I’ve been so caught up with life lately that I haven’t made time to update anyone. I was given a lovely gift of a new macbook for Christmas which helped push me back into this blog. While downloading some office programs and checking my emails from my new computer tonight I received an email from WordPress and took that as the final sign to sit down and get after this. (I still have no idea what the email even entailed)
This time last year when we were celebrating Christmas, Jay was very ill. We weren’t entirely sure what was wrong at the time and would have to wait until after New Years before we learned of CKD. He was very pale and sort of yellowish in color due to the toxic blood running through his veins. I remember telling him,”there’s something wrong with you and I don’t know how to fix it”. We were so concerned that he was a diabetic, my friends father had just passed away due to cancer and I was trying to prevent both illnesses. Little did we know, that it was neither culprit and there was nothing we could do to stop it on our own.
Our Christmas this year was much quieter. It was just us 3 humans and one little dog. Pyper was pretty excited with her presents and eating smarties for breakfast and most of our day was consumed with watching her every move. For the first time in 29 years I didn’t care much about the presents for myself. I was so content with spending the day with my family and consuming some well prepared food. How lucky I was to have everything near and dear to me on Christmas day. For us, I believe Christmas came 4 months earlier than usual. Our Christmas commenced on August 14, when Jay received his new kidney and his second chance at life. I got to keep my best friend and Pyper got to keep her dad. No store bought gift will ever amount to that.
I have been coaching 5 days/week and Jay has been spending most of the day with Pyper. Being able to spend all day at home with your dad for many months is a privilege I can’t say I had as a child. Pyper learns so much from her Dad each day and I only hope she will inherit his brains (possibly his hair as well). I enjoy every evening at the arena. It is not just my job but my outlet and many times, my inspiration. Earning a living by doing what you love is an incredible thing and it is my love for the sport as well as some inspiring pupils, that keep me coming back each year. The Shaz (our nickname for Jay’s doctor) has given him the go ahead to return to work and he will do so in the New Year. The dosage of anti-rejection medication has decreased significantly since August but the medication is a permanent fixture in Jay’s daily routine. Each time the alarm goes off, Pyper reminds her Dad to take his pills. For the most part Train feels pretty fabulous. Some days he doesn’t feel good….just like the rest of us. There seems to be a few differences in his fine tunings these days. Most people that have ever had a serious injury, illness and/or major surgery would understand that you feel different, just not the same as you used to. But that is ok, you just continue moving forward, hoping to find the new “normal”.
The beard has been shaved and his contacts have been purchased – I guess that about makes Jay fit for duty. I will continue to coach until March or April, whenever our season may end. As for what happens after that, I unfortunately can’t tell you. It’s hard for me to plan too far ahead these days for you never know when your life might change in an instant.
It’s the middle of the night and you wake up to your partners phone buzzing around, he misses the call and you almost fall back to sleep when the damn thing starts buzzing around again. I have no idea what time it is and I’m extremely annoyed at the drunk guy on the other end that feels the need to tell us a story in the wee hours of the morning on Thursday, August 13. Jay answers and the voice on the other end sounds similar to that of a telemarketer. I try to roll over as I hear Jay say, “Is it the one?” Then I shoot straight up, I’m awake now and this mysterious voice has both of our attention. This “drunk” has called at 3:00 am to tell us that there is a kidney for Jay. Jay hangs up the phone and tells me that we need to be in Edmonton for 8:00 am. Very few other words are spoken, I have no idea what to do with myself and I attempt to catch some more sleep before we have to leave in a few hours. I’m trying not to weep as I’m wondering if this will be the real deal or just a cold call. We’ve never received one of these calls and I’m trying not to get over excited. They say you should have a bag packed and ready to go so that you’re prepared for “the call”. The bag wasn’t packed and we weren’t prepared for that call. We gather our things, wake Pyper from her slumber and pack into the 4Runner. Again, conversation is minimal all I can focus on is choking back the tears that are flooding my eyes.
