Hello friends and family! It’s been an unbelievably HOT and MUGGY summer, so I thought this beautiful 80 degree humidity free evening would be a perfect opportunity to sit on the deck and give you all an update. I believe it’s been almost 3 months since I last wrote an entry here. I have quite a bit to say, so as you read I’ll let you enjoy some pics I took on my bike ride after work today!
First I’ll give an update on how I’m doing personally. I’ve been feeling fantastic! I have a ton of energy. I’ve done some traveling this summer, including a great trip to Colorado back in June. Check my Facebook for some amazing pictures from there. Big shout out to Rachel for hosting me!
About my daily habits and rehab…. I see a personal trainer twice per week at my gym (NIFS downtown), plus I do a lot of exercise myself on the side.
My biggest accomplishment is being able to run/jog again. It took about 3 months after surgery for me to be able to even start thinking about that. I started out by just walking a lot. When I first started mixing in jogging, I could probably only go about a block or so before having to rest or feeling a little weird in new kidney area. But I didn’t let that get to me, I just did what I could. I’d walk a block, jog a block, walk a block, etc.
My gym has an indoor track, the lane I use is 7 laps per mile. I started out there by jogging a lap, walking a lap, jogging a lap, etc.. I slowly started improving… I’d soon jog 2 laps, then walk a lap… etc. Before I knew it I was able to jog 1/2 mile before walking. A week later I was jogging 3/4 mile before walking. A couple weeks ago I hit the milestone – I jogged a full mile without stopping! I was pumped lol.
It wasn’t world class speed, mind you – my first mile clocked in at 12.5 minutes. BUT… in the past 2 weeks I’ve ran that mile 3 or 4 times non stop, and I’ve improved my time down to 11 mins, 15 secs. That’s where I’m currently at, and I’m pretty happy with that for now.
My next step is to keep that pace up but increase – go 1.25 miles… etc.. baby step it up each week – by this Fall I’ll be doing a 5k. That’s my goal. I figure by October I’ll be ready for that. Wish me luck!
I’ve been doing the jogging training on my own, however my personal trainer at NIFS is awesome. He has me on a full body workout plan that focuses on proper balance and technique, not heavy weights. I’m still on a weight lifting restriction – I’m only allowed to lift 40 lbs or less right now. Each month it goes up 10 lbs… after 6 months I’m not restricted anymore. So I can start pumping some real iron here in a couple months. In the meantime I’m slowly getting back into shape the right way, it’s a very enjoyable lifestyle, and by winter I’ll be in pretty good shape and healthier than ever.
Now on to my kidney function update. I don’t want to make this sound like it’s really bad, but I have to say that it hasn’t been ideal. I’ve had a couple biopsies in the last few months, because my creatinine level has been a little higher than it should be.
After surgery they wanted my level to be around 1.5-1.6, however for the longest time I was in the 1.8-1.9 range. The last couple months I’ve been in the 2.0-2.2 range. (For more info on what all this means, read my previous blog posts) The kidney doesn’t appear to be “failing”, but it has had some issues with some signs of inflammation or rejection, however it is treatable with medication.
After surgery, I opted to do a “study drug” program, which focuses on my specific kidney disease (FSGS – google it if you want, it’s too long type type out here haha). That disease has a tendency to spread to a transplanted kidney, so I opted for this study drug to maybe help prevent that. Anyway, the good news is that my FSGS has not spread to the new kidney, however I’m having some inflamation in the kidney which is causing the creatinine level to be high, which means the kidney function isn’t ideal. Whether it’s rejection, or an allergy to a medication I’m on, they treat both the same way, with steroids.
Anyway, starting tomorrow, (Thurs July 19), I’m officially moving “off” the study drug program, and getting put on the normal anti-rejection program they give most patients. My doctors have decided this is the best route for me, as the study drug isn’t working as well as they’d hoped. This program I’m moving to is the program they know the best, and is tried and true. I’m also going to start a steroid taper program – the steroids will decrease my kidney inflammation, and in turn lower my creatinine, and hopefully the new drugs will keep it low. That’s my story and I’m sticking to it 🙂
I’ll give you all an update in a few weeks to a month, to let you know how the new drug program is going. Please pray, send good vibes, whatever you fancy in that regard – that this new program tells my body to “slow your roll, son” on being a bully to my new kidney. Like always, I’m thinking positive and am counting on this new program to do the trick.
Let’s see, what else is new with me. Work is going GREAT. I truly love my job and my coworkers, I am extremely blessed to work for such an amazing company the past (almost) 13 years. I’ve been back to work since mid April (about 3 months now), it’s astonishing all I’ve gotten done in that time frame. Here’s a shout out to all my partners in crime at IMS – it’s a pleasure working with and for you all.
Social media – some of you may have noticed that I haven’t been on Facebook much in the past few weeks. You might see a random picture here or there, but if you do, it’s being posted from Instagram. I’ve made Instagram my social media platform of choice, it’s been very refreshing to be away from Facebook. Mainly to break my addiction of mindlessly scrolling there. I have been doing that for years and years, have posted way too much on there, have basically made that my main point of communication with anyone and everyone. Well I’ve vowed to change that. I’ve decided to see the world around me more, with my own eyes, as opposed to having them glued to a smart phone or computer screen all the time. I’m not totally dissing it, I know a lot of people that depend on it (including me for years), I’m just going for a change.
I haven’t given up Facebook totally. I know it’s a major part of communication for a lot of my friends and family, so I will log in every few days or once a week or so to see if I have any messages or anything important posted toward me. But I’ve found that when I do log in, and I start scrolling through my feed, I usually get about 10 or 12 posts down before I’m already over it, and I just log out. So anyway, I do post to Instagram every now and then, so head over there if you want to see/hear more from me. My handle there is “c.terry.angel”. I don’t forward alllll my Instagram posts to Facebook, but I will push one over there if I think it’s exceptionally cool. 🙂
Lastly, I want to send a shout out to my cousin and kidney donor, Dennis. Today is his birthday – Happy Birthday buddy! I also realized today that since it is his birthday, then it’s also a partially “my” birthday too. I mean, as of now a part of my body was born on this day haha. So, cheers to you Dennis! and Cheers to my lower right abdomen lol.
Thanks for reading, I’ll check in here in about a month or so to give you all another update on my new treatment program. I’m excited to get it going!
July 18, 2018
July 19 Update – today My doc told me that all 3 of my biopsies showed the same inflammation. They sent a sample of this last one to Oregon to a special lab, they said the rejection has not gotten any worse, but there is inflammation still. So I’m starting 2 weeks of heavy steroids to lower inflammation, and my new drugs should keep it down, hopefully. I’ll still be taking Prograf, but also adding a new immunosuppressant called Myfortic. I’ll blog up and update in 2 or 3 weeks.