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.

Nephrectomy and aftermath summary part 2

I’m writing this from my regular dialysis facility. My friend C whom I’m staying with was nice enough to drive me from Apex all the way here this morning. The 10:30 time works much better today than my usual 3:30, and I’m glad DaV could accommodate. I requested my most-trusted tech, to minimize the potential for any issues. I was in control of the conversation of how much fluid we should take off. There’s no definitive answer, since we just don’t know what my body’s baseline will be for another few days or weeks. For now, I’m having 2.0 liters taken off, given I feel very bloated, my BP is a bit higher than the low readings I’ve been getting used to post-surgery, and the nurse hears a small bit of fluid on my exhales.


Part 1 | Part 3

Saturday, 1/22, 6pm – I leave Duke Hospital.

6:20pm – My father, stepmother Janice, and I arrive at the Rite Aid on Broad and Guess. It’s pharmacy closes at 6pm on Saturdays. I am flabbergasted. Apparently, many other local pharmacies shut down at this time, too. I had hoped to hit Costco by 5:30, but the check-out delays prevented that.

6:35pm – We head to the Rite Aid off Hillsborough Rd in Durham. I had stopped going here years ago due to lousy service. I don’t remember exactly why they were so bad, but I recall how it was amazing how bad their service was considering how many people they’d have milling around back there.

I was in too much pain to go in with Dad, who brought in my prescriptions, including one for a controlled-substance painkiller, and my prescription card. He came back shortly after explaining there was no problem. Everything was in stock, and we should return in 20-25 minutes.

We went to Kroger to pick up a few things, and this took 20-25 minutes. We went to the drive-through. At this time, the train-wreck of poor Rite Aid service begins. First, we’re told it will be another 15-20 minutes. Dad explains that his son just had surgery, and we were told my stuff would be ready. Rite Aid says they’ll get it right away.

Then Rite Aid says that they are out of oxycodone, my principal painkiller. They have a few, to get me through 3 days, perhaps. We are livid, considering Dad was told that everything was in stock. Since this is a controlled substance, I cannot simply pick up the remaining pills in a few days. Nor can I simply have the doctor call in or fax in a new prescription. I’d have to physically obtain a written prescription from the doctor, which would be a little difficult given the next day being Sunday and with me staying in Apex after that. We ask where the closest pharmacy is that has the medication and will be open. There’s a 24/7 Walgreen’s by Southpoint. It’s not too far, except Dad is tired, doesn’t know the area, and doesn’t like driving at night. I curse Rite Aid out a few times, but we decide on the Southpoint option.

7:00 – 7:30pm – Dad and Janice drop me off at home. I get to see my critters. I pop some pain pills. They program their GPS for Walgreen’s at Fayetteville Street. After they leave, I look at my Rite Aid receipts. They processed my prescriptions against my old Duke prescription benefits instead of my new ones. I did not get my prescription plan discounts. What should have been about $40 in meds cost $180. Now I need to return to Rite Aid at some point to try to straighten this out.

(I meant to just write a summary of events, but this incident deserves it’s own write-up, and I’ve got more time and less discomfort typing than I had a couple of days ago.)

9:30pm – Dad and Janice return from their South Durham mission with the meds. I hobble into my bed, where Aremid joins me. I take my nighttime cocktail of pills, which are guaranteed to get me asleep shortly, and they do.

Aremid, Healer, yet again

Sunday, 1/23, 8am – I awake after a good 9-10 hours of sleep. My petsitter has come to do all the critter tasks. Dad and Janice arrive soon after. I have peanut-butter-and-jelly for breakfast.

8am – 2:15pm – I relax in the living room, watching some Modern Family, 30 Rock, and Real Time With Bill Maher, and getting in some overdue snuggle time with Herman. I have a Jimmy John’s sub for lunch, which is tasty and goes down fine, but may have been a bad choice, in retrospect.

2:20pm – sleep – Dad and Janice drive me to Apex, where I’ll spend the next few days with the S’s. Pain remains controlled, but I am feeling increasingly bloated and queasy. I am not able to eat much at dinner. Bowels are on strike.