We arrive at the hospital, head to admitting as directed and they send us up to 3G2. The Inpatient Transplant Unit and Jay’s home for the following 7 days. There is no bed available but fortunately a lounge area where we can pace around and impatiently wait for surgery. They draw several vials of Jay’s blood to run a cross match and whatever other tests are required prior to receiving a transplant. They may have told us what tests were being conducted but I was far too spaced out to absorb much information at that point. We meet in a private room with 2 members of the transplant team. They proceed to go over the procedure, surgery details, recovery and whatever other information is required in that conversation with the recipient. Both doctors are quite positive (except the big guy that could use a lesson in people skills) and seem very pleased with the kidney that Jay will receive. “A strong, healthy kidney,” is how they repeatedly described it. The transplant team seem very excited about the upcoming surgery. I guess I would be excited if I had a hand in giving someone a second chance at life. Through these two doctors yammering on all I hear is the risks and my mind is overtaken with thoughts of fear. By 6:00 or 7:00 that evening we’re exhausted, tense and agitated. I take our Pyper home and decide to wait there for the surgery call. I’m annoyed until I realize that I am most likely waiting on a family to say goodbye to their loved one and ultimately waiting for someone to perish so that my daughters father can have their kidney.
Surgery was “set” for 7:00 am Friday, August 14. I left Pyper behind as my mind was far too absent to even parent. Surgery was delayed as they often are but I had more time to spend with Jay before he went under the knife. Mostly I stared at him, studying every inch of his body. His face, his hands and his skinny little renal ankles. I got right into his hospital bed and cuddled him for as long as he let me. The National Championships were underway in Ontario and provided a much needed pre surgery distraction. Jay’s blood pressure was elevating as his team scored 17 runs in the top of the 7th inning. I suppose the nurses believed we were crazy as we watched little squares run around on the game changer app. At 12:30 the porters came to take Jay to surgery. I was fortunate enough to chat with a nurse friend of mine as she was coming out of a surgery. She told me that Dr. Todd was a great surgeon. Her smile & confidence helped ease my anxiety as I waited to send this beardless man off into the hands of the butchers for 3-5 hours. “Any questions?” They asked. “Yeah, are you going to update me on the status?” was my only question. “No, but we will call you when he is out of surgery,” they replied. Not the answer I was looking for but what was I to do.
My friend Sarah came to the hospital soon after Jay went into surgery. We went to the healing garden located on the 4th floor of the U, sipped on teas and tried to talk about anything other than what was going on. Thank you for the distraction my dear friend, I am forever grateful. As 4 hours passed my brain started to remember what was actually going on and I needed to get back up to the 3rd floor and investigate. He wasn’t in his room and no one had called yet. I went across the hall to another unit and sat in a rocking chair that I positioned perfectly so that I could see the entrance to 3G2. I’m still surprised the chair didn’t collapse underneath me as rocked manically and I’m positive I scared the geriatrics that passed me by. Sometime after 6:00 I saw the porters rolling a bed down the hall and I flew out of the rocking chair. It was him, he was out and he was ok! My entire body was alleviated of all stress at that point. There were no tears, only smiles. Jay was hooked up with morphine and flying above the rest of us while providing slight comic relief. The Oilmen were playing again and we sat around the phone staring at the squares moving around. The following day the Oilmen went on to win the National title. Jay threw up a quick fist pump and said, “It’s over, they did it!” Normally it would have been followed up with a Woooooooo but he wasn’t quite feeling his normal self and wasn’t willing to blow a couple staples. Within a few minutes of the victory Jay’s phone was buzzing again – it was Bubba this time. “On 2,” Bubba said. “JAY,” you could hear the whole team shout. Second best phone call that week! Bubs – I hope you’ve recovered from the dong picture.
