Divorcing Duke

I quit working there back in November, and now I am symbolically leaving their kidney transplant program.

I have now officially had my 1169 days of “waiting” on Duke’s transplant list transferred to the medical center that’s in the big city in the southern part of the state. Given the average seven-year-wait for B blood-types at Duke, having zero days accrued leaves me with little chance of getting a second call from them.

The wait may only be slightly less on the new list, which I’ve been trying to get active on since October 2009 due to their presumably shorter wait-times (that have grown in the interim). But Duke lost me in recent months with their aggressive game of blame-the-patient. Blame me for the insurance problems that prevented me from receiving a transplant back in March. Blame me for my lack of civility with a surgery intern following my January surgery.

[Redacted additional details that can have a life on Facebook. Why risk completely burning bridges with Duke?]

I’m extremely disappointed that I will not be getting a kidney transplant at Duke.

I am somewhat optimistic that I’ll be getting one somewhere else soon* enough.

*soon–Any day now or another 2-3 years…who knows…


Also, I am not divorcing Davita just yet. Too much stress involved in changing. I was given my time to vent. I hope I was heard. Now I will just hope for the best.

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Divorcing Davita

I’m home an hour early this evening, having had Davita take me off treatment prematurely. On the paper I have to sign that says I wanted to be taken off, I gave as my reason that I had zero trust in the staff and needed to find either another shift or another facility. I’m leaning towards changing facilities and wondering just how quickly a dialysis facility that’s only a few blocks away could get me in for at least a trial run. Its run by the rival dialysis chain, and I have no evidence that it’s any better. But I must try something else. I need a change of scenery. I need a change of personnel. I don’t see how it could be worse. They’d surely be extra attentive and friendly in the short-term, I’d like to hope.

I could list all of the reasons why my current facility sucks, but, without proper substantiation, I’d be opening myself up to a lawsuit. They didn’t nearly kill me or anything that severe, though I know people who could make such claims. I’m just looking for place that, perhaps, is professionally run. That’s a lot to ask with this business. But the bar is so low right now, that another facility will have to at least seem better initially.

What a pain the ass, though. Like I really want to spend my free time looking into changing treatment places again.

I’ll look to my last post about nocturnal dialysis from last July. That place had the same management, so one can just extrapolate and assume similar bullshit was flung around here.

Dueling transplant lists

Everyone at Carolinas Medical Center is so much nicer than folks at the big med center in Durham. The choice of where to have my three years of transplant waiting counted would seem like a no-brainer, considering it is still true that wait times are slightly less at CMC. But there was that call a few weeks ago back in Durham.

Within a week, I should be active at CMC, and then I’ll have to make a decision.

Leaning towards Charlotte at the moment.

Raw follow-up

That was a bit unhinged. But, guess what? I am completely overwhelmed and exhausted, and there’s not an ounce of relief in sight. So I vented in here, as I am prone to doing. And I’m sure I’ll do so again. And maybe I’ll do it a lot. If it seems like a sudden turn toward the pathetic, you just need to sift through years of blog/journal entries to find plenty more of the same (not that I’d recommend or wish for anyone to do so).

I spent an hour earlier doing yard work. I applied mulch to some dying emerald green arborvitae. These two pathetic trees should be really easy to take care of. But I’ve just about killed mine

I spent a good deal more time trying to deal with the insidious vine plant that dominated my front yard. I used to think it was cool, how it would grow so fast, and I could wrap it around stuff–a couple of years ago. But since I’ve had zero energy for yard maintenance, the vine plant has taken over everything. It’s swamped my baby crepe myrtles and my azaleas and my juniper. You won’t find one yard in an inhabited Durham home with such ridiculous overgrowth. So I just started pulling and pulling and pulling. And now I can see the other things that I’d actually like to take care of. But I have no idea how to kill this stuff and make sure it doesn’t keep growing.

The vine plant is an apt metaphor for life. I can pull away a ton of it, but there’s still a ton more that I can’t rid of it, and it’s just going to keep growing back. I don’t see how I will ever get a handle on it.

Back to last night’s rants…I’d only publicly write about my bitterness towards Duke Health if I had an alternative, and I do. Before the recent near-transplant mess, I had been on a path to getting on the Carolinas Medical Center list, and my assumption was that I’d inevitably get transplanted in Charlotte. I’m ok with going back to that plan. I have been going to Duke for healthcare for nearly 18 years, and overall, I’d say they haven’t gotten it right. And so, at my greatest moment of need, I’m so disappointed that they’ve put the burden of worthiness of care on me. Can I cope with what’s required of a transplant patient at Duke? I cannot get the thought out of head, “Where was this interest in helping me cope for the past 18 years?”

