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.

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.

Nephrectomy and aftermath summary part 3

Mostly written at dialysis on Monday, January 31
This is just an exercise for me to complete at this point. While at dialysis treatment this afternoon, I’ve completed my Press-Ganey survey that one usually gets after treatment at Duke. I left a lot of “poor” grades along with explanations. There’s no way to right these wrongs apart from sincere acknowledgments that there were, indeed, wrongs. Hospitals and doctors don’t do that. The best they tend to offer is something patronizing like, “I’m sorry if you feel that the care you received…”

[ Part 1 | Part 2 ]

Monday, 1/24, 2:45-10:00pm – Apart from a five-minute initial triage, I’m in the Duke Hospital Emergency waiting room for seven hours. There is no sense that my surgeon has prearranged anything. Given that my condition is not acute, there is no reason to expect I’ll ever be at the top of the list, particularly as the afternoon wears on, and the ER becomes more crowded. I am familiar with long ER waits, but I had been anticipating more of a long wait on the inside. If I have a bed and my painkillers, I’ll be ok. Sitting outside the ER, regardless of the shiny remodeling job Duke has done in recent years, is not conducive to the rest I need two-days post-discharge.

I call my surgeon’s office after a couple of hours, before it closes, and I let the surgeon’s assistant know there has been no knowledge of my impending visit. It seems clear there will be no staff on hand to address the issues specific to my surgery and post-op condition.

Within an hour, I have a visit, still in the waiting room, from one of the interns on the surgeon’s team. I am glad to see him, even though he was the same dick who had told me following my surgery that I was fortunate to be on dialysis since my right kidney hadn’t begun to work and, perhaps, would not work. He tells me that I’ll likely get a chest x-ray once I’m seen, but his cameo appearance don’t speed much along.

10:00pm-3:30am – No visit from any staff for a half-hour. No nurse. ER doc visits at 10:30. Nurse is basically AWOL for the next five hours. Over the next four hours, I am visited by a few very clueless docs and sent for a chest x-ray in a freezing cold area. I am given hints that I’ll be sent home, but my fever spikes–I am convinced by the x-ray visit–and told I need an abdominal CT.

Despite literally hundreds of verifications made and personal declarations given over the years at Duke that I am allergic to IV-contrast dye, my top-notch ER team plans to give me my scan with contrast. They seem annoyed when I tell them of my allergy, which causes anaphylaxis. They openly ponder taking measures to deal with the allergy, and I protest. I’ve had numerous CT scans performed where the doctors would’ve preferred an image with contrast but would not take the risk. Even if corticosteroids are given to counter the allergy, the contrast is known to wipe out remaining kidney function in people with renal failure. (I doubt they even considered this; I’m just remembering this now as I write this.) Finally, they back down, and I just have to drink 900 milliliters of wonderful banana-flavored barium sulfate shake.

So, I had a CT scan, and eventually, I was readmitted and brought back to my old room.

During this whole time, in fact, since 6:30pm, my friend J is with me. He’ll stay all night and not go home until sometime around noon.

Tuesday, 1/25 – This is mostly a continuation of the aggravation I experienced a few days earlier, except I feel much better. I can breathe. I can get up. I can eat solid food. My GI system still isn’t working so well, and that’s the focus of my stay. I have dialysis upstairs. The dialysis unit is relatively relaxing and staffed with quality techs and nurses. But then I wait literally an hour for my transport back to my room. I don’t recall what prompts me to post on Facebook:

There is no end to the incompetence at Duke that prevents me from getting treatment one would expect here.

Wednesday, 1/26 – My CT hadn’t shown anything alarming, so the only think keeping me is a recurring fever. I have to have dialysis again, in order to get back on the MWF schedule that was thrown by my ER visit on Monday. I have more aids to help move my GI system along. I continue to be baffled by oversights that are not such a big deal because I know how to work around them but seem like they’d be spectacularly tragic if they were to occur with a different patient with a poorer prognosis.

For instance, I have been told for several years, particularly since going on dialysis, how critical it is for me to take my phosphate binder pills with all of my meals. This is a given for dialysis patients. Yet, despite numerous reviews of my medication list and numerous reminder by me, the patient, my phosphate binders are never added to my medication list. Whenever I receive a hospital meal, I dig into my own medication bag and grab some pills.