Jay received a kidney from an 18 year old girl and I am forever grateful to her for choosing to be a donor. I am also grateful that her family upheld her wishes. I will never know this young woman and I will probably never know her family but I will hold them all close to my heart. The kidney started working instantly! Jay’s CVC that was used for dialysis has been removed and only a scar remains there. There is a large incision across his front abdomen that is healing well, staples will be removed in time and only a scar will be left as a reminder. Jay wakes up to a plate full of pills (21 to be exact) as time goes on these doses will decrease. Blood tests are run 3 times/week to watch for rejection and adjust medication. He is consuming over 2L of water each day which is completely opposite of the dialysis regimen. Sugar is consumed with caution as some of the medication increases Jay’s chance of developing diabetes at this time. Jay still suffers from high blood pressure and must continue to watch his salt intake. There is a 50% chance that the disease (IGA Nephropathy) will resurface in the new kidney and a 10% chance he will lose the kidney because of it. These next 3 months are crucial and so our newest adventure has begun. What happened nine days ago is nothing short of amazing and I am still in complete awe that Jay was able to receive a kidney 7 months exactly after he started dialysis.
I tried not to turn the greatest story I’ve ever told into a tearjerker.
Everybody’s got a story that will break your heart.
Unfortunately my blog doesn’t seem to be a priority lately but I’m making an attempt to get back into the swing of things. Thank you to those of you that have been complimenting my writing. The encouragement certainly drives me to sit down at my laptop.
Soooo where are we at? That’s a common question that most people have these days. It’s hard to give a definite answer to the question. We know where we are as far as the recipient side goes. Due to confidentiality we are never really sure where the donor side stands. Jay spoke with his work up coordinator this past week and he is listed on the cadaveric donor list. The good news about the cadaveric list is that there is not a long list of recipients with Jay’s blood type. As far as the living donor side goes, there is another 2-3 months to wait which is pretty good news as well – Approximately 8 months from diagnosis to potential transplantation.
In preparation for the transplant Jay has received immunizations that cannot be administered after he receives a new kidney. So for you anti-vaccinators, if you’re ever in need of a transplant you may be forced to change your views and follow the program rules by allowing the necessary shots to be administered. If you don’t comply – you simply don’t get a transplant. Jay underwent a dental evaluation to rule out any infection sources that may be in his mouth. One cavity after not seeing a dentist for over 10 years wasn’t so bad. He had an echocardiogram and his ticker appears to be in good health and of course there were more blood tests to rule out any viruses.
I’ve basically been grasping at this thin shard of light at the end of the tunnel for some time but I do actually feel that the program is behind Jay. Doctors and nurses of the renal program have stated on numerous occasions that he is the ideal candidate. Jay has been a model patient – quit smoking as soon as he was admitted to the hospital, he doesn’t consume alcohol (one on occasion maybe) and he follows a fairly strict diet. Despite trying to follow all the rules Jay hasn’t been dialyzing well. No real cause for alarm but his runs have been extended by 30 min each visit, causing more inconvenience than anything. The patient’s goal is always to get in and out as quickly as possible but goals don’t always align with reality. I have been fortunate enough to not experience dialysis treatment myself but I can’t begin to tell you how awful it is to watch someone you love deal with the side effects of this unforgiving treatment. My Grandmother was diagnosed with stage 4 lung cancer and was treated with chemotherapy to prolong life. I never sat with her through a treatment but I witnessed the side effects deteriorate her body and her mind. I watched disease & treatment rob my family of a courageous woman that will never be replaced. I won’t claim to know everything about kidney disease, dialysis, cancer or chemotherapy nor will I attempt to compare the 2 diseases & their treatments but chances are you have witnessed someone undergo cancer treatments rather than treatment for kidney disease. Either way I think both scenarios are best described as “dying to live”. I’m not prepared to allow kidney disease & dialysis to steal my daughters father or the better half of myself, not this time.
Transplant is our best option, our wish, our hope & biggest chance for restored life & I feel like we are almost there.
