a result of their tragedy, they had the opportunity to help several other people by supporting their loved one’s decision to be an organ donor.

Joey survived for 9 days after his liver transplant. The medical staff told us that his wait on the list was so long that he was unable to fight off an infection her received after his transplant. In other words, if he had received his transplant earlier, he might have stood a chance. That said, neither of us had regrets about trying. 9 days might not seem like a lot of time, but his donor gave him a chance. He or she gave us hope. They gave us the opportunity to see a smile that absolutely lit up the room when the breathing tube came out and we thought everything was finally going to be okay. A smile with eyes that sparkled and danced, and a mouth stretched from ear to ear. They gave him back to me for 9 days with a clear head, so I could hear his razor sharp wit again, interpret meaning from his expressive eyebrows that could communicate to us when he couldn’t, and gave us more time when we could hold one another and say how much we loved each other. Joey’s donor and their family made sure that he didn’t die waiting on the transplant list. For that, I am eternally grateful.

Joey’s body gave out. His spirit didn’t. When we checked in with him (and we did this multiple times), to see if he still wanted to fight, or if he was too tired to go on, it was a no-brainer for him. He had too much to live for, so of course he was going to keep on fighting. When we told him that if he wanted to give up that was okay, we would support him in that decision too, he looked at us like we were crazy. He was not giving up and he maintained this attitude until his body gave up for him.

People ask me how I’m feeling these days. The answer is not a pretty one. Were I to answer honestly, this is what I’d say: I feel like someone is sitting on my chest with their hands wrapped around my neck choking me. They are ripping out my heart, waiting 5 seconds, then ripping out my heart again. I fell lost. I feel empty. I feel alone.

On February 21^st, my soul mate, husband, and best friend was stolen from me by Cystic Fibrosis. I am sick of CF killing people I care about, so I am doing something about it: traveling across Canada to raise awareness about CF and organ donation. In collaboration with the Vancouver chapter of Cystic Fibrosis Canada and Eva Markvoort’s family, I am doing a 65 Roses, 65 Cities, 65 Days tour, where I will be delivering copies of Eva’s award winning documentary to 65 different individuals in cities across the country.

I’m not sure how big of a deal this will turn out to be; it might be done quietly or with more gusto depending on what I’m capable of on any given day. Obviously, today is a gusto day. I left home in Powell River, BC on August 20th (the day Joey’s lung transplant was completed) and will be arriving back in Vancouver on October 24th (the day that Eva had her lung transplant); 65 days later. My hope is that by following my journey and increasing access to the film, people who are not otherwise directly impacted by these issues will see the human connection and help us work towards finding a cure. Those who are interested in helping can make a donation to help fight CF ( www.cysticfibrosis.ca ), register to be an organ donor and discuss their wishes with their friends and family ( www.transplant.bc.ca ), or make a contribution to help me along my travels ( www.cfsucks.com ). Any support is greatly appreciated.

When I was asked by the Vancouver chapter of Cystic Fibrosis Canada to give this talk, I was initially stumped. How could I make an audience of strangers fall in love with my Joey, a person they have never met and unfortunately will now never be able to meet, in 5-10 minutes? The answer is that I can’t. I just have to hope that by sharing a few of the rough times, people will care just a little bit more. Care enough to discuss their wishes to become an organ donor with their family; care enough to try and spare other families with CF the pain I am going through, care enough to help find a cure for Cystic Fibrosis.

By being here today, you ladies are making a difference in the fight against CF. Thank you for caring.

Here are the gals shortly after the puck dropped:

While I was at the longest game, I also had the privilege of meeting Bill and Lorraine Skelly, who are responsible for founding the relationship between Cystic Fibrosis Canada and the Kin Club. This alliance has done an immeasurable amount of good in the fight against CF. Bill and Lorraine are kind of a big deal and it was great to meet them. Here they are with Martina, the director of the Vancouver Chapter of Cystic Fibrosis Canada:

And finally, me and Martina:

With a jersey like that, one could be momentarily duped into believing that I’m sporty. Until they looked at my feet and saw the high heels. Or looked in my trunk and saw the gluten free cheesecake I am planning on scarfing down the instant I get to my Aunt’s house this morning.

Currently hunkering down in Blenz and plotting who I am going to give the next 65_RedRoses DVD to. All but one of the DVDs fit into my bag, so it must be a sign that I should give it away before me and my giant pink suitcase fly up to Quesnel this afternoon. Stay tuned for more on that front.

K-Dub