I am absolutely not supposed to take any of my own medications while in the hospital. However, I am told that a pharmacy order takes about an hour. My phosphate binders must be taken *with* meals, not an hour later. Again, I repeat this issue no less than a half-dozen times between my two hospital visits, and the issues remains across both of my stays.

You simply cannot trust Duke to give you the medications you’re supposed to have. Of course, such advice could be fatal to anyone who brings their own meds and can’t remember which ones they’ve given themselves and which ones Duke has given them.

Anyway, I want desperately to get out on Wednesday, and I do get discharged around 6pm.


I thought this third entry in the series would do it, but it seems a natural break, to stop right after my discharge. I’ll write one more entry to get caught up on how recover has been going.

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 8, 2011

Dating I went on a date a few days ago, and it was heartbreaking. It was a stark reminder of why I rarely ever go on a date. I battled for ninety minutes to be funny, engaging, and charming. She often seemed genuinely interested in me. I rattled off feelings about being on dialysis and transplant lists that I hadn’t shared with anyone. I, briefly, had the sense that it was ok that I hadn’t been to other countries, held an advanced degree, read five books a month, or looked like every healthy bike-riding guy who comes into Whole Foods. There were five or ten minutes when I had self-confidence. But later that night, I received the “I don’t think we’re a match” email. Rather than pick myself up, dust myself off, do whatever one is supposed to go to keep functioning, I took the rejection as a gravely-wounding piercing. I did not react as such by choice. This humiliating numbness is a physiological reaction I’ve been getting since I was in grade school. Allow myself a moment of being open to something amazing, and I will inevitably experience crushing agony. This never changes. At 35 and stuck on dialysis, the cumulative weight of all of these rejections is indescribable. I do not know anyone who gets how badly this feels.

Housekeeping I had been so excited that I was finally, after years of thinking about it, going to get a housekeeping service to come and clean up my place. I had been reluctant, in part, for so many years, because I feared that such a service would be unable to do a whole lot without me first doing a hefty bit of pre-cleaning. How can they clean the floors if I don’t remove the clutter? How can they clean the kitchen if I don’t do the dishes? But the same fatigue and paralysis that prevent me from going through a stack of junk prevents me from vacuuming the floor. If I can do the first part, why do I need to hire someone for the second? But I reasoned to myself that there must be services to clean the homes of those who pass away or those who simply live in extreme filth and can’t help themselves at all. My place isn’t nearly that bad. These services must know how to help me. But my original fears were realized. When a rep came by to discuss my options, I was told that, no, the cleaners would not throw anything away. They would not do my dishes. They would not pick up piles of stuff. They’d do cleaning and dusting of areas that were already clear, thus validating my theory that only people who have reasonably clean homes actually hire cleaning services in the first place. I still plan to use the service, but my enthusiasm has most deflated. The phrase “putting lipstick on a pig” comes to mind. I’m going to pay them a couple hundred bucks to make my baseboards shiny. The place will still look like a dump.

Work Let’s assume no one from work is reading this. I am overwhelmed by my new job everyday. No one has told me I am failing to meet expectations. No one has told me I am doing anything wrong. But I just assume that I am. My brain is not up for following phone conversations with a dozen people scattered across the world. My brain wants to engage is problem-solving off in its own space and does not want to be interrupted by endless meetings and endless exercises in documenting what I haven’t had the chance to even do yet. And then there’s the small matter of, everyday, wondering how I will put in a solid effort alongside my thrice-weekly dialysis sessions. My body and mind are exhausted, and there seems to way for them to rebound as long as I rely on a machine to filter out toxins from my body. Sounds like a bad time to have changed jobs! Except my last job was soul-sucking; I needed to move on. I don’t regret taking the new job. I regret that I don’t have 2-3 years of savings so I can just do what most dialysis patients do, which is to go on disability.