The joke around our house is that Jay has become an “experiment” since becoming a part of the Northern Alberta Renal Program. He must abide by the programs rules basically to ensure that he gets a kidney as soon as possible and in the meantime they conduct treatment as they see fit. We like to look at the situation as such that he is advancing medical research in the renal program? Maybe he is, maybe he isn’t but we also like to have fun with the “experimenting”. Jay had the nurses take off extra fluid, beyond his target weight one day, just to see how he would feel. I also don’t think he’s asked to do this since he tried it the first time. A while ago I asked him if I could conduct an experiment. Then I explained that he would be the test subject. So this week he is eating every meal that I prepare for him and then we’ll gauge how effective my diet is based on how he feels after his dialysis runs. Monday was a little tough on Jay. It was Easter weekend and he partied pretty hard. Cake, cookies, ham, perogies & even a Schweppes! That’s what it means to party in Jay’s world these days. Last night I made spaghetti squash beef chow mein because Jay likes chow mein. I’m not much of a fan but I really enjoyed this meal. The picture doesn’t make it seem that appealing but for today, just appreciate the fact that there is a picture!
Spaghetti Squash Beef Chow Mein
1 large spaghetti squash
2 lbs stir fry beef
1/4 cup braggs all purpose liquid soy seasoning
3 garlic cloves
2 tablespoons coconut oil
2 teaspoons freshly grated ginger
1/4 teaspoon black pepper
2 tablespoons olive oil
1 medium onion
3 celery stalks
2 cups cole slaw mix
Cut a spaghetti squash in half length wise and scoop out seeds. Lay on lined cookie sheet and drizzle sparingly with olive oil & sprinkle with pepper to taste. Bake at 400 degrees for 30-40 minutes, until flesh is very tender. Once the squash is cooked, scoop out flesh with a fork and set it aside.
In a small bowl, whisk together braggs, garlic, coconut oil, ginger and black pepper.
Cook stir fry beef in a skillet on the stove top until just cooked through. This doesn’t take very long and you don’t want the beef to be too tough.
Heat olive oil in a large skillet over medium high heat. Add onion and celery & stir often. Cook until tender, about 5 minutes. Stir in cabbage until heated through, about 2minutes.
Stir in spaghetti squash, stir fry beef & braggs mixture until well combined – about 3 minutes.
I have never been a fan of Shepherd’s Pie. My mother never made this dish when I was growing up and either I never learned to like it or it just doesn’t react positively with my taste buds. Jay on the other hand, loves this stuff. I made a traditional Shepherd’s Pie a couple years ago and sure enough…I didn’t like it. In an attempt to start eating healthier I made a ground turkey and yam Shepherds Pie recipe and to my surprise it was delicious. Potatoes, sweet potatoes & yams contain high levels of potassium and so I decided to substitute the yams for mashed cauliflower. Cauliflower isn’t at the top of my favourite vegetable list but I was quite surprised at how tasty this dish actually was! Enjoy
Mashed Cauliflower Ingredients
1 head of cauliflower
1/4 cup of cheddar cheese
2 TBSP butter (unsalted)
1/4 cup of low sodium chicken broth
1 medium onion – diced
Pepper to taste
Turkey Filling Ingredients
1 lb lean ground turkey
1 tsp olive oil
1 medium onion – diced
1 celery stalk – chopped
1 parsnip – diced
2 carrots – diced
2 cloves garlic – diced ( I use a garlic press)
8 oz mushrooms – diced
1/4 cup frozen peas
1/4 cup frozen corn
1 cup low-sodium chicken broth
2 tsp low sodium, organic tomato paste
1 tsp Worcestershire sauce
1 tsp freshly chopped rosemary
Steam cauliflower until cooked and soft. Mash with cheddar cheese, butter, chicken broth & onion.
Preheat oven to 400°F.
In a large saute pan brown turkey; season with pepper. When cooked, set aside on a plate. Add olive oil to the pan, then add the onion and sauté one minute. Add the celery, parsnip, carrot and pepper to taste; cook approximately 10 – 15 minutes, until celery is soft.
Add garlic and mushrooms; sauté another 3 – 4 minutes. Add frozen corn & peas, chicken broth, tomato paste, Worcestershire sauce, rosemary, cooked turkey, and mix well. Simmer on low about 7 – 10 minutes.
Spread the meat & vegetable mixture over the bottom of a 9 X 13″ pan and top with the cauliflower mixture. Cook for 45 min or until cauliflower starts to brown slightly. Remove from oven and allow to sit & cool before serving (7 – 10 min).
This can be made ahead of time and stored in the fridge or freezer.