Lose 10 pounds in one day

If you’ve had a polycystic kidney growing in you for a few decades, just get it removed. As I did two years ago, I shall share a photo of the kidney I had taken out. My surgeon emailed it to me today.

I do want to mention for the record that Duke’s Dr. R. is a fantastic surgeon. If you need any sort of abdominal-region surgery–and, geez, I sure hope you don’t–get him to do it. Both my nephrectomies were laproscopic, and it’s incredible how he can get these massive things out through some a small opening. (I suppose there’s that miracle of birth thing, but I’ll have to settle for laproscopic nephrectomies). My incisions have healed great each time. It’s also remarkable that he can get this giant mutant kidney extricated from the other organs. Everything was all twisted up in there, and he got out the kidney with everything else left unscathed. Just as importantly, Dr. R. is the kindest, most calming doctor I’ve ever had. Some of his colleagues are not so blessed, and I’d have gone out of my mind after both surgeries had Dr. R not reassured me that I was healing well and that I was doing all I could to help myself as a patient.

Anyway, so, as was the case last time, this was a massive kidney as a result of the innumerable cysts that had spawned over the years as a result of PKD. They didn’t weigh it, and there would be no way to know for sure how heavy it was, since cysts had to be ruptured to shrink it to pull it out.

So I’m about 12-15 pounds lighter now than I was three-and-a-half weeks ago. I attribute 10-12 pounds to the kidney and 2-3 pounds to a decreased appetite while recuperating. On top of that, I had lost about 7 pounds in the two months prior from a change in diet. I don’t have any before-and-after photos. Well, that’s not true, exactly. I have photographed my gut, but I’m not up for sharing those pics at present. Maybe if I ever manage to develop abs, I will show off before-and-after-and-after photos.

As the Bruce Springsteen lyric says, my clothes don’t fit me no more. That’s a horrible reference for me to make, since Tom Hanks’ clothes don’t fit him in Philadelphia because a virus is ravaging his body. But it is a way for me to work in a plug for my neglected Top 379 site (#151: Streets of Philadelphia). And, it is accurate; my clothes don’t fit me no more.

One of many reasons the Top 379 has ground to a halt has been the proliferation of Meat Loaf that I’ve hit at this point in the countdown. #146 is going to be Meat Loaf, and I’m not motivated to post it. [I have actually posted it now. Is Nothing Sacred. Good song.)

HOWEVER, and, gee, aren’t I so clever, I am going to post something that looks a lot like some sort of grotesque meat loaf.

Behold, my last native kidney

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Nephrectomy day 2 wrap up

That was an especially fun four hours. Coughing causing agony. Dr. “C” continues to infuriate. I decide I must sit up to deal with coughing no matter the pain. Eventually stand up to get a change of gown. I have densitized myself to the rawest sharpest pain. Chest xray. Don’t know result but apparently one taken after surgery showed possible lung collapse and infection. Saw this in my online records. No one told me. But given more painkiller. I just hiccuped without seeing death.

And I’ve looked at thr surgery site. Two harmless looking holes. Large mass I’ve carried around for over 20 years is gone

Nephrectomy fun

Was intending this just for fb, but mobile phone app limits updates to x characters.

Don’t want to overshare tmi with tmp but fb can be a useful tool when not wanting to answer same questions multiple times. Though i may not be up to being interactive.

Surgery to remove remaining huge grotesque polycystic kidney was successful yesterday in that the kidney is gone and there were no major complications. However, pain management has not gone well. I have a huge inflamed cavity that feels like a bomb blew up. Any movement impacting torso or abdomen is potentially excrutiating. May finally have a new solution to manage this.

Never actually got a room. Went from noisy, chaotic recovery area to a more isolated recovery room that is usually quiet. Nurses have been a mixed bag, from amazing to awful. Duke is, as always, a mixed bag of competence, which is frightening considering duke is a top hospital in the world. My surgeon is awesome, i must say.

I wont get out of here too quickly since i basically lost a day due to bungled pain management. Maybe friday evening but saturday seeming more realistic.

Must stop writing and try to sleep, since ive got a dark quiet room for only who knows how long

Blogging blitz

Herman 2012.12.09
2012.12.09

Even though I have not followed through on any sort of blogging renaissance, I think will undertake the task of blogging today to break up the monotony of house clean-up. “Clean-up” is not really an apt term. It’s more like get-house-chaos-level-one-peg-lower.

I have only this one full day for get-house-chaos-level-one-peg-lower and then small bits of Monday and Tuesday, before I head to the hospital Wednesday for the nephrectomy and, then, presumably, many weeks of being unable to do anything about the house chaos level.

My kidney pain subsided last weekend and was gone for a week, but it’s back today, likely a result of trying to push my bed six inches the other day. Large polycystic kidneys don’t enjoy being stretched by heavy lifting.