Dialysis I had figured out what made me so horribly uncomfortable at dialysis, but I never shared the resolution. First, I didn’t want to dwell on how the medical establishment had failed me. Second, dialysis did not turn into a picnic, and it just didn’t seem useful to comment on how dialysis had become just a little less intolerable. At it’s best, I’ll have competent techs and a quiet, pain-free treatment. But, at it’s best, it’s four hours out of the heart of my day that will cause my body to feel uneven for another couple of hours and fail to give me any noticeable boost in energy or affect.

Metablogging I post the croutons as a reminder to myself of a part of myself that I hope still exists, even if it’s easy to cast it off as foolish and naive–the young, unapologetic romantic. Or something like that. I still mourn Toastie Radio, my attempt in the early part of the 2000s to share the music I liked with the world, which at some points, like then there’d be 40-50 concurrent global listeners, came close to being gratifying. In the end, it was a failure, a colossal waste of time and money…and the currency of optimism, of which I’ve always been short-changed.

I posted an unflattering shot of my gut because I wanted to document the time prior to my nephrectomy surgery. I have profile shots that make that distended abdomen far more grotesque. Then again, those shots may be from 15-20 pounds ago. It’s unfortunate that I can be 15-20 pounds down from my heaviest weight and not feel the slightest bit of accomplishment. I don’t feel anything, because my body is weak and completely lacks agility. I’m a sloth. And I’m clearly not having any success on the dating circuit.

I post about politics as a reminder that I’m thinking about these things. I regret that I can’t write intelligently about these issues. It’s much simpler to just throw up a link to someone who had written something intelligent.

When I write a long post like this were I’m stressing about the consequences of my writing, I must put to the back of my mind the thought of who may be reading this. Family members read this. People solely interested in kidney disease and dialysis read this. Former coworkers read this. (I hope no current coworkers read this). If I worry about how I’m coming across, then I’m writing a different blog. Perhaps one day I’ll have a blog dedicated to a particular topic, and I’ll write it in a professional matter, and it won’t be self-absorbed.

For now, above all else, this blog is a coping mechanism for everything. I am not always explicit about how a given post is meant to be therapeutic. Ideally, I’d be writing more. I’d be writing just like this. Granted, it’s 3:52AM, and I don’t strive to be up at this hour on a regular basis. But the benefit of 3:52AM is the lack of inhibition. I’m just writing what comes to mind, and I’m going to hit the Publish button, and this will be up there in the morning. I can go back to sleep with a far-clearer head.

Due date: two weeks

I am either being courageous and informative or merely grotesque.

In two weeks, a surgery will carve out a little hole near/using my navel to pull out my horribly deformed left kidney that, along with its twin, has wrecked havoc with my life for two decades. In a June medical report, they were described as such:

Redemonstration of markedly enlarged kidneys bilaterally with innumerable
cysts, compatible with clinical history of adult polycystic kidney
disease. Many of these demonstrate increased intrinsic attenuation,
compatible with intracystic hemorrhage. Scattered regions of residual
parenchyma are seen. A large cyst in the inferior pole of the left kidney
(image 56) measuring 6.4 x 6.2 cm demonstrates increased density compared to prior (HU 39), previously measuring 8.0 x 7.4 cm with HU 19.

Additional cysts also demonstrate increased hyperattenuation, compatible
with interval intracystic hemorrhage. Overall, however, the cystic
lesions are not significantly changed in appearance compared to the prior
study. Redemonstration of multiple scattered calcifications involving the
bilateral renal cysts, also not significantly changed compared to prior.
A left renal stone measuring up to 1 cm within the left interpolar region
is not significantly changed. The urinary bladder is decompressed, but
otherwise normal in appearance.

Now, I have officially blogged about the appearance of my bladder.

This report did not mention the full dimensions of the kidney. I know it roughly extends from my lung to my pelvic. That would be about 25-30 cm in length. It’s probably 12-15 cm wide. And then probably another 10-12 cm from its origins near by spine jutting out into my abdomen. Those measurements translate into a mass of somewhere between 3.0 and 5.4 kgs (6.6 and 11.9 lbs.)

So I am hoping to drop roughly 10 pounds with the removal of this kidney.

As for that protruding gut, I have no idea what becomes of it. Will loose skin sag? Will I be lumpy and assymetric, since the almost-as-large right kidney will remain?

I’m sure you’re all looking forward to the AFTER photo…

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…

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