Monday, 1/24, 10am-2pm – I awake from another restful night of sleep. I don’t remember if I eat anything. But the bloat and queasiness are joined by nausea, and eventually, I reach a tipping point.

I vomit up roughly 72 hours of food and drink. Fortunately, C gets me a bowl just in the nick of time. I produce quite a colorful jambalaya. This is no a pleasant 5-10 minutes.

I feel a bit of relief. But I am also feverish.

I call the number that my release instructions tell me to call–the main Duke number–and ask for the transplant coordinators, who are listed as my contacts to reach out to. The transplant department is confused as to why I am calling them, since I did not receive or nor offer up a transplanted organ. I am annoyed that I received poor instructions. Nonetheless, I leave a message on my transplant coordinator’s voicemail.

Then I call my surgeon’s office, where I reach the surgeon’s kind and helpful assistant. She takes down my symptoms.

My surgeon calls me a little while later. Without hesitation, he instructs me to go to the emergency room. I ask if they’ll know he’s sending me. He assures me that they will. I’ve been to the Duke ER about five times, and four or five of those times have been downright miserable, due to the extremely long wait times and lack of coordination and communication between departments.

C is able to arrange childcare and generously drives me all the way from Apex to the Duke Hospital.


And that’s all the recapping I feel like doing right now. Far more detailed than Part 1, I’ll need to do a Part 3 at some point soon. But I don’t want to think about what’s in the past right now.

An all-too-brief nephrectomy followup

image

Successful surgery.

Some difficult times post-op at Duke Hospital, Wednesday through Saturday. Detailed a little in Facebook. Lots of pain, and scary amounts of unexpected incompetence. Will detail in here at some point.

Home in own bed tonight. No oxygen-monitoring machines or interrupting phlebotomists. Pain managed as long as I am still.

Aremid, as always, the healer…

Stuff circa January 12, 2011

Dating. Noting to add here. The topic enters my mind every day. I thwarts any potential enthusiasm. I could not even string together three words to a woman I might be interested in merely beginning a conversation with. I wonder if 35 was a strong magnet that accelerator my descent into myself to the point where I will soon fit the conventional wisdom’s definition of the loner. I have a very honest, blunt, occasionally humorus OKCupid.com profile that should appeal to someone. Fair enough, it does, on occasion. Women pushing forty with kids and women who selectively read my profile will tend to thing I could be someone fascinating for them.

Housekeeping. I have not neat back from them this week. I left a voicemail today and a website message tonight. I stressed that my parents were visiting next week, and that I was having surgery, and that it would be so fantastic if I had strikingly clean home to present for the first time, almost ever. Perhaps they’re not too excited about taking on the screwed-up-single-guy client who had the nerve to ask if his dishes could be done even though that’s not on the official price list. Do they realize what heroes they might be too me if they can add some sparkle to my cat-urine-themed pad? If I don’t here back from them, I don’t think I’ll have it in me to start a new search for immediate housekeeping help. Mom, Dad, and Stepmother will see a grotesque abode, and my recuperation will be complicated by constant anxiety. Should I get the cleaning service after all, the remaining clutter will still prompt judgement that I want no expression of.

Dialysis. Dialysis is so hard. It never gets easier. Working full-time on a new job where you are expected to tackle important tasks and keep you dialysis schedule…this is hard. This is draining. This is a purgatory. My life won’t get anywhere as long as I’m going to dialysis. This is just truth. There’s no way around this reality. It doesn’t help matters when I leak blood after being taped up. It doesn’t help matters when the techs around at 7:00 spend their time bashing the other techs and the management It leaves me feeling that, any day now, I’m going to be leaving in a body bag.

WorkI’ve got a 1-on-1 with my manager tomorrow, the first since shortly after I began this position. I’m nervous. I have no idea what he thinks of the job I am doing or what he expects me to be doing. I am too afraid of saying the wrong thing to press these issues. I don’t want this cloud of awkwardness hanging over my job. But I don’t want to rock the boat. I need the job.

