Transplant Athlete
Wednesday, November 18, 2009
  An Eloquent Plea For Justice

I wrote a post awhile back about the tragedy in calling a bicycle/vehicle collision an "accident", but I think Bob Mionske has hit the nail on the head with his post. Bob is a lawyer and a cyclist.

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Sunday, November 15, 2009
  I'm So Ready For This To Be Over

In the span of two weeks, I lost a baby and a cousin. Davita kicking me out of the home hemo program felt like they were kicking me when I was down. I was hurt and angry and I wasn't thinking straight. I wasn't really thinking at all. Davita pulled the machine out of my house this friday. I felt some relief, but Saturday at dialysis, I saw a page out of my chart from the home hemo program and there was a gross exaggeration (a lie) on it from Eva Dwyer, the home hemo nurse.

I started putting the pieces together after I saw that. One of the first things Eva taught me was that she had the power to send me back in center. She often repeated it to me throughout training. My doctor hadn't seen me in over a month, so he could only go by what Eva told him, and I didn't have any interaction with the other staff at Davita. Also, Eva scheduled a meeting on Monday, November 2nd, I couldn't make it and told her that the thursday or friday before the meeting. We rescheduled for Tuesday November 3rd. She neglected to tell the doctor beforehand, so I got a frantic call from her sometime Monday begging me to come in for the meeting, then Tuesday when I showed up for the meeting, she said, "you really should have showed up yesterday, the doctor...(my memory is fuzzy here, I think she said, "wasted an hour of his time waiting for you to show up."). Then in the meeting, she was the one pointing out all the things she felt I was doing wrong.

Most of my anger is gone now, but I still harbor some towards Eva. I have to apologize to the woman who runs the Davita Fairfax facility, I was rather rude on the phone with her last week. I also plan on telling the doctor that it was Eva who wasted his time and not me. I'm still planning on going back to Metropolitan Nephrology.


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Wednesday, November 11, 2009
  Thanksgiving Arrangements

I just called Davita Guest Services to schedule a treatment for Thanksgiving. I gave them the address of the closest clinic to my parents house (there are 2 within 7 miles).

She then asked how far would I be willing to travel in case that clinic is filled (20 miles, 30 miles, 240 miles...Hell lady, why don't I just dialyze at my home clinic.) My guess is that she will automatically put me in the Davita Clinic 17 miles from my parent's house without even checking the two closer ones. As I've stated in a previous post, there's about a dozen centers that are within 10 miles of my parents house.


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  I Have No Rights - Dialysis Is Hopeless

Apparently, One of the many documents I signed at the beginning of Home Hemo stated, "I may be discharged from the program for failing to meet the expectations of the staff..."

Apparently, that trumps the other document I signed at the same time giving me the right to 30 days advance notice. It also gives them vast leeway to do whatever they want and they can use anything as an excuse to boot me from the program. Your paperwork was late, that doesn't meet our expectations. Hit the Highway. You did what we trained you to do, not what we told you to do, that doesn't meet our expectations. Hit the highway.

In-Center dialysis is such an inferior treatment modality. It's really meant to keep a person alive. Home hemo, while a lot of work, brought my health to a very high level, below what a transplant would have done, but enough to make a noticeable difference. I'm going through a disconnect here. I'm supposed to be in charge of my healthcare. When Dr. Goel screwed up, I had to figure out what was wrong. I can't take this. There is a better treatment option available, I should be able to get it. This just doesn't compute.

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Monday, November 09, 2009
  Like Sands Through The Hourglass...

I found myself humming a Warren Zevon tune tonight. Maybe it's because I'm stuck between the rock and the hard place. Dad get me outta this.

So...I met with Davita's "Care Team" on Tuesday November 3rd. They told me I was being discharged from the Home Program and I would be dialyzing In-Center. They felt I was too much of a liability to the fledgling program. They told me I was to dialyze at home that night and then go In-Center on Thursday, so apparently I wasn't in any immediate danger from myself.

I received the following letter by FEDEX:davita%20discharge.pdf

While signing paperwork for the new clinic, I was asked to sign the "Davita Patient Rights" statement. This is one of a dozen things they ask you to sign when you start dialysis and I signed an identical copy before starting home Hemo. I've included the first page here: davita%20patients%20rights.pdf

Number 12 (and I quote) "To be fully informed of reasons for involuntary discharge or transfer from the facility and to be given advance written notice of 30 days unless the reason involves issues of immediate safety to other patients or teammates. These actions may result in immediate discharge.”

Debra's letter was dated the 3rd and was effective the 4th, she clearly did not give me the 30 days advance notice. As to the actions that would result in immediate discharge...Immediate safety of other patients or teammates...Since I dialyze at home, there's no way I could put others at risk. If I was an immediate risk, why would they let me dialyze that night when they clearly could have said, "get your behind to a clinic."

According to Davita I have a right to file a grievance orally or in writing, so I put together a polite letter that clearly states my case and dropped it off with the Social Worker at Davita Fairfax. When I got home today and checked messages there was a message from the Facility Administrator saying she got my letter and there was no way I'd ever be rejoining their home program; arrangements were made for me to dialyze In-Center at Sterling; and they wanted their equipment back (and I'd better not dialyze at home even though I have almost two months worth of supplies). I'll try to post the message later.

So, now I have to escalate the issue both internally with Davita and the State Board of Health as well as the End Stage Renal Disease Network. Since I'm now dialyzing in-center I have 36 hours in my week that have been freed up to point out to this poor lady that she can't violate my Davita given rights and get away with it. What's the point in making me sign a document listing my rights as a patient if you're just going to throw them out the window at your convenience?


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Sunday, November 08, 2009
  Bye Bye Dialysis

After home dialysis Tuesday, I had issues. I took an ambulance ride to the Emergency Room. They couldn't find anything wrong with me. I dialyzed in the hospital on Thursday. Friday my blood pressure spiked and I was nauseous. I started taking all the blood pressure meds I have in the house. Saturday, I dialyzed In-Center. I didn't tolerate it very well and they gave me some saline and pulled me off early.

When I got home, I added more blood pressure meds and tried to calm down. I'm caught in a dangerous cycle. I get scared that something is wrong and that undoubtedly is raising my pressure and heart rate and that's freaking me out. To make matters worse. We're making a switch from a 1K bath to a 2K bath. The last time we tried this, I ended up in the hospital. I can't stay on the 1K bath, so I'm pretty much screwed if this doesn't work.

My parents were down on Wednesday and my dad volunteered to donate his kidney, so we started the process. I anticipate I'll be a transplant athlete again in about a month if everything goes well.


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I've gone through kidney failure twice. The first time in 2000, my mother donated a kidney; and again in 2008, I'm on dialysis waiting for a breakthrough in immuno-suppression medicines before seeking a new kidney.

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Warning Signs for Kidney Disease:

  • High Blood Pressure
  • Burning or Difficulty when Urinating
  • Frequent Urination at Night
  • Blood in your urine
  • Cola or tea colored urine
  • Swellig of the eyes, ankles, or feet
  • Lower back pain unrelated to physical activity

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