Why have I remained a patient at Duke so long? Why wouldn’t I? Who would not trust one of the premier medical centers and health systems in the world? There were lots of blips along the way, but as my kidneys failed and I approached dialysis and transplant lists, I’d be wise to live close to Duke Hospital so I could easily take advantage of that world-class care.

Boy, do I feel like a moron. I had no idea that I wouldn’t get to actually go to “Duke Dialysis”, that I’d be sent to facilities that sorely lack professionalism, skill, and empathy. I had no idea that the transplant team operated in a bubble outside of the rest of the health system, and that I’d be treated like an uneducated, undisciplined child. I had no idea that there’d be no dialysis options that could easily co-exist with a full-time work schedule. I had no idea that there’d be no one capable of meeting my mental health needs as I dealt with this end-stage renal disease, that social workers will be more concerned about you having post-transplant rides to the hospital than emotional support over the years you wait and your body deteriorates and life is a daily struggle.

Then again, I also thought it would the best possible job to work at Duke in the years of kidney decline. If I was going to have an IT career doing something I was good at but had no passion for, at least, if I did it at Duke, I’d be helping my alma mater, and it would surely be a fantastic place to work.

So wrong. And after five years, I so could not stand not being able to make the most of my potential in my field, to have my expertise routinely ignored, and (to be honest) to be paid far less than I thought I was worth, I took another job. While struggling to balance dialysis and chronic fatigue and chronic pain with working full-time, I decide to switch jobs. And I went to a global company, with far more complex systems, with a far more distant management structure, and, as I’ve discovered, a similar lack of appreciation for my very specific expertise. It probably doesn’t seem like I’m busting my ass, and I wouldn’t think I was from an outside perspective, but I am. I am, because I have no choice. I simply don’t know how I’d survive if I weren’t working.

I know people who have overcome far more. They’ve had physical challenges I cannot imagine. They’ve faced death and the sense that their dreams would not be attained. And, yet, they’ve persevered and survived and thrived.

I don’t see myself becoming one of those success stories. The best people will be able to say about be someday is, “At least he’s not suffering anymore”.

I know this is not the tone that anyone wants to see in my blog. No one wants to read this. And I certainly don’t want to be a burden.

Raw reasons why I’m pissed off

1. Neighbor was playing drums at 12:30AM.

2. Duke Transplant is concerned that I have articulated a mistrust of their organization. Perhaps that has something to do with the various episodes of incompetency I experienced back in January after my nephrectomy. Without addressing any that prior incompetence, they want me to pledge not to yell at an intern to get the hell out of my room. And they want me to be remorseful about having done that back in January. And they need me to meet for a second time with a medical psychologist so that my “coping” skills can be assessed. It’s funny that I’ve been on the Duke Transplant list for 3 years, and no one has been especially interested in how I cope with things until now. And they’re not the least bit interested in how I cope with dialysis that is administered by incompetents. Or how I cope with a demanding full-time job in addition to dialysis and the physical drain that accompanies dialysis. Or how I cope with the very idea of living a life that is stagnant. They just want to make sure that I don’t get fed up with a snotty, soulless intern to the point of verbally eviscerating him. I signed a document saying I won’t. But I certainly couldn’t pledge not to get royally pissed off. I’ll just need to vent in a less confrontational method, like shooting off an email to Dr. Victor Dzau, Chancellor of the Duke University Health System. I did that once before, and it actually resulted in a positive response.

Even the expression of these frustrations puts me at risk for being deactivated from the list. I cannot simply say what they want me to say, play their game. Frankly, they have made so many mistakes that they should be trying to win my favor. But they’re not.

3. I learned Java briefly 15 years ago. I wish I knew it in 2011. I haven’t really learned anything in years. I wish I were a coder. I detest myself for failing to, time and time again, acquire any new useful skills.

4. I want to fix my front yard. It is an unkempt jungle. But I don’t know what to do. And I suspect that 15-20 minutes of yard work will exhaust me.

5. I want to fix my back yard. Another mess.

6. I want to fix up the inside of the house. A hopeless mess for four years and counting.

7. I want to exercise some muscles and joints in my spoiled shell of a body, which has had no useful activity in over three years.

