Dialysis flashback

On one hand, it doesn’t seem helpful to spend any time thinking about such things. On the other hand, whenever I shot this 80 seconds of video, it was my intent to share it so I didn’t feel quite so alone in the nightmare. I found it on my laptop a couple of weeks ago, stuck it on YouTube, and, now, here it is.

I forgot when exactly I shot this. It matters now. Whether I was doing the 3-3.5-hour shift or the overnight shift, quiet was rare and fleeting. Two years of this. Just posting for the record.


Keep the government off my Medicare!

I got my Medicare card in the mail today, so it’s officially MY Medicare, too.

Long story short…

Since most people who wind up on dialysis aren’t working, it’s expected they’ll get on Medicare, which every person with ESRD (End Stage Renal Disease) is entitled to. A bunch of good-for-nothing victims, leeching off the government teat, that’s what they are. I’m not sure why those limbness, barely-there dialysis patients I had the pleasure of hanging out with for two years didn’t just get jobs.

Technically, my Medicare, if I opted for it, would’ve gone into effective the third month after I started dialysis, so November 2009, since I started dialysis in August of that year.

I didn’t opt for it. I’ve had good insurance with last job and my current one. It didn’t make sense to pay for Medicare premiums that I didn’t really need. Medicare would pay 20% of costs. The remaining 80% would fall to the private insurance.

However, Medicare pays for all hospital stays, so, I suspect, had I opted for Medicare, I might have actually gotten that botched transplant at Duke in March 2011, after all. Instead there was that insurance snafu, and I waited another 3 1/2 months, receiving a kidney down in Charlotte.

Anyway, many months back, I found there was a problem with Cigna paying my bills. They assumed I was on Medicare, and I kept telling them I wasn’t. I was told it would all be cleared up. But it wasn’t.

30 months after that initial eligibility date, I should have signed up for Medicare, because that’s when my private insurance plan reverts to paying just 20% of costs. Medicare is then primary. Again, most people would’ve already signed up for Medicare 30 months earlier, so this would not be an issue.

I have to be on Medicare. So don’t f*** with my Medicare.

Ok, long story still moderately long.

Bullshit like shingles

Obviously, I’m not feeling so well physically right now. I’m not really going to blog about the details. From what I keep reading, it could get worse. I’m a bit worried when I read that people experience residual pain for weeks or months even after their blisters are gone. That’s all I need, a new source for chronic pain.

Here’s what’s upsetting me right now. Like all the other times I’ve had serious medical issues, from extended illnesses to surgeries to the entirety of my two years on dialysis, it is not that I’m being exiled from some happy, thriving existence, and I’ll be yearning to “have my life back”. The episodes are unwanted delays in trying to figure out what my life is going to be. I don’t want to have “my life”, as it was as of Friday, back. When I went on to dialysis in August 2009 (and, really, going back to the turn for the worse I had in February 2008), I was not desperate for a kidney transplant so that I could “be myself” again or “get back to doing the things I love to do”. I was desperate for a kidney transplant because I was desperate to create a fulfilling life for myself, and I could not afford any delay.

I feel like many, may years of my life have been lost years, but perhaps none as much as those 3+ years between February 2008 and June 2011. All I did, ultimately, was survive. I got through it.

But after I received that kidney, there has not been a day when I’ve felt as if I’ve recovered from that. My body has remained damaged. It has remained unhealthy. The things I have control over, I haven’t been able to seize control of. The things I haven’t had control over have been significant. In the end, for the last 14 months, again, I just feel as if I’ve survived.

This has been so hard to articulate, because it is not consistent with the attitude we expect from people battling–that’s an unfortunate word…how about surviving–illness. (I’m not a fan of the fighting metaphors. But that’s a topic for another time.) I’m sorry that I don’t fit that heroic template.

But I still haven’t figured out how to live. I haven’t figured out what I enjoy. I haven’t figured out where I fit in. I haven’t figured out what my contribution to the world is supposed to be. And, most painful of all, I haven’t found love. Spare me the talk of learning to love yourself first. A great many people have been helped in their search for themselves and their place in the world by finding a life partner.

My point…and I meant to arrive at this much quicker…is that I have such a ridiculous pile of stuff to figure out, and I’m already operating at such a deficit, that I just can’t afford bullshit like shingles.

When I give the above a quick read, I know it won’t make much sense to anyone.

Let me try to put this another way…

No, forget it…I really cannot figure out the words to make the point I’m trying to make. I suspect this comes out as, and usually does come out as Woe is me!. If that’s the message you take out of this…you know what? So be it. It’s my blog. I’m trying to work through stuff, and lot of that stuff is WOE.

New Kidney

It really hasn’t hit me yet. Developments unfolded quickly. Late Sunday night into Monday morning, I had just a couple of hours to figure out a month’s worth of pet-sitting (or at least take a first crack at it), figure out what to say to my manager at work, and pack some clothes and essentials…while waiting the two-and-a-half hours for the call that would either confirm that a matching kidney awaited me or crush my hopes for the second time in three months.

Then when I received the amazing news shortly before 3AM, I had to get on I-85 and get to Carolinas Medical Center. The drive was a bit of challenge, given that I had taken an Ambien minutes before having gotten the midnight call from CMC. Fortunately, if you can manage to stay awake for three hours after taking an Ambien, you’ve pretty much managed to squash its power. This didn’t mean I wasn’t exhausted, though. It helped to have some adrenaline from the prospect of getting a new kidney.

Until 9AM or so, it was still only a strong prospect and not a definite reality. I needed to have bloodwork, an EKG, and a chest x-ray analyzed to ensure that there were no red flags that would disqualify me from receiving a transplant.

