So, some positive things about having my new b-positive kidney that I’ve enjoyed the last few days:

  • Zero dialysis
  • Restaurant Diet Coke*
  • Chocolate brownie*
  • Not having to take pills with every meal
  • Lots of peeing (hadn’t realized how much my peeing had decreased over the last few months/years) TMI?
  • Zero post-dialysis feeling-like-crap

* Stuff high in phosphorus that I was supposed to avoid while on dialysis

Off to my first post-hospitalization nephrology clinic visit in the morning…

Light Wikipedia reading

I’m being held hostage by a thermometer. It read 99.2 earlier, but now it reads 99.5. Do I look up the HTML symbol for degrees? No.

So if I did happen to be experiencing an episode of rejection, this would be mean what exactly? Let’s see

Acute rejection may begin as early as one week after transplantation (as opposed to hyperacute rejection, which is immediate). The risk of acute rejection is highest in the first three months after transplantation. However, acute rejection can also occur months to years after transplantation. A single episode of acute rejection is not a cause for concern if recognized and treated promptly, and rarely leads to organ failure. But recurrent episodes are associated with chronic rejection (see below).

Acute rejection occurs to some degree in all transplants (except those between identical twins) unless the immune response is altered through the use of immunosuppressive drugs. It is caused by mismatched HLA, which are present on all cells of the body. There are a large number of different alleles of each HLA, so a perfect match between all HLA in the donor tissue and the recipient’s body is extremely rare.

Tissues such as the kidney or the liver which are highly vascularized (rich in blood vessels), are often the earliest victims of acute rejection. In fact, episodes of acute rejection occur in around 10-30% of all kidney transplants, and 50 to 60% of liver transplants. Damage to the endothelial lining of blood vessels is an early predictor of irreversible acute transplant rejection.

Yada yada yada…

I popped some acetaminophen a short time ago…let’s see if it’s helped…99.4…maybe I’ll just go to sleep and be back to my usual frigid 96.9 in the morning…

Oh, and when I posted the pic of my surgical bandages, which did for no good reason in the first place, I actually didn’t realize that the incision curved downward and was much bigger. It is not a pretty sight. I promise I will not post that.

I miss my pets…

And what am I going to do with the rest of my life…that’s the big question…assuming my temp doesn’t hit 100, I need to figure this out…it’s time…

This has been a ridiculous past week. Like I’ve been saying, I would be positively ecstatic, but the downside to experiencing rejection is actually so much worse than horrible dialysis routine that all I can muster is a gingerly optimism. (Can gingerly be used as an adjective? Indeed, it can.) Yes, a gingerly optimism….

99.2°. Good enough…

Big Gulp

Big gulpI feel like there’s a bit of pressure to come up with a post filled with post-transplant gravitas. I should be writing about the extraordinary circumstance of having received a kidney transplant and how life has some grand new meaning. In time, perhaps. For now, I can only take a day at a time, as I took a day at a time while I was on dialysis. There’s still a lot of recovery to do. The feeling of well-being I hope to have soon is elusive for now.

However, in terms of how my body is reacting to the kidney, I’m doing just fine. My body has been fooled into not rejecting this new alien organ, and that’s what we want.

I left the hospital yesterday afternoon and will spend the next few weeks at my father and stepmother’s outside of Charlotte, as I am required to check in at a local nephrology clinic for labs and follow-up care twice a week for three or four weeks until I am permitted to go home and transition to a transplant clinic there (yes, the big D.)

There is plenty of follow-up to be done for the rest of my life. My body could reject this kidney at any time– today, next week, three months from now, or ten years from now. There are dozens of restrictions and guidelines I’ve got to follow to reduce the chance of rejection, and I’m sure I’ll reference most of them in here over time, because, well, some of them are going to be annoying. I say this not because dialysis was in any way preferable to having a transplant. I’m just saying that the transplant has not been a cure. It will be an ongoing challenge to keep my working kidney in working condition for as long as possible.

I’m feeling ok, generally, given what my body has been going through. There is a lot of pain from the surgical site, so I’m not moving around much. Any moving around usually needs to be followed by extensively reclining and stillness. I’ve felt the same ill effects from having had a good deal of anesthesia and painkillers that anyone who’s had major surgery knows all about.

Every time I feel a little warm, I’m a little nervous, because any temperature of 100 degrees means I’ve got to call the transplant clinic, because my body may be rejecting the new kidney.

Pills pills pillsAnd then there are the pills. Some of these are pills I’ve been taking for awhile. Some of these I have to taken temporarily to ensure I don’t acquire virus/bacteria/fungi X, Y, or Z. Some of these I have to take for as long as I have the kidney to ensure I don’t reject it. Miss a pill and lose the kidney is not outside them realm of possibility.

So, there’s the Day 6 on My Transplanted Kidney update. I know there’s a chipperness lacking in this post that one might expect I should have right now. Remember that I’m 150 miles from home and my pets for roughly a month, and I don’t feel so well. This should all change in time. I mean, it’s really, really awesome to have a new kidney. And I’m sure I’ll write about that awesomeness more soon.

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.

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.

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.