From Michelle!

Well I guess I’m still a brat and I’ve still got my sass. Hopefully I always will. I discharged myself from VGH last night and caught a cab home at 4 in the morning. I gave my mom quite a fright as rang the doorbell and banged on the front door. She knew I’d been trying to leave for the past 8 hours. She chuckled at my tenacity.

Well, in all fairness, I didn’t mean to end up in the hospital again. What had started out as a quick call to the transplant coordinator about fever and pain was turning into another admission to hospital. I was going to be admitted for 7 to 10 days and maybe until my transplant. At first I tried to be mature but I just couldn’t be away from my family again so soon. We had just recovered from the last round. After 4 meetings with the docs they let me sign a waiver and leave.

I knew I stood to be scolded but I couldn’t help smiling as I whizzed home in the black top cab. There was not a car in sight and I opened the window to let the freezing cold air of freedom hit me in the face.

I navigate these waters carefully knowing that VGH is the means to my ultimate salvation from this treachery. After a chest x-ray, ultrasound and another CT scan the news just keeps getting worse. The 2 major veins between the liver and the spleen are blocked, the blood is flowing abnormally throughout my body which is affecting my heart. I have almost no white blood cells left and there is blood pooling in my intestines causing severe pain and fever (the reason I went to the hospital in the first place). Oh yea, and I have diverticulitis from all the medications.

But… my liver just keeps going! It’s shrinking in size because of all the dead tissue but the liver function tests are NORMAL. The aftermath of it’s refusal to fail is overwhelming the rest of my organs and the rest of my internals. My liver knows it can’t stop now. We’re too close to the finish line. I elect my little champion liver to the hall of fame for bravery, sportsmanship and perseverance. What a trooper!!!! I will miss it’s courage but will happily surrender it to the text books and the labs that can’t wait to see what it’s made of.

What an interesting thing it is to be waiting for a liver transplant. My husband and I marvel at the amount of times we are asked, “When is your surgery?” Waiting for a transplant is unlike anything else I can think of. You depend on someone else's demise as your salvation. In my case, it must be someone young and healthy. So, in other words, I am waiting for a tragedy. And, thankfully tragedy is not scheduled. To pray for such a thing seems grotesquely inappropriate. But, death is inevitable. 140,000 people die of traumatic causes every day. I don’t know whether that’s in BC or Canada wide but either way that’s a lot of people. I can only hope that one of those people is a donor and one of those donors is a match for me. I pray that their passing is painless and that they are somehow ready to go. I will treasure the gift of their life forever. I will make the most of every day in honour of their life. I will tell my son about their sacrifice and what it meant for us. I will tell him about everything our friends and family have done to get us through this. I will work passionately at my job, I will exercise like I’ve never exercised before, I will enjoy sleeping again when everyone else is and I will savour every mouthful of food without pain. I will sing, go to school, dance and give back gratefully. I pray I am given the chance to make good on these promises. I pray I am given a chance to live.

If for some reason I can’t hold out for a cadaver liver, my dear friend (who was also my maid of honor in my wedding) has offered to be my live liver donor. This is a serious surgery for her and for me. The transplant surgeons don’t favour it because of my age. I would receive the top lobe of her liver which she would grow back. I would grow a liver to full size but would have only ½ of the blood vessels. This would mean a much longer recovery time and the liver would not last as long. I would require another transplant in approximately 10 years. My friend has not completed the assessment stage but so far she is a match. She has offered to drop everything and save my life. She will endure a lot of pain and have to take 3 months off work. And of course, there is always the risk of complication. The good news is, no one has ever died or become seriously ill as a result of being a live donor. When she heard about this option she immediately volunteered herself without hesitation. I can honestly say I would have done the same for her. We have envisioned sharing junk mags and wearing matching PJ’s while we discuss the meaning of life on pain meds in side by side beds. I can honestly say there would never be a way to truly repay such a gesture. I am truly blessed to have such true friends. Thank you Miss M. I love you.

My love and gratitude to all of you who pray, love, contribute, send cards or just think about us. Be safe and love life.

Michelle

The Waiting Game

Things are a bit tenuous as to what is going on, what can be done, etc. Michelle had a lot of testing last night, then begged her way into being discharged at 4am this morning, crazy girl! She is under strict orders to return to hospital if she spikes a fever. Her white blood cells are very low, therefore she is at high risk for developing infection. The transplant team and her liver specialist will all review her test results from this recent hospital visit and move forward from there. Oh how does she cope with all this waiting???
Michelle had a great idea to do a post regarding the transplant wait, live donor versus non-live donor, etc. I hope she feels well enough to do this soon, as she will explain it way better than I ever could!
Ticket sales for our event are taking off! We got our final 21 tickets from the venue today and I think they will go quickly! I'm really hoping this will be a super fun event to celebrate Michelle, and for the community to pull together to help one of our own. Everyone is so supportive of our group's efforts, and we are all so appreciative of that : )
Thank You All!
Tracey

Round Two

Seems Michelle didn't let on to me that her fever has actually been for 5 days! She was directed to go to hospital this morning, to try and figure out this pain and fever. She is still there this evening with no answers yet. She is trying to get herself home, but the staff have so far decided otherwise. She is doing okay, with her mama at her side.
Tracey

Always In My Thoughts

The pain seems to have gotten more intense again, and Michelle developed a fever last night that has persisted through today. My stomach is in knots for her. Is this infection? Is it the natural course of liver disease?

