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.

Yummy: Pics of my polycystic kidney

My doctor thought he had accidentally deleted the pictures of my removed polycystic kidney, but did manage to keep them, after all. I’ll keep them small on here and place them below a cut, and then you can click for full nastiness. Note that the kidney was actually quite a bit larger when it was inside of me. My surgeon had to drain a whole lot of cysts in order to shrink it so it would fit through a two-inch laproscopic opening. Here, it looks to be about eight inches long. When it was inside me, it weighed 8-10 pounds.

The second photo must be a view from the other side, and it shows some cysts that weren’t popped.

Of course, I still have one remaining kidney that looks pretty much like this and gives me maybe 3% of normal kidney function, which is better than nothing and why I didn’t have it removed. Ideally, it will keep working until I can get a transplant, at which time I can rid of it.
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Peritoneal Dialysis and Big Beef and Cheddar

Bad News
My abdominal cavity is such a mess from that nasty, massive, bloody polycystic kidney that used to be there that peritoneal dialysis may be riskier for me than for others. If I am interested in doing it, I may need to wait six months or so for scar tissue to heal.

Good News
I found some episodes of 30 Rock from Season 1 that I hadn’t seen.


Cat litter and surgery recovery and cat pics

2011.02.13 Aremid on me on couch 08Aremid’s weight is “stable” at 7 pounds and 6 ounces, and since his T levels are stable, the vet has no further treatment course right now. I hate to pay for more blood tests, but I’ve got to figure something out. Even Aremid is doing relatively ok, I can’t deal with his urine output.

A 14-lb box of cat litter used to last me two weeks for two cats, many years ago. Now, a 25-lb box lasts five or six days.

This has been a problem for a long time, but it’s been a huge problem over the last couple of weeks. I’ve needed help with the ridiculous matter of procuring, scooping, and dumping cat litter, and I haven’t been asking for it. For every 25-lb box, there’s buying it, bringing it inside, pouring it, scooping it, and throwing a garbage bag full of it into the trash.

I was given very little in the way of instructions for recovering from my surgery. One clear instruction was to avoid lifting heavy objects, mainly anything over 14 pounds. I’ve now lifted “heavy objects” at least a half-dozen times in the past week or two. This may have something to do with lingering abdominal pain I’m having that isn’t responsive to my pain meds and makes me feel as if my old kidney is still there.

I know the obvious response is that I should’ve asked for help with X or Y. It’s seemed ridiculous, though. Come all the way over here to my house because I need help getting the trash bag into the trash bin. Come to Petsmart to help me buy cat litter. (Oh, there was Herman’s 30-pound bag of food, too).

I’m doing a really lousy job of recovering from this surgery. I keep putting off emailing my manager just to confirm that I’ll be back on Monday, because, I’m wondering if I can really make that commitment.

I never really got the kind of rest I needed.

And now…some recent photos of my excessive-urine-producing cat…resting on me as I attempt to rest…

2011.02.13 Aremid on me on couch 02

2011.02.13 Aremid on me on couch bw 1

2011.02.13 Aremid on me on couch bw 2

2011.02.13 Aremid on me on couch 09

2011.02.13 Aremid on me on couch Herman in bg 04

How to lose 11 pounds in three weeks

2011.02.12 MeI’m still awaiting on the actual photos of my removed polycystic kidney. But I have had enough weigh-ins at dialysis now to guess that my kidney had weighed 8-10 pounds. I’m 11 pounds lighter than I was back on January 18. I’ll attribute the other pound or two to a decreased appetite post-surgery. (Before surgery, I was about 10 pounds lighter than I had been a year earlier and about 20 pounds less than my peak weight.)

I’m posting a photo of myself because I genuinely feel like I look better now than what I’ve seen the mirror over the past couple of years. Comments off, because I’m not looking for validation. This instance of self-validation is fragile enough. (And peritoneal dialysis is supposed to put weight on you, what with the peritoneum carrying around an extra couple liters of sugar water…)

Undisclosed Location

Undisclosed Location 2011.02.04
While Anderson Cooper reports from an undisclosed location so that Egyptians don’t beat him up again, I blog from an undisclosed location because I needed to get away from home. It is difficult to explain why I couldn’t get sufficient rest at home. I suppose I tried to explain the other day. I suppose there’s no need to be so mysterious. I’m at a local hotel. It’s not a very nice hotel. But it’s free of distractions, other than the distraction of my own mind, which simply doesn’t know how to slow down and heal.