Metablogging I’ve made a small effort to write more about my health over the last couple of weeks. I have done this in part because I will be a session panelist at a conference this Saturday. I shall say more tomorrow or Friday…or after the fact. I was invited to this conference because of this blog, and so I could discuss what it’s like to blog about my health condition. I doubt I will spend much time preparing, and I don’t even know how I would go about preparing. I plan just to be relaxed and blunt with my answers when the time comes. It will either be an hour of enlightenment or pained awkwardness, but then it will be done.

Hidden perils of dialysis! Big surprise…

I’m not even going to watch this. So how bad is it? My chances of leaving treatment in a body-bag tomorrow are better than my winning MegaMillions, aren’t they?

This is why I need a kidney, like asap. I’ll be sending out a desperate plea sometime soon. There are all sorts of annoying holiday-time news stories about kidney donations. Like the MegaMillions, I’ve got to be in it to win it, so if I don’t beg for a kidney, I’m not going to get one. Ugh…I really don’t look forward to doing that…

Visit msnbc.com for breaking news, world news, and news about the economy

Bad kidney

bad kidney good kidney
Above is my latest poor artistic rendering of one of my polycystic kidneys and a normal kidney.

I am cranky tonight because my left kidney will not stop aching. Stronger painkillers do I need.

This kidney has been a pain in my side…and my back…and my gut…for a good two decades now.

The good news is that the left kidney is coming out in less than a month. I’ll be having surgery to have it removed, a nephrectomy. The talented surgeon doing this thinks he can do this laproscopically, though it seem like it will have to be some magic trick. He said he can use various instruments to shrink it to pull it out.

So this is the good news. In the meantime, this kidney seems to be wanting to remind me how much discomfort it can cause.

This has gotten me in a pretty rotten mood, since, as I rambled earlier, I’m off from work now for the rest of the year. I should be relaxing.

Just venting….

When the only one who’s got your back is you

I told my nephrologist that I didn’t think anyone at dialysis really gave a damn about the problems I’ve been having at treatment, thought not exactly in those words. He responded that he takes issue with this, that they’ve been trying things that just haven’t worked.

Would it really matter if I told him about the charge nurse who laughs at me when I bring up an idea or observation?

Would it really matter if I told him how his colleague shows his concern by turning his back on patients in the middle of conversations?

Would it really matter if I told him that, when I sink into my hellish 60-90 minutes of treatment that no one comes around to try to see what has happened to my body that wasn’t happening early?

What does he want? Thanks for keeping me alive, doc. Though my life is slipping away from me day after day, month after month, I’m still breathing, and that’s something.

I’m sorry if I have higher expectations for my treatment than you do.

Dialysis puzzle

Two hours into my three-hour dialysis treatment, I am not experiencing the profuse sweating and freezing that occur just about every time I am here. There have been a couple of exceptions, and there have been commonalities to these dialysis treatments that I have tolerated.

1. It’s not third-shift. Coming in earlier in the day, when I have come from having been sleeping at home as opposed to from having been at work, has seemed to make a big difference. Due to the holiday, I came in at 11 this morning.

2. I was stuck by S, who is rarely the tech who puts me on the machine but, when she is, it’s accompanied by a much smoother treatment. It’s difficult to imagine that she sets up the machine differently in such a way that NO ONE ELSE does that makes for a better treatment, or that she puts the needles in my access in such a dramatically different way.

3. I’m wearing a hat. Just a ball cap. I’m pretty sure I’ve worn one before, and it hasn’t made a difference. It may be more relevant that I didn’t shower before I came here. Maybe my there’s something about the soap or shampoo I use, and the dialysate reacts with them?

Now, if going in at 3:30 in the afternoon after a workday is resulting in bad treatment, just going in first shift is not as simple as it seems.

I don’t know if it will be more problematic work-wise to arrive late as opposed to leaving earlier.

I don’t know if I’ll feel well enough following an early-morning treatment to have a productive day at work.

It would certainly be nice if the nephrologists actually knew precisely why I feel better in these rare instances.

Blunt

My kidney is killing me right now. Something must have happened with one of the cysts. I probably have an infection, for all I know, which would explain why I’ve felt especially sick for the past week-and-a-half.

Are you gonna see the doctor?

Since no one has specifically asked me this, I’m going to answer this in the bluntest of terms.

