Greetings, Earthlings! Here it is late February, and I just realized that this month I hit my 6-month mark on being on dialysis. It’s been a pretty interesting ride, with ups and downs. There have been some bumps, but just like driving on any bumpy road, you learn how to slow down. You learn how to use the high-beams and see them in advance, so you can turn the wheel to avoid them. Being on dialysis brings bumps to every road in life.
Instead of just idly rambling about different things, I thought I’d have some fun and structure this like a report card. You know, like back in school. Consider this my “mid term” assessments in my first year of treatment. I’ll break things down into Subjects – and talk about how daily dialysis treatments affects my life in each one.
Ok – so I’ll start with the one that blows my mind the most. The human body is a flat out miracle the way it works. Sure, we all know the details of each system that runs our body. Mankind has learned a lot about itself over the thousands of years it’s been studied, but let’s be honest – most of us don’t even think about it. We wake up, our hearts beat, our lungs fill with air, we see the sights, we hear the sounds, we smell the sweet aromas of life every day. We eat, we drink, we indulge from time to time, without even thinking about it. We may overdo it sometimes, and we feel like crap, but our body is an amazing machine that recovers pretty quickly.
Your kidneys play a major role in that. They help keep chemicals in your body balanced. They remove waste products and extra water from your blood. When your kidney’s aren’t working very well, you basically feel like crap. Your body gets exhausted trying to function normally with all the contaminants still in it. Since my kidneys aren’t working very well, they need help filtering my blood. Enter kidney dialysis.
I know that dialysis doesn’t do all the work that healthy kidneys do. In fact, it only does about 10% of the work. But let me tell you, you can feel every bit of that 10% and you count on every bit of it. That 10% makes me feel pretty close to normal most of the time. I do find myself very tired in the evenings, but it’s seems like a normal tired. I still go out at night on occasion but most nights I’m happy to be at home resting, and going to bed at a decent normal hour. Based on the way I feel most of the day, and positive feedback from my doctors, I’m passing with flying colors on the Biology front. While my natural body gets a failing grade here, my mind and treatments give me a solid “A” grade here.
It’s mind blowing how much money it costs to be sick. It’s no secret how expensive health care is today’s world. Some people have a much better setup than others with health insurance. I’m very thankful that I have excellent health insurance. Without it, I wouldn’t be able to get the excellent care I’m getting. Being single makes it even more affordable. I’m on an HDHP plan. That means I pay a very low monthly premium, but have a high out of pocket deductibe. For example – as a single guy, I pay the first $3000 out of my own pocket each year. Doctor visits, prescriptions, labs, anything. There’s no “80/20” or co-pays. If I go to the doctor in January, and the office visit is $300, then I pay $300. Simple as that. HOwever, once I get to $3000 on the year, everything is 100% paid for by insurance.
Since my dialyisis treatments cost almost $2000 PER WEEK – you can see that I hit that $3000 threshhold super early in the year. Like in the 2nd week of January. That’s why my insurance is so good. Sure I have to lump out a pretty big chunk of change early in the year, but after that everything is 100% paid for by insurance. Medicines, doctor visits, labs, anything, everything. I’m so very thankful for that.
Because of my job and my insurance – and being a Medicare recipient (that comes into play whenever we start talking Transplant – but that’s pretty complicated so I’m not gonna get into that here) – I give myself an “A” in Economics. I honestly can’t ask for a better setup.
Social Studies… or in this case, let’s talk about my social life. Before I got sick last year, it’s no secret of my lifestyle. I’ve never been married, no kids, and trust me I took advantage of that lifestyle. I traveled a lot, was always out with friends, always on the go. I was very spontaneous, impulsive, and never made plans. Always lived by the moment. People would ask me what I’m doing that evening, I’d say “I don’t know, I’ll tell you this evening”. It’s just the way I was, and I thrived on it.
I’ve definitely had to put the breaks on that way of living in the past 6 months. I have no choice but to plan ahead for things now. First and foremost, I know I have to be fairly close to home most of the time, or at least plan ahead to take treatments with me. Since I have to do treatments 4x per day, I definitely have had to adjust to structure. Living where I do really helps in that regard. I live in a very hip, active area of town, so it’s very easy to be out and about for fun, and pop back into home for treatment whenever I need to.
I’ve learned that I can still travel. My dialyis company has the ability to deliver supplies to any hotel in the country for me, with advance planning. I had 5 days worth delivered to Miami for my vacation last month, and here in a few weeks I’m going to New York City. I’ve already made plans to have it delivered to my hotel there. I plan on seeing all the sites in NY with easily being able to pop into my hotel for treatments when needed.
I have had to set limits to myself in my social life. While I’m still able to go out with friends anytime I want, I do it now with a set limit. I know I have to be home at a decent hour for my last treatment of the day. I know I need more rest than I used to get. Going to bed at 10 or 11pm on a Friday night doesn’t seem so “lame” anymore. In fact it’s a crucial part of my lifestyle now – to get rest and feel good each day. It’s the only way I can function, as my body is severely handicapped in it’s efforts to “feel good” naturally. So I need to help it all I can.
