"I am stronger than depression and braver than loneliness and nothing will ever exhaust me".
-Elizabeth Gilbert (Eat, Pray, Love)

Thursday, June 1, 2017

What I Need

After getting some bloodwork done on Monday, I had my clinic appointment with my nephrologist yesterday to go over my numbers and check in.  Overall, everything looks relatively good considering I have a failing kidney.  In three months nothing has taken a major hit, and we have found a happy spot with my meds to control my blood pressure (the fact that it's warm out and I have modified my work schedule also helps with that).  The three main take-aways from the appointment were:

1) I need to get my shit together with my nutrition.  While I think it was fine (maybe even healthy...) to take a three month self-pity hiatus and live off of pizza and caffeine, I'm not doing my body any favours.  It will be a challenge, as I still don't really have an appetite, but I'm going to start to make the shift from pizza to homemade muffins and boxed Mac and cheese to some quinoa (or even soba noodles).  So food prep is on the list of things to do this weekend.

2) There is no financial support programs out there for self-employed individuals needing recovery time.  There are a few long term disability programs available, but I don't financially, or medially qualify for those, or there is Ontario works, but again, at the moment I do not financially qualify for that, nor does it cover health issues for a short term case.  So that was a bit of a bummer to find out.  I love the fact that I can play around with my schedule and have control over my hours, but it's tough when I don't work - I don't get paid.  At some point, the plan is to have some sort of fundraising party before the transplant - stay tuned for details :)

3) The last big thing we went over isn't really news to me, but we talked about how it is going to be quite challenging to find someone who is a match for me.  I have developed antibodies against almost 100% of all antibodies.  So, somewhere out there someone is made up of the 2% of antibodies my body won't reject.  There are a few options - living donors are still an option, we are still encouraging people who are O+ and wanting to get tested to see if you are a match to call and start the process.  But having people who are similar to me decreases the likelihood of them being a good match for me; I need someone who is different from me (different background, with antibodies I haven't been exposed to).  Once I complete my TB test next week, I will have completed everything I need to do to be entered into the database.  This will open up several more options, as they can look at the Kidney Pair Donation (the fancy trade I talked about previously), or have access to other donors across Canada who may have the magical 2% makeup that I need (they may be living, or deceased - living is preferred, but I am slowly getting to the point of having to take what I get).  

What I Need

It has been so amazing receiving everyone's messages and offers to help.  Honestly, at the moment, all I need is a kidney.  I'm not at the "hand out donor cards", "put up a Facebook ad" need-a-kidney spot yet, but if you are O+, within the age range of 18-40, in overall good health and feel like sharing your spare kidney, please call 519-663-3552 to start getting tested.  Other than that, I have a pretty good support system around me that I am leaning on.  If I need any further help, I will post a list on here and you can contact me if you would like to take on a job!  I appreciate all of the offers, and at some point I will need all of the help I can get - right now I'm managing!  As we get closer to the surgery and even during transplant time, gift certificates may seem impersonal, but they are one of the best ways to help.  Places like Remark, Tim Hortons, Companions Pet Resort (Harlow's daycare), Chapters, Be Over Clean (the cleaning service I use), etc. will all be very helpful.  Thank you for your generosity and continued support xo    

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