Which doctor? My nephrologist? The dialysis doctors? And what are they going to? Maybe, at this point, they’ll check blood and urine to see if there’s the possibility of an infection.

Whether there is OR NOT, they’ll probably be inclined to suggest antibiotics. But there’s usually not an infection. So then I take antibiotics that are probably doing more harm in the long run since I don’t need them.

And my main concern is THE PAIN. What to do about that? The only medications that will actually help THIS level of pain will make it impossible for me to go to work.

Your health is more important.

No, my keeping a job is more important, because, if I have no job, I have no income, and I become a full-time dialysis patient.

But if you don’t get treatment…

Yes, I’ll probably go to my primary care NP tomorrow, because she’ll actually talk to me for more than 60 seconds. But, my point is, it’s probably NOT an infection, and, therefore, there is NOTHING anyone can do about it.

When it all comes down to it, for 20 years, I’ve had this big-ass kidney that has been hurting me to varying degrees, and there has been NOTHING that I can do about it. I’ll be on a new job, and there’s nothing I can do about it. I’ll be on my prom date, and there’s nothing I can do about it. I’ll be trying to study for exams, and there’s nothing I can do about it.

And it tends to put me in a really shitty mood.

Everyone thinks, oh, there’s David–he’s always so down and depressed. He should talk to someone. Etc.

There is not an anti-depressant on the planet that will help me. I need to be rid of this pain. I really tried to explain this to nephrologists and mental health professionals over the years. I haven’t received the help I’ve sought and, yeah, it has pissed me off that I have to deal with this.

I am not Mohammad Ali or Michael J. Fox or, quick, who had cancer and beat it? I’m a terrible spokesperson for disease, but I DON’T cope with it. I DON’T thrive in spite of it. Oh, oh, I’ve got it…


Patti LaBelle has diabetes…but it doesn’t have her!

I’ve got this watermelon-sized kidney, and IT’S GOT ME! It’s got me, and it’s had me…for maybe 6,000 or 7,000 days… (I’ve got two, and they’re both massive, but the left one has given me 90% of the pain.)

But you’re gonna have one removed, right?

I might very well have gotten it taken out by now, actually, if I hadn’t taken the new job. Or, if HR at the new job been less threatening about sticking to my start date, I’d have negotiated a later one so that I could get this nephrectomy done. I’ve got a surgeon lined up to do it. Unfortunately, I didn’t get in to see him until the end of October.

Now I am waiting to hear back from his office to learn when the earliest I could have this surgery might be. Then there is the matter of informing management at the new job. I have mentioned this, that I will need this surgery. Management is supportive, but it’s certainly not convenient. I’m just ramping up, and should be ready to be a productive member of the team by January…just in time to take a month off?

So you’re gonna wait?

No, I don’t think so…I don’t know…I’m not sure. The one thing that’s really stopping me is the thought that, for all the difference not having this left kidney might make, I might be trading it in for a worse predicament by way of increasing the criticality of dialysis.

Dialysis has been horrible lately. I can go into that again some other time. But it has not been getting any better. I have actually felt better, overall, the weeks I have skipped one day. My kidneys are still making lots of urine. I don’t need fluid removed from me when I have dialysis, unlike 95% of dialysis patients. Once I have a kidney removed, it becomes much less likely that I skip dialysis, and that means tolerating it three time a week no matter what. This is the trade-off I will be making, and, so, it is not a no-brainer to have a kidney removed.

Anyway, that’s my rant for tonight. I did not plan on making such a rant. I was recently recognized as a kidney disease blogger, and I honestly don’t think I provide any useful information to anyone. I only do this because it’s therapeutic, an alternative to having all this frustration just stew inside me.

..

On a personal note, to the individual who recently told me that one’s disease was not as important as the personality of the person who has the disease…you’re not a nice person. I’m just making an informed assumption. I’m probably not a nice person for throwing this in here, since it’s totally off-topic and irrelevant to everyone reading this but you…but you could’ve been so much kinder, and you chose not to be out of some sense of moral superiority. You have my permission to not read anymore of this blog.

Everyone else, this is one of those posts where I shall kindly request no comments. I will assume that someone read this from beginning to end, and that makes me feel better in itself. Thanks.