With the limits I’ve set on myself, I can honestly say I haven’t missed a beat. I still go to concerts, vacations, restaurants, and any other social gathering I used to go to. I just set a time limit for myself now. It’s worked out very well!
I’ve even started dating again – for the first time in a long time. At first I didn’t really know how to tackle that. How do you tell someone you’re interested in “Hey, I really like you – I think we’d have fun together. Oh, but I need a kidney transplant and am on dialysis for awhile, I hope that’s not a big deal”. It’s one of those things where you wonder “at what point do I bring this up”? Do you do it right up front, so there are no surprises? Or do you go out a few times, and if you see things progressing – then you talk about it? Or is that considered not being honest up front, and putting the other person in an awkward position? I dunno. So far I’ve opted to let the person know up front. The few girls I’ve gone out with were very cool and didn’t seem bothered by it. But then again they aren’t around anymore so who knows, haha. Kidding. I’m just glad to be back out in circulation again. I was dormant for so long in that regard. I am getting more comfortable with it so it’s not as awkward to talk about up front anymore.
I’m gonna give myself a solid “B” here in Social Studies because I know there’s room to improve and I’ll get better.
Quiero hablar español! (I want to speak Spanish!) Why? I have no idea. I only took 1 year of Spanish in 9th grade, so it’s not like I could ever speak it before. But I figure it’s the 2nd most popular language in America, so why not try to learn some of it? Anyway – I figure since I’m chained up to my dialyis pole 4x per day (for 30 minutes at a time), I might as well do something productive with it. I bought the Rosetta Stone course for my iPad last year – and I must say I’ve been very consistent with using it. I probably do about 45 or so minutes per day on it. It takes a looooong time to do this course, and you have to be consistent with it. In fact, I’ve been doing this consistently for 5 or 6 months now, and I’m only about 1/4 of the way through the course. I’m still in the beginnings/basics so I haven’t learned a whole lot yet. It makes a lot of sense when it’s in front of me, but I can’t really use it in real life practice yet. The course is structured to teach you how to do basic life interaction functions. How to talk to a store clerk, or a waiter, how to ask directions, how to inquire about public transportation, etc… It’s very very basic so far, but challenging. It already “clicks” in my brain when it’s in front of me in the course – but I can’t wait for it to “click” when I’m out and about walking around on my own. I’ll get there. In the meantime I’m LOVING these courses and actually look forward to dialysis now so I can study Spanish! Out of the 2 hours per day I’m hooked up, probably almost an hour of it is practicing Spanish.
My goal is to write a blog post completely in Spanish someday – but I’ll give that some time. Maybe late summer I’ll give that a shot. It’ll be a short entry though hahah. My current grade in Spanish? haha… well – the courseware so far thinks I’m making an “A”… and I suppose I am… however I am definitely a novice. I’ll give myself a Kindergarten grade here.. how about “S” for Satisfactory, haha.
I’ll tell you what – if there’s anybody who can’t wait for the Spring thaw it’s me. I’m jumping at the bit to get outside. To start walking and riding my bike again. It’s been a long cold winter and I have to say I haven’t exercised much at all. When I first started dialysis I started gaining a few pounds, and the reason for that was two-fold. First, my body was adjusting to having all this dialysis sugar water sitting in it 24/7 (it really packs on the extra calories), and also because I basically quit exercising once Winter hit. I did by a spinner bike, and I do use it once per week, however I need a more structured exercise schedule. I prefer the “natural” exercise… like when I want to go for a long walk or a bike ride – those things are non existent in the frigid Indiana winter. Today it’s in the 60’s in February – which is like a heat wave – so after writing this entry I’m going to go out for a walk. I’m sure there are a lot of people out today!
Thankfully I’ve quit gaining weight though. I’ve changed my treatment solution schedule up a bit – and I haven’t gained a pound in the past few months. I haven’t lost any either – but I really haven’t been trying. Once my daily exercises ramp up in Spring (very soon!) I’ll start to see that scale dip down again. But I’m perfectly happy with where I’m at right now, I’ll let that stuff happen naturally in the coming months. But, my P.E. grade so far? We’re gonna have to go with “C” – as I definitely have to ramp that up.
Well, that’s it, there’s my report card… Pretty long entry, but I was bored and wanted to let you guys know how I’m doing. You can probably tell I’m doing ok based on my Facebook posts and when you see me out and about. I’m just sitting around waiting on a transplant match. I do have some positive news there but don’t want to jinx anything – I’ll write about that when things come together. It just takes awhile. I have had a few living donor matches, but it just takes a long time for that process to pan out. Wish me and my potential donors luck on that.
If you’re just now reading about this for the first time, and are interested in learning about being a living kidney donor, please read THIS BLOG POST… all the info is in there. Thanks for being a great friend and person and thanks for reading!