And then there was the matter of learning the nature of the donor’s health. It seems the unfortunate man in his mid-30s was an obese alcoholic, and he succumbed to his alcoholism. While his liver may have been shot, his kidneys were apparently in great shape.

Oh, and his wife told the doctors that he had had tuberculosis at the age of 1. It was treated and seemingly eradicated from his body, but there would be a very small chance it could be transmitted via the kidney. There are risks with any donated kidney, though. Getting off dialysis and possibly improving the quality of my life immensely trumped the possibility of getting a little consumption.

So my surgery began around 10:30 and lasted 3-4 hours. The blissful grogginess one hopes to have upon coming out of the anesthesia did not materialize. I recall my sensations being overwhelmed and shivering, while it seemed I was being rushed out of the operating room to my room in the ICU. I remember begging someone to slow down…

Coincidentally, as I was just writing about coming out of the anesthesia, one of the anesthesiologists came into check on me. Normally, this would be an uneventful interaction, but I actually had a question for him. Was what I had experienced a normal reaction? He described various behaviors that can occur during “emergence” that are actually normal, and the team didn’t have much of a reaction because there was nothing to be done, that the symptoms would (and did) fade.

Eventually, my cognition returned to a calm state. Unfortunately, I was informed that I’d have to undergo four hours of dialysis. My potassium was high, and this needed to be corrected. So…one more dialysis session. But it was the least-stressful four hours of dialysis I’ve experienced, from the needle-sticking to how my body felt during the dialyzing to how I felt afterwards. Further proof that dialysis need not be torturous, and that dialysis clinics basically suck at what they do compared to what is possible.

I didn’t mean to tell such a detailed story. I actually have a dozen or so complaints about how CMC has handled things. They’re similar but not quite as disturbing as what I experienced at Duke, perhaps only because I’m used to crumby hospital experiences by now.

All in all, I’m feeling ok. Pain is well-controlled. This surgery was not as damaging as my January nephrectomy. Back then, they were extracting a ten-pound deformed monster kidney. (Revisit the picture if you dare). My insides looked like a bomb had exploded after that PKD kidney was removed.

By contrast, the new kidney, like any healthy kidney, is about the size of a fist. The incision isn’t too big, and there was plenty of room for it. Transplanted kidneys always get inserted into the lower abdomen, as opposed to the middle of one’s back. In my case, my original PKD kidney’s location is likely way too scarred for a new kidney to go there. For many people with other conditions where this is kidney failure, no kidneys are removed, so there needs to be a place for the third kidney.

So, I’m sitting up and typing this. Pain is manageable. I’ll probably be here until Friday or Saturday. And then I’m in Charlotte for another 3-4 weeks because I have to followed closely by the CMC nephrologists. A month away from home. A month away from my old pets. This will be difficult. I welcome visitors!

As I said earlier, it really hasn’t sunk in yet. First of all, there are no certainties YET that the kidney will continue to be accepted by my body. Modern anti-rejection medications make this unlikely, but it’s still a possibility. My hemoglobin is way down, so I won’t experience a sudden surge of energy in the short-term. There is the strong possibility of unpleasant side effects from my many medications over the next few weeks and months. However, in short order, I think my mind will realize that I’m done with dialysis, which will very satisfying, and I think new-found energy will gradually make itself apparent.

One last observation:
This procedure has an enormous price-tag. I’m fortunate to have a ridiculously excellent insurance plan that will cover just about all of it. But I can’t help but wonder why they skimp on the ginger ale. They’re giving me Shasta. Seriously…Shasta?

I will probably spend a lot more time blogging about random things, since I’ll simply have a lot of free time on my hands. I might even, gasp, read some books.

It hasn’t sunk in yet, but I’m sure I’ll write about it here when it does.

Toastie Soundtrack #63

First, it’s time to retire my ridiculous song-of-the-day post titles. That was a remnant of the defunct Toastie Radio. Actually, all of these songs have been a part of my mental soundtrack at some point in my life, however insane that may seem to everyone else. So, I’ll just refer to these posts with the title of “Toastie Soundtrack” going forward.

This bombastic piece of the Last of the Mohicans score has been in my mental soundtrack since 1992. It was supposed to motivate me to have the courage to talk to a girl. As typical of that time in my life, I kept quiet for awhile, unable to make the simplest conversation. And then, in a moment of delirium, I’d open the floodgates and pour out emotions that had no place in a conversation between 16-year-olds who barely knew each other. And, honest to God, I truly didn’t know any better.

Some of you who know me probably don’t think I’ve gotten much better over the years. Truly, I have. But also, unfortunately, I’ve found myself regressing over the last few years.

I’m a pod person who gets hooked up to a machine three times a week. I’m often told, “Most people can’t work full-time and do dialysis”. No shit. I can’t do it. I mean, I am doing it, but barely. It’s not a routine I do. I stumble to the finish line of my week each and every week, barely conscious of how I did it. I feel so broken down, so overloaded with physical and mental stress. I manage to get through because I don’t really have a choice.

I’m 35, and I need to be living my life, not slogging through it half-dead. And so I attempt to do more than work and go to dialysis. This involves some degree of socializing. And, like I implied before, I used to be terrible at any sort of socializing, gradually got better over the years, and now have regressed because I can’t figure out for the life of me what I bring to the table in any sort of relationship. I feel like I need to take far more than I’m able to give. And I cannot, in good conscience, try to make a connection that will have such a dynamic.

Where am I going with this? Nowhere else, right now. Just rambling. When I say ‘no comments’, I often forget to set that flag, so I won’t bother. Comments or not, I’m just venting because it’s mid-Sunday, and I would like to get through the rest of my weekend in some productive manner.

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.

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.

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.

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.

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.