I present the mug above because it’s the reality of what I deal with. I could shave, and that will improve things a tad, and maybe I can get a haircut. But only plastic surgery and an unethical dermatologist can fix the rest.

No, seriously, I’m not accepting arguments on this. (Blog comments are off; FB comments I can’t stop. But I’m writing this as a monologue. I’m really not fishing for feedback). I look at my image, and I think, “Aw, shit, this is hopeless.”

There are lots of thoughts swimming around my head related to what comes next. I barely had started my new job before I had this surgery. I’ll presumably be back there within a couple of weeks, and life will mainly consist of juggling that and dialysis. And there will still be several significant voids to fill.

One move I’ve made that may result in some fulfillment has been the purchase of an SLR camera. I’ve thought about taking photography seriously for a long time. In order to really do that, I’ve needed to invest in a better photographic instrument. It’s caused me some anxiety to take the plunge on the purchase. It falls into a broad category of “things I should really consider getting” that include a fence for my dog, attic insulation, a bike, and a new mattress. It’s taken me several days to even open the box. I’ve done that now, and the result is in the super-graphic image above. My goal with this hobby is actually to capture some of the beauty in this world. I will work my way up.

It may seem ironic that I leave my house for rest, but I’m still up at 2:03am. I’ll be asleep soon.

I’ve got a follow-up appointment with my surgeon tomorrow morning. I treat it as a necessary exercise and not a helpful milestone in my recovery. I imagine I’ll first meet with the interns I came to resent. They’ll comment on how well my incisions have healed. They will have no way of evaluating the internal damage and just tell me how this will all take a little more time. And then a few hours later, I’ll go to dialysis, where I’ll just hope, as always, to leave with most of my blood intact and limited episodes of hot flashes and cold sweats. (I think I need to start researching where the post-dialysis hot flashes come from, since no one else will). At least I will follow dialysis by going home to a location that will not have a dog desperate for a walk and cats desperate for food. Whatever I choose to make/bring back for dinner can make a mess that I don’t need to care about. If I sweat through all of my cheaps and covers, I don’t have to care about living with the same bedding the next day.

Perhaps tomorrow I will open two weeks of mail that have piled up. My dear Aunt J sent me a card, and she deserves a reply, but I haven’t gone through my mail yet. Too stressful to do that at home. I will do that here, in my undisclosed location.

An addendum to tonight’s raw, comment-discouraging blog post:

You have successfully renewed the domain for 2 year(s).
The new expire date is 2013-02-06.

I did contemplate not re-upping. There are lots of good reasons why this site is a bad idea for my time and my internet persona. But I couldn’t come up with a satisfactory alternate plan. I saved something like ten euros by opting for two years instead of one. So it will be another two years before I contemplate the purpose and value of this enterprise again.

Nephrectomy recovery catchup

The past week has not been as restful as I had hoped. I spent three days with friends in Apex. I got some good rest there, but I also still had my full arsenal of painkillers.

I’ve been home since Saturday morning, and I really wish I’d checked myself into a hotel.

– Dog expects walks since he sees me home; being let out to walk around for a minute doesn’t cut it; I should not have stopped my pet-sitting visits after last Friday (even though ten days of it really added up cost-wise)

– Dog expects to lie on the couch at all times; to force him off to lead him to pace around anxiously and then return to his place of refuge–the couch; I suppose I need a loveseat, but that’s not happening right now

– Cats are needy–for a different flavor of Fancy Feast, for litterbox cleanup

– Cats and dogs are dirty–I see the work of my housecleaning service evaporating before my eyes; I don’t have the energy to keep up with it

– Preparing food–even when it’s food that someone else has prepared for me, it’s an effort to take it out of the fridge, heat it up, bring it to the living room, take it back to the kitchen, cleanup; this is basic Living 101 I struggle with when I am “well”; every movement of my body causes me stress, and just getting food is exhausting

– Still need to get to dialysis 3x a week; what a drag, normally

– Overall lack of pain relief; my stomach feels like it is going to tear open when I move certain ways that are necessary for functioning; there’s the pain from the surgery; there’s discomfort from my GI system being screwed up; I just want to be lying down all the time

One might think recovery time at home for a week or two would be great. No…it’s really stressing me out.

A and H couch bw 2011.01.31
Damn pets…though they *are* really cute, aren’t they?

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.