8. I can’t go anywhere without a sense of self-loathing cropping up. Go to Whole Foods–everyone’s better than me, in so many ways. Go to Fast Food–I can’t afford to put that crap into my body. Go to Target–no one sees to go there solo; that’s a couples trip. Etc. There’s nowhere that’s safe. And home makes me feel the worst. I don’t fit in anywhere. This is the problem of a 15-year-old. A 35-year-old has either gotten past this or has resigned himself to such a life.

The Call: The lingering mess

I figured I would write at some point about what went on behind-the-scenes with Duke and CIGNA last Wednesday. However, after five exhausting days of aggravation and fact-finding, I can’t write a definite narrative of what happened. Writing a detailing accounting would not be helpful to me, and it might actually be harmful to someone who goes through something similar, because I doubt my specific circumstances come up a whole lot.

No one did anything that warrants litigation. Above all else, what would have prevented this situation would have been a robust single-payer healthcare system. I don’t live in a country that wants that. Failing that, I could have used a winning lottery ticket that would’ve enabled me to dump of cash into Duke Health’s coffers.

The system just sucks.

Now, all I have the energy for is putting one foot in front of the other so that I can do a passable job at work, make it through dialysis treatments each week, and complete the steps that both Duke and Carolinas Medical Centers are requiring of me to be activated on their respective transplant lists. For a few very frustrating reasons, I’m not active on any list at the moment. So, right now, there is zero chance of getting a call.

But once you get reactivated at Duke, you should be really close, right? No. It’s not a simple serial list. A kidney came up that was a good match for me, and I was still the third alternate. If anyone can present me with evidence (not an anecdote) that my “average” wait at Duke is no longer 3-4 years but “soon”, or that it will be far shorter than 2 more years at Charlotte, I’d like to know.

I expect that most readers will not understand how I can be so dismissive of having an optimistic attitude. I remain hopeful, but hope is not the same as optimism.

So that’s it, for now. Back to being aggravated because I’m at dialysis. I could list a dozen things that I’m hating about right now. I won’t. But I don’t know how I can do this two more times this week, and indefinitely after that. Of course, if I ever make it a habit of skipping the dialysis, the transplant centers will knock me off their lists.

The Call: Addendum

Yesterday:

10:30AM – No emergency approval. There’s a kidney on ice that will need to go to someone else. And I will try to forget that these past 10½ hours happened. Except I’ve got to deal with a bunch of insurance bullshit now that I previously unaware of.

Addendum, according to a conversation I had today with my health insurance provider’s transplant case manager:

2:00PM – My health insurance provider approves a kidney transplant for me at Duke.

Two weeks ago, I posted a cynical screed about transplant case management. I ignored my transplant case manager’s several attempts to contact me. I was suggested, but not mandated, that I have a conversation. However, had I contacted him prior to yesterday, I’d probably have a kidney right now. (If I had had $110,000 on me yesterday, I also would probably have a kidney right now.)

This doesn’t make what happened any less convoluted. I’ll fill in the details some other time, but I am exhausted by the subject for now.

The Call

12:30AM – At 11:45PM, I received a call from a Duke transplant coordinator. I thought I had seven years of waiting on the Duke list. My best chance for a transplant has been to get on the Charlotte list, transfer my three years of waiting on Duke’s list, and maybe get a kidney within another two years or so. And that would reset my waiting time at Duke to zero, thus the seven-year average waiting. Tonight, though, I got a call informing me that I’m the third alternate for a kidney that is ready for transplant NOW.

Just like that. I’ve got from “there’s no way I’m getting a transplant anytime soon” to “I may get a transplant TODAY”.

I may get a new kidney today.

But probably not. The top two matches would have to have developed some new antibodies since their last blood work, or they’d have to have some other sudden health issue, in order to be disqualified.

But I got a call, and it’s insane, and I don’t know how I’ll get any rest between now and 5am. Around 5am, that’s when I’ll get a call telling me whether or should come in or not.

I won’t post this now. My mother and my sister know. No sense in getting anyone else’s hopes up.

1:05AM – The coordinator called again. The surgeon wanted to confirm something I had said earlier, that I was ok with getting a kidney from a donor who was positive for Hepatitis B. There’s a 5% chance of contracting Hepatitis B in this case. I could’ve sworn I once had a vaccination for Hepatitis B. Apparently, this does not change the chance of contracting it. But I’m going to assume this is not a deal-breaker. I’ll have a couple of hours to change my mind, presumably, should I discover that I ought to be worried.