If I do follow through on some more blogging today, possible posts may include:
– New storm door!
– New back door!
– 15-year-old kitten pics of Aremid and Zellouisa!
– Recent pics of Mr. Featherbottom!
– More about the nephrectomy!
– Space heaters
– Potpourri for $200

Kidney chronicles

Not blogging much. Have certainly cut down on the health posts. But I’ve documented the kidney chronicles fairly comprehensively…so…

The right polycystic kidney that’s scheduled to come out in 16 days is raising hell one last time, a bit like Glenn Close rising up out of the bathtub. It’s reminding me in the most acute way why it needs to be disposed of. Probable cyst burst. Pain. Not quite kidney stone pain. I’ve had both, so I think it’s cyst pain, since I can actually get up and walk around.

But here I’ve been looking forward to this surgery lately for reasons of mental wellness and vanity. Psychologically, I’ve wanted this third kidney surgery (following one nephrectomy and one transplant) so I can be done with polycystic kidneys.* I’ve wanted the second ten-pound mass removed from me so I can drop ten pounds, and so if I look pregnant, it’s because I’m fat and lazy.* To be reminded that this kidney has also been fucking hurting me for 20+ years gives me reassurance that I’m not just having an elective surgery. I need this done in every way.

However, I didn’t really need this reminder. I’ve got shit that needs to be done in the next couple of weeks. I’ve to wrap up some stuff at work. I’ve got to figure some important things out. (They must be figured out in the course of the next couple of weeks. Not “must”. It would be nice.)

Anyway, so glad I shared and had a chance to use a Fatal Attraction metaphor.

* I also have liver cysts, which are a byproduct of PKD and which will only get progressively worse over time and wreck their own havoc on my body, but I will worry about that later.

Did I mention…

that I’m scheduled for a second nephrectomy on December 12?

No, I didn’t. I’ve been chronicling my kidney adventures so meticulously these last several years, but I just kept putting off a post about this. I had actually gotten this set on the calendar a couple of months ago. I won’t write a whole lot about it now. These blog posts have that footer “You might also like…” and the posts are supposed to be somewhat related to the current post, but they sometimes appear to be random. I saw an old nephrectomy post…and NO, Chrome, I do not mean “lumpectomy”. (“Nephrectomy” now added to dictionary.)

I had SO much fun the first time around that I’ve wanted to do it again. (Summary…the nephrectomy and its aftermath were more grueling than the transplant.) Key difference, I hope, with the second time around is that I won’t have those pesky dialysis treatments to complicate matters.

I can honestly say that I think I’ll lose 10 pounds before my birthday. (Just a quick refresh for anyone who loves gross things…this was the kidney they took out of me back in January 2011…remember it’s polycystic, so it’s much larger than yours.)

Anyway, so there’s that.

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.

THE CALL PART TWO

Literally, this is what I writing shortly before 11:40PM tonight…

Just a vent before a scheduled 5-day workweek.

Dear Universe, please engineer a situation that provides me with a donor kidney from the Charlotte area ASAP.

This doing hemodialysis three times a week and working full-time is getting really old. Every week is just a game of survival. Thriving is not an option. I’m maxed out in what I can do. The last prime years of my life are evaporating.

Even getting the call from Charlotte doesn’t solve everything. I got to avoid rejection. I’ve got to avoi…

Well, I’ve got to avoid infection. I’ve got to cope with a bloated face indefinitely. But all things I’m ready to do right away, and I got that call from Carolinas Medical Center, and now it’s just a two hours wait to see if I make the three hour drive.

This is stunning and ridiculous and amazing and…I’ve got a lot to do….

Will update this thread as time allows…

12:53 AM – OK…basically packed. Contacted potential temporary pet guardians and sitters. And now waiting. Waiting and hoping this is not another dress rehearsal.

Unable to truly digest the risks and fears and benefits involved in this procedure. I imagine I will do ten hours of thinking on the three hour drive down, should I actually make that drive.

1:14 AM – WAITING…BBC World News overnight…riveting…

1:25 AM – BONUS PET PICS!!!

Aremid 2011.06.25 3

Herman 2011.06.25

1:56 AM – Morbid curiosity has set in. I am reading the Charlotte news web sites. There have been a couple of tragic deaths in the last 24 hours. Waiting is excruciating. I know that a false alarm will not be the worst thing in the world…

2:20 AM – No call yet. 10 minutes until the estimated call-back time. Either it’s good news and I load up the car along with Herman and his stuff so I can drop him off at a friend’s, and I head out of here for a month…or my heart sinks and gut contorts, and I try to figure out how to absorb the disappointment….2:22 AM….

2:50 AM – OFF TO CHARLOTTE!