July 2024 Update

Hello everyone!

It’s been a few months since we launched this website, and many of you have asked for an update on how I’m doing… so here’s an update for July.  Moving forward, I’ll try to post monthly updates here so you can easily follow my progress.

First, I want to thank everyone who visited the site when it launched in March.  It was one of the most difficult things I have ever done – it’s not easy to put yourself out there so personally, especially for someone like me.  I really appreciate all those who signed up to receive updates or sharable images and email templates that you can, in turn, share with your network.  The support from everyone has been amazing and I can’t express my gratitude enough!  If you haven’t already signed up, please do so here. It really helps to know that I have the support and best wishes from everyone, and it helps to keep my spirits up!  I also appreciate everyone who asks how I’m doing.  I know it is an awkward thing and you might feel like you are prying, but I promise you are not.  I really appreciate it when people ask because it lets me know they care.

For those of you who just don’t feel comfortable asking, I’m doing fairly well.  The past couple months have been a bit more challenging as some of the common symptoms of stage 4 CKD are starting to appear for me.  For example, I can now get out of breath quite easily… not all the time, but on occasion.  Simple tasks that I did with ease just 6 months ago, such as emptying the dishwasher or blow-drying my hair can put me out of breath quickly and require that I rest.  The even more difficult part of this symptom is adjusting to it mentally – my brain still thinks I can do anything so it’s super frustrating when I can’t do something or when it takes 10 times longer to do because I need to take frequent breaks.

I’m also experiencing some nausea and loss of appetite, also a common stage 4 symptom.  Many of you know, I love good food, so this is also a big mental adjustment and super challenging as I try to ensure that I get the proper nutrition I need in order to preserve my kidneys for as long as possible.

Throughout all this, my husband has been amazing! He has picked up any tasks I can’t get to and cooks some of the most delicious and nutritious meals to ensure I’m getting proper nutrition.  He deserves a medal for all he’s done the past couple of months!

My next Nephrologist appointment was supposed to be on July 3rd but was rescheduled to July 24th due to an emergency on my doctor’s end.  As per usual, I have completed another regular series of bloodwork to see how my kidneys are doing and have been able to view my lab results before seeing the doctor.  eGfr is the measurement used to estimate kidney function, and mine is estimated to be 18% as of late June 2024, which is a decline of 4% since February 2024.  Since I’m not a doctor, I will not even attempt to comment on what this means, but I am anxious to see the doctor in a couple of weeks in order to understand where this puts me with regard to the transplant process.

Otherwise, I am doing fairly well. I am still working full-time and appreciate all the support and encouragement I’ve received from my colleagues and the company.  I’m also enjoying the start of summer at home, tending to the garden and spending time with friends, family and of course our fluffy orange cat. I continue to try to take things one day at a time and am so grateful for all the love and support I’ve received from everyone over the past few months. 

I’ll send another update in August and will hopefully have some news to share after seeing the doctor later this month.

Until then, wishing you all a fantastic start to the summer.