But, again, this is all probably moot.

2:15AM – I’m going to try to sleep. I’ll go ahead and post this and update it later. No one is reading this in the middle of the night anyway…

3:00AM – Not asleep yet, but I was just jolted by Herman’s barking. It was coming from outside. I had left him out–about an hour ago–and completely forgotten about this! Given that I don’t have an enclosed fence, I never let him out unattended for more than about 3 minutes. I just let him out at night in drizzle for an hour. And I have no idea what he did with himself. He must be a bit confused, although he must have also enjoyed himself since I didn’t hear any barking for an hour. Ok, sleep. I should get a call in a couple of hours, and then this episode will mostly be all over.

5:30AM – called just to be told not to eat or drink anything, which I already haven’t done since 7pm. Will get another call in 2-3 hours. No further explanation provided. Back to sleep.

8:45AM – Got a call at 8:30. They told me to come on in. That means I’m next. Scrambling to plan for a week/a month away from home. Will head to the hospital shortly. Will update here if I’m really going to be wheeled in.

9:45AM – No kidney. No insurance approval. Waiting on “emergency approval”. Stunning to realize that I really was/am “next” and all set to get a kidney. But it’s a no go at the moment. I’m still at home.

10:30AM – No emergency approval. There’s a kidney on ice that will need to go to someone else. And I will try to forget that these past 10½ hours happened. Except I’ve got to deal with a bunch of insurance bullshit now that I previously unaware of.

Saturday night post-nephrectomy blogging

An anti-climactic (probable) final post on the .nephrectomy. I’ll identify this as a phone post so I have an excuse for the brevity of and overall win-par quality of these thoughts.

It has been over 7 weeks since my left polycystic kidney was removed, and it does NOT feel better to have this kidney out. For whatever reason, I now feel the weight and obstruction of my right kidney more than ever. Moving around increases pain. I feel constant fatigue. I do not have a coping strategy for this. How do I manage these ongoing symptoms, dialysis, and working full-time? I have no idea. Not a clue.

STFU

I could tolerate dialysis a lot better if everyone would just STFU. Staff–go find a break room if you want to socialize. Or socialize with sign language.

Turn off the TVs that no one is watching. How hard would that be? No more patient in that chair? Turn the effing television off. I can hear the ones that are 25 feet away. It’s maddening.

These are issues of basic decency in patient care. They were issues when I started off on dialysis 18 months ago. Management was cold to such concerns then. I’m sure they’d seem laughable if I raised them now.

I need to get work done while I’m here. I must get work done while I’m here. Even if I didn’t, I’d want to relax. I’d want to sleep. I’d want to read. Frankly, it doesn’t matter what I want to do here. I just want it quiet. How hard is that?

That’s one thing Duke Hospital does right. You wind up in the hospital and have to have dialysis in their dialysis unit on the seventh floor, and you’re going to get a quiet, professional environment.

Not here. NEVER here. I hesitate to mention the name DaVita, because, from what I’ve gathered, a Fresinius unit is not a pleasant place to have dialysis, either.

Dialysis units are places where diseases slabs of tissue are hooked up to machines. Insurance and Medicare pay lots of money so these slabs of tissues can be kept alive. But it would eat into DaVita’s profits if comfort and mental well-being were taken into account.

I am trying to make this work. For the most part, I show up three times a week and stay for my whole treatment.

But it never gets any better. It always sucks. And it infests my entire life. Not a day goes by that I’m not thinking about it. It’s either a dialysis day, or the next day is a dialysis day, or it’s Saturday, and I put enormous pressure on myself to not vegetate all day while I have a break.

Physically, I feel ok at the moment. I should be trying to get work done. But concentrating here is nearly impossible.

And, I swear, I’m gonna pop the next person, tech or nurse or doctor or anyone, who asks, “Have you considered home dialysis?”

I won’t be doing any form of home dialysis. I am stuck right here indefinitely.

What’s worse than the experience of being here right now is that I know I am failing badly in attempts to figuring out anything else that defines who I am at this point in time. I’m not doing anything else of note. I have absolutely nothing interesting to say about my job. And I don’t do anything else. I don’t make anything, build anything, play anything, or help anyone else do anything. I make myself get out of bed each day so that I can go to work, go to dialysis, tend to my pets’ basic needs, and tend to my own basic needs. When I’m not doing one of those things, I’m exhausted. Even if I had anything else to do, I’d be too tired to do it.

I went off on a tangent there. I’m done.

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