Ugh. Ugh. ugh.
When I started on dialysis, in May 2006, I was under the care of the best team ever. Each aspect of my care was managed by a person assigned to a particular task. We met monthly, we talked, we discussed, changed, flowed, cared. We monitored outcomes, made changes where needed, set goals to meet. Everyone was on the same page.
It was blissful. It was alot of work. I was healthy. feeling good, living my life without too much interupption.
Then, we moved to Arizona to be closer to transplant possibilities.
We have had distinct concerns throughout the last 8 months since moving here about medical care. We did have to accpet the fact that things are just done differently here, which was hard, but if the end result is the same it shouldn't have been a huge issue. Right?
Since moving here, I've been put on extreme dosages of EPO for low red cell counts, my length of dialysis has basically gone from 9 hours to 24 hours a day, I've had two life threatening infection episodes, one hospitalization, and the list goes on.
The question was asked last month to the team- Why am I even on dialysis, let alone THIS much dialysis, when on my tests show that I still have 13% function in my one kidney and better clearances through that kidney that through the dialysis process?
The answer was surprisingly- vague. the more we asked, the more vague the answers grew. Then, the defensive answers kicked in. It almost came down to "becasue I say so".
We have a one hour drive each way for these appointments twice a month. On the way home this time, there was alot of frustration, confusion and discussion about the level of care. Again. Between the feeling of chasing our tails to get my healthy (I've basically been sick every day since 9/11 this year), and the routine Dr. visits of 'get your weight and blood pressure, review meds, how ya feeling, goodbye', not to mention the only contact with the dietitian is a 1st grade pitorial of the right foods to eat for certain blood issues once a month in the mail ...
We've hit the end of the road.
We talked it over and decided to try something. Something rather bold, but we felt, important.
I stopped dialysis. For two weeks. Without telling anyone outside this house.
The cold, hard fact is that I should be in the hospital fighting for my life right now. I'm not.
Blood work was drawn with my regular non-dialysis Dr. yesterday and yes, things are off abit. My BUN and creatinine (the two most important indicators of kidney health and uremic poisoning) are elevated. But, they are the. same. exact. numbers. as they were when I was doing dialysis 24/7 a month ago.
In talking to the Dr. it appears that I do in fact need dialysis. Those numbers are not at healthy levels. However, it's also glaringly apparent that the type of dialysis I'm doing (amount and time-wise) is completely a shot in the dark and useless.
So, we start over. Find a new team. the hard part is there are few PD clinics in the area. We've worked with both groups in the Phoenix area, we've interviewed the guys here locally, so now we look to Nevada. We will be traveling up for a couple days, hopefully soon, to interview three doctors and the two PD clinics. Hopefully, one will be a good match. If not, I just don't know.
**ETA: We are not looking to relocate to NV. Sorry for the confusion. We are located within a reasonable driving distance to the Las Vegas/Henderson area (about 80-120 miles each way). We have been told that the hospitals in Vegas are pretty awful, so we are looking more at Henderson. But only as a commute, not a move. Hope that helps :)
I already know that getting a transplant will be 6-10 years off, if even possible. So the goal has to be to stay as healthy until then as possible. The problem lies in the there is money to be made in the medical field. Dialysis supplies alone cost us $37,000.00 per month. I would think that for that kind of money, the care behind it would be a wee bit better than it is.
So, the plan for now.
- Restart dialysis tonight as usual.
- Interview some new doctors
- Interview new clinics
- Make some solid decision about moving to a new team
- Stay healthy
- Not let the frustration overwhelm
- Figure out how to gracefully remove myself from the current group, when all I want to do is rip some heads off and stomp them into mush.
I'd ask that you be praying for us through this. Going back to MT is impossible. It has to happen here. Period.