Please know we are all sending positive, healing energy your way dear friend.
Love,
Tracey

Quest For Sushi

A few good days, a few...less good days. Michelle had a couple of days of energy, only to be followed by days of increased pain and nausea. We had big plans today, well as much as two moms with no car can muster. Unfortunately she ended up having nausea, and pain that made her have to stop and focus her way through it. We went for a short walk with our kiddies. I offered to pull her home in the wagon, but she politely turned me down. There was no way we were going to make it for the sushi we were both craving. My dear husband came to our rescue and made an emergency avocado roll delivery(one of the few things Michelle's tummy can tolerate). My husband is a man who is not one to comment on the status of others often, but he said to me after we left today how tired he thought Michelle looked. I am sad to see her looking so thin and sallow(but still beautiful of course!). I truly am amazed by this woman, her strength and courage are such a blessing.
Tracey

A Note From Michelle!

It is so good to be home. It was quite a life changing experience. I left the hospital because they said they couldn’t fix me. I was just getting worse in there. I’m a zebra, a complicated puzzle, a case of unsolvable math. Just a few of the analogies I heard while lying near the bathroom with half a curtain in the palliative ward. The nurses lifted a patient who had been lying motionless for 3 days to his final resting place as the family wailed. I couldn’t hear their words as it was spoken in a foreign tongue but I was pierced by its honesty. This man would be forever missed. His loss would tear a hole through his family’s soul. They surrounded him. Demanded a high tech x-ray so they could confirm nothing was moving before they let him be. My heart ached for them. I never want my friends and family to feel that way. Ever.

I knew I had to leave too. Get out of dodge as they say. But I wasn’t going in a body lift the way the old man did. As my husband lifted me to standing and lowered me into the wheelchair he finagled for me- my specialist called, "Go immediately to the transplant clinic. They need to see you." You don’t say no to Dr. E.

This meant going and waiting in a giant waiting room full of liver hopefuls for 4 hours to see one of the doctors. My friend, and live liver donor walked through the door with a handful of tulips and mother in tow. They brought freshness, love and a French braid to the equation. They found laughter amongst the bloated bellies, snoring patients, hurried doctors and yes, even me- gray, skinny and lying limply over anything that would support my weight. They caressed me back to human and I was finally assessed. My fears were confirmed. I was bad, needed to get strong to even survive the surgery. It was time to fight again. This time it has come too close. I could smell the end. By my side through the hospital visit and every moment of the transplant ordeal was my dear friend H. She seems to absorb the pain and feel the fight right along with me. Some friends bring strength, some bring a shoulder to cry on and some make you feel stronger as they live it WITH you. She will take me when I shine and she’ll take me when I’m shredded to bits. There is never a demand to be anything but the way I am. Her courage, her love and her constant diligence is a gift to which I am forever grateful.

My friend walked me down to the street and my husband gathered me into the car. Another friend followed close behind with an avocado and the cell phone I had left behind.

On the way home, the magnitude of the struggle and going home to face the sweet innocence of my baby boy overwhelmed me and I was suddenly engulfed in a tidal wave of sobs. I couldn’t stop my lungs from heaving and the groans of agony from escaping my lips. I wretched as my husband drove with one steady hand on the wheel and the other one firmly holding my leg. Even then I marveled at his strength. It takes a very special kind of person to endure this and continue to BE THERE in such a physical and entire way. With his silence I calmed and the crying stopped.

All of a sudden the lights in my eyes went dim and I was rising above my body. I looked down at my hands and moved them so I would know they were really mine. I was able to tell Jarvie a few words. I had him stop the car. I dove out to the ground and crawled to the edge of the land before it landed in the river. I dug my hands into the dirt so that I would remain attached to the earth. I didn’t want to let go. He brought me home and fed me spoonfuls of peanut butter in the driveway, carried me upstairs and washed the hospital off my body.

My son came in and nervously opened drawers and got me into my pajamas. I was barely holding it together. My husband left to get some prescriptions filled. It happened again. We were alone. I couldn’t hang on and my vision was going while my body started to convulse. I called for the nanny who was standing right behind me. She called my dear friend and author of this blog who came over within minutes.

With the help of my husband making faces, my friend who took my pulse and then asked me meaningless questions and held my eye in her contact, and a call to the doctor I came out of it. I spent the next 2 days with moments of rising so I would fixate on an object that was moving to keep me down. With food, water and the warmth of my family around me I started to come around. Then... the stomach flu. Say no more. Now... 18lbs lighter I am bright, alive and ready to thrive. I have learned a valuable lesson. I will never again take for granted the beating of my heart, the thoughts in my head, the eyeballs that see, the nose that breaths in and out for me. The hands that move to make me know they are mine. The birthday parties, the dinners, the walks, the ducks, the things I laugh at, the friends that phone and those that don’t. Thanks for every word I can think or type. Thank you for every breath. Thank you for every day, for each moment. I am ready to stay positive, go forward and fight. FULL OF BEANS!

Thank you for all your support and love. I am made stronger by its force.

Me and my guy celebrated his real birthday with an outing that included the purchase of a brand new potty complete with toilet paper holder and a night of giggles, playing and silliness. Tonight seems to have mended our broken spirits. Thanks gramma and nanny for making it possible.

Love,
Michelle

A Beanful Day!

Michelle reports a day full of beans today(translation: feeling good, lots of energy!). She even made it out of the house to run some errands with Nanny and Tater Tot in tow. And I think she had her first small meal without the agonizing pain she has been experiencing of late! Big improvement! Jarvie has really taken on the roll of "pharmacist" and is doing a great job helping Michelle with her prescriptions.
There was a party at the Way house yesterday for Little Man's 2nd birthday! The Nanny co-hosted and did a fabulous job with helping out, cleaning up, and entertaining children. It was great for Michelle to be able to relax, visit with guests, and give Tater her full attention. I don't think they could have pulled the party off yesterday without the Nanny. Michelle looked good, and did a great job with the party planning.
Here's to more beanful days my dear!
And thank you to all who continue to offer support : )
Tracey