I’m going to go back a little to when I first started dialysis. But first, I don’t know if any of you were wondering, “How would a person who doesn’t have insurance pay for dialysis treatments?” Well, after I lost my job, I knew I had to continue to have insurance, so I enrolled in the Affordable Care Act, commonly known as Obamacare. It was a good price for the amount of money I had saved up and the package I received when I was “relieved” my job.
After I started dialysis, I started getting letters from Medicare telling me I had to sign up for that insurance now or the price of the premium would go up. The price was a little higher than Obamacare, but I figure I had better get on it before it went any higher. It turns out that when you have ESRD, Medicare will become your insurance for the duration of your illness. If you have ESRD and you don’t have good insurance, go to this website (https://www.medicare.gov/basics/end-stage-renal-disease) to find out if you are illegible and what steps you need to take next.
I also needed supplemental medical insurance to cover the costs that Medicare didn’t pay for. Make sure to search and compare insurance to find which is best for you. You can also ask your insurance specialist at the center to help direct you to the type of supplement insurance that best suit your needs.
So with all that, the amount I needed to cover the premiums on my insurance started racking up.
That’s when I learned about the American Kidney Fund. AKF is a nonprofit organization that supports people wherever they are in their fight against kidney disease, from prevention through post-transplant living. One way they helped me was with my premiums. They paid for both my Medicare and my supplement insurance. This really took a load off my mind, trying to figure out how I was going to pay both of these premiums. I will be eternally grateful for their help and support.
Now that I’ve got that priceless morsel out of the way, here are a few definitions for a better understanding of the process of dialysis treatments.
Dialysis is for people who have kidney failure. Dialysis is an artificial method of purifying the blood when your kidneys no longer work properly. It helps by eliminating waste products and harmful substances. This process removes your blood from your body through the needle and sends it across a special filter. The blood then circulates within the machine, cleans your blood, removes the impurities, and sends it back into your body.
Like I said before, I chose to do in-center hemodialysis. I started my treatments with a central venous catheter.
A central venous catheter (CVC) is a type of access used for hemodialysis. It is a soft plastic tube that is surgically inserted into a large vein, usually the internal jugular. CVC’s are only used temporarily until a permanent access such as a fistula or graft is ready for use in the dialysis treatments.
This wasn’t too bad. It was on the upper right section of my chest, as shown in the image above. Before hooking me up to the dialysis machine, the nurse or technician had to sterilize the catheter and the site. They would flush the catheter, scrub the site to remove residue and blood, then change the dressing once a week.
I also had to take care of the CVC at home. I had to make sure I kept it clean and sterile. When I took showers, I had to buy waterproof film to cover it to keep it from getting wet. Sometimes it would itch, and it was very hard to suppress that urge to scratch. I had to check it daily to make sure it didn’t get infected. Even though the staff at the center change the dressing daily, I had to buy an emergency dressing kit for home just in case I needed it changed before my next session.
I had to buy a few button-down shirts because I didn’t wear them unless they were dress shirts. Anyone notice that the word “buy” keeps showing up? Well, that’s because the things I mentioned that I needed were not covered under my Medicare or my supplement insurance. Being sick is starting to get a little expensive.
A couple of weeks later, I had an AV (arteriovenous) fistula put in my right arm (because I’m left-handed).
A fistula is a connection that’s made between an artery and a vein for dialysis access. A surgical procedure is done that requires stitching together the two vessels to create an AV fistula. A fistula allows hemodialysis to take place because the normal veins used for blood tests are not strong enough for dialysis.
The image above shows what a fistula would look like on the arm of a dialysis patient. Mine looked almost exactly like that, only a little higher up the arm. Near the end of the fourth week, the nurse told me that in my next session, “We will be using your fistula.” I knew eventually I would have to start using it, but not this soon. This made me really nervous and anxious. I mean, the thought of being stuck with two needles three times a week was not something I was looking forward to.
When I walked into the room the next week, my anxiety jumped up a couple of notches, and I felt very uncomfortable. The technician was very reassuring and gentle. He made sure I was comfortable. He talked to me and kept my mind off what he was doing (sticking two needles in my arm, ugh), and before I knew it, I was hooked up and ready to start.
As the machine hummed along, I put in my earphones (yea, because I didn’t have earbuds yet) and turned on my television. It was cool that we had our very own TV, so there was no fighting over what we were going to watch. This is when I learned about my love of cooking shows! I never paid much attention to them before then.
When I wasn’t watching the cooking shows, I was talking with the people around me. The other patients, the technicians, the nurses, and all the other staff members were very engaging. It was a nice social environment. Some people took this time to nap. It took me a long time to get comfortable enough to take a nap. I don’t know if it was because I couldn’t relax around strangers or because I didn’t want to miss a thing (haha, a play on Aerosmith’s song “I don’t want to miss a thing”). Eventually, it happened, and it turns out they were some of the best naps I’ve ever taken.
Later, I learned that there are several dialysis centers. I used DaVita because my nephrologist recommended it, it was the only one I heard of at the time, and plus it was fairly close to my house. But it was a nice facility. Most of the technicians are very well trained.
There are several lifestyle changes that kidney patients have to make. The staff loved using the word “kidney friendly.”
Diet “kidney-friendly”
- Low phosphorus
- Low or no salt
- Low potassium
Vitamins “kidney-friendly”
- Special prescribed renal vitamins
- Phosphorus binders
Activities “kidney-friendly”
- Walking
- Yoga
- Aerobic Training
- Low-level strengthening exercises
- Hydration “kidney-friendly” (got a little carried away, actually that’s for everyone)
- Quit or don’t start smoking.
- Limit your alcohol intake.
- Watch your blood pressure.
- Watch your blood sugar if you have diabetes.
I did start doing more exercises. I like listening to music a lot, and I love to dance to it. I took up yoga. I actually did the poor man’s version. I looked up beginner’s yoga on the internet, bought a mat, and got to work. It’s very relaxing, and it does give you a sense of calm.
I tried to quit smoking, but it was hard. I was smoking, and yes I counted, 11 cigarettes a day. I didn’t quit just yet, but I did manage to cut down to 5 cigarettes a day and cut down drinking alcohol.
I discovered that having ESRD (end-stage renal disease) is not only more work but more expensive than just taking care of your body from the start. It’s too late for me, but hopefully there’s a lesson here for others in the prevention of kidney disease.
