Where we are today

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.

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4 comments

  1. Colleen Vogel · May 10, 2015

    We have been following and praying and watching and waiting, I want you to know that you are never far from our thoughts and of course always always in our prayers. We have been in contact with Greg and Ella trying to gather information of blood type and qualifications for being a family donor. We are headed out to Edmonton to spend some time with Richard and Eden and the kids so we will be in touch with Greg and Ella and continue to ask more questions. Just want you to know we will try to do whatever we can , love to all!!

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  2. Jody · May 10, 2015

    Well said my girl! Kudo’s to you for your strength and unconditional love and support…I know to well what it is like to watch someone you love be on dialysis and go through not one but two transplants…
    Keep the faith and positive attitude and never forget you have a great support team ready to be at your side at anytime!

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  3. Mavis Holoiday · May 11, 2015

    Hi Kelsey, I want to introduce myself. I am Jay’s Auntie, his mom’s sister. I have much admiration for what you both are going through and want you to know that I am thinking of you both every day. My most sincere hope is that there will soon be a call for Jay telling him that he has a new kidney coming and to get to the hospital quick pronto!
    Our whole family wish Jay a great outcome from this terrible disease!!

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  4. Liz Soley · May 11, 2015

    Love it, keep ‘em coming. You have learned so much about health, eating and renal failure. I am proud of what you have accomplished, you and Jay both. It is hard to learn all of the facts and what is required to “beat” the system and get in there and fight for a kidney. Way to go both of you!!

    I watched your Grancha on dialysis and it isn’t pretty and it isn’t fair by any means. Someone who is whiny, doesn’t follow the rules, goes flat on dialysis, has no family, can sometimes get a kidney before you. Stay strong and believe that it will work and it will happen fast!! Keep that hospital bag packed and sitting by the door!!

    Love you all,

    Auntie Liz

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