Now that that's out of the way, let's talk about being informed. Or better yet, how patients get treated in the dialysis centers. The nifty thing about writing this blog and posting on Facebook, and I've been writing since early 2013, Facebook lets me see my memories. I can see what I've written. Today's memory form 3 years ago was pretty depressing. I was writing about my fellow warriors. In retrospect I was surrounded by death on a regular basis. Ok. I've digressed again. Let's talk about being informed.
The Whispers, "In the Mood". Once I had the diagnosis of end stage renal disease, I started looking it up. The doctors and nurses and whatnot in the hospital never gave me enough information to satisfy me. And while I was in the hospital Brian brought me my iPad, bless his heart. I admit that what I was reading horrified and scared me. I had to take it in in bits and pieces. It was a lot of no hope stuff..at least from my perspective. Certainly life changing. I had catheters in my groin, they my chest, then someone wanted to put something in my arm. And no one, I mean no one explained jackshif to me. Of course I'd ask..or would even refuse to go with orderlies until someone came to explain to me what was going on. This stuff was scary enough without knowing what was happening to me. When I was sent to get the chest catheter, I asked the person performing the procedure a ton of questions and even asked her credentials. Lol.
Eventually i made it to the dialysis center. I was discharged from the hospital on Friday afternoon and was at the dialysis center Monday afternoon. Chicago, "Safurday in the Park". I eventually ended up with a really good dialysis tech. And in retrospect, after going to other dialysis clinics out of town when I traveled, most of the techs at my center were pretty good. A lot of the techs and nurses made sure we were informed. Of course there were noncompliant patients who just didn't care. But a good number of us took in the information. While I was still trying to understand the scope of my kidney failure, my tech made sure I understood the dialysis machine. Yes, I was overwhelmed. But she forced the topic. Lol. Glad she did. After a series of me passing out, another tech advised me to make sure staff did,not pull more than 2.5 kilometers of fluid off of me during treatment. The social workers helped me navigate travel and encouraged me to get involved with the National Kodney Foundation, MOTTEP (Minority Organ Tissue Transplant Education Program), and become a peer mentor to dialysis patients.
Eventually I decided I wanted more control over my treatment. I'd speak up when my skin reacted to the alcohol pads, and then the paper tape. The center made the adjustments. My access was deep and the center changed to needles that were longer to make the cannulation easier. I wanted to learn how to stick my self. And my tech started with teaching me to remove my needles. Yes there some bloody incidents! Lol. A tech even started to teach me how to remove myself from the dialysis machine. At this point, I was being convinced to try home hemodialysis by other forces. I was scared. But after understanding the benefits and flexibility. I went for it. Of course home hemodialysis was delayed by the move to Las Vegas.
Now here's a tidbit. The group that runs the dialysis clinic I went to, Greenfield Health Systems, offered an information session of home hemodialysis. They have a good number of clinics in Michigan. The number of attendees to the information session was small. And I was the only one from my center. Based on the number of chairs, shifts and days, we're talking over 200 patients. I. Was. The. Only. One. I was disappointed. But people have their reasons. I get that. Parliament, "Flashlight". You know you want to start dancing!
Once I moved to Las Vegas, the clinic was just awful. Ugh. I realized how fortunate I was in Detroit. But I think it was a function of the center I was placed at. And staff tended to treat you like crap, unless you called them out. And you can call them out by being informed. I really went toe to toe with my new nephrologist. I had to let them know I was an informed patient and he could not be patronizing toward me. Geez. We're already dealing with esrd and dialysis and we have to deal with this? Not me. Compassion anyone?
Fortunately I started home hemo training within 5 months of arriving in Las Vegas . And I haven't looked back. And as informed as I was before I started home hemo, I am much more informed because I have control over my treatment. And having a team that listens and understands helps immensely. Case in point. I have a skin disorder( which manifested when I moved to the desert...go figure). The treatment for the skin disorder is at odds with a dialysis treatment....I get iron supplements for dialysis because my kidneys don't work and can't make enough iron. But iron exacerbates the skin condition. The nephrologist, nurses and I discussed the issue. Based on my lab reports they decided I can get iron infusions every other month as I have enough iron stores to skip a month. This was a group decision and I was involved and informed on my treatment.
The System, "Don't Disturb This Groove". I know all of my medications. I know why they are prescribed. I know side effects and which side effects I need to watch out for. When I go to another doctor I know my meds, amounts and dosage. Don't need to bring a list. You need to be able to do this. You need to be able to know exactly what's going on with you to make informed decisions and advocate for yourself. It could save your life. And I'm going to tell you, it can make a difference how the medical staff treats you. Don't stand for any crap. And by knowing what you have going on, you'll be fine.
Finally, we had a thunderstorm yesterday. Thunder and lightening, very, very frightening...for 15 minutes! Lol lol. But it was a real storm. The lightening was most impressive across the desert sky. For some reason we left to go during the storm to go to the grocery store. I told Dad that we planned on melting. The sky to the north and the sky to the south were both blue with peeks of sunshine. Sky to the east was jet black. By the time we got to the grocery store it had stopped raining and the sun was peeking out. Lol.
Singing off with Isaac Hayes, "Joy". Yeah... ;-) Oh. Dad will celebrate his 91st birthday on Sunday, April 9. Guess where he wants us to take him? You know! Lol. Have a wonderful day!
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