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.


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.