Did you know? : http://kidney.niddk.nih.gov/KUDiseases/pubs/kustats/index.aspx
A clip from that article that stunned me: "Prevalence (2010): More than 10 percent of people, or more than 20 million, ages 20 years and older in the United States have CKD.1"
Now, not all of these patients will be on dialysis. Some folks with CKD live their whole lives without having to go on dialysis. They can modify their diets, avoiding things that are hard on their kidneys, and function just fine. Others aren't so lucky, because they never KNEW their kidneys were failing until it was too late. So, in the interest of hopefully avoiding anyone else finding out the way WE did, here are the most common symptoms.
- Urinate less than normal.
- Have swelling from fluid buildup in your tissues. This is called edema (say "ih-DEE-muh").
- Feel very tired or sleepy.
- Not feel hungry, or you may lose weight without trying.
- Often feel sick to your stomach (nauseated) or vomit.
- Have trouble sleeping.
- Have headaches or trouble thinking clearly.
- Lack of sex drive
Now, our story. Some has been documented below, so I will skip all the drama that led us to learn, in a hospital ER, that Johns kidneys were kaput.
When you learn your kidneys have failed, it's frightening, and alarming, and the information comes at you faster than you can actually take it all in. There are now a million things to think about. Potassium, Phosphorous, Salt all become your enemy. You start to take a LOT of pills. When we left the hospital in Milwaukee after a week to go home to Indiana, I stopped at a pharmacy to fill the scripts they'd given us. The pharmacist actually called me back over to warn me that the scripts, all total, were over $800. Think about that for a moment.
In the hospital, a resident Nephrologist began dialysis. He also set John up with a Neph at home, and on the Monday after we returned home, we went to see him.
I had time, prior to seeing him, to begin to educate myself about ESRD and all that it entails. I can't stand to feel as if I don't understand what's happening, and I wanted to be SURE we were active partners in his care with his doctor. It took us a little time to establish that with his doctor, and I contemplated changing doctors, but over time, we've come to work together quite well. (Once a doctor understands you ARE, in fact, working TOGETHER, things tend to go much better.) The new doctors office is connected to a dialysis clinic, and he sent John over for dialysis because he needed it badly, and sent me (I'm thankful for this EVERY day) to visit Wellbound, a home dialysis unit.
I left him trying to get comfortable on a bed that was way too small for him, in a room full of strangers, and a dozen other people getting dialyzed, and walked into the calm that was Wellbound less than a mile away. Katherine, the unit director met me, and we went to a conference room to talk about what lie ahead for us. Patients have better health histories when they do dialysis at home, and that's what Wellbound specializes in. They do not offer on site dialysis, and I believe that they are also non profit. Our Neph had recommended Peritoneal Dialysis, so, that's what we went with. (In hindsight, not the best choice for us). And so, John went to dialysis in clinic, and had the surgery to prepare for PD. Immediately after the surgery to place the catheter tube, we went to Wellbound for a sort of 'intake' visit. And was I ever shocked. :) We were taken to a room, and in came the nurses. Yes, nurses, plural. They were all there, fluttering over John, explaining things, getting him all set up in the system. In came the social worker. In came the dietician. We met them all, we got advice from them all. I asked a trillion questions of them all. They answered them all. I walked out of there that day feeling oddly calm, and with the attitude of 'I got this.' That's what Wellbound gave me.
We continued training there. We did PD for quite awhile. We went, and still go to 'clinic' once a month. Clinic is held at Wellbound, and our Neph comes there, so we powwow with our nurses, our Neph, the social worker if need be, and the dietician. They stop me in the halls and ask how things are going. They let me stop them and ask my endless questions. They explain test results to us, they explain the TESTS to us. they empower US to provide his healthcare. There's just NONE of the usual BS. None. They have a calming, matter of fact approach to all of this that leaves you feeling like your world hasn't just come crashing down around your ears. I've never once felt as if I were bothering them (and I -know- I have bothered them, I can't help it! It's in my nature).
I've read and read myself silly on forums dealing with dialysis patients, and it saddens me to hear how many have had much, much different experiences than we did. Poor treatment in centers, neglect in centers, fighting the system to be allowed to DO home dialysis because in center dialysis is SO much more profitable, fighting to have a voice in their own care and comfort. We never had to deal with that. And that, I owe to Wellbound.
When we made the decision that we wanted to switch from Home PD to Home Hemo Dialysis, AND to do it nocturnally, I recalled a million posts from other patients on how their clinics kept turning them down for it. Telling them it would take months or years before they could offer training to do it, and I mentally braced myself to be prepared to fight for this. I planned out my arguments, I educated myself for days on end, and I went in all prepared to go all warrior on the doc for it. At clinic, I said 'I think we want to switch to home hemo, and do it nocturnally'. Ruth, our nurse said 'Okay. When you wanna train?' The doc asked my reasoning for nocturnal, and we discussed what -I- wanted time wise, and after debating the best course of action, our training was set up on OUR schedule. :) Not months, or years. Just 'When you wanna train?'
And Kabam. A few weeks later, we go five days a week to learn to do this at home. This modality will give John the best possible health and life until we are fortunate enough to get a kidney. And just like that, Wellbound and our Neph made it happen.
And finally, a note on organ donation. Do it. Please. Sign it. Kidney patients are actually the luckiest of the organ failure patients, because there IS a method to keep them alive until an organ is there for them. Others, not so much. And even still, kidney patients die every year waiting for that gift. So, please, I beg you, donate. You don't need all those pesky organs once you are gone, and you truly CAN leave a legacy that cannot be measured.
No